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Breast Cancer Network of Strength is always looking for different ways to meet the needs of women with breast cancer.
As a peer-to-peer organization, Breast Cancer Network of Strength (formerly known as Y-ME National Breast Cancer Organization) is always looking for different ways to meet the needs of women with breast cancer who are seeking information about their disease and living with it, no matter what stage they’re in. Women with MBC certainly want to gain more information about their disease. With that in mind, we began seeking ways to really try to meet those needs.
We asked women with metastatic breast cancer to participate in a survey we conducted in 2007. The main purpose of the survey was to identify and prioritize the unmet medical, educational, and psychosocial needs of women with this disease. This online survey was posted on our website and promoted in our e-newsletter, Peer to Peer. Only people who stated they have had a medical diagnosis of metastic breast cancer could answer all the survey questions.
The number of women who responded to our 16-question survey delighted us. A total of 733 women answered. Clearly, we knew right then and there we had struck a chord with this all-too-silent community of women dealing with this stage of breast cancer.
One of the first things we asked these women is where they were getting medical information and personal support as far as their lives as a person with MBC. Not surprisingly, many said their family members were their main support. Perhaps a bit more interesting to us, however, was that while 42% of these women sought educational information about their disease from their doctors, almost as many (39%) turned to the Internet for this information.5 I wish there was more support for MBC in the area of mental health, economics, treatment options, clinical trials and addressing mood and emotions.
We also asked women how they felt, overall, about the treatment options available to women like themselves— women with MBC—including their awareness of clinical trials. Again, the survey revealed some surprising insights. Well over one-quarter of those surveyed (36%) told us they did not feel there were many treatment options available to them; 41% said the treatment options that were discussed were not clear to them. Even more signifi cantly, 73% of the respondents said they were not informed of, let alone offered entry into, a clinical trial when they were told their cancer had metastasized.5
Clearly, this survey not only exposed some serious gaps in how we, as breast cancer professionals, interact with women with metastatic breast cancer, but also offered some clues on how to close those gaps straight from the women themselves. We learned how women obtain information about their disease; up to 86% of our respondents indicated better use of Web-based educational and support materials would be most helpful to them, because the Web is really where they look. There is need for more information about treatment options and defi nitely about clinical trials—this includes a need for physicians to be better educated about clinical trials, as well.5
Whose Trial Is It Anyway?
But our work isn’t done just by letting women know clinical trials are an option they can consider when deciding which tools to use against metastatic breast cancer. Women whom I’ve spoken to personally have expressed several reasons why they may be wary of entering clinical trials. Some of the reasons are so basic that we, as advocates in this area, may have never even thought they would be a question in a potential enrollee’s mind.
For example, one question I’ve heard from metastatic breast cancer patients is this: what is the purpose of the clinical trial? They really want to know. Pharmaceutical companies may think they’re already doing that, but it’s clear not everybody comes to the information with the same kind of background and education.
Think about it: you’re diagnosed with breast cancer, you’re scared to death, and you don’t know what to do. Suddenly, you’re thrown into a whole new world with a whole new language—even if you have had cancer before. Now you’re being told it has metastasized. Although I myself am a breast cancer survivor, I am not a metastatic patient. Even with that, and the fact that I am a staff member of a well-known breast cancer advocacy group, I did not know what “first-line treatment” and “second-line treatment” meant until it was explained to me. It made me realize that, if I were diagnosed with metastatic breast cancer tomorrow, I’d have a lot of learning to do. There’s a great deal of information out there, but I’m not sure if even I understand it. If I were trying to educate myself about clinical trials, or my doctor was telling me about clinical trials, I would need confi dence that I have a good handle on the language of clinical trials in order to make an informed decision about whether to enter one or not.
The vocabulary question leads into another concern women have shared with me about how participating in a clinical trial may affect their lives, and/or the lives of their caretakers and family, and how much contact they’ll have with the investigators running the trial. They say, ‘Linda, I’m looking at a clinical trial, and I’m thinking about going into it, but I’ve got lots of questions. How will my participation affect my quality of life? What are the anticipated side effects? Who can answer these questions for me, and will they give me “real” answers?’ I think if pharmaceutical companies and clinical trial investigators anticipated these questions and had answers, it would say a lot to potential enrollees.
Finally, and perhaps I’m taking my peer-to-peer support to another level, but I think we also have to address the isolation often felt by metastatic breast cancer patients at the clinical trial level, too. I’m thinking about one woman in particular who I spoke with who said she’d really like to be able to talk with somebody else in the clinical trial with her, or even get information about somebody like her to compare experiences with. So maybe some kind of “matching” ability, the ability to connect clinical trial participants with someone who is also participating in it, depending on what stage they are at, may be something we as health care professionals should look into.
All of these points seem to underscore one signifi cant thing that we as professionals who work with women with metastatic breast cancer can do. We can start to take the negative energy and conceptions we’ve gotten from women and begin to reframe them into much more positive, proactive, and hopeful answers for them in the future.