Still here

When I was diagnosed with Triple Negative Breast Cancer in 2007, my first goal was to stay NED (no evidence of disease) for three years, at which time my risk of recurrence went down significantly. After three years, the goal was for five years, at which time the risk became basically no different than for other women in my age group. During that time, my life included thinking about cancer – a lot. I had checkups with three doctors every three months for the first three years, then with two doctors every six months for the next two years, and after that, every six to twelve months, with various scans and tests depending on a variety of symptoms. I helped organize a local support group for cancer survivors and helped develop a directory of local area resources. After some time of this delicate dance of staying vigilant and following up with any suspicious symptoms while not stressing about cancer at the same time, I was able to live my life without thinking of myself in relation to cancer. I stopped working on the journal; I quit the support group. I moved on and I stayed NED for ten years.

In 2017, I had developed a very serious case of radiation fibrosis. I saw my doctors in October 2016, and in January and March 2017. The radiation fibrosis was diagnosed, the recommendation was a complete mastectomy to remove what remained after my partial mastectomy in 2007, to relieve the increasing pain I was experiencing. I had mammograms and ultrasounds; when I saw my imaging doctor again in April, she did a biopsy and removed a lot of fluid and we hoped that would relieve my symptoms for a while. But the next day she phoned me to say the test was positive for a new cancer (as opposed to a recurrence) diagnosed as Metaplastic Breast Cancer, which is a rare type less than 1% of all breast cancers. I believe the new cancer was from the radiation treatment I had in the fall of 2007. An oncologist agreed.

From Breastcancer.org.
Metaplastic carcinomas account for less than 1% of all breast cancers. Metaplastic breast cancers contain abnormal ductal cells, but also contain cells that look like the soft tissue and connective tissue in the breast. The ductal cells have changed their form to become completely different cells, though it’s not clear how or why this happens. When cells change form it’s called metaplasia, which gives this type of breast cancer its name. Metaplastic breast cancer is considered more aggressive and is usually high grade and triple-negative, meaning it is estrogen receptor-negative, progesterone receptor-negative, and HER2-negative.

Exposure to ionizing radiation is the best-established and longest-established environmental cause of human breast cancer in both men and women. Most scientists agree that no safe dose of radiation has been identified.

Metaplastic breast cancer is extremely aggressive and fast growing, evidenced in my case by my scans in October, January and April that were read as negative, with a 5 cm tumor discovered in May.  I had a mastectomy the first week in June. Chemo was recommended, but in consideration of my age, my allergies, and my post-pandemic attitude that I didn’t want my activities to be sidelined by the side effects of treatment, I chose not to have chemo. I did have a couple of infusions of Zometa to help prevent spread to the bones, which I learned had been a protocol used in Australia. I was followed every three to six months with scans and tests (mammogram, ultrasound and a couple of biopsies) for 5 years and have been NED since. In July 2023, at the six-year mark, an oncologist released me from regular checkups and scans unless I have symptoms.

Surviving Triple-Negative Breast Cancer

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.

Believing in the seen and the unseen – approaching the five-year anniversary since diagnosis

 

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.

Elizabeth’s cancer was not triple-negative

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.”

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

Meadowlark song Sunday morning

The last days of October. The sky in the north looks wintery today but the sun is out and suddenly I realize the meadowlark is back from springtime, sitting in a tree instead of the top of a pole, singing gloriously for a few more temperate days.

My book describes the western meadowlark’s song as a “rich, flutelike jumble of gurgling notes” and says this bird wasn’t recognized as different from the eastern meadowlark until 1844 when Audubon named them neglecta because they’d been overlooked so long.  They are so welcome at my house, never neglecta. My heart is full when I hear them sing.

Milestone

I’ve passed a milestone. It’s been three years since my diagnosis and surgery. My risk of recurrence of triple-negative breast cancer begins going down now. I drove to Denver in the rain. I met with my oncologist who congratulated me and once again explained that my risk will continue to go down until, after five years, if it hasn’t recurred, it probably will not.

I had been afraid to talk about the anniversary, or to celebrate it. Superstitious feelings that I might jinx it? I don’t know. I drove home from Denver under a big blue Colorado sky. I realized I feel different now. I have been marking this time – the three years – knowing that my chance of recurrence during that time was high. I made it. Now I’m not just going to celebrate the anniversary, I’m going to celebrate every day. I want to shift from worrying about what might happen to thinking about all of the possibilities and potential for the rest of my life.

Foggy morning

The meadowlark that sits on top of the light pole and sings reminds me that it is Spring in spite of the cold and windy weather we’ve been having for two months. This morning we have dense fog, but the meadowlark is still singing. It is supposed to be rainy the first part of the week and then begin to warm up with chances of thunderstorms. I’m more than ready to turn off the heat and get outdoors.

Thursday is my appointment with my oncologist in Denver. I had my surgery three years ago this month. This is a significant anniversary, because my risk of recurrence peaks at three years and then starts going down.

“Women with triple-negative breast cancer were much more likely to develop a recurrence during the first 3 years following therapy with rapid declines thereafter.”

“. . . among the triple-negative group, the risk of distant recurrence peaked at ∼3 years and declined rapidly thereafter.” – Various sources

Positives about negative blog

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.

Judge says breast cancer gene patents are invalid

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

More of the parts I left out

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.

LLBC new blog topic: fear of recurrence

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.”

Keeping asthma under control as a breast cancer survivor

When I was packing to go to Arizona, I had to stop going up and down the stairs for the suitcases and clothes because I got out of breath and had to use my inhaler and rest. The doctor recommended prednisone but I told him I thought if I could get out of the area, my allergies would clear up. 

As soon as I was in Arizona, I started walking, but got out of breath each time for the first week. I gradually was able to walk farther and three weeks later I was taking a long walk each day without using the inhaler.

Back home after a month at that lower altitude and warmer temperatures (and different allergens) I’m still using the inhaler only a couple of times a week, which is what my oncologist was wanting.  Because the Mayo’s report said that breast cancer survivors with asthma have a two-fold risk of metastasis to the lungs, I need to make controlling the asthma a priority. 

I don’t know if that will mean I move around more often, or if I go south for the winter, or if I will have to move there.  So far, so good.

Arizona

This month I am in Arizona where it is warm while it is cold and snowy at home.

My ultrasound, mammogram, and checkup with the oncologist in January were good.

From another journal . . the tyranny of positive thinking

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.”

Appointment time again

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.

Sunrises and sunsets

New Year sunrise over the field.

Lingering pain and numbness

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

Breast Cancer Survivor Blogs

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.

Owl does not like to have her picture taken

The owl does not like to have her picture taken. This morning before dawn, I saw her sitting on the very tip top of a tree. When I went out the door as quietly as I could to take her picture, she saw me and flew away. All I got was this dark photo of her through the window.

Resources for Women With Triple-Negative Breast Cancer

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

The end of messy house week is in sight

I put off finishing the ceramic tile job in the bathroom and laundry room for about a year because I work from home and I don’t have an office in town where I can escape the mess. And I only have one bathroom. And it meant the washer and dryer and other laundry things would be sitting in my kitchen.  And because I didn’t have the energy. But most of all because one thing invariably leads to another — the looming unforeseen.  

The men came and started work on the last nice day before our cold snap.  The next day it snowed and the wind chill was several degrees below zero. I don’t have a heated garage — actually, I don’t have a real garage —  so in order to continue working, the men put their tile saw on my back porch and fastened up plastic walls around it for a workroom.  My porch serves as my “workshop” until I build a real workshed, and it also serves as the mudroom and a place where my grandsons keep some of their things for plundering and adventures when they stay in the country.  

So the porch holds the tool box and on the wall above hang jars full of different sizes of nails, hand saws, hammers, and other tools.  Hanging on pegs are John Deere and dairy caps, along with my down-filled red winter hat with Holden Caulfield earflaps that I bought for winter vet check days. Shelves hold stacks of magazines that need to find their way out the door, more tools, and normal miscellaneous in a house with boys — little packages of bobbers, a baseball, a pack of BBs, canteens for hiking, a tent in a bag, and below is the footgear – boys’ workboots, green Wellies,  and Sorels with winter liners.  

On another wall is a gunrack holding several fishing poles, a BB gun, slingshot, two sets of binoculars and a canvas fishing tackle bag.  Cabinets are crammed with canning jars, oil lanterns, flashlights, housepaint, glue guns, sandpaper, oil and filters for the riding mower, and just about everything else I’ve ever thought I needed for a project whether I got it done or not.  

In other words — a lot of stuff. That should be in a garage and a workshop.  

Everything Including the Kitchen Sink

The tile saw buzzed and whined and buzzed and whined while I sat behind a closed door doing my paid work and trying not to think of what was going on around me in my house and hoping I didn’t need to use the bathroom. When the men were done cutting tile, everything was covered with a thick layer of white dust. A very thick layer of white clinging dust.  

Then we discovered the 220 outlet for the clothes dryer didn’t have a proper ground wire. That became apparent when the man washing down the tile with a big, wet sponge got shocked. An Unforeseen Thing. So I called the electricians who came to replace the outdated wiring and outlet. They needed to get into the cellar, but the tile saw in the temporary room full of tile dust was sitting on the cellar door, which is located in the floor on the porch, and there was nowhere to put the tile saw because the wind chill was still minus 26.  

Wednesday, when I had to go to an actual real time work meeting, I walked out the back door with strips of tile dust on my slacks and jacket.  I reached the Babbling Stage yesterday morning and had to tell myself this would soon be over — nothing like the neverending “two weeks” of months-long complete remodeling projects, such as the one I undertook several years ago when I had to watch Money Pit for comic relief and perspective.  

This morning the tile work is complete. The only thing left is to touch up the baseboards and install a threshold.  

And put everything back and clean up all the rooms.  

Must go now. Men entering the premises . . . . to be continued. . . .

On the walking path to survival

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

Recent post – Spirited Walking and Pheasants

 

Beware of outdated information

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.

Are you a “difficult” patient? Or an “empowered” patient”?

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.

What’s your take on the new recommendations on mammograms and self-exams?

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.

Spirited walking and pheasants

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

New place to go for walks

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

Get Strong. Stay Strong. Help Heal.

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

Breast Cancer Trials

Breast Cancer Trials
Breast Cancer Trials is a website where people with breast cancer can sign up to search for breast cancer treatment trials by entering information about their medical condition and treatment.

BreastCancerTrials.org was developed specifically for women and men interested in breast cancer trials. On the website you can learn about the benefits of taking part in a clinical trial and what questions to ask before you do; use the trial matching service to find trials that might be right for you; contact research sites through a messaging service; browse trials. You can also sign up for an email service to alert you when trials that match your information become available.

Deer visitors

There were lots of new people at the fundraiser for breast cancer awareness on the last Saturday of October. It had snowed heavily a few days before and the organizers wondered whether to postpone. But the sun came out and the city had cleaned off most of the streets that were on the route for the 5K and 10K run. The mile walk was around the lake and the sidewalks had been cleared. The runners were in their gear and ready to go. The money is used to help women access screening and treatment for breast cancer.

A friend of mine was the speaker at the luncheon following the race and she stayed for the weekend. Sunday morning, I was reading the newspapers online while she showered and dressed when I looked out the window to see two whitetail deer coming out of the cornfield east of my house. I grabbed my camera and began taking pictures through the windows as they went around the house, through the bushes and across the road into the north field.

Harvest has been delayed this year and the cornfield is still standing. It’s hiding lots of pheasants that took refuge there when hunting season started. Sometimes when I go outside and the back door bangs against the house, pheasants fly up out of the field with their noisy clicking sound. I’m sure the deer are back in the corn, too.

Trial to test vaccine for triple negative breast cancer

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

Late summer morning

It’s a beautiful late summer morning. Good for reading outdoors.

“New Hope In Treating Triple Negative Breast Cancer”

[Disclaimer – I don’t necessarily agree with or endorse what Dr. Lictenfeld said in his blog; I am just reprinting it here as it was originally written. Is an increased survival rate of 3.3 months “significant”? – Rural Womyn Breast Cancer Journal]

New Hope In Treating Triple Negative Breast Cancer
Posted on 6/1/2009 by Dr. Len Lichtenfeld
American Cancer Society Dr. Len Blog

One of the papers presented during yesterday afternoon’s plenary session at the annual meeting of the American Society of Clinical Oncology (ASCO) captured my attention for a couple of reasons.

The study reported on a new drug code named BSI-201 in a trial where the researchers treated women with a form of breast cancer called “triple negative.” Triple negative breast cancers (or TNBC) are called that because they don’t have estrogen or progesterone hormone receptors and are negative for a genetic marker called HER2. As a result, they can’t be treated with some of the more successful breast cancer treatments such as hormonal therapy or targeted drugs such as trastuzumab (Herceptin ™), They tend to occur in younger women and especially in African American women. Unfortunately, they tend to be more aggressive than other forms of breast cancer.

This new drug acts against something called poly(ADP-ribose) polymerase-1, or PARP-1. If you think that is a mouthful and don’t understand what it is, don’t feel bad. Neither do I and neither did much of the audience at yesterday’s presentation. In fact, this was so new to the doctors in the audience that they had a special tutorial in PARP-1 before they presented the data from the paper, so everyone could learn something about the science behind the drug. Basically, this enzyme is involved in gene repair and cell proliferation, two key targets to control cancer cells. BSI-201 inhibits PARP-1, and it is thought that it works best by adding it to certain chemotherapy drugs as opposed to using it by itself.

In this trial, women with TNBC with metastatic disease—a particularly difficult situation to treat—received chemotherapy with two drugs (gemcitabine and carboplatin). Half the women received just the chemotherapy, and the other half received the drugs with the addition of BSI-201.

The results, in my opinion, were impressive: 62% of the women who got BSI-201 responded to the treatment compared to 48% in the “control” group that got just the standard therapy. The time it took for the disease to progress on treatment in the women who received BSI-201 was 6.9 months, compared to 3.3 months for the women on the standard treatment arm. The overall survival increased from 5.7 months in the control arm to 9.2 months in the BSI-201 arm. There was no apparent increase in side effects from adding BSI-201 to the treatment program.

Those improvements are all significant, although obviously don’t represent the types of increased survivals we would like to see. But as I mentioned, women with TNBC who have metastatic disease unfortunately don’t do well with current treatments, and this new drug represents a true ray of hope in a frequently hopeless situation. I would also note that some of these women had already received prior chemotherapy, which in effect stacked the deck against seeing any success with this new drug regimen.

I was so intrigued by the results that I tried to find out more about the company that invented the drug. The name of the company is BiPar Sciences. You would think that this would be a large company to have made such a significant discovery of a drug that represents an entirely new class of therapy.

What I found out was that in fact the company had recently been purchased by a larger pharmaceutical company, so it is no longer a “stand alone.” I also was told that the company still pretty much works on its own, free of much of the constraints that usually come along with being part of a much larger organization. The number of employees who worked on this exciting discovery and clinical trial? About 20, according to my source.

And, on another front, it appears that this clinical trial was done in large part through member practices of US Oncology, a nationwide oncology practice organization, not through a major university or university consortium. So it reinforces the fact that private practices (and their patients) that commit to clinical cancer research can make significant contributions to advancing our knowledge and capabilities in cancer care. If we could see more of this type of commitment and participation by non-academic, community based oncologists we could dramatically increase access to clinical trials and get more cancer drugs tested nationwide.

So here we have one of the more exciting advances in chemotherapy that I have seen in a while, and it didn’t take a giant company or major universities to get the job done.

For women with TNBC there is now a bit more hope that we can help them in their time of need. The trial reported here at ASCO was what we call a phase II trial, which is essentially early stage proof-of-concept. The next step is a phase III trial, which will treat more women, and that is scheduled to start this month. The drug is also under investigation in other cancers as well.

Here’s hoping that this research opens the door to a new and exciting frontier in cancer research and cancer treatment. It clearly looks that way to me.

More updates on triple negative breast cancer

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

Seedling trees and surviving

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.

I 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.

Missed my voice . . .

After not posting here for quite some time, I had a very flattering comment from a reader to say my voice was missed, and that people worry when too long a time goes by between posts. I hadn’t thought of that. I follow some other people who are journaling about their experiences with cancer, and know I’ve been concerned when I don’t see an update from someone who posts regularly.  But for some reason it didn’t occur to me that any of my readers would be worried.

So thanks for commenting to let me know.

In February I posted about the need for patient navigators, to help terminally ill people who are overwhelmed by this disease itself and do not have the resources and energy to deal with the bureaucracies of health care and insurance. My friend was farther along in his disease than we wanted to acknowledge.  He went into the hospital in March, we thought for a few days to resolve some side effects of a chemotherapy medication. One day a perky doctor that we hadn’t seen before even told us we could take him home that day. We said we needed some preparation and information about home health care and were even told that a physical therapist (whom we knew nothing about) said the patient didn’t need any home care assistance. We were astounded, since he needed help for all basic needs and hadn’t been able to eat or drink anything. So that discharge was postponed, ostensibly to give the hospital time to get the home care arranged.

So one day we were told to make him eat and drink so he could go home, and the next we were told if he didn’t want to eat or drink, not to force him. It was completely baffling and we had no idea what to expect. That, combined with our denial, didn’t prepare us for what was next – we were still preparing to take him home. Then we were prepared to take him to hospice.

We lost him on April 4.

I have been thinking about the post that I wrote about my resistence to using the metaphors of war for this disease of cancer. I was open to the possibility that I was wrong. After watching what my friend went through, the first post I wanted to write when I was able to come back to this journal was to say, “I was wrong. It is a war.”

I have not been able to articulate more of that yet. I have not been able to say much of anything. Our grief is overwhelming.

During this time, I was supposed to be helping start a local support group for cancer survivors, to finish a small directory of resources available for cancer patients and survivors in our little town, and to participate in a training to volunteer to help other breast cancer patients, and setting up an information resource center in our local hospital. All I wanted to do at that time was to not hear any more about cancer. Not to think about it for a while. What a luxury and privilege that would be. And I use “privilege” in the most pejorative sense.

We’re not able to have that luxury. We have to just keep on – taking care of ourselves and hoping that we can spare other family and friends more of this grief. Taking care of others that we love. Taking care of people we don’t know. Raising money for a cure for strangers. Finding information about prevention and good health for our children and grandchildren. Carrying the memories of those who didn’t want to go but are no longer here.

I don’t know what else to say right now. I will be back. Thanks for caring. I love all of you who care enough to read this.

Hollis Sigler’s Breast Cancer Journal

Hollis Sigler was a visual artist who created a body of work called, Breast Cancer Journal: Walking with the ghosts of my grandmothers. In 1985, she was diagnosed with breast cancer and had a mastectomy, chemotherapy, and radiation treatment. At that time, her disease was a much more private concern and she got on with her life, “hoping that she would be among those who had experienced a sobering confrontation with cancer, one that for the most part was resolved.”

In 1992, the cancer was found in her bones, and “she got angry, and then she got busy. Her frustrations with the confusing and meager flow of sometimes contradictory clinical information, with the lack of outreach resources, with the sense of being isolated with a potentially terminal disease while simultaneously certain that everywhere there were thousands, no millions, of women in precisely her position,” led to her activism and to the journal.

She began publicly acknowledging her cancer by painting to express not just her own experience, but her family history, and as political consciousness raising. Both her mother and grandmother had breast cancer.  Her paintings express the challenge of the disease, “all its moments of despair, revelation poignancy, sorrow, exhilaration, agony, hope, dejection, frustration, and tenderness,” James Yood wrote in one of the introductions. The other introduction was written by Susan M. Love, M.D. 

Sigler came of intellectual and artistic age in the 1970s and she understood those aspects of feminism that led to publications like Our Bodies, Ourselves. “She knew that women, one by one, often beginning in isolation, had created new networks of communication to provide exchanges of information that would directly address critical issues in women’s lives, that would combat those structures, intended or unintended, that had hitherto frustrated women’s efforts to inform themselves more fully.”

Sigler also had experience with art activism through her role in the Artemisia Gallery, a feminist cooperative in Chicago the 1970s.

Sigler describes the creative process throughout the series, and how it evolved as she gained some emotional distance. The first works directly related her feelings and experiences with the diagnosis, and later became more reflective. One group of drawings was done almost immediately after readings of Tibetan Buddhists, specifically The Tibetan Book of Living and Dying. Sigler said that that book, along with The Cancer Journals of Audre Lorde, gave her perspective about her attitude toward permanence.

Sigler was featured in “Paint Me a Future,” a documentary film about art therapy produced by Dr. David Kaminisky, Palm Springs, CA.  Her breast cancer journal was published by Hudson Hills in 1999.

Sigler was born in 1948 in Gary, Indiana and died March 29, 2001, in Prairie View, Illinois.  She received the distinguished artist award for lifetime achievement from the College Art Association just one month before she died.

The parts I left out

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.

Water therapy for lymphedema symptoms

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

Art therapy and breast cancer

Just 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

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.

Must watch video on inflammatory breast cancer

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.

Again – we need patient navigators, people — and they need to do more than give out toll free numbers

Tired tonight. A mental fatigue. Tired out and dismayed by the challenges cancer patients are faced with in addition to dealing with their disease.

My friend has stage IV prostate cancer and has been at the same hospital since his diagnosis. Even though it serves the indigent and he could have gone elsewhere after he got on Medicare, he has chosen to stay because he likes his doctor; he likes the nurses in the infusion unit. I think there are other reasons, too. Why would someone dealing with this disease want to think about changing?

Long calls today to the hospital social worker, family members, advocacy organizations, service agencies, more visits with family members to catch each other up on the news and to give the primary caretaker some encouragement. He’s tired, too. He says he’s been tired for a month. He’s a single parent and taking calls at work from Home and Community Based Services discussing eligibility for his dad, calls to the social worker about the reasons his care has been interrupted at this late date without an explanation or help to transition to another medical provider.

The patient’s symptoms make it difficult for him to navigate the systems involved – health care, government Medicare, insurance companies. The appointments scheduled this month included one for a transfusion to address the severe anemia, one for an infusion of zometa to address the bone loss secondary to the disease and the treatment, a Coumadin check, and an appointment with the oncologist to see whether, after 30 days, the new medication was working, as the chemotherapy infusions were stopped when they quit working. He went to the appointment with the oncologist and a woman whose name he didn’t know, and whose position at the hospital he wasn’t aware of came to him in the waiting room and told him in front of other patients that he had to leave and he couldn’t come back. And, he thought she also told him he couldn’t talk to anyone about it.

That was one week ago tomorrow. Today, we were finally able to learn that the problem is related to the Medicare and supplemental insurance and may be able to be fixed tomorrow – but it also may not.

Needless to say, the way it was handled was completely outrageous. I spent time today trying to locate an advocacy organization that could help find the problem and work through to a solution. I went online to the American Cancer Society web site, entered the zip code, and learned there was a “Patient Navigator” in the patient’s local ACS office, and when I called and explained what happened, she gave me a toll free number for a national nonprofit organization. So what a patient navigator does, or what a patient advocate is, or how a cancer patient whose care has been suspended at a critical stage can find a local office or person to help him is information that does not come easily when it is needed.

My friend said it was okay for me to call, and I went through four recorded menus until I reached what I thought would be the right selection. Seventeen-and-a-half minutes later, after the most recent recorded assurance that my call was very important, the background music was no longer playing, and I wasn’t sure I was still connected. I waited a while longer, heard no more music, never got another recorded assurance I was on hold, and decided I had been disconnected. The patient himself would have never made it through the recorded menus.

But we were able to talk with the hospital social worker this afternoon and she has a meeting scheduled for tomorrow to try to get the problem resolved. She’s not sure she can do it, but she will try. The Coumadin clinic appointment will have come and gone. It will be 7 weeks since the Coumadin levels were checked. We don’t know when he will find out whether the new medicine is working, or what he will do next if it is not.

Someone who needs two pints of blood, whose blood pressure is very low, who is in pain and having difficulty walking, will show up with his paperwork to see if a bureaucracy can untie its knots so he can, he hopes, resume treatment. And monitoring. Why wasn’t this handled last week? Why was this cancer patient exposed not just to another lapse in treatment, but to a week (so far) of anxiety about the reason he couldn’t see his doctors and get his treatment, and whether he would have to start now to find other doctors?

I am still just shaking my head, and I’m exhausted, and I’m not the patient. This is completely outrageous.

LBBC: New Guide to Understanding Treatment Decisions

Living Beyond Breast Cancer has a new Guide to Understanding Treatment Decisions that will help newly diagnosed breast cancer patients interpret their test results and create an individualized plan for care. The brochure explores understanding the pathology report and the results of genomic tests, paying for tests, working with treatment teams and making decisions about surgery, chemotherapy, radiation and other adjuvant treatments.

Visit their web site to download or order a free copy.
PDF copy of the report

Survivors retreats

http://www.survivorsretreat.com/retreats.html#

A list of retreats for cancer suvivors (and some for caretakers, too).  There is a list of retreats with a wide range of focus and actitives.   Some are no charge. 
http://www.survivorsretreat.com/retreats.html#

Study: three weeks radiation as effective as five

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.

Illness as Metaphor

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

Susan 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.

Report: Health Care System’s Financial Squeeze of Cancer Patients

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.

Whose finger is that on your mammogram sticker?

Someone asked me what those flowered things were in the photo with my post about my checkup. They’re the stickers with little BBs that the mammogram technician uses to mark the location of a lumpectomy, biopsy, etc. 

When I googled “mammogram stickers” to see if I could find the correct name for them, I came across stickers that are used to remind women of when it’s time to have a mammogram. Good grief, people! Whose hand is that – George Washington’s? 

Definitely NOT the hand of a woman who wants to remind herself to get a check-up.  Looks like a formindable father figure scolding a daughter.  Just what women need for a gentle reminder.

Updated post about triple negative breast cancer

I have updated a previous post about triple negative breast cancer.