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Archive for the ‘Breast cancer’ Category

Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery

Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery 
Finally! A book about TNBC written by a woman who’s been through it—Patricia Prijatel, founder and editor of the blog Positives About Negative.
  • One of the first books exclusively for women facing hormone-negative breast cancer
  • Author Patricia Prijatel tells the story of her own diagnosis and treatment and includes her full pathology report with annotations to help readers understand their own
  • Describes the science behind the disease and its treatment in clear, accessible prose
  • Endorsed by Medical Advisory Board: breast surgeon Carl Scott-Conner, MD, PHD; pathologist Renee Ellerbroek, MD; clinical trial coordinator Madlyn Ferraro, RN; and health and fitness specialist Rochelle Kirwan, RD

More about the book from publisher Oxford University Press.

Be sure to follow Patricia’s blog for the latest news and resources on triple-negative breast cancer, including updates from the San Antonio Breast Cancer Symposium.

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It has been a long time since I’ve posted anything in the breast cancer journal. My journaling has taken another path – it is not online, and it is not about being a breast cancer survivor. My mother died in August and a lot of what I have been writing about privately describes my journey through grief.

On August 11, 2010, I went to Denver for my check-up with the doctor at the imaging center and my oncologist. The doctor at the imaging center looks at the mammogram and ultrasound results during my visit, so I knew by the time I was on my way home that I was still NED (no evidence of disease). My oncologist wanted me to have another mammogram and a visit with her in six months; after that, my mammogram schedule would be once a year. She reminded me that it was almost five years since my diagnosis, and at the five-year milestone, my risk of recurrence would go down so significantly that it would be about the same as for all other women in my age category.

On my way home from the hospital, I called my family to let my mother, who was out of town for a medical procedure, know that my check-up was good, and Mom was very happy about that. The following day, unexpectedly, my mother died during the procedure.

Now it’s January, and in one week, it will be five months since my mother died, which seems impossible. And a month after that, it will be time for my six-month checkup, the last one before my anniversary, and a month later, it will be March, five years from my diagnosis, and the milestone that has been my goal: stay cancer free for five years.

In the meantime, I am not feeling well – I am so tired, I am not sleeping well, I have headaches, I was not eating right. For a while, I didn’t have much of an appetite. When I did, rather than going back to my  low-fat diet, I began eating comfort food. This week, I brought home bags of fresh green vegetables and am determined to start eating right again. I fluctuate between feeling relief of getting to that five-year mark and the nagging stress of not feeling well and needing one more round of tests before the anniversary to make sure I am still okay.

Things that go through my head, that I try to dismiss:  Why am I so tired – as tired as I was when I had cancer? Because my cancer is back, or because I am grieving and not sleeping well?  What about my headaches? When reading, why do I see “red bed and butter” instead of “rye bread and butter”? Why am I having trouble with my speech? Because I’m getting aphasia, or because I didn’t rest well? Why am I so forgetful? Are these real and lasting memory problems, or is it just stress?

Those are things I wouldn’t admit to my friends, but somehow am okay with posting on the internet where other survivors can read them, because I know you understand what I’m talking about.

Underneath all of this, I somehow feel settled about things. Although I hate it when people say my mother “is in a better place,” I believe that my mother is okay and that she will always be present to me in ways that are more palpable than memory, because she is my mother, and she will not abandon me (a wonderful thing a friend said to me). I believe that I am probably still cancer free and will get through my checkup okay and that the lumps under my arm are from something else and will go away. And if they aren’t gone in two weeks, I will make an appointment to have them checked, as I do with other things that don’t go away. I believe that grief is a non-linear, inescapable process, part of being a human being, and I vow to try to learn from my children, who have lost their fathers, how to live with it with dignity.

And I believe that even if I don’t remain cancer-free, we are all playing our part in the unrelenting and majestic evolution of the cosmos, and I believe in what some people call the communion of saints or souls, and some people call the cosmic consciousness, and, as my sister says, “I believe in the seen and the unseen.” And I hope to learn courage from others who have gone before me.

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Many visitors to this site have arrived here from Google searches asking whether Elizabeth Edwards had triple-negative breast cancer.  I’m copying information here from the Positives About Negative blog.
“Several readers have come to this site by Googling questions on whether Elizabeth Edwards has triple-negative breast cancer. She does not. Hers is responsive to both estrogen and progesterone. In its archives, WebMD has an interview in which Edwards talked about her cancer, its diagnosis, and her treatment.”

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Elizabeth Edwards, RIP

“I have been sustained throughout my life by three saving graces — my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined…..Live daily with hope and the daily effort to have a positive impact in the world.” -Elizabeth Edwards

Elizabeth Edwards Dies of Cancer http://www.webmd.com/breast-cancer/news/20101207/elizabeth-edwards-dies-of-cancer

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I don’t know why it took me so long to discover the Positives About Negative blog by Patricia Prijatel, who writes as a survivor of triple negative breast cancer. Her blog is full of information about this type of cancer.

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http://www.nature.com/news/2010/100330/full/news.2010.160.html

The latest ruling, delivered on 29 March, is the result of a lawsuit brought in May 2009 against Myriad Genetics, based in Salt Lake City, Utah, and the University of Utah Research Foundation, which hold the patents on the BRCA1 and BRCA2 genes. Mutations on BRCA1 and BRCA2 are responsible for most hereditary breast and ovarian cancers. A woman who tests positive on Myriad’s BRCA test has on average an 82% risk of developing breast cancer in her lifetime and a 44% risk of developing ovarian cancer, according to the company.

The patents, which Myriad has actively enforced, grant the company the exclusive right to perform diagnostic tests on the two genes. The company charges over $3,000 for its BRACAnalysis test. In 2009, Myriad’s revenues from molecular diagnostics grew by 47% to $326.5 million. BRACAnalysis accounts for the lion’s share of those revenues.

The plaintiffs in the case included individual physicians and patients as well as the Association for Molecular Pathology and the American College of Medical Genetics; they were represented by the American Civil Liberties Union (ACLU) and the New York–based Public Patent Foundation. The American Society of Human Genetics and the American Medical Association also filed briefs in support of the plaintiffs’ challenge to the patents.

The plaintiffs called the patents illegal on the basis that they restrict both scientific research and patients’ access to medical care and that patents on human genes violate patent law because genes are “products of nature”.

Complete article http://www.nature.com/news/2010/100330/full/news.2010.160.html

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I found more sketches and notes I made just before, during and after I had radiation treatment and have posted them in the section The Parts I Left Out.

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http://livingbeyondbc.wordpress.com/

Living Beyond Breast Cancer has a new topic on their blog called “fear of recurrence.” The first post in the series is called “An Appointment to Worry.”

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Living Beyond Breast Cancer posted on Facebook a link to Laura Tasheiko’s breast cancer journal. I love the paintings and the way she processed her journey with them. I plan to spend more time there.

I also loved this post, “The tyranny of positive thinking.”

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This week, I’m going to see a local doctor about the pain, numbness and tingling in my shoulder, arm, and hand on the side where I had surgery and radiation.  On the 28th, I have my three-month visit to the imaging center in Denver for my mammogram and ultrasound. Later that day, I will have blood work and see my oncologist. The first week in February, I see a dermatologist. I scheduled that visit during one of my “Everything New or Different Must Be Cancer” stages, and, even though I’m over that for the time being, I decided to keep the appointment. I never expect to have any anxiety around these appointments, but sometimes it creeps up on me.

In the meantime, I’m doing some stretching, using ibuprofen occasionally, and applying heat once in a while when my arm becomes too painful and that seems to help for a while. I intend to ask for more help with lymphedema prevention, including instructions on stretching, exercise, and massage.

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I am having more pain in my left shoulder, numbness down my arm and tingling and numbness in my left hand and fingers.  It isn’t as painful as it is annoying. The more painful my shoulder is, the more numbness I have in my hand.  In the area where I had radiation treatment, I have a lack of sensation in my skin, but pain underneath in my muscles, especially under my arm and around my shoulder-blade.  I sometimes have a sharp pain when I reach for something over my head. Other times there is no pain, just a stretching sensation in my skin.

I thought it might be temporary, but it is happening more often and lasting longer. 

I’m wondering whether this is a typical side effect of radiation therapy or if it’s a sign that I’m developing lymphedema.  I’m also wondering if I should have been doing some range of motion or other exercises to prevent this, and whether exercise will help prevent it from getting worse or even make it better. No one has given me any information about this. But, no one told me that self-massage would prevent the fluid buildup around the surgery site that makes it difficult to get a good ultrasound reading until after it was already a problem. I don’t know why, since it is simple and works in a few weeks.

I will talk to my doctors about this when I see them in January. In the meantime, I found this November 2009 article online:

Many Breast Cancer Surgery Survivors Report Lingering Pain

Women at the greatest risk for chronic pain were ages 18 to 39 and had undergone breast-conserving surgery, or lumpectomy, in which doctors remove only the tumor and some surrounding tissue. Other risk factors for persistent pain included radiation therapy, which is directed at the breast area to destroy any remaining cancer cells after surgery.  There are several reasons that breast cancer survivors experience pain such as nerve damage or injury from the surgery or radiation, but in the future, nerve-sparing surgery may help take the sting out of this persistent pain, according to study authors. . .

Another doctor adds. . .

“Pain decreases quality of life and should be a cause to reach back out to the surgeon or radiologist and ask for a referral to a physical therapist for intervention,” says Kneece, who is also the author of “Your Breast Cancer Treatment Handbook.” “Most pain can be addressed and reduced or eliminated.”

And this – which I suspected, and so have been doing some stretching exercises on my own:

Physical therapists can help women develop a plan to reduce or eliminate pain. In general, range-of-motion exercises after surgery can help reduce the risk of pain, according to Kneece. “If not performed, there will be a fibrous tissue which forms in the area restricting motion and causing pain when the arm is stretched,” she says.

I want to find out if this is early lymphedema, or if it may be the results of fibrous tissue. Either way, it is getting worse, but it sounds like it can be addressed:

“If one notices increasing swelling accumulating in the affected limbs or trunk, it is likely an early warning sign of lymphedema and she should be evaluated by a fully certified lymphatic drainage therapist,” says occupational therapist Cathy Kleinman-Barnett, a lymphedema specialist at Northwest Medical Center, in Margate, Florida.

“The additional fluid buildup can cause abnormal sensations such as tingling, aching, [and] heaviness, and should diminish or stop with range-of-motion exercises, stretching, and massage to stimulate lymphatic flow,” she says. “There is help available, and women should not have to live in pain.”

This article was in CNN Health

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I’m adding links to blogs written by women about their experiences with breast cancer, living with and beyond this disease.  Just finding and reading these blogs is another journey for me. It will take some time, because I don’t want to hurry through it. I want to get to know these women and what they went through.  If you have a blog and it isn’t listed here (yet), please contact me and send me the link.  I’m looking forward to getting to know all of you.

At the same time, I can’t help but feel overwhelmed by the number of women experiencing just this one type of cancer. There are far too many of us.

I appreciate all of you sharing your lives with the rest of us.

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Resources for Women with Triple-Negative Breast Cancer from Living Beyond Breast Cancer  

Order Guide to Understanding Triple-Negative Breast Cancer, created by LBBC in partnership with the Triple Negative Breast Cancer Foundation (download brochure, order brochure).

“This publication offers helpful information, whether you have just been diagnosed or you are moving forward after treatment. Learn common terms your doctor may use and what might increase your risk for developing this type of breast cancer. Get the facts on treatments, and find out how to deal with myths about this diagnosis. If you have finished treatment, sort through post-treatment concerns, including follow-up testing and managing the fear of recurrence. Read the experiences of real women affected by triple-negative breast cancer and tips from healthcare professionals.”

“Read our publication on Triple-Negative Breast Cancer: Treatment Update and Tools for Healthy Living with Lyndsay N. Harris , MD, and Suzanne Dixon, MPH, MS, RD (transcript, audio recording). Hear the latest news on triple-negative breast cancer from medical and nutrition experts. Dr. Harris gives an overview of the biology of triple-negative breast cancer and explains how it differs from other types of breast cancer, who is at high risk and targeted treatments in the pipeline. Ms. Dixon explains how a low-fat diet and vitamin D may affect your risk of recurrence.”

“Listen to an audio recording on Triple-Negative Breast Cancer: Understanding Treatment Options and Post-Treatment Concerns (audio recording) with Ramona F. Swaby, MD. Learn which groups are affected more often by triple-negative breast cancer and why. Dr. Swaby discusses available treatment options including a review of the latest research in targeted and biological therapies, how to manage follow-up care and the importance of participating in clinical trials to further research development.”

Living Beyond Breast Cancer

Triple Negative Breast Cancer Foundation

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More about Carolyn Scott Kortge, author of  The Spirited Walker: Fitness Walking for Clarity, Balance, and Spiritual Connection

Recent post – Spirited Walking and Pheasants

 

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Here’s a post from Awful Library Books that’s worth reprinting here. Beware of outdated information on cancer in books that have been on the shelf too long in your small town library – which might be the first place lots of us go to find information when we get a diagnosis.  Check the publication date and remember — there is a lot of new information on the causes, types, and treatment for cancer.

Helpful Cancer info!
November 20, 2009 · 12 Comments

You can fight cancer and win
Brody
1978

Medical topics that are obviously dated REALLY chap my MLIS, folks! I know Jane Brody is a respected health writer, but she would not depend on information from the 70’s. I am sure those of you old enough to remember the 60’s and 70’s can remember that a cancer diagnosis almost equaled a death sentence. This kind of material needs to be weeded pronto! I would like to suggest that everyone in public library drop ‘cancer’ into your catalog search and see how many “old” things come up! Holly and I find WAY too many floating around out there in library land to be very helpful.

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We must rethink a system that disproportionately rewards medical testing and procedures rather than thorough and complete histories and physical exams.

On Being a Difficult Patient

Rarely do difficult patients get to weigh in on why they are “difficult”—and rarely do doctors get to explain to difficult patients why it’s difficult to care for them. In the first of these essays, patient Michelle Mayer, a research professor in North Carolina with a chronic autoimmune system disease, tells why she eventually became a difficult patient, and how it helped her get the doctoring she needs.

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What do you think about the new recommendations on mammograms and self-exams? 

The recommendation of the U.S. Preventive Services Task Force (USPSTF) is that women over 50 should have an annual mammogram. Previously, it was women over 40.  We used to be told to do monthly self-exams. The panel is not recommending self-exams.

What do you think? Will you continue to do a monthly self-exam? 

“The net effect of the new guidelines is that screening would begin too late and its effects would be too little. We would save money, but lose lives,” says Stephen Feig, MD, professor of radiology at the University of California at Irvine and president-elect of the American Society of Breast Imaging.

Breast Guidelines Wipe Out Years of Progress

(A group of breast cancer experts) say the guidelines would represent a major setback, wiping out decades of progress.

“Deaths from breast cancer have dropped by 30% since 1990, when mammography screening beginning at age 40 became more widespread,” says Daniel B. Kopans, MD, professor of radiology at Harvard Medical School.

He says the task force relied on studies with methodology flaws that underestimated the benefits of mammography.

“Numerous [well-designed] studies have proven the benefits of annual mammograms beginning at age 40,” Kopans says.

“The guidelines tell women in their 40s that they can go back to the 1950s when they had to wait until a tumor was too large to ignore, and then go to the doctor when there was no longer any chance of a cure,” Kopans says.

Breast Screens’ Benefits Outweigh Risks

Feig also took issue with USPSTF’s reasoning that for younger women, annual mammograms carry a risk of harm, chiefly anxiety and false positives, that could outweigh their benefits.

“Think of a smoke detector. Do you want it to go off only when the house is half burned down or put up with the fact that it will sometimes go off when there is smoke in the kitchen?

“You’re going to have some false positives, if you detect cancer early,” when it is most curable, Feig says.

Source

Of course, the recommendations were for women who had not had breast cancer. Women who have had breast cancer should follow the recommendations of their doctor.

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The Spirited Walker: Fitness Walking for Clarity, Balance, and Spiritual Connection, by Carolyn Scott Kortge, gives me guidance about walking and breathing. Kortge was a presenter and a workshop leader at the Life Beyond Cancer Retreat at Miraval when I attended two years ago. I’m not a fitness walker, but I turn to Kortge’s book for help and inspiration. Walking might be the one best thing that I can do to improve my health, reduce my risk of recurrence, and increase my sense of well-being.

This morning, I re-read the chapter, Breathwork for Walkers, which explains how controlling the pace and depth of breathing can increase our stamina and help us relax by tapping into “a channel of energy that reaches deep into the body instead of ending in gasps at the neck.”  When we breathe right, “fears disappear. Breath spreads through the body like a soothing breeze.” 

When I returned from six weeks of radiation treatment and felt fear and panic intrude into my day, I grabbed a jacket and headed out the back door to walk it off. Sometimes I drove into town and walked the sidewalks around the lake or the fishing pond. Or I drove up to the farm, left my car, and headed down the gravel county road, sometimes veering off on a pivot road into the middle of a field, then back to the car.  Once I didn’t want to worry about calculating how far I could go before needing to turn back so I called a relative and said I was walking as far as I could, then I would call them to pick me up. 

Sometimes I walked and counted my breath. Sometimes I counted my steps or followed other of Kortge’s directions. Sometimes I walked counterclockwise around the walking path and prayed, then realized I was meeting serious fitness walkers going the other directions, knees and elbows pumping high.

I went through a time this year when I didn’t feel well and I was depressed and I didn’t walk.  I believe if I had walked during that time, I would have been better much sooner, both physically and emotionally.  Walking and breathing fills us with a life force. Kortge discusses that connection between between breath and spirit or life.

 The Latin word spiritus means both breath and spirit. The Sanskrit language speaks of prana, the life force carried in the breath. English places spirit at the essential core of life in the words inspire and expire. . . . The power of deep rhythmic breathing to enhance physical, mental, and spiritual well-being forms the foundation of many ancient spiritual and healing practices. . . Breath links the inner and outer worlds, unifying action and intention. It guides us across the communication gaps that develop when mind and body are separate. . . .By developing awareness of the breath, we become better listeners for the physical information we receive from our own bodies.”

 

As a cancer survivor who is constantly learning how to be vigilant for signs of a recurrence without being anxious over every physical change, I can use all the help I can get to become a better listener for the information I receive from my body. Walking and breathing are not just good for me, but may help me learn a new way of being a survivor.  I’m going to re-read Kortge’s book.

And I am going to walk somewhere, somehow, each day, whether it is on a treadmill when the weather is bad, through the fields in the sunshine, down a gravel road, up the sidewalks in town, down a fence row, or up and down the stairs in my house.

This morning when I went outdoors,  there was a dusting of snow on the ground. The pheasants came out of the newly harvested cornfield and flew up into the tops of the trees.  I took a photo of them against the pale morning light.

Later, I saw them hurrying past my house, headed for a wheatfield.

On The Walking Path to Survival – more on Carolyn Scott Kortge

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I found a new place to go for walks this fall and winter.  A blue heron lives back here somewhere.

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I was looking back in this journal today, to something I wrote at the beginning while attending the Life Beyond Cancer Retreat outside Tucson. It was the end of what I call “the cancer year” that I spent being sick and having treatment. 

I didn’t know I was tense and unbalanced this morning, but as I read this entry, my heart opened up and I became myself again. 

I thought of the talk at the retreat today: Get Strong. Stay Strong. Help Heal. I continue to hear that same message as in AA: turn your thoughts to others. Heal yourself by healing others.

It may not change the “prognosis,” the numbers, the survival rate, the chance of recurrence, and no one would study that because there is no profit to it in the business world.

But it probably changes our entire perspective on life, the way it does when it is practiced in AA.

When we begin to heal, we want to turn our thoughts to others and share our experiences in ways that help people through things we may not have had help with. To give a hand where we really wished we would have had one. And that helps us.

Sometimes I have to hear the messages again.  I had an opportunity to apply to go to the retreat again this year, and I didn’t follow through on it. I’m sorry that I made that decision. I let too many opportunities pass by because I don’t feel strong enough or courageous enough or confident enough. As I read the journal notes from the retreat, I really wish I was on my way to Tucson in a few days. 

But, since I’m not, I’m going to pick up some of the plans that I had when I came back — and one of those was to build a labyrinth.  And carry on with some of the others, including the support group of local cancer survivors. 

And art therapy. Where can I find an art therapist who will come to our little town and do a day-long session with us?

Retreats should inspire. In this case, even revisiting the retreat has helped me today.

The retreat

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By Angela Townsend, The Plain Dealer

November 09, 2009

Before her diagnosis in June 2008, Dr. Eileen Freedman had never heard of triple negative breast cancer. Freedman, a pediatrician from Connecticut, is the first of 17 women chosen for a clinical trial at University Hospitals Case Medical Center. The trial is testing the safety and effectiveness of a vaccine to help prevent the disease’s recurrence. They called and emailed from all over the United States and Canada. Great Britain. India.

Women who had gotten wind of a clinical trial in the planning stages at University Hospitals Case Medical Center were eager — desperate — for a better shot at battling the difficult-to-treat triple negative breast cancer.

The Office of Patient and Public Education at UH’s Ireland Cancer Center has fielded more than 500 phone calls in the past 17 months. The calls began in June 2008, when a Plain Dealer article on triple negative gave the briefest of mentions of a trial that hadn’t yet been designed.

A few months after that, oncologist Dr. Joseph Baar, who was awaiting word on funding for the trial, presented a research paper on triple negative breast cancer at the San Antonio Breast Cancer Symposium held every December.

News that he had found a link between the cancer and a type of protein called MUC-1, and that he was working on vaccine that would target the protein in breast cancer cells sparked an avalanche of new calls and emails.

About 10 of those calls came from Eileen Freedman, a pediatrician who lives in Connecticut. She was finishing up treatment at Hartford Hospital in December 2008 for triple negative breast cancer when she heard about the clinical trial.

“One of my best friends happened to be listening to NPR,” said Freedman, 59.

The radio program briefly mentioned the symposium and Baar’s findings. Freedman’s friend then found a journal article on the Internet and another reference to Baar. The friend called and told her to read it.

From that day on, Freedman said, she began calling monthly ask about the status of the trial.

“They’d keep saying, ‘Call back in a month,’ ” she said. “In August, they finally said that the trial had gone through the IRB [internal review board].”

As one of the first queries, Freedman found herself getting a coveted slot — one of only 17 — for the privilege of being what she calls a “guinea pig” for science.

Triple negative breast cancer is one of several subtypes of breast cancer usually diagnosed by the presence, or lack, of three receptors (substances found inside breast cells that give rise to cancer): estrogen, progesterone and HER2.

Triple negative cancer, which accounts for about 15-20 percent of breast cancers, doesn’t have any of those receptors. Because of that, existing drug therapies that are used to target those receptors are ineffective in triple negative patients, making follow-up treatment to prevent a recurrence of cancer difficult.

Baar, director of breast cancer research at UH and its Breast Cancer Survivor Program, had been working on creating a vaccine that would use a patient’s own immune system to target and kill cancer cells. The only thing stopping him from going forward with those studies was money.

Shortly after presenting his work in San Antonio, the National Cancer Institute and the Avon Foundation gave Baar and Case Western Reserve University a research grant totaling nearly $250,000 for two years of a phase I clinical trial to assess the safety and effectiveness of the vaccine.

After going through the necessary reviews and approvals, Baar and his team started calling back women who had expressed interest in the study.

“I’m amazed at how patients found out about this,” he said. “They’ve Googled ‘triple negative’ and my name pops up.”

To Baar’s knowledge, no one else in the country is working on a similar vaccine.

The ideal participant is someone who has completed all of her treatments for early-stage triple negative breast cancer; in whom the cancer appears to be in remission, meaning it has not recurred or metastacized; and who is not taking any medications that suppress the immune system.

Those parameters disqualified many who initially queried about the trial. But Freedmanfit all the requirements.

Half of the women chosen for the additional screening required for the trial are current UH patients from the Cleveland area. The others hail from California, Connecticut, Canada, Minnesota, New York, Washington state and throughout Ohio.

Researchers want to make sure that at least four of the initial 17 women develop an immunity to the MUC-1 protein. If that happens, the study will add 20 more patients. If that doesn’t happen, they will halt the study.

Freedman flew to Cleveland on Oct. 21. She passed all of the necessary tests and received her first vaccine injection early the next day. A few hours later, she was back on a plane back home.

I probably have greater expectations [for the trial] than Dr. Baar wants me to have,” she said a few days after her first vaccine shot. “I’m very hopeful that his theory is correct.

“My attitude is, ‘What’s the worst that can happen?” she said. “If it doesn’t work, it doesn’t work. The chances of doing serious damage are highly unlikely.”

Baar is quick to temper expectations. The study, he emphasizes, is a pilot trial.

“We’re not selling this as a treatment for triple negative breast cancer,” he said. “We make that crystal clear. The patients know that when they come here.”

Freedman will return to Cleveland Nov. 19 for her second round of treatment. It is a scenario that she will repeat roughly once a month over the next year, along with getting her blood tested intermittently to see how she is reacting to the vaccine. She has booked her flights through February.

I’m incredibly excited,” she said. “I’m the first one and I’m feeling like, ‘Oh my God, maybe God was looking out for me because it’s amazing that I was chosen.”

Other promising research elsewhere is studying an experimental class of drugs called PARP inhibitors, which have been shown to interfere with cancer cells’ ability to repair themselves.

“That is really exciting,” Baar said. “These inhibitors are going to have a major impact in how we treat metastatic triple negative patients.”

PARP inhibitors may prove beneficial for all metastatic breast cancer patients. But historically, other breakthroughs in breast cancer treatment have not applied to triple negative breast cancer patients, said Hayley Dinerman, board chairwoman of the New Jersey-based Triple Negative Breast Cancer Foundation. Which is why, she said, research such as the vaccine clinical trial, is so important.

“These women are really such an under-served population,” she said.

Source

January 2009 Article about the trial:
CLEVELAND: Research out of the Ireland Cancer Center of University Hospitals Case Medical Center has found that the vast majority of triple negative breast cancers express the MUC-1 target. This first-of-its-kind finding, presented today at the San Antonio Breast Cancer Symposium, has paved the way for an upcoming vaccine trial for patients with early stage triple negative breast cancer that could potentially prevent recurrence of this aggressive type of breast cancer.

Joseph Baar, MD, PhD, Director of Breast Cancer Research at the Ireland Cancer Center, and colleagues analyzed 53 tumors and determined that 92 percent of them expressed MUC-1. These findings support their theory that this MUC-1 protein on breast cancer cells could be a target for a novel vaccine using the patient’s immune system to target and kill cancer cells.

Dr. Baar has received a prestigious grant from the National Cancer Institute and the Avon Foundation to begin the vaccine trial in January 2009 for women with early stage triple negative breast cancer to see if this vaccine can raise their immune response against MUC-1. If it does, then a later study would be undertaken to determine whether the generation of such an immune response leads to an increase in patients’ relapse-free survival rates, thereby preventing recurrence. The vaccine will be administered following standard therapy of surgery, radiation and chemotherapy.

“This vaccine trial has the potential to rev up patients’ immune response to the MUC-1 protein and shut down the tumor’s ability to grow,” says Dr. Baar. “Women with this aggressive triple negative breast cancer have an increased risk of recurrence and we are hoping to provide them with protection against the return of this deadly disease. Our findings that have been presented at the San Antonio Breast Symposium provide us a strong basis for this trial.”
Triple negative breast cancer is a highly aggressive form which comprises 10-15 percent of newly diagnosed early stage breast cancer. Most triple negative tumors are high grade and have a high incidence of recurrence and metastases (spreading to other organs). Unlike other types of breast cancer, there is no standard follow-up treatment for triple negative breast cancer to prevent recurrence.

“This is an important study because there has traditionally been nothing to offer women with triple negative breast cancer beyond standard therapy,” says Stanton Gerson, MD, Director of the Ireland Cancer Center. “This vaccine trial has the potential to lay the groundwork for a new standard of care for women with this aggressive form of breast cancer.”

Link

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On April 21, 2009, Living Beyond Breast Cancer presented an audioconference called Triple-Negative Breast Cancer: Treatment Update and Tools for Healthy Living

“Get an overview of the latest information, research and treatments for triple-negative breast cancers. Learn more about risk factors and screening, and get practical advice on nutritional and lifestyle choices that can help reduce your risk of recurrence.”

Link to download the podcast

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Two years ago in February 2007, I ordered 100 seedling trees to plant around my five acres to replace old trees dying out, to create some shade on the prairie and to screen the view of the new ethanol plant a half mile down the road. The trees came in March and shortly after they were planted, I found out I had invasive ductal carcinoma — breast cancer.

seedlingI now call 2007 my “cancer year.” It was spent being sick and scared, agonizing over what treatment to have and how to access it, taking a leave of absence from my full time job in the summer and telecommuting part time while I stayed out of town to have daily radiation treatments for 6 weeks, returning to my office in the fall and trying to figure out if I had the energy to work full time. Because I wasn’t home all summer, nobody carried water to the seedlings, and they were left to struggle on their own to see if they could survive the drought conditions on the plains.

Through that winter, 100 orange landscaping flags stood out against the snow, signaling where each seedling had been planted. I would wait until spring to discover that all but six had survived.

I had been told that I might have fatigue lasting up to six months after my treatment ended. In February 2008, I expected to return to feeling “normal” and be able to put in a full days’ work and carry out my regular daily activities. In April, when I couldn’t summon the incentive necessary to do a good job for my employer, I gave notice, and at the end of the month I started a new, part-time job where I worked from home instead of having to go into an office each day. It was discouraging: I began to reconcile myself to the idea that this was as good as it was going to get. It wasn’t that I didn’t feel well – it was that I had only a certain reserve of energy, and when I used it up, it was like an empty gas tank. It was not the kind of tiredness I could push through and work beyond.

The seedling trees were left through the summer to thrive or not. I didn’t carry buckets of water to them. I did drag a hose around once in a while but the seedlings beyond the reach of the hoses were left on their own. It took three to four hours a week to mow and that was as much as I could get done. I did plant two more trees – tall seedless cottonwoods – by the grass in the backyard where they would get regular water and someday would provide shade where there had been nothing but a bare gravel driveway when I moved in to this house. Those two trees stood for two things – I had a sense of optimism, that I would be around to sit under their spreading branches, and I had the strength to dig the two deep holes by myself in the hard ground.

Soon after I planted those trees, I began to realize that each day I had a little more energy, I got more done, I felt like I might be capable of taking care of myself and my place, and things would continue to get better. I began to stop thinking of myself in relation to the cancer. I began to think that it might not affect the rest of my life.

I realized that the predictions about how long it might take for me to regain my energy after treatment were completely underestimated. I decided that it might be discouraging for patients to hear that it could take up to a year or even two to feel “normal” again. Because I hadn’t been told this might happen, when I passed the benchmark of six months without regaining my energy, I became discouraged and it was depressing to think I might never feel better again.

This is a beautiful morning on the plains. I have been outdoors watering the seedlings that were planted in my “cancer year.” Some of them didn’t make it through the winter. I had to hire someone to mow while I was out of town and some of the seedlings didn’t survive the mowing. But my grandson and I went out Saturday to take out the rest of the faded landscaping flags so we wouldn’t get the wires in the mower blades, and we put bright blue tape on the survivors. Most of them are hardy. I will drag a hose and carry buckets and water them and they will grow quickly now.

The year before I got cancer, a friend of mine who is a few years younger than I am said he was too old to plant trees. Planting trees is a perspective on life. No one should ever be too old to plant a tree. When I learned I had cancer, I wondered why I had just planted 100 seedling trees. Later I wondered how I would take care of them. Today I am watering them and looking forward to sitting under their shade.

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Journal collection

Journal collection

While going through my sketchbooks, I’m running across random journal entries that are expressions of some of the more difficult and frustrating times I had during what I now think of as The Year I Spent Having Breast Cancer.  They were too immediate and personal when I wrote them to include in this online journal. Now I see that this story isn’t complete without at least some of them, so I’ve started another page called The Parts I Left Out.  I am going to add entries as I run across them, so it won’t be in chronological order for the time being.

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http://www.msnbc.msn.com/id/29160015/

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bwop1Just before my diagnosis and for some time during my surgery and treatment, I was having nightmares, what I later decided were “cancer dreams.” I’ve written here about looking for someone to help me process the strong emotional reactions I had to learning I had cancer and dealing with it. What I intuitively felt I needed was dream work therapy or art therapy. The social worker at my oncologist’s office told me over the phone to watch for upcoming art therapy sessions on their online calendar. Although they would be in in the city, I felt such an urgent need for them that I decided I would travel to attend. But I never saw them listed, and I’ve never attended any. I wish I could have found a way to do this at the time.

One day I was looking for online resources for breast cancer patients and was startled to see a full color photo of a cancer cell. It reminded me of drawings in my journal that I had done before my diagnosis. I got out the journal and discovered that I had done several pen and ink drawings that, in retrospect, looked like complex cells that had broken out of their precise patterns and boundaries and become chaotic.

Here is an article about a study that determined that women having radiation treatment for breast cancer were helped by art therapy:

Art therapy ups breast cancer patients’ well-being
Thu Feb 12, 2009

NEW YORK (Reuters Health) – Women having radiation treatment for breast cancer experienced lasting improvements in mental and physical health and quality of life after participating in five sessions of art therapy, Swedish researchers report.

The findings “strongly support art therapy as a powerful tool in rehabilitation of patients with breast cancer and, presumably, also in the care of patients with other types of cancer,” Dr. Jack Lindh of Umea University, Umea, Sweden, and colleagues conclude in the European Journal of Cancer Care.

From my sketchbook

From my sketchbook

Women face major stresses after a diagnosis of breast cancer and art therapy could offer a way for women to express and “process” their emotions, the researchers say, thus improving their quality of life.

To investigate, they randomly assigned 41 breast cancer patients receiving radiation treatment to five once-a-week, hour-long sessions of art therapy or to a control group who didn’t receive art therapy. Study participants completed surveys addressing their quality of life and self-image before beginning radiation, two months after radiation treatment began, and six months after the beginning of treatment.

A trained art therapist led each session, in which women were given a wide variety of art materials. Goals of the intervention were to offer time and space for expression and reflection; give support in the process of restoring body image; and reduce stress.

By six months, the researchers found, women who had participated in art therapy showed significant improvements in their overall quality of life, general health, physical health, and psychological health, while the control group only showed improvements in psychological health. The art therapy group also showed specific improvements in their body image, perspectives on the future, and radiation therapy side effects.

In previous studies, Lindh’s team demonstrated improved coping skills and better ability to deal with others’ demands in the breast cancer patients who did art therapy.

Art therapy may have improved the women’s quality of life by helping them to maintain a positive identity, to deal with pain, and to feel control over their lives, the researchers say.

“The results of our studies suggest that the women, through image-making and reflection on their images, were able to give legitimacy to their own interpretations and experiences,” as well as to “recognize and question” limits and boundaries imposed by traditional gender roles, they conclude.

SOURCE: European Journal of Cancer Care, January 2009.

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http://www.youtube.com/watch?v=3s9_UrVtc6c

Please watch this video to understand how the symptoms of this type of breast cancer are different from the tumor “lumps” we have been taught to look for, and how doctors sometimes fail to diagnose this until it is untreatable.

Symptoms of Inflammatory Breast Cancer include itching, which I’ve posted about before.

http://www.mayoclinic.com/health/inflammatory-breast-cancer/DS00632/DSECTION=symptoms

Symptoms

Despite its name, inflammatory breast cancer does not cause inflammation the way an infection does. Signs and symptoms include:

  • Rapid change in the appearance of one breast, over the course of days or weeks
  • Thickness, heaviness or visible enlargement of one breast
  • Discoloration, giving the breast a red, purple, pink or bruised appearance
  • Unusual warmth of the affected breast
  • Dimpling or ridges on the skin of the affected breast, similar to an orange peel
  • Itching
  • Tenderness, pain or aching
  • Enlarged lymph nodes under the arm, above the collarbone or below the collarbone
  • Flattening or turning inward of the nipple
  • Swollen or crusted skin on the nipple
  • Change in color of the skin around the nipple (areola)

Other conditions have symptoms resembling those of inflammatory breast cancer. A breast infection (mastitis) also causes redness, swelling and pain, but breast infections usually develop during breast-feeding. With an infection, you’re likely to have a fever, which is unusual (but not unheard of) in inflammatory breast cancer.

Breast surgery or radiation therapy may block the lymphatic vessels in breast skin, temporarily making the breast swell and become discolored. When caused by surgery or radiation treatments, however, these changes gradually subside.

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Living Beyond Breast Cancer reported in a story published  January 28, 2009, that radiation for three weeks  for invasive, node-negative breast cancer may be as effective as the standard five weeks.

The study examined the effectiveness of hypofractionated radiation, a technique in which higher doses of radiation are given for a shorter time period.

The article said:

Invasive breast cancer occurs when cancer has traveled outside of the ducts or lobules of the breast into the surrounding tissues. When the cancer does not travel into the lymph nodes near the breast and when the tumor remains small, a doctor may remove only the lump and some of the tissue surrounding the lump, also called lumpectomy, or breast conserving therapy. The standard treatment for invasive breast cancer that is confined to the breast is lumpectomy plus radiation for five to seven weeks. Radiation kills any cancer cells that might remain in the breast area after a tumor is removed. Radiation normally is given five days a week for five to seven weeks; the researchers of this study wanted to find out if radiation given at a higher daily dose over three weeks would be equally effective in preventing locally invasive breast cancer recurrence.

In the study, women who had undergone lumpectomy for invasive breast cancer were randomly assigned to receive three weeks of higher dose radiation or five weeks of standard dose radiation. The women did not have cancer in their lymph nodes. 

After 12 years, both groups had similar rates of recurrence. Women who received three weeks of radiation had a 6.2 percent risk of recurrence compared to a 6.7 percent risk of recurrence in the five-week group.

The researchers determined that shorter radiation is just as effective as standard radiation in controlling recurrence. They suggest that this approach should be more widely considered because it is more convenient and less costly to women in treatment for breast cancer.

The article went on to tell women they could share the results of the study with their doctor and ask if the shorter radiation could be an option for them.

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When we are told to “fight a battle” with a “positive attitude”

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. . . My point is that illness is not a metaphor, and the most truthful way of regarding illness — and the healthiest way of being ill — is one most purified of, most resistant to, metaphoric thinking.” – Susan Sontag

sontaggSusan Sontag wrote that two diseases have been “spectacularly, and similarly, encumbered by the trappings of metaphor: tuberculosis and cancer.”

In her book, Illness as Metaphor, written in in 1978, Sontag said that when the etiology of an illness is not understood, and the illness is intractable and capricious, it is mysterious, feared, dreaded, and all sorts of mythology and labels arise from it. As long as a disease is treated as an evil, invincible predator, people will be demoralized by learning they have it.  At the time Sontag wrote this book, cancer had become labeled and surrounded by mythology as tuberculosis had in the past.

At the time I read the book medical research had uncovered much of what was mysterious about cancer. We’re learning that cancer is not just one disease calling for one treatment. Better treatment has resulted in some cancer survivors living with it as a chronic, not simply fatal, disease. However, many of the old superstitions and myths remain, and are still impacting patients and the people around them.  

I wanted to unravel the mythology in part because the battleground metaphors around cancer were distressing and uncomfortable for me. Every time I read another obituary which said the person died after “a long battle with cancer,” I cringed not because it reminded me that I was diagnosed with a disease that could be fatal, but because I didn’t want the rest of my life defined as a military campaign.

Perhaps it’s unavoidable. I opted out of chemotherapy, so I decided not to “charge that hill,” and I haven’t experienced the worst side effects from some of the medicines that developed from chemical warfare agents.  I would think it’s entirely possible that when a person makes a decision to be poisoned in order to poison the cancer, that it literally is a decision to go to battle,  it probably takes that sort of a toll on the body, and maybe a person would want that struggle recognized. My aversion to the metaphor may be tied up in my own unwillingness to fight the battle that way. And, if I have a recurrence, my decision will be different, and at that time I’ll have some experience to back up what I’m talking about. I think that people who have gone through chemotherapy have a right to tell me I don’t know what I’m talking about.

But, I needed to read the book at the time that I did because I felt pressured on one hand to accept a metaphor of war along with a diagnosis, so I was being told both to “keep a positive attitude” and get in there and go to battle. I intuitively knew there was something wrong with that. Actually, neither of those things made sense to me.

I didn’t believe that my attitude caused my cancer and I didn’t think my attitude could cure it. And I don’t think a person who has cancer should be told they have to spend the rest of their life being a soldier.  As I say that, I realize that Patrick Swayze just said that going through chemo was like being in hell, so again, what do I know? 

Nevertheless.

Sontag herself had cancer and wrote this book after her cancer treatment. She wrote that “TB was understood, like insanity, to be a kind of one-sidedness: a failure of will or over-intensity. However much the disease was dreaded, TB always had pathos. Like the mental patient today, the tubercular was considered to be someone quintessentially vulnerable, and full of self-destructive whims.  Nineteenth- and early-twentieth-century physicians addressed themselves to coaxing their tubercular patients back to health. Their prescription was the same as the enlightened one for mental patients today: cheerful surroundings, isolation from stress and family, healthy diet, exercise, rest.”

On the other hand, the understanding of cancer supports quite different notions of treatment. “The treatment is worse than the disease.” The patient’s body is considered to be “under attack” so the only option (treatment) is “counterattack.”

Sontag says the controlling metaphors for cancer are drawn from the language of warfare. Cancer cells don’t multiply, they are “invasive.” Cancer cells “colonize” setting up tiny outposts in distant sites in the body. The body’s defenses must obliterate the tumor. We have radical surgical interventions.  Scans are taken of the body’s landscape. Radiation treatment “bombards” us with toxic rays. And, again, chemotherapy is chemical warfare. Treatment aims to kill cells, hopefully without killing the patient.

The “fight against cancer” is a colonial war.  Once, American Cancer Society proclaimed that progress has been made “reminiscent of Vietnam optimism prior to the deluge.”

Although my “mission” in reading the book was to find some peace among the military language of this disease, so I focus on that aspect of it, Sontag also addresses other metaphors and labels we have put on cancer, including the idea that it is “nature taking revenge on a wicked technocratic world.”

Although there are environmental causes and connections to cancer, it is as much a cliche to say that cancer is “environmentally” caused as it is to say that it is caused by mismanaged emotions.

Sontag’s book is helpful to deconstruct disease metaphors which she said had become “more virulent, preposterous, and demagogic.”

The book may be too philosophical for some. In fact, in the later chapters, Sontag analyzes the use of disease imagery in political and other rhetoric, using examples from Hobbes, Burke, Nietzsche, Trotsky, and others.  But it’s a useful book for those who believe we have enough to put up with having cancer without having to suffer from metaphor.

——-

Sontag died in New York City on December 28, 2004, aged 71, from complications of myelodysplastic syndrome which had evolved into acute myelogenous leukemia. The MDS likely resulted from chemotherapy and radiation treatment she received three decades earlier for advanced breast cancer and, later, a rare form of uterine cancer.

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Thursday, February 5, 2009 Feb. 5 Briefing to Unveil New Report on Health Care System’s Financial Squeeze on Cancer Patients

New Report and Video Documentary Look at Debt and Treatment Delays Faced by Cancer Patients with Private Health Insurance

The Kaiser Family Foundation and the American Cancer Society will hold a briefing Thursday, Feb. 5 at 9:30 a.m. in Washington, D.C. to release a new report highlighting the serious financial consequences families can experience when a family member is diagnosed with cancer – even when the patient has health insurance.

The jointly authored report, Spending to Survive: Cancer Patients Confront Holes in the Health Insurance System, analyzes the problems in the health care system that leave insured people with cancer and other life-threatening diseases unable to pay for the life-saving care they need. The report profiles 20 people from around the country who have been affected by cancer and suffered serious financial consequences as a result. It is based on an analysis of individual calls to the American Cancer Society’s Health Insurance Assistance Service, which helps families affected by cancer who encounter problems navigating the health care system.

In addition to the report release, the briefing will feature a Kaiser Family Foundation video documentary, The Cost of Cancer, that profiles three people in their struggles with cancer and the subsequent economic consequences.

After the presentation, a panel discussion will examine policy implications arising from the research.

WHAT: Briefing and panel discussion on a new report and companion video that illustrate holes in the health care system that can have devastating financial consequences for cancer patients.

WHEN: Thursday, February 5, 9:30 a.m. to 10:45 a.m. Eastern Time (registration at 9 a.m.)

WHO: Drew Altman, Chief Executive Officer, Kaiser Family Foundation John R. Seffrin, National Chief Executive Officer, American Cancer Society John R. Rowe, Professor, Department of Health Policy and Management at the Columbia University Mailman School of Public Health and former chairman and CEO of Aetna Inc. Karen Pollitz, Research Professor, Georgetown University Health Policy Institute Karyn Schwartz, Kaiser Family Foundation Kristi Martin, American Cancer Society WHERE: Barbara Jordan Conference Center (Kaiser Family Foundation Office) 1330 G Street, NW, Washington, DC (one block west of Metro Center)

RSVP: If you wish to attend, please RSVP to Tiffany Ford Fields or (202) 347-5270.

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markersMy last appointment before I left town was at the women’s imaging center which is near the hotel where I stay. They knew I had a long drive home,  so they took me back right away and handed me a warm gown to put on. I  love warm gowns. I always take along a scarf to wrap up in because the gowns are skimpy and the rooms are sometimes cold. 

I was told that starting with this appointment, I would have a bi-lateral mammogram, to be followed with appointments every six months when I would have a mammogram on alternating sides.

I also had an ultrasound and a visit with the doctor, who said she was happy with the results of the tests and to see her in six months.

I wrote in the first draft of this post about how I had to insist that the technician get my records before she did the mammogram because I (mistakenly) remembered having a mammogram three months ago and didn’t think it was time to have another one, and how that seemed to set off what I guess would be called post traumatic stress, when I suddenly found myself reliving my first visit here when, during a biopsy I heard the doctor tell someone, “this is going to be cancer, make an appointment for an MRI right away.”

That draft wasn’t saved, and when I began re-writing it, I began wondering why I am writing this journal online where it is public.

How much of this does anyone care about? Who is my audience? What do they want to know? Occasionally, I read blogs written by other breast cancer patients. Everyone is different. One woman’s journal was, for quite a while, very precise and objective in describing what happens to a breast cancer patient without reflecting any emotional content. It was something I would like to have found when I first got my diagnosis so I would have an idea of the process that I would be going through:  how many doctors do you have, what is the role of each doctor, what kind of information do they give you and what is the process you used to make a decision about surgery and treatment, what is radiation treatment and what happens when you go for your first appointment? 

But, as the record of her experience went on, I began to wonder, how did you feel inside about this? Where was the emotional content to this? I wanted to know whether other women had gone through the overwhelming fear and anxiety that I had when I got my diagnosis, and what they did about it, and how long it lasted, and what were the reactions of the people who were close to them?

I wanted to know if other women cried during their first radiation treatment – and why. I wanted to know how many radiation treatments they had before they got tired, and how that fatigue felt to them, and what they did about it, and how the people around them helped or did not help. 

I wanted to know whether they decided to have chemotherapy and how they made that decision – did they just do what the doctor recommended, or did the doctor suggest they make the decision for themselves, and how does a person make a decision like that when we know we don’t have enough information to make a very informed decision that may be one of the most critical decisions we ever make. 

The blog that I was reading that didn’t reflect these things went on very objectively until one day this cancer patient had new pain accompanied by an unexpected and overwhelming fear — is this more cancer?   It is unsettling. It is hard to regain balance afterward. I could relate to her.

Reading about other women’s experience was the thing I hunted for and devoured during the first several months after my diagnosis and while I was going through surgery and treatment.

So, maybe I’ve processed the answer to my question: why am I writing this? If I was writing this just to process my experience for myself, I have plenty of blank books around the house, and this wouldn’t be public. 

I am writing this here in case there is another woman who wants to read about what happened to someone else so she can find something to hang on to for balance while she goes through her own experience. 

We are all unique and our experiences will all be different and we will process them differently, but knowing what it was like for other women helps me see the road.

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When I postponed my checkup appointments due to the snowstorm in Denver, I wasn’t able to get all three of them rescheduled for the same day. So I see the surgeon for a 6-month checkup and the oncologist for a 3-month checkup on Wednesday morning.  I have the third appointment for ultrasound and mammogram and see my doctor at that center on Friday afternoon.  I was probably lucky to get them rescheduled that soon at all.

The wind has been blowing ferociously this week. So I’m looking forward to getting out of the wide open spaces and into the relative shelter of the city where I don’t have to listen to the wind day after day or watch the dirt blow, or huddle in the kitchen because it’s too cold in the front room and my office upstairs. 

My friend has a chemo infusion appointment on Thursday morning and he said he would like me to go with him. So I decided to make one trip and stay over until I’m done, and be able to go with him between appointment days. I got  a reservation at Staybridge Suites for a studio for Wednesday and Thursday nights. I will take my laptop and will have high speed internet access, so I can also get some work done. 

I’m looking forward to the change in scenery. And I am really looking forward to the quiet in my room. That’s a switch! Usually I look forward to getting back to the country because the city is too noisy!

I  have been feeling good, so I’m not worrying about the results.  I will have my ultrasound and mammogram results immediately when I see the doctor at the imaging center, and should get a call on my blood test results by the middle of next week.

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From Boobs on Ice, a wonderful article called “Living our own Last Lecture.”  Please visit, please read.  Her advice: 

  • Please love others and live well while you can.
  • Give generously of yourself and your spirit.
  • Adopt a cause or two.
  • Be present to what’s happening around you and not distracted by the latest shiny thing of the blogosphere.

She says,

Like Randy Paush who was only 47, or others we know who were suddenly stricken and died much earlier, we never know when an unexpected diagnosis – or a bus – will mark the end of our time here.

Let’s make today even – simply this day – one that we’d be proud to call our last.

And then tomorrow let’s get up and do it again.

And while you’re doing it, just know that I love you all.

Boobs in Ice

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I decided to edit this post when I saw that people reading this blog were searching for “triple negative breast cancer.” The post that I originally had here (below) was from a medical conference, was difficult to understand, and not very useful for those of us who were diagnosed with this type of breast cancer and were looking for more information about it.

I have been told not to worry about the type of breast cancer that I have. Until recently, the test that determines what type of cancer we had was not even performed, so women had this, didn’t know it, and didn’t worry about the differences. I met a woman at the Miraval Retreat who helped put on this event for women cancer patients and survivors, who said this was the type of cancer she had, but she didn’t know anything about it.  Her oncologist was at the retreat and when I asked her about triple negative diagnoses and what she would recommend that was different from her other patients, she said essentially not to worry about the differences.

On the other hand, this is a more aggressive type of cancer, and knowing that is not something that those of us who had it can ignore lightly.

Before I had my surgery, my surgeon and oncologist were very reassuring.  They were going to cure me. I would have the lumpectomy followed by radiation treatment and would probably not need chemotherapy. So after the surgery, when they had additional pathology reports , I was surprised to learn that now they recommend chemotherapy.

What was different? My surgeon went over the report and said I was HER-2/neu negative, “that’s good,” she said, and then said I was estrogen receptor negative and progesterone receptor negative, which I thought sounded good, but she said, no it wasn’t so good. She explained that for women with estrogen and progesterone receptor positive type cancer, additional treatment in the form of hormone therapy had been developed, but for my type of cancer, no other treatment besides chemotherapy and radiation had been developed, so from the medical provider standpoint, this was discouraging because there was nothing else they could offer.

It is also a more aggressive type of cancer, and statistics for survival are not as good as they are for the hormone receptor types of breast cancer.

Around the time I got my diagnosis, articles were being published in newspapers and online stating that a  “more deadly” type of breast cancer – triple negative – was diagnosed at a higher rate in black women, and compared survival rates for this with the more prevalent type of cancer. This was discouraging.

Then, on a message board online, another triple negative cancer survivor noted that a lot of the news coming out right then was not only discouraging but misleading, and to not pay so much attention to them, but to get my information from my doctor.

For more information about triple negative breast cancer and the latest news about treatment specifically for this type of disease,  see Triple Negative Breast Cancer Foundation

Previous post:

From Living Beyond Breast Cancer, information from the recent San Antonio Breast Cancer Conference, about triple-negative breast cancer, which is the kind I had.  Not sure why I’m publishing this here, as it is all pretty academic at this point.

Ruth Oratz, M.D., F.A.C.P.: Triple-negative breast canceris a subset of breast cancer that is of great concern clinically. This subset of breast cancer means that the tumor cells are negative: they don’t express the estrogen receptor, the progesterone receptor, or the HER2/neu receptor. They’re negative for all three of these biologic markers, which can serve as targets for therapy. The implication of this is that the mainstay of treatment for triple-negative breast cancer is chemotherapy.

There is a tremendous clinical need for better understanding of the biological processes that drive the growth and proliferation of triple-negative breast cancer cells. Two very interesting abstracts were presented at the meeting in San Antonio about possible molecular pathways, which may play an important role in the biology of triple-negative breast cancer. One of these described the higher expression of a gene called GRB7. Higher expression of GRB7 was associated with an increased risk of recurrence and did not correlate with any other clinical characteristics of either the tumor or the patient, except that lower expression of GRB7 was often present in women who were older than age 65. GRB7 played a critical role in signaling the molecular pathways which affect motility, migration, adhesions, and interaction between the tumor cells and its surrounding tissue. All of these factors are related to the ability of the malignant cancer cells to metastasize, and in particular to triple-negative breast cancer cells. GRB7 may present a new promising target for treatment for triple-negative breast cancer.

Another interesting abstract related to triple-negative breast cancer was the presentation about a new drug called dasatinib. This is a powerful oral drug which seems to inhibit some of the pathways related to metastatic activity of triple-negative cells, perhaps including those that have to do with GRB7. In one small clinical trial, which was a Phase II study of dasatinib in 36 patients with advanced triple-negative breast cancer who had received prior chemotherapy, four patients had meaningful clinical responses, and another four patients showed some transient benefits from treatment.

 Although this was a small study, and activity was modest in this trial, dasatinib may be a promising agent and it deserves further study in less heavily pre-treated patients with triple-negative breast cancer. Dasatinib is a targeted biologic agent and may be more effective if given in combination with chemotherapy. Additional research will be looking at these questions.

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I will need to leave home by 6:30 a.m. to get to my first appointment in Denver tomorrow morning. It will be a long day, but I hope I’ll be back on the road by 2:30 and home by 5:00. I haven’t asked anyone to go along this time to help drive home in case I’m too tired. I don’t like to ask people to take a day off work and all the women I know have jobs, are survivors who aren’t feeling that well, or are new friends that I don’t feel comfortable asking. My mother will take care of Pinky the Puppy for me.

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Studies Find Disparities in Lymph Node Testing
Uninsured, African-American, older women and women women with a lower education level less likely to have lymph nodes examined after a breast cancer diagnosis.

Acupuncture May Be as Effective As Antidepressants for Hot Flashes
Women using acupuncture to alleviate menopausal symptoms caused by hormonal therapy experienced fewer side effects than women taking an antidepressant.

Standard Chemotherapy Is Effective for Women Age 65 and Over
Women with early-stage breast cancer may benefit more from CMF or AC chemotherapy than from Xeloda.

This and other news published online by Living Beyond Breast Cancer

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My next three-month checkup is Monday. My first appointment is at the women’s imaging center where I will see the doctor and have a mammogram and ultrasound on one side. I’ve forgotton which side. I have to continue my massage to reduce edema so the doctor will not need to order an MRI.  My second appointment is with my surgeon, and after lunch when I have some information from the morning’s exams and tests, I have an appointment with my oncologist.

When my following 3-month checkup comes around in April it will mark two years since my diagnosis! That is hard to believe.  It doesn’t seem that long, I suppose because I spent most of the first year having cancer, and having treatment.  Once I reach the 2-year mark, I will find out if my checkups will be every 6 months rather than 3. 

I’m not having the level of anxiety around appointment time that I have had in the past. When my initial checkups resulted in the finding of NED (“no evidence of disease”), it was difficult to accept that lack of certainty. Now I look forward to getting that call from my test results.

Time — just plain time passing — has taken care of some of the anxiety and fear that I had. I have also had to develop some new ways of coping with the uncertainty of life and this disease. Meditation, breathing, walking, writing, sketching, working at my job, and doing some advocacy work on behalf of cancer patients in rural areas are some of the things that help.

I notice that I didn’t say “play” or what I do for “fun.”  I still take life entirely too seriously.  My sense of humor tends to be too cynical. I don’t know whether to blame my faults on my nature or my nature on my faults — how does that go? Some things don’t change just because we get cancer.

In the book Prayers for a Planetary Pilgrim, the author says humor is our spontoon. I always thought a spontoon was like a raft, so I pictured myself out on the lake of life being supported and carried on the pontoon of humor. Drat. Now that I know a spontoon is a short pike, I’m completely at a loss for a visual image. Maybe I’ll just picture humor as a parachute. Someone once told me that the 12 steps were “suggested” as a method of recovery, in the same way that if I planned to jump out of an airplane, it was “suggested” that I wear a parachute.

Hm m m m.. I seem to be in the middle of mixing metaphors, diseases, and methods, but maybe I can start to lighten up and look around for more things to laugh about.

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Another blogger shares her personal top 10 of 2008.

 http://aftercancernowwhat.blogspot.com/

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(SOURCE: Journal of the National Cancer Institute, news release, Dec. 30, 2008)

TUESDAY, Dec. 30 (HealthDay News) — Women with high levels of insulin in their blood appear to be more likely to develop breast cancer than those with lower insulin levels.

And that might be the link between obesity and breast cancer, say researchers from the Albert Einstein College of Medicine in New York City. High insulin levels have already been associated with obesity.

The researchers compared insulin levels in 835 women who developed breast cancer and 816 women who did not. All women were participating in the Women’s Health Initiative study. Those whose fasting insulin levels were the highest had a 1.5 times greater risk of breast cancer than did women with the lowest fasting insulin levels, the study found.

The risk was even greater among women who were not taking hormone therapy. The study found that those women were 2.4 times more likely to have developed breast cancer if their insulin levels were high than if they were low.

The findings were published in the Dec. 30 issue of the Journal of the National Cancer Institute.

In laboratory studies, insulin has been shown to stimulate the growth of breast cells. And, being overweight or obese has been identified as a risk factor for breast cancer, according to the American Cancer Society.
“These data suggest that hyperinsulinemia [excess insulin in the blood] is an independent risk factor for breast cancer and may have a substantial role in explaining the obesity-breast cancer relationship,” the researchers wrote.

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Living Beyond Breast Cancer (LBBC) has a new free 40-page Guide to Understanding Lymphedema which covers how this chronic side effect develops, what your risks are, which signs to watch for and what to do should you develop lymphedema.
http://www.lbbc.org/

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candle-lightA common theme last year at the Life Beyond Cancer Retreat at Miraval was how to be vigilant but not anxious.

That was a year ago. I have been very slow to learn how to do this gracefully. I thought it was a balancing act, but I think I was mistaken.

As Sarah Weddington says, cancer cells are like Osama bin Laden.  “I don’t know if the cancer is dead or alive and hiding in body caves and waiting to jump out and shout ‘boo!’ I’m grateful to be NED (no evidence of disease) but I’d like to have a more permanent diagnosis.”

So we have schedules for checkups and tests and in between try to be vigilant and do our self-exams and our massage to prevent lymphedema and eat our broccoli and get our exercise but not worry too much about someone shouting “boo!”

I have been waking up at 3:00 a.m. so I began a vigil of sitting in silence in the deepest part of the night

Open in this moment. I trust in the darkness.

Waiting in trust. Growing in trust.

. . . drawn into the night’s silence

I keep vigil with eternal questions.

And only through this practice have I begun to experience that there is a difference between waiting (for test results, for the other shoe to drop, for a diagnosis, for the next checkup, for decisions to solidify) and keeping vigil.

“Anxious, fearful impatient waiting is nothing more than waiting. Waiting with purpose, patience, hope and love is vigilant waiting.”  –  from Seven Sacred Pauses by Macrina Wiederkehr)

I don’t want to just be waiting impatiently. I am trying to learn the art of holy waiting.

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From another breast cancer blog:

At the end of March of this year I had a mammogram that showed no signs of abnormal tissue. I thought I was good to go until the following year. One issue I discussed with my Doctor at that time was some itching I had on my left breast. He said it was probably just dry skin due to the cold whether. Well, I didn’t have dry skin or a rash normally associated with itching. The itching wasn’t severe it was just annoying and lasted for months. At the end of August I found a lump in that same area during a self breast exam. I have since learned that itching can be a symptom.

When I read this, I knew exactly what she meant. I had an itching sensation in the area where the tumor was found later. It isn’t the kind of itching you get from dry skin. It is a deep itching sensation, deep in the breast, around the cells that are growing out of control. Mine was intermittent, wasn’t relieved by showering or lotion, and didn’t go away until the tumor was removed. 

It is important for us to pay attention to what our bodies are telling us and to be firm and believe in ourselves and our feelings in the face of doctors that suggest that we dismiss these things as unimportant.

 

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Tonight on www.breastcancer.org
Ask-the-Expert Online Conference Tonight!:
Updates from the 2008 San Antonio Breast Cancer Symposium
Wed., December 17, 7:00-8:30pm EST Ruth Oratz, M.D., F.A.C.P. & Carol Kaplan, M.D.

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mandalaFrom the moment I got my diagnosis of breast cancer until over a year later, I could not go through a day without thinking of cancer. I had a moment in the morning when I woke up before I remembered cancer, but I didn’t have any mornings without thinking of it before I got out of bed.

Even after I finished treatment, I never went through a day without thinking of cancer. I wondered if I would ever get to the point where I did not think of myself as a person with cancer and how that affected my day, my life, my work, my family, my time, my rest, my future.

Eventually, after having several check-ups and tests that came back “NED” (no evidence of disease) I reached a point between visits to the doctor that I woke up in the morning without thinking about cancer, or thinking of myself as a cancer survivor, and days that I feel well seem “normal” again. Days when I don’t feel well are another story. It’s hard to not feel well and not wonder if it is related to cancer.

So I don’t think of cancer all the time. I don’t go online to check news about cancer, or visit the online support groups and message boards.

Now that I’m working with a group of people on local resources for cancer patients and survivors, I’m back to thinking about cancer. What resources were helpful to me? Are we going to start a support group? How are my survivor friends, some who are going through treatment, feeling today?

I’m back looking at resources online, collecting links and setting up online networking tools for people who can’t forget about cancer because it has affected their lives or the lives of people that they know.

So we think about cancer some of the time. Think about it, then don’t think about it, then think about it.

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Not Grace

Not Grace

I imagined the perfect dog . . . a substantial dog. A dog that a person could respect. A five-year-old female black lab who was housetrained, well behaved, with a mellow personality (yet a watch dog), who had lost her person and was just looking for a quiet home in the country where she could lay at someone’s feet while they worked at a desk, that would curl up for an evening of reading or tv, a dog that would only need an occasional stroll (never running! or frisbee!) and liked riding in the car without having a nervous breakdown, needing a tranquilizer, or throwing up.  I had already named this imaginary but substantial dog, Grace.

Then I actually found her online.  A five-year-old female black lab named Grace. The rescue organization across the state line in Kansas didn’t give any information on the rest of the qualities.  But they never returned my call. In the meantime, my mother encouraged me to get a puppy, and, to make a long story short, I got another “insubstantial” dog – a Malitpoo (cross between a Maltese and a Poodle).  Just like Jessica Simpson’s dog Daisy.  (Sigh. How embarrassing!)

The first few days after I got her home – along with new crate, blanket, dishes, toys, puppy training papers, and after the vet checkup, I slept on the couch with her in the crate on the floor beside me. I woke up every three to four hours all night long, put on her halter and leash, and we went outdoors no matter what. She soon got the message, and I was soon exhausted. Maybe she was, too, because she took a nap each morning and afternoon.

When I went to Arizona for a week, my mother baby-sat the dog. Mom reported that they both slept all night long without any trouble or mess. So when I got home, we did, too!

Then the puppy  got sick — really sick, and I was very upset. I couldn’t go through another sick dog already — my last poor doggy who was 17 years old was so sick for so long before I lost her that I couldn’t face it again. I was crying around, “what have I done!!!”  So there were more vet bills, but the medicine worked, and after incurring yet more vet bills, the lab reports confirmed that she was okay now — she was cured.  $$$$$$$$.  $$$$$$$$.

pinky-001Now we’ve gotten used to each other and we’re best buddies.  She isn’t the perfect dog. Her hair is growing out and it looks like this. She will never have a substantial stature or command respect, especially if she always has a bad hair day.  She likes to unroll the toilet paper, she takes every shoe left on the floor into her crate, and her name isn’t Grace. It didn’t suit her.  So her name is Pinky Sparkle Twinkle.  (All my other pets were named after Greek and Egyptian gods and goddesses and radical personalities from the 60s.)

But she doesn’t have to have a long run outdoors every day and she can play fetch in the house with her tiny toys. She likes to lay on the desk or in my lap while I work. She’s trained to her puppy pads so we don’t have to go outdoors if it’s really cold and snowing, like it was the last couple of days. And she likes to ride in the car.

Now I know why my mom encouraged me to get her. She makes me laugh – and that churns up the endorphins. I have something to think about and take care of besides myself. She’s a little demanding, and that’s okay because I have to give in some times and do what she wants even though we pretend I’m still the boss of both of us. She likes to play, so I have to play, too, sometimes, and it’s a long time since I played. She likes to cuddle, and I haven’t had anything to cuddle for a while.  Having her around is more fun than eating fresh broccoli. This may be why “they say” (as Mom said) that people who live alone “do better” when they have a pet.

So we’re committed now.

And some day we may get a call from Grace, and we’ll have room for her, too.

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Waiting for test results is a bitch.

I have received phone calls from my oncologist’s office two to three days after each regular checkup with her, when I get my tumor marker test results, which have been normal. This time, I haven’t felt normal, and I haven’t had a call back yet. Tomorrow will be ten days since my exam. I finally called the social worker, after leaving two messages with the nurse and not hearing back. The social worker left me a message today saying my chart and results are on the doctor’s desk and she should call me tomorrow.

In the meantime, since I don’t feel “normal,” my imagination has gotten away with me again and when I wake up in the very small hours of the morning, as I have been every day, my headache, or my joint aches are more noticeable, or I think I have a little “squeezy” feeling in my heart — or is that a pain on my rib? — and I decided that I needed to go somewhere else to find out why I am still so tired, tired, tired, and feel so short of breath when I do anything. So at 4:45 a.m. I decided to get online and check out how to get an appointment at Mayos in Scottsdale, Arizona.

Noticing a link to “latest news on breast cancer,” I clicked that link only to discover a very discouraging report issued October 15 (two days after my oncologist visit) saying there is a “two-fold” increase in the risk of mets to the lungs in breast cancer patients with asthma. There was no going back to sleep after that, and besides, the puppy was awake by then. (That’s another story for elsewhere.)

In spite of the fact that I made a decision that between check-ups, I am going to live a “normal” life as a person WITHOUT cancer, and in spite of the fact that I didn’t obsess about it before my appointments this time, after a couple of days passed and I didn’t get a call with test results, the un- and sub- and all other consciousnesses began to take over, starting in the night when I needed to be sleeping. Between them and the puppy (I will write about that), I’m not getting good rest. Which equals more fatigue, which results in more anxiety about why I’m so god-dammed tired.

Not just tired — hurting, weak, wet noodle, joint cracking, falling down, can’t go up the stairs, too much bother to read a book, tired.

Now that the sun is up I am telling myself that I’m okay. I’m not sick. My cancer is gone and it is not going to come back.

But it would be easier if I had my test results on time, knew what they were, and had a chance to talk to the doctor about this new report.  I want her to say, “yes, I know the report, but it isn’t like it sounds, it’s like this. . . . .so don’t worry.”

I can get on a plane and go to Tulsa to Cancer Treatment Centers of America and have PET scans. My docs have said they’ve never ordered PET scans because they had no indication I needed one. The onc at Cancer Treatment Centers was very surprised about that. They would have routinely done these scans. My (former) naturopathic physician who worked for Cancer Treatment Centers said they did very good work but they used up people’s insurance because they ordered all kinds of tests and treatments.

I don’t know how a person is supposed to sort all of that out. I need some kind of statement from my docs about the asthma/ recurrence report. If that is even minimally reassuring, then I need to find out whether my onc thinks my primary is following all this, and my primary thinks my onc is. I feel myself fallllllllling through some cracks here.

And this is how my mind works while I’m waiting for test results when I’m not feeling up to par.

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Finding someone to talk to about facing our breast cancer diagnosis is no longer such a challenge.

Living Beyond Breast Cancer has trained volunteers for confidential calls. From their newsletter:

Do you want to talk to a woman who understands what you are facing? Consider calling the LBBC Survivors’ Helpline, a national, toll-free telephone service staffed by trained volunteers affected by breast cancer. Helpline volunteers are dedicated to offering guidance, information and peer support in a confidential setting. A woman affected by breast cancer will answer the phone live on Tuesdays from 11:00 am to 3:00 pm ET. At any other time, leave a message and a volunteer will return your call within 24 hours. Our personalized matching service connects you with women in similar circumstances. Spanish-speaking Helpline volunteers are available.

I previously wrote about another organization that has volunteers available all of the time:

Breast Cancer Network of Strength (formerly Y-Me) has a new online counseling program.

YourShoes has the country’s only 24/7 toll-free hotline staffed exclusively by trained peer counselors who are breast cancer survivors. These peer counselors are experienced in handling all types of questions related to breast cancer, and can talk with you about your feelings and concerns. They will make sure your questions are answered and give you the information you need in plain language. Call YourShoes at 800-221-2141.

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My oncologist is at Rocky Mountain Cancer Centers. When I first went there, they gave me a bag full of things I was going to need.  It included a notebook where I could keep medical records, a calendar for tracking appointments, record of symptoms to tell the doctors, a place to file business and appointment cards, and information on breast cancer, treatment, diet, exercise, etc. 

I don’t know how I would have managed without it.  If you didn’t get a bag, you can order one through Bag It. Check out their website:

They have information online and the following is a list of bag tools and their sources:

NCI Publications:
Eating Hints
When Someone You Love is Being Treated for Cancer
Taking Time
Life After Cancer Treatment
Taking Part in Cancer Research Studies

NCCS Publications:
Teamwork – The Cancer Patient’s Guide to Talking With Your Doctor
Cancer Survival Toolbox – CD program

Three Ring Binder:
Paper and dividers for keeping track of information, test results and appointments
Business and Appointment Card Holder
Letter from BAG IT Founder and President
Feedback/Evaluation Form
Cancer Treatment Summary-Follow-up Care Plan Resources for survivorship after treatment

What is the bag all about?

The six publications, the CDs, and the binder directly address:

Quality of life issues:
Dealing with emotions like fear, anxiety, and loneliness
Discussing cancer with family, friends, and co-workers
Timely nutrition information
Adapting to changing relationships
Addressing caregiver needs and concerns
Making difficult decisions
Critical areas such as:
Talking with your doctor and making the most of office visits
Dealing with insurance concerns
Listing of national resources

The binder included in the bag is an effective empowerment tool.
It helps patients keep track of:
Copies of referrals
Lab work and reports
Blood work
Office visit questions, answers, and notes
Contacts and appointments
Summary and follow-up care

BAG IT is also available in Spanish

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Breast Cancer Network of Strength (formerly Y-Me) has a new online counseling program.

YourShoes has the country’s only 24/7 toll-free hotline staffed exclusively by trained peer counselors who are breast cancer survivors. These peer counselors are experienced in handling all types of questions related to breast cancer, and can talk with you about your feelings and concerns. They will make sure your questions are answered and give you the information you need in plain language. Call YourShoes at 800-221-2141.

Peer counselors can match you with a survivor who had a similar diagnosis or life experiences. You’ll be able to talk with someone who really understands your concerns–a woman or man who has been there.

I had a hard time finding someone to listen when I needed to talk about my deepest fears – would the cancer come back? Was I going to be able to keep working? What would happen if I couldn’t work, which would also mean I wouldn’t have health insurance? The next three years before I turned 65 and became eligible for Medicare were the years that the risk of recurrence would be highest. Other fears were that I would have to keep working at a job I didn’t like during the next few years, which might be my last.  Was this how I was going to have to spend my last years? But how could I change jobs now?

Other things that seemed critically important to me at the time were that I was having what I called, “cancer dreams” and I needed to talk about them – with someone who took them seriously. And I didn’t want to go through having this disease without being able to understand something of what it meant in my life.

I checked with my insurance company to see if they paid for counseling and was told they did only if I went to the local community mental health programs, so chronically underfunded and marginally staffed that their services were usually restricted to crisis response, drug and alcohol evaluations and other court ordered interventions.  Not where I expected to find a Jungian analyst or dreamwork therapist.

Eventually, I made an appointment to talk to a private therapist and spent $60 to fill the car with gas and drive out of town to her office, and paid her $80 for an hour of her time, during which we chatted about some of the women we both knew, discussed my cancer history, and then she asked me if I wanted to come back.  Not having ever been to a therapist before, I asked if she could tell me what we might accomplish if I returned, and I expected that she would describe the therapeutic process as she practiced it.  Instead, she said that would be up to me.

Maybe she thought I knew what I was doing. Or knew something about therapy. I think I should have gone to someone who regularly worked with cancer survivors. My mistake. That I made primarily because I tried to go to someone I could see in a 150 mile round trip or less, instead of the 300-mile round trip it would be to the city.

The other reason I didn’t feel that anything “happened” during that appointment was that I had just made the decision to accept a job offer, and leave the work that I didn’t think I could keep doing. This was such a huge relief, and had been such a hard decision to make (don’t know why now) that I just didn’t feel I had anything bothering me that I needed to talk about. That was just timing.

The same questions still exist: I have a birthday this week, and it will now be two years instead of three before I am old enough to get Medicare, another two years that I have to stay healthy enough to work in order to keep my health insurance — which costs $1,005 per month.  I went to a town hall meeting on what we could do to address the health care crisis, and the first comment from a man in our rural neck of the woods was that we should all take more personal responsibility.  I took some personal responsibility by not killing him on the spot.

It will be one more year that I am a cancer survivor. It will be one more year during that first 5 years after diagnosis that my chance of recurrence is highest.

As the three-month checkups that come back NED (“no evidence of disease”) the question of what will happen if I can’t work gets pushed to the back of my mind and I can practice living life without waking up every morning and thinking about cancer.

So I have never really talked to anyone about these things. I quit having what I called “cancer dreams.” I no longer feel like I have to understand immediately what this all means in my life.  But I also don’t want to get complacent and forget to ponder that. I still do not want to have had this disease without understanding how it has affected my life and what that means.

When I get anxious, I put on walking shoes and get out of the house as soon as I can and walk and breathe until I’m better.

I don’t get online to read breast cancer news and updates like I used to. It has been a couple of months this time.

I was glad to find information about the YourShoes program.  We can call any time of the day or night to talk to a trained peer counselor who is a breast cancer survivor.

Get more information about this program here.

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THURSDAY, Sept. 4 (Health.com) — The special terrors of the Iraq war have shone new light on post-traumatic stress disorder (PTSD) as it is suffered by U.S. soldiers. But medical patients undergoing arduous procedures and treatments can experience PTSD symptoms too, according to a California pain expert.

At the PainWeek conference in Las Vegas this week, Thomas Strouse, MD, professor of clinical psychiatry at UCLA, stressed the importance of minimizing pain, fear, and other trauma that accompany cancer treatment, in particular.

Cancer patients, Dr. Strouse says, may feel they are under terrifying physical threat, may feel a loss of control, and may experience prolonged pain or other discomfort such as profound nausea, laying the groundwork for PTSD.

According to Dr. Strouse, PTSD symptoms have been most clearly described in adolescent patients who relive the trauma of childhood cancer treatment when they have to go in for tests and checkups. But, he says, “It can happen in adults who have gone through arduous medical experiences as well. One of the big unanswered questions in PTSD research is: Why do some people exposed to a trauma get PTSD and others don’t?”

Source and complete article: Health News

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