Answering the Call

As you may have gathered from reading previous postings, my life is forever altered as a result of the journey of breast cancer. Aside from the obvious, and to me relatively unimportant physical alterations caused by the double mastectomy, are the less visible, but far more significant changes to my approach to life and consideration of what is meaningful. I have mentioned in previous postings that I want to use my experience in ways that will help others, whether that is advocacy, education, or support. A couple of opportunities presented themselves this past week...

My friend, Kathi, sent the following e-mail to me.

So I was watching the Today Show this morning while I was getting ready for work and they were doing a thing about the Susan G. Komen Foundation (probably had something to do with their new initiatives...) and they had their house doctor Nancy Schneiderman on debunking common breast cancer myths. And the first one was that breast self-exams were important for catching early cancers. The doctor was saying there is no data to support that doing self exams was at all advantageous in catching cancers any sooner, and that mammography was much more adept at catching cancer.

So Ann Curry kept asking her “but it’s still a good idea to do self-exams, right?” and while she never would come right out and say that she was encouraging people not to do them, she just kept saying there was no data to support their effectiveness and that if women weren’t comfortable doing them, that they shouldn’t worry, just make sure they got their mammographies. I just thought that seemed so odd... it would seem that it couldn’t hurt, and there are going to be women who do find cancerous lumps before (or a month after!) a mammography, and it seemed counter productive to basically advocate against self exams! Anyway, thought you might find that interesting.

Well, I did find it interesting, and I found it shocking as well, so I jumped on my high horse, I trotted over to my computer, and I sent the following message to the Today Show cyberspace Pony Express e-mail.

I was disappointed and concerned to hear that Dr. Nancy Schneiderman was downplaying the importance of self breast exams for detecting breast cancer on your show last week. Although I didn’t see your show that day, a friend of mine was left with the following impression after watching your show: Women who aren’t comfortable examining their own bodies for lumps shouldn’t worry about performing self breast exams as long as they are getting regular mammograms. (Dr. Schneiderman based her comments on studies that do not confirm a conclusive link between self breast exams and early detection.) While Dr. Schneiderman’s comments were surely made in the spirit of alleviating women’s anxieties about self breast exams, and while she was citing actual studies, I believe Dr. Schneiderman’s comments were at best, irresponsible, and at worst, potentially life threatening to your women viewers.

For one, studies aren’t flawless, and follow up studies often report conflicting data. Second, mammography is not 100% accurate. In fact, for young women and women with dense breast tissue, conventional mammography is about 70% effective in detecting tumors. Furthermore, as reported on your website, studies show that dense breast tissue, in addition to being more difficult to examine with mammography, is actual more prone to cancer. (If this isn’t a strong message for self breast exams, I am not sure what is!) Additionally, about 20% of tumors are detected between mammograms, so mammograms can actual give women a false sense of security that they are good to go for another year. Then, there are the women who, for whatever reasons (including finances, accessibility to clinics with the equipment, or time constraints), do not get mammograms on a regular basis. Self breast exams are cheap, quick, and easy.

Instead of encouraging women to rely on imperfect medical technology to detect illness in their own bodies, shouldn’t we instead be teaching women how to become comfortable with their bodies and how to own their health? Afterall, who knows her body better than the woman who occupies it?

I am not a medical professional. I am just a breast cancer survivor. Last year, at the age of 41, I found a large tumor in my breast one month after a mammogram detected nothing. I actually had breast cancer in three quadrants of my breast, and the mammogram showed nothing. If I hadn’t felt the tumor myself and had instead waited another year for my next mammogram, my prognosis would be far different than it is today. I have encountered many women in the past year who also detected their lumps themselves. I am confident that I could fill your studio with women who found their breast cancers through self breast exams. Maybe we are anecdotal, but study or no study, we are living proof that self breast exams work.

I am wondering how many other women walked away with the same message my friend did and who may now feel it unnecessary to monitor the health of their breasts and ultimately their bodies. Since my experience with breast cancer, I have made an effort to educate women about the importance of early detection through both self breast exams and the latest medical technology. Your show is watched by so many women (and their husbands, partners, sons, fathers, etc.). It is unfortunate that the opportunity to urge women to take control of their own health was lost. I may be just an anecdote, but if you wish to communicate a message of empowerment to women, I would be happy to tell the world, via your show.

I received the expected and customary form e-mail response thanking me for my comments and advising me that they receive hundreds of e-mail responses a day and while all e-mails are read, all e-mails do not receive a personalized response. Nonetheless, I felt better for having gotten it off my chest, what's left of it anyway. (Smile)

Also this week, I received a call from the "Tea and Talk" founder, aka the Good Health Fairy, about a young woman in Williamsburg who was just diagnosed with breast cancer two weeks ago at the age of 34. I called the woman, and we spoke for awhile. She has already had a lumpectomy, and two lymph nodes were found positive, so she will begin chemotherapy this month. I offered to meet with her in person and then asked if her husband might benefit from talking to my husband. She thought he would find it helpful, so we are all getting together. I am excited that they are both coming over for dinner tomorrow night and bringing their young daughter as well. The woman is also very interested in joining "Tea and Talk", our informal support group for young breast cancer victors, and now she will have at least met one of us before our next gathering.

While I have a strong desire to turn my breast cancer experience into a positive for others (and for myself as well), I think the challenge moving forward for me is twofold and will require establishing balance. I mustn't allow my newfound passion to interfere with the time and attention that I need to devote to an income producing business. Second, I must take care not to turn this passion into my identity. I am not breast cancer, and I don't want that one chapter of my life to dominate my future. As always, a work in progress I am.