Finding out that you have a BRCA or other mutation that increases your risk of cancer is a frightening and often confusing prospect, but even one supportive voice can make a huge difference.
Finding out that you have a BRCA or other mutation that increases your risk of cancer is a frightening and often confusing prospect. One way to deal with this fear of the unknown, however, is to advocate for yourself, so that you can know your options and make informed decisions.
There is no “one-size-fits all” approach to this kind of advocacy, however, explains Karen Malkin-Lazarovitz, of Montreal, Quebec, who eight years ago cofounded the BRCA Sisterhood, a peer support group for women dealing with BRCA and other hereditary mutations.
CURE sat down with Malkin-Lazarovitz at the FORCE annual meeting, where she urged people who have a genetic risk for cancer to be their own advocates. This can take many forms — from consulting an array of experts and soliciting second opinions, to gathering information from groups like FORCE and getting support from peers. She also encourages individuals not to be afraid to ask questions and to know that even one supportive voice can make a huge difference in helping others to navigate this journey.
Can you highlight the presentation you are giving at the FORCE conference, “So You Want to Be an Advocate”?
There are all different types of advocacy, and my focus in this talk is on patient advocacy. To me, being a patient advocate means being aware of all of your options, knowing who to speak with and where to turn when you’re trying to fact-gather, and basically, to do what’s best for you. There’s no right way to handle any of this, and you have to just do what’s best for you —whether that’s speaking with surgeons or plastic surgeons; whether it’s speaking with oncologists, organizations like FORCE or speaking with peers. That’s really the best way to find out what’s best for you. The more you research and the more information you gather, the more confident you will feel with the decisions you make.
What would you say is the main takeaway from your talk?
So many people are afraid to ask questions. When you’re dealing with a surgeon, for example, there’s that sense that they know best. Yes, they do know a lot, and it’s important that you trust in what they’re saying, but it’s okay to be your own advocate. It’s okay to want to do what’s best for you and get a second opinion. It’s okay to speak to a peer, whether that’s someone who’s had a really positive experience or someone who’s had a negative one. The idea is to feel that you don’t have to navigate this alone. Advocacy begins with your own personal advocacy: gather whatever facts you can, speak with a number of people, and find your own voice to advocate for yourself.
Not everyone who has a mutation likes to talk about it. Some people are sharers, while others like to sit by quietly and observe — both are okay. I have always had a voice, and at least if I’m able to share and help one person to get a little bit of information that can help them, then I feel like I’ve at least been able to pay it forward. I had none of that support almost 10 years ago in Montreal where there really wasn’t a huge network of support at all. I felt quite alone, and I don’t want others to feel that.
Was this the impetus for founding the BRCA Sisterhood?
Absolutely. It was that sense of feeling like nobody else understood what I was going through. Genetic testing was still an unknown world for people who had never done it, and I felt like I constantly had to explain my decisions. I really needed to find other women who “got it” and who I could connect with. We just felt that peer support was the way to do it. We started slowly with this support group of women from different areas of the world and then started reaching out to our communities to let them know that this was something that could help people in their fact-finding missions, and it slowly grew from there. Now, it’s huge, and the group is as successful as it is, because women feel that it is a safe place to be able to share their information.
BRCA Sisterhood is above all a tight-knit support group of women from around the world. There are minimal rules in our group, but they work really well. One of them is, you don’t tell people what to do; you only offer advice. Another one is we don’t discuss any politics, especially in this volatile time right now; it’s not really something that plays a part in our group, and we don’t discuss religion. We also don’t allow posting of “GoFundMe’s.” It really is peer support, and no professional advice. For every type of support you’re looking for, there’s a support group out there. This is solely peer support, and it’s worked really well because of those few rules.
Can you elaborate on the importance of a “safe space” for women to find support and reliable information?
A lot of these women who have dealt with mutations don’t get a lot of support from their families or they get negative feedback, so a lot of them shut down. In the overall scheme of things, it is a small population — we’re talking about 5 to 10% of the world — but that’s an awful lot of people when you think about it. That safe haven allows them to share what they’re feeling without having to worry about judgment from others. There are even women who have lost partners because their partners don’t understand what they’re going through. It’s a private Facebook group, people are comfortable with Facebook, and nobody outside can see what they’re writing.
What do you see for the BRCA Sisterhood moving forward?
The clinical trial session at this FORCE meeting was quite interesting. They’re not getting all of the participants that they need. We have some ideas about how maybe, with our large voices, we can do something to help, or at least, extend the outreach a bit more. I am hoping that will at least lead to more discussion. Without participants, you can’t get the research that you need. Clinical trials are really the way to see if treatments work; so little is known about clinical trials, and the lack of conversation scares people. Groups like FORCE and BRCA Sisterhood and other organizations throughout the world can help get the message out that all treatments start with clinical trials. We are a strong, powerful voice.