This was on a linkedin forum on LE: I didn't know Ingrid Bergman had LE, just Fyi

http://thegazette.com/2013/05/29/many-are-ill-informed-about-cancer/?goback=.gde_2251113_member_245283580

Many are ill informed about cancer

By Shirley Ruedy

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I was intrigued by the many critical remarks about actress Angelina Jolie’s preventive double mastectomy, announced May 14.

In my view, 98 percent of women — and probably 99 percent of men — are ill informed about cancer. Possessing that BRCA-1 or BRCA-2 gene, as she does, is very dangerous. She said her doctors told her she had an 87 percent chance of developing breast cancer. Options, please!

I boiled at one Chicago Tribune commenter criticizing Jolie’s allusion to having her ovaries removed later, to prevent ovarian cancer. “Breast cancer has nothing to do with ovarian cancer,” she huffed.

Wrong. That gene predisposes one to breast and ovarian cancer. Others said she “did it for the publicity.” You have both breasts removed to get publicity? Hah!

However, it’s not just breast cancer and the thought of dying: It’s the disease’s dark underbelly when you do survive.

I would have done exactly the same as Angelina, and I’ll tell you why: I, too, have had a double mastectomy (for cancer, 15 years apart.) I can’t describe how much I regret not having a preventive/prophylactic mastectomy on my right breast after the first left mastectomy.

I thought long and hard about a prophylactic move. Didn’t my family drop like flies from cancer? Indeed, I thought about it for so long that one day they told me I had cancer in the other breast!

So — another mastectomy. Unfortunately, the surgery was before the sentinel node biopsy that is now in common use. In eligible women, that method biopsies only two or three predictive nodes, “sentinels” to the rest of the body. If they’re clear, it eliminates removal of multiple nodes. Between the two mastectomies I was missing 44 nodes.

And this is where the dark underbelly of breast cancer occurs. I developed lymphedema, an accumulation of lymphatic fluid that swells the arm or arms and sometimes the hands of women who have missing lymph nodes. A minor percentage of women develop lymphedema after surgery for breast cancer — but it can equate to millions of women worldwide.

The upshot: If I had acted prophylactically as Angelina did, chances are good I wouldn’t be dealing with lymphedema today: Two swollen upper arms, uncomfortable compression sleeves and a mandatory hour-plus daily to do the Manual Lymphatic Drainage (MLD) massage technique. My generous husband and I do this therapy together to keep me from having fingers that the late breast cancer patient Ingrid Bergman described as “my little sausages.” Ugh!

Bergman eventually died of breast cancer, back when prophylactic mastectomies were not heard of. She would have benefited greatly from a prophylactic mastectomy. But — no gene testing then.

Did I have an errant gene? My brother died of breast cancer, and my paternal aunt. My mother and numerous relatives died of cancer. Thinking of my daughter and grandchildren, I had genetic testing at Mayo Clinic in Rochester, Minn.

It was negative for BRCA-1 and BRCA-2. The Mayo geneticist thinks I have an unidentified breast cancer gene. After the second mastectomy, I didn’t tempt ovarian cancer as I had breast cancer. Breast cancer survivors are at a higher risk for ovarian cancer. I had my one remaining ovary out.

Angelina is not a flaky Hollywood star. She’s proactive in more than one arena. I applaud that she has enough self-esteem to realize that the chest does not make the woman.

However, it’s significant to point out this pre-emptive move is not for everyone. Why should it be? I like green. You like blue. Is one of us wrong? No. Just different preferences.

As long as you’re fully informed, the choice is up to you. Angelina made the right informed choice for herself and her family.

Shirley Ruedy of Cedar Rapids, retired columnist of “Cancer Update” that ran in The Gazette for 16 years, is a breast and endometrial cancer survivor. Comments: shirleyr7@msn.com