A breast cancer survivor shares her experiences with the BRCA gene.

Saturday, October 25, 2008

My New Role Model

At this point, I'm advising/encouraging several women with breast cancer, who have been directed to me. Breast cancer, it seems, has become a communicable disease.

None of them "want to inconvenience me"--some even apologize for "interrupting" whatever I'm doing with their call. It must be a woman thing. They are so used to giving to everyone else and aren't used to asking for help themselves. It reminds me of when I was in their position and so appreciative of the women who dropped everything to answer my questions and point me in the right direction.

So, I reassure these women: You can't inconvenience me...because it's not an inconvenience. Being there for someone else is the least I can do after the masses of people who reached out to me. They provided a lifeline. And now, I want to extend a lifeline to these women.

Every one of them has the same concerns: facing the possibility of an earlier death than they expected...worrying about finding the right doctor...getting the best advice...being overwhelmed at sifting through all the information and opinions...dealing with anger about doctors' offices for not returning calls...worrying about how their kids are holding up...fearing everything.

My advice is always this: Be proactive. Aggressive. Pester them until you get the answers or help you need. Anything to be heard. With this disease, you can't be passive or shy. You can't simply sit along the sidelines and patiently wait. You have to take matters into your hands. You have to take your life into your hands.

I'm not suggesting you storm the Bastille and take no prisoners, but I can assure you that you can be--and should be--diligent in getting the answers to your satisfaction. Some of the women I've been talking to have told me about doctors who were dismissive with their questions...when you're dealing with your body being mutilated by a knife, there's no reason for anyone to be dismissive. Or, surgeons who seemed irritated and impatient, as if this woman was taking up too much of their time. Then, I advise them to seek a second opinion. Not that they may get a different answer, but you need to be 100% comfortable with the physician you are entrusting your life to. And that includes the physician's office staff, and how well that's run. Believe me, you can be more assertive with doctors -- I promise you, their egos can take it.

It's time we all adopt a new role model...and her name ain't Dorothy.