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'Living' Newsletter - Issue 13, Fall/Winter 2004

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That Word 'Survivor' Stirs Up Controversy
by Bonnie Bassett-Spiers

In the world of breast cancer, the word, "survivor" has been quite pervasive and until recently, seemed to be relatively harmless. Yet, the word seems to be getting a second look lately as it means different things to different people and is not a comfortable label for many.

The term, "cancer survivor" was put forth by the National Coalition for Cancer Survivorship in the U.S. in 1986 as a way to empower people to fight the disease rather than see themselves as victims. The National Cancer Institute embraced the term and defines the term on their website as the following: "An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition." (Journal of National Cancer Institute, NEWS, Vol.96, No.19, Oct.6, 2004)

In NCI's definition, a person is a survivor whether they are successfully treated or not. However, this often does not jive with many people, particularly people living with metastatic disease.

In a recent MAMM Magazine article about this very issue, 14 women out of 23 who responded by reflecting on the label "breast cancer survivor", were not comfortable with the label. Some just didn't like labels period. Others felt that the term was devalued by over use or that it connotes heroism that they were uncomfortable with. Another just did not want to be defined by the disease.

There is a particular concern with the use of the word as it tends to isolate women with advanced disease. When many women are struggling to either stabilize their disease or are hoping to stay in remission, they may not feel like they've survived anything. I certainly have related to this where I felt like I had only survived all the poking and prodding, the treatments I've endured for now and the side effects. I certainly can never say I've survived breast cancer unless I die of something else.

Therefore, especially for the metastatic population, "survivor" is a word that is more exclusive to the early breast cancer group. And, even then, as we all know, many of them will never know if they've survived breast cancer unless they die of other causes. However, I will acknowledge that some feel that as long as they're alive, they're survivors and that's great if that works for them.

I guess it's only natural that we want to figure out where we fit in. It's comforting to put ourselves some place and identify with a certain group. And, we all have to come to terms with this in our own way. For some, being a "survivor" will feel right, whether they are early breast cancer or advanced. For others, like myself, we often need to find new ways of describing ourselves, such as "breast cancer veteran" or "a person living with breast cancer". And, others still again, don't want labels at all.

So, it was interesting to find that the whole cancer community is struggling with this word, "survivor". I don't think we want to revert back to the dark ages and call everyone a "cancer victim" which connotes a sense of giving in to this disease. But even the American Cancer Society is using the term, "people living with cancer" more often now.

We will likely continue to struggle with this issue for some time until, as Dr. Laurie Zoloth, a professor of bioethics and humanities at Northwestern University Medical School in Chicago, thinks we come to understand the root causes of cancer better. Zoloth states,

"Someone with diabetes is not described as being a survivor because it is an ongoing chronic condition. If cancer could be effectively cured and was no longer life-threatening, then you wouldn't describe someone as a survivor" (Mantel, B. MAMM Magazine, Special Issue, Summer 2004)

In the meantime, the entire cancer community, will individually and collectively will have to carry on and use whatever word or phrase that captures the essence of their realities.

*This article may not be reproduced in any way except by written permission by the author.

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Can HER2 Status Change?
by Bonnie Bassett-Spiers

The answer to this question is, possibly. A very early research study published in the Proceedings of the National Academy of Sciences (PNAS) in June 2004 looked at 24 women whose primary tumours had been HER-2 negative and then later developed a recurrence. The study was investigating a new method of testing HER2 by looking at circulating tumour cells in their bloodstreams. What was somewhat surprising to the researchers was that 9 of the 24 women who had previously tested negative for HER2 were now HER2 positive using this new test.

Obviously, this research is very preliminary and that much more work needs to be done before these findings have any bearing on treatment decisions. However, a closer look at women who test HER2 negative but have cancers that behave more like HER2 positive may be warranted.

(Article: "Her2 status reverses itself" by Caitlin Cox, MAMM Magazine, Sept/Oct 2004.)

*This article may not be reproduced in any way except by written permission by the author.

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Webcast: 'Metastatic Disease: Quality of Life'
by Bonnie Bassett-Spiers

On December 8th the Dr. Susan Love Research Foundation provided a live webcast from the 27th Annual San Antonio Breast Cancer Symposium. The topic was "Metastatic Disease: Quality of Life". Dr. Susan Love was the moderator for the panel of experts which included Breast Cancer Patient's Advocate, Musa Mayer and Oncologists, Dr. Hope Rugo and Dr. Debu Tripathy. There was a live audience who posed questions to the panel as well as questions from participants who were logged onto the webcast from home.
The questions asked covered a range of topics related to metastatic breast cancer but most of them had to do with treatment rather than quality of life issues per se. The following is a summary of the topics covered and what was said:

How long could someone be on Herceptin?: Dr. Rugo and Dr. Tripathy stated that there was no research regarding how long someone can use Herceptin but both thought there was more leeway with this drug as long as there is no progression of the disease on Herceptin.
Women who are "triple negative" (ER neg, PR neg and Her2/neu neg) are unique and there's a need to develop specific treatments for these women.
The use of supplements during treatment: there's still not enough data on interactions between chemotherapy and supplements and the physicians on the panel still advise no antioxidants while in treatment. Dr. Tripathy encourages patients to ask themselves, what is the level of evidence for using these complementary/alternative therapies?
The use of Aromatase Inhibitors: It's OK to go back and forth between steroidal (Aromasin) and non-steroidal (Arimidex, Femara) aromatase inhibitors; there's no large blinded study comparing the two types at this point; they don't know if there is any one sequence of aromatase inhibitors for metastatic disease that is better than another; Faslodex is an estrogen receptor agonist but works similarly to the others.
Potential use of estrogen after depriving the body of estrogen with aromatase inhibitors: as a result of the estrogen receptor becoming hypersensitive to the estrogen, which leads to programmed cell death. Caution regarding side effects and risks was expressed by the panel with the use of higher doses of estrogen and as a result of current clinical trials in this area, researchers may find that lower doses of estrogen are preferable.
Sexuality, particularly low libido: No surprises here! The panel still had no real answers about this real quality of life issue. Dr. Susan Love expressed great concern about potential risks from the testosterone patch and they all thought that tools needed to be developed to deal with this issue more from a psychological standpoint.
Survival and prognosis: Musa Mayer addressed this issue and commented that there is a huge spectrum of metastatic disease, from being a chronic disease to being terminal and that there is an orientation more towards treating it as a chronic disease.
Hot Topic! Her2 switching: The panel cautioned that there is only a small amount of data that this may happen but as a result, a suggestion that it may make sense to retest for Her2/neu if the cancer metastasizes. They also thought it was a good idea to retest for estrogen receptor and progesterone receptor status as there can have been false negatives in the original cancer. As well, they stated that 15 to 20% of breast cancer patients can lose hormone receptors over time.
The panel also touched on brain metastasis and current clinical trials to study drugs that may help other chemotherapies get across the blood-brain barrier, support for metastatic breast cancer (www.bcmets.org) and the possible negative effect estrogen deprivation may have on cognitive function, independent of the effects from chemotherapy.

All in all, it was an interesting panel discussion and it did shed some light on some issues that affect people living with metastatic breast cancer and their quality of life. On the one hand, it was encouraging to hear that a fair amount of research is being conducted and we seem to be learning more all the time about the nature of this disease. However, on the other hand, some issues that really do affect quality of life, are still left on the back burner. Let's hope that leaves the door open for many more discussions in the future.

(An audio recording of the webcast will be available soon @ www.susanlovemd.org)

*This article may not be reproduced in any way except by written permission by the author.

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New Research on how cancers metastasize
Cancer research discussed in an article in "Obesity, Fitness & Wellness Week" (Atlanta: July 17, 2004) found "that tumours spread by reactivating and commandeering a "sleeper" protein that should have been shut off permanently in early embryo development." The protein is called Twist and its role is to tell genes when to turn off and when to turn on. In early embryonic development Twist helps cells to move from one part of an embryo to another and allocates these cells into different tissues. As the embryo develops this function is no longer necessary and it usually becomes dormant. However, what this research has discovered is that tumour cells can reactivate this dormant protein which enables it to move throughout the body.

This research has so far only been performed on laboratory mice, where they took metastatic and nonmetastatic cancer cells from tumours in the mice and compared them. They found that certain genes were only active in metastatic cells and the gene that stood out the most was one coding for the protein Twist.

It is too soon to determine what the clinical applications of this research will be but one of the researchers, Andrea Richardson, believes there is potential for developing a Twist inhibitor which wouldn't kill a tumour but would arrest its metastatic capabilities. A medical intervention, "… that would turn cancer into a chronic disease, rather than a deadly one", she suggested.

Source Article: "Obesity, Fitness & Wellness Week." Atlanta: July 17, 2004. pg. 206.
Original Research: "Twist, a master regulator of morphogenesis, plays an essential role in tumor metastasis." Cell, 2004; 117(7): 927-39.

*This article may not be reproduced in any way except by written permission by the author.

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Insomnia study still needing participants:
Trouble sleeping? Self-help management is available

People with insomnia may have difficulty falling asleep, staying asleep through the night or are waking early. Behavioral treatment has been found through research to be an effective treatment method for chronic insomnia. In these treatments, persons learn strategies that help them improve their sleep, with the goal of helping people with insomnia fall asleep and stay asleep during the night.

People with chronic insomnia may be eligible to participate in a University of Toronto research study. Behavioral treatment programs will be provided free of charge to participants in the study. Participants will be required to complete a series of questionnaires and sleep diaries.

People interested in participating in the research study can call the: Insomnia Methods Research Study
at (416) 946-8183;
or visit the website (www.nursing.utoronto.ca/insomnia);
or email at insomnia.methods@utoronto.ca.

*This article may not be reproduced in any way except by written permission by the author.

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San Antonio transcript available
Look for a transcript of the 2004 San Antonio Breast Cancer Symposium on www.breastcancer.org as of December 21, 2004.

*This article may not be reproduced in any way except by written permission by the author.

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Books of Interest: Breast Cancer Husband
by Marc Silver. Reviewed by Bonnie Bassett-Spiers

Marc Silver's new book is a very welcome and much-needed perspective on breast cancer. As Silver demonstrates, the male partner or spouse is also living the breast cancer experience but we seldom hear from him. I think that many of us who have had the experience of living through breast cancer with our male partners are somewhat aware of what it was and still is like for them, but men rarely share with each other, especially around this issue. This book finally provides men with a play-by-play of the whole experience, from a breast cancer husband's experience. It's like receiving some of the benefits of attending a spouse support group without having to leave home. I also found the book interesting from the perspective of a woman living with breast cancer because it provided a window into how this disease really does affect the men who love us.

Mr. Silver discusses every aspect of the breast cancer experience, from diagnosis, through treatment and onto dealing with "The New Normal". He leaves no stone unturned as he addresses such issues as the men who decide to leave, either physically or emotionally, being a Dad and helping the kids understand what's going on, managing extended family relationships and coping with feelings, hers and his. In the "Feelings" chapter, he includes a very sweet section about 'Car Criers', which I'm almost certain his male readers will strongly relate to. I was also very pleased to see that he doesn't shy away from the tougher topics: intimacy and sex, metastatic disease and even facing death.

The chapter on metastatic disease is short but at least it's there. It is truthful and real without being too frightening. However, Mr. Silver discusses how the 'M' word has replaced the 'C' word in terms of it being the word that evokes the most fear. He states,

"You won't hear a whole lot about metastatic
disease in the world of breast cancer activists."

My hope was that this was changing and that the word 'metastatic' no longer held the same level of dread that it used to. But perhaps I'm too idealistic. Nevertheless, all in all, the chapter is quite hopeful and may be inspiring to those men who are feeling quite discouraged.

Another chapter I was pleased to see included was the chapter I mentioned earlier entitled, "The New Normal". It was refreshing to see that Mr. Silver was acknowledging that when you've faced breast cancer one's life rarely if ever returns to the way it was before the diagnosis-the old normal. It is an important aspect of being told you have a life-threatening disease that partners and family members of the person diagnosed need to realize. The author acknowledges that it is common for the husband to want everything to be OK and for it to be over, but he needs to understand that for his wife or partner, it is not over and that together, they need to find their 'new normal'. This chapter may be helpful to couples struggling with this common issue.

Breast Cancer Husband is informative, practical and even humorous at times. The author concludes most of the chapters by summarizing with a list of tips for the reader. I guess it's a 'guy thing' to provide practical tips and is useful to the man who is initially attracted by the title and skims it at the bookstore before deciding to purchase it. The author also intersperses quotes from other men, called "Guy Talk". These are real and heartfelt quotes that provide the reader with many varied male perspectives which they can relate to other than just the author's.

Generally, as a married woman living with breast cancer, I found Breast Cancer Husband to be a very good resource and potentially very helpful to the new guy on the block who has just been hit over the head with this life crisis. I applaud Mr. Silver for taking on this project and I hope that all the other breast cancer husbands out there will feel the same after they've taken advantage of this new resource.

*This article may not be reproduced in any way except by written permission by the author.