“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

Please support Memory Walkers Relay for Life Team

Memory Walkers Relay for Life Team

(I wonder who those folks are in the photo on our team page? Not us!) Anyway – please support our team in the 2009 Relay for Life to raise funds for cancer research.

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.

Unexpected reaction to checkup & wondering why I write this

My 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.

Two appointments done – waiting for Lost

Wednesday, January 21.  I got two of my appointments over today. Both the surgeon and the oncologist said they didn’t see anything that concerned them. The oncologist’s office took blood and they will call me if something is not normal.  Up until now, they send a copy of the tests to my primary physician. This time they added something new - I fill out a self-addressed envelope and they mail me a copy of the test results.   

It was too soon to check into my hotel room, so I went to Pete’s Greek Cafe for one of his great Greek salads with feta cheese and pita bread and read The Denver Post. The front page of the post had the photo of President Obama, the First Lady, and the little girls taken on Inaguration Day.

I got to check into the hotel a little early.  I have a nice little stuido room with two south windows overlooking the bike path that runs for 15 miles along Cherry Creek.  It was 71 degrees outside – a beautiful day with no wind, and the path was busy with people power walking, riding bikes, and strolling along with their dogs.  I opened the windows and let in the fresh air and sunshine and the sound of the river.

Last winter when I didn’t feel well for a few weeks, I started watching episodes of Lost on my laptop.  I tried to pace myself, but it was so easy to get to the cliff-hanging end of an episode and then think: instant gratification! I could watch the next episode right away.  When I found out that the new season wouldn’t start until January, I put off watching the fourth season as long as I could stand it, then gave in and watched it over the next few weeks until I had seen all of them and joined the rest of the Lost fans who had to wait until January to see more.

Tonight is the night! An hour of the last season to be followed by two hours of the new season! Can’t wait. Hope I don’t fall asleep!

Cardboard signs along the way

Coming back to the hotel from the hospital this afternoon I drove through an area along Speer Boulevard where homeless and other people stand on the corners with cardboard signs.  There was a nice looking young woman whose sign said “homeless, jobless.”  It said she needed $17.50 to get a copy of her birth certificate so she could get into British Columbia for a job. 

I passed a man in in a button down collar shirt holding a camera and gesturing to a man on the sidewalk. The man stood up to get a picture taken of his sign.  The words were very neatly lettered and spaced, and said, “Wife ran off with best friend.  Need money to send  c . . . . .  .” and when I read to that point, the light turned green and the traffic forced me to drive on before I could read the rest. 

 I’ll be pondering that all evening.  Oh. I know what it said. “Need money to send thank you card.”  Well, it wasn’t funny after all.  Now if it had said, “need money to send them the children,” then it would be funny.

Checkups rescheduled for this week

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.

“If we can just see ourselves in each other. . . “

It seems to me that the atmosphere in the country has changed. I think it’s because of the huge collective sigh of relief when George Bush left the White House for the last time.

My friends have been calling and emailing the last two days saying they are crying with excitement over the Inaugural ceremonies in Washington. I have a new twitter box that stays on the side of my desktop, and as I work, I’ve been able to watch all of the people and news sources that I follow talking about the entertainment and speech yesterday at the Lincoln Memorial, their volunteer work on Martin Luther King, Jr. day today, and counting down for the swearing in ceremony tomorrow morning.

Something that Barack Obama said keeps replaying in my mind.  “If we can just see ourselves in each other. . . . we can overcome our differences and rebuild this nation.”

This is a monumental change. It has been a long, long time coming.

Words to remember from another survivor

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

Updated post: triple-negative breast cancer

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.

Spooky cows

No snow here yet, just wind. The forecast is for 40 mph wind until about 7 p.m. with gusts up to 60 mph.  Because there is no snow, the dirt is blowing. It must be getting worse, because a group of about six cows just kicked up their heels and started running southwest across the field. The rest of the cows must have already gone to the south corner because I can’t see any of them.

Postponed appointments

The weather report didn’t look bad when I got up this morning. I turned on the radio after I was on the road and heard the weather and traffic report for Denver – snowing and blowing, roads snowpacked and slippery, lots of accidents expected to continue through rush hour. I had gone less than 10 miles, so I turned around and went back, stopped at the bar and grill to eat an omlet, and went home. I hate driving when it’s icy and it makes the day stressful to wonder what the roads will be like on the way home.

From Denver traffic cams this morning:

 

Brrrrrr. The only difficulty is coordinating appointments with three doctors. I schedule my appointments 3 months in advance. This time it is going to mean two trips, two days off work instead of one, as I couldn’t get an appointment with the imaging center doctor the same day as the surgeon and the oncologist. But I think I’m lucky to get all three appointments rescheduled before the end of the month.

Tomorrow

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.

We need patient navigators!

We need patient navigators, people.
I made a trip to Denver last week to spend the day with a cancer patient at the infusion center and try to help him get his medication.  On a Tuesday, my friend’s doctor prescribed a new medication when the chemo infusions quit working. He took the prescription to the pharmacy in the hospital, where he was told the pharmacy didn’t have the medication and to go to a retail pharmacy. He went to one and was told the pharmacy didn’t have enough medication to fill the prescription, and to go to another outlet. He went to the other outlet and was told they had the medication, but couldn’t fill the prescription. He didn’t understand why the prescription couldn’t be filled, so on Friday I went to Denver to help find out.

We were in the infusion center from 10:30 a.m. until 3:30 p.m. As soon as we arrived, we told an infusion nurse that the prescription hadn’t been filled, and she said she would make calls. At 2:00 p.m. when the nurse still hadn’t told us anything, I began making calls to the patient advocate’s office (who said it wasn’t her job to look into this, but she would, anyway), and I found the social worker’s office and talked to her.

When I returned to the infusion center, the nurse was abrupt with me, and said, “I don’t know why you’re making these calls. You call people, and then they call me, and I’m already on it.” I explained that I had made what would be a 5-hour round trip to Denver to help my friend get his medication, and I wanted to do what I could to make sure we could get it before the weekend.

The nurse didn’t seem to like the idea of someone doing any advocacy for one of the patients, and said, “I didn’t know anything about this — he wasn’t complaining!”

And I said, “That’s why I’m here.”

To make a long story short (”too late,” as they say in Clue), we didn’t get the medicine that day. I called the pharmacy and found out that they needed prior authorization to fill the prescription. The infusion center nurse said the woman from the hospital pharmacy would call the retail pharmacy to give the authorization. Then she explained to us that it usually took 72 hours for the authorization to go through.

If the person at the hospital’s pharmacy had made that call when she sent the patient on that wild goose chase, the prescription would have been ready to pick up the day I was in Denver. Instead, the medication was not ready for the patient to pick it up until 9 days after the doctor wrote the prescription for a patient whose other medication had been stopped because it was no longer working.

This happened at Denver Health, formerly known as Denver General Hospital.

When a person is dealing with cancer, they do not have enough energy or focus to unravel this much red tape by themselves. This is just completely unacceptable. Actually, it is just a complete load of crap.

Another thing that is ridiculous – my friend was not able to walk from the parking lot to the door of the infusion center, so I let him out in front and went to park the car. When I got a social worker involved, she said she would fill out the forms for a handicap placard for his car, and he could park outside the door. He could pick the form up on the following Monday and take it to the department of motor vehicles (where he would have to stand in line for how long?) and they would give him the placard. That makes no sense to me. But. The worst part was when he went back on Monday, she didn’t have the form ready for him, and he still doesn’t have it.

We need patient navigators, we need patient advocates, we need doctors who realize that a patient isn’t navigating the system well alone and who makes referrals to supportive people and organizations. WTF?!

News from LBBC

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

People out of work losing health insurance

I am watching the 10 pm news about the number of people who are out of work. And, of course, most people have health insurance through their jobs. This is just an awful situation, when people are not only out of work but lose their health insurance coverage.

In this state, we have the option of continuing our health insurance policy for up to 18 months, but we have to pay the premium ourselves, and who can afford that when they don’t have a job? My insurance premium was $1,005 a month when I changed jobs. My new group coverage is just under $900.

When I worried about whether I would be able to keep my job, the main thing I was concerned about was losing my health insurance. I feel so fortunate that I’m working and have health insurance. I don’t understand why some people are afraid of universal health care, and call it “socialized medicine.” I hope we can get people back to work, and I hope we can get universal health insurance coverage.

Ok, I found something funny

http://www.photofunia.com/

Just when I said I was taking everything too seriously, I stumbled on this web site where you can put your own face in a number of photos. 

Some of mine:

 

 

3-month checkup coming up

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.

After cancer, now what?

Another blogger shares her personal top 10 of 2008.

 http://aftercancernowwhat.blogspot.com/

High Insulin May Boost Odds of Breast Cancer

(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.

Guide to understanding lymphedema

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/

Using twitter to build local resources

Twitter Yuma Survivors http://www.twitter.com/yumasurvivors

This is a group of patients, survivors, caretakers, agency representatives, health care workers, community volunteers, Relay for Life coordinators, hospice workers, medical care professionals, nonprofit organizations and American Cancer Society workers. We first met as a group in October 2008 to address access to information and resources, including LOCAL resources for cancer patients and survivors, and to collaborate with local fundraising efforts.

Not everyone is that excited about using twitter yet – especially really busy people. And some of the group are not online. But we are starting where we are and we are going to use this to keep in touch, share information and resources as we develop.  http://www.twitter.com/yumasurvivors.

We are attracting some attention from outside resources, and that’s GREAT!

Vigilant waiting

A 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.

Itching is a symptom

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.

 

Updates from the 2008 SABCS

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.

Campaign for safe cosmetics

I was reading this week that the average American woman absorbs five pounds of chemicals into her system each year from her cosmetics.  The European Union has banned some chemicals from cosmetics, but we are still using them in the United States.

Help get toxic chemicals out of products you use on your body and your baby. http://www.safecosmetics.org/

HORMONE-DISRUPTING COSMETICS CHEMICALS FOUND IN TEENAGE GIRLS

SAN FRANCISCO – Teenage girls across America are contaminated with hormone-disrupting chemicals found in cosmetics and body care products, confirms a new study released this week by the Environmental Working Group (EWG), a founding member of the Campaign for Safe Cosmetics. The report is available at http://www.ewg.org/reports/teens. The first-of-its kind study found 16 toxic chemicals in blood and urine samples from 20 teen girls from eight states and the District of Columbia, aged 14-19, including preservatives, fragrance and antimicrobial compounds. Many of these are linked to serious health risks in lab animals, even at low-dose levels. “Hormone-altering chemicals shouldn’t be in cosmetics, especially in products used by millions of teenage girls,” said Rebecca Sutton, Ph.D, author of the report and Staff Scientist at EWG. “Their bodies are still developing and may be especially vulnerable to risks from these exposures,” added Sutton. The young women participating in this study were recruited from locations across the U.S. and represent diverse ethnic and cultural backgrounds. They used an average of nearly 17 personal care products per day that contain a total of 174 unique cosmetic ingredients. “The findings of this study are further evidence that our system of regulating chemicals in cosmetics is broken. We need smarter laws at the state and federal level to keep hazardous chemicals out of personal care products,” said Lisa Archer, National Coordinator of the Campaign for Safe Cosmetics. “Teenagers are being exposed during a critical period of development to toxic chemicals in products they use every day. Being a teenager is hard enough – girls shouldn’t have to worry about their beauty products contributing to their risk of cancer or damaging their reproductive systems.” The study provides the first data available from teens on levels of synthetic chemical musks, common fragrance ingredients that accumulate in people and act like estrogen in the body, and preservatives called parabens that also mimic estrogen.  Chemicals that act like estrogen can contribute to early puberty and an increased breast cancer risk. The FDA does not require companies to test products or ingredients for safety before they are sold. As a result, nearly all body care products contain ingredients that have not been assessed for safety by any federal agency, and many contain chemicals linked to cancer, birth defects and endocrine disruption. “Most parents don’t know that the eyeliner, lipstick or shampoo they allow their daughters to use probably contains at least one chemical linked to a number of serious health concerns,” said Sutton. “Teenage girls are at a particularly vulnerable age and these exposures could trigger a subtle sequence of damaging effects that leads to health problems later in life.” Teenagers,  their parents and other consumers can consult EWG’s Skin Deep online database to learn more about unsafe chemicals in cosmetics and how to make safer choices about the products they purchase for themselves and their families. They can also visit www.SafeCosmetics.org for an overview of current laws and to join the growing movement to demand stronger government regulation and oversight of the $50 billion cosmetics industry.

http://www.safecosmetics.org/action/materials.cfm

Missed this opportunity for retreat in Tucson!

I had planned to get back to Phoenix for a couple of weeks. If I had kept my plans, I would have been there today when I got an invitation to go back to the Life Beyond Cancer Retreat at Miraval again this year! It starts in two days. I was invited to attend when there were cancellations.  I quickly checked air fare to Tucson and Phoenix, thinking if I got to Phoenix I could drive from there, but it was all too expensive, so I’m not going to go.

If I had only been in Phoenix already!  But Pinky Sparkle Twinkle would have been there with me, and what would I have done with her for four days?

I was looking at the photo album on the LBC web site from the 2007 retreat, and found myself in one of them.  That’s me in the blue jacket on a rainy morning on my way back to lunch after a morning of speakers.  My journal on last year’s retreat.

Thinking of cancer. . . not thinking of cancer. . . thinking of cancer . .

From 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.

Life after cancer . . . advocacy

The group that got together in October to do community advocacy and resource directory for local cancer patients and survivors is waiting for the rest of us survivors to keep moving along.

We’re having an informal breakfast meeting next week at the local cafe on Main Street at 8 a.m. We’ll talk about the goals: create a directory of local resources and insert it into the state directory; recruit volunteers who will be trained by ACS to be in (the hospital/ clinic) (other place?) two or three mornings a week to answer questions and provide resource information and materials; recruit volunteers ACS will train for Reach for Recovery; help two local groups raising funds for research and treatment coordinate their efforts to continue $ for research AND keep some $ in the local community to help patients with the expense of accessing treatments and appointments out of town.  Some survivors also want to start a support group.

Since we are 2 – 2.5 hours from the front range where radiation treatment centers and other resources are located, we need to have some funds available to help folks get there, and improve the prognosis for people who otherwise might just skip treatment, or have a mastectomy instead of lumpectomy so they don’t have to have radiation, and to get to other facilities, when needed, in addition to the one the local hospital has contracted with. 

This community has raised enormous sums for Relay for Life, but none of that money stays in the community as dollars a local organization can distribute when needed to access tests, treatment and other appointments.

We have a LOT of enthusiasm in this new blended community group, so we need to keep focused and moving forward.  In the meantime, working on this has meant some of us survivors have talked to each other more often, which is functioning as the foundation for a support group, I think.

Not grace, but endorphins

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 Brittany’s little doggie and 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.  $$$$$$$$.  $$$$$$$$.

Now 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 Brittanys dog’s do. 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.

Going south and the asthma connection

Since I accidentally discovered the Mayo Clinic report that breast cancer survivors with asthma have a two-fold risk of mets to the lung, I have been to Arizona and discovered that my asthma didn’t bother me as much while I was there. I didn’t, though, go to Mayo’s to followup.  Why? My insurance company said I hadn’t met the deductible yet this year and I would have to pay for a pulmonologist visit and pulmonary function tests out of my pocket.

Haven’t met my deductible yet this year?! A year of visits with specialists, biopsies, mammograms, ultrasound tests, ob-gyn visits and tests, genetic testing, and all that medicine.  I found out none of my co-pays or payments for those things counted toward my deductible OR my “out of pocket maximum” this year.

Other reasons I didn’t have the testing yet: I changed insurance companies before the end of the year, and my tumor marker tests were good and even in the range for a person who has never smoked, even though I did until about 8 years ago. And my new primary physician was gone all November having surgery.

When I was in Arizona I felt like I could breathe WELL and DEEPLY, and didn’t need to use the inhaler I took along.

I got a flu shot the day after flying home in a sardine can and then was sick for 10 days with a cold and sinus infection.  Being back indoors with a forced air furnace was a drag on my spirits as well as my asthma.  Then it was Thanksgiving and I had company, and now here we are in December and I haven’t gone back to Arizona or talked to the doctors again about the asthma connection, but I started taking my steroid inhaler twice a day.

The reports say that breast cancer patients/ survivors who use steroid inhalers to keep their asthma under control have a better outcome.

My next three-month checkup is in early January.  I’m determined to follow through with this to keep this from being an issue. I don’t want lung mets because I couldn’t control asthma.

Test results all normal . . . .

The doctor called and said all test results were normal.

I am waiting a couple of days to see if I feel better now that “check-up stress” is gone before flying off to Tulsa or Phoenix.

I did ask her about the asthma connection, and she didn’t reassure me, she just said yes, mm-hmm, she had read it.

How my mind works while I’m waiting for test results . . . .

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.

Helping rural patients get to treatment centers . . .and other local resources

We’re having a meeting this Thursday to talk about what resources are available in our small town for cancer patients and survivors, and what we can do to raise money for some that aren’t accessible.

I’ve talked about my own struggle to find information when I was first diagnosed and heading toward treatment: Did people get chemo treatments in the local hospital? If not, where were the treatment centers? How far away were they? How did people get there?

What about radiation treatment centers? How did people get to them and home five days a week for five or six weeks?

Did people travel to the treatment centers each day, how did they afford that, did they feel well enough to drive themselves, and, if not, what were their other options? Were there places to stay, and programs to help with the cost? Did the public transportation (county express bus) go there, and how much did that cost? Were there programs to help with that expense?

How about support groups? Counselors experienced in working with cancer patients? Where did I find information on nutrition and supplements during treatment? What if I needed help in my home during treatment – who could I call?

I tried finding this information through my local hospital before my treatment. I was told there wasn’t any list or directory or one source for all of this information. A nurse eventually made several phone calls to gather information which she then passed along to me. I called all the hospitals in the little towns in this part of the state (the size of Massachusetts with the population of Boulder, Colorado), asked if there was a list or directory of local resources for cancer patients, and was met with the same response at each place: they were not even sure who to pass my call through to.

After my surgery, and after my radiation treatment, when I was back home and getting back to work, I went to the local hospital to get my blood work done and everyone who worked for the hospital and clinic facility was wearing a pink t-shirt for breast cancer awareness month. So I thought I’d do an experiment. I asked if they had a list of resources for breast cancer patients. They did not, and they were not sure to have me talk to. So much for pink shirt day.

Our little rural county with a total population of 10,000 in three small towns began hosting an American Cancer Society Relay for Life Event three years ago. The first year they raised over $60,000; the second year they raised over $70,000, and the third year they raised over $80,000. People who were heading up the event were related to cancer patients and survivors and they said some of the money was used to help patients with their transportation and lodging expenses when they had treatment.

It was like pulling teeth and I got treated like the enemy, but what I discovered was that none of the money raised in the Relay for Life stays in the community as cash dollars that are available to help people with the expenses of accessing treatment. Yet for the next relay in July, our local paper featured the story of a cancer survivor who said that ACS would have helped pay for her expenses to stay out of town during treatment, but she didn’t have to use their help because she stayed with family.

What is available is Road to Recovery, a program of volunteers who sign on to drive people to appointments but who are not reimbursed for their expenses. What is available for lodging is the reduced rate that ACS negotiates with some hotels near treatment centers. (As do the hospitals.)

A couple of weeks ago I actually had a representative from ACS call me to ask if I knew of any help for a woman who needed to get to an appointment out of town that week.

Local cancer survivors are meeting this week with representatives from American Cancer Society, their Relay for Life reps, and local organizations and other interested people to finally address this issue.

Where does the money we raise go? Is there any way to access it for treatment-related transportation and lodging costs? If not, is there another way we can continue to raise money for Relay for Life and raise money that we can keep in a local fund for this purpose? How about other local events? Can we expand the support for them in order to raise the money for treatment access?

Another place to call . . .

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.