Deciding whether or not to have a mastectomy (where all breast tissue is removed), either as a prophylactic or instead of a lumpectomy (where only the breast tumor and the area around it is taken out), is a very personal choice with many variables. BRCA1 gene mutation carrier, Caitlin Brodnick, in her terrifically-titled book, Dangerous Boobies: Breaking Up with My Time-Bomb Breasts (Berkeley, CA: Seal Press, 2017), makes a strong case for prophylactic mastectomies, describing a childhood filled with relatives dying from cancer. I have the slightly less risky BRCA2 rather than BRCA1 gene defect and I admit being biased against mastectomies. This is probably why the stories that resonated with me—totally unscientific and anecdotal—tend to support that view. An older woman I knew had very early-stage breast cancer when she was in her 30s and had begged her doctor for a mastectomy. She wanted to be 150 percent sure that the cancer would not return. But her surgeon did a lumpectomy and she is still alive 20 years later. One husband told me the sad story of his wife who had undergone a double mastectomy after a tumor was discovered in one breast. She still died of metastatic cancer few years later.

I have to admit that several of my friends, relatives and probably my surgeon too, thought I was completely nuts to refuse a mastectomy. When I had a routine visit to my breast cancer surgeon in 2013, having been cancer-free for six years, she suggested that I would be better off going the Angelina Jolie route. “No way in hell am I doing that,” was my response. I didn’t want to turn my boobs into unnatural numb lumps of silicone, or whatever else they would stuff inside them. In addition, I’d heard horror stories about post-mastectomy pain syndrome, edema, diminished arm strength and range of motion and implants that might become misshapen or leak. A year later I was diagnosed with a new cancer in the other breast. Again, I refused to have any mastectomies and opted for another lumpectomy. By then a couple of my friends had come down with full-blown breast Implant Illness from silicone implants, suffering various health problems related to toxicity, immune/autoimmune, neurological, endocrine and metabolic dysfunction. Their symptoms disappeared after having those implants surgically removed. Might I have avoided having to deal with the second tumor if I had agreed to prophylactic mastectomies? Whatever the answer is to that question, I still do not regret deciding to hang on to my breasts. Let’s hope my tombstone won’t read, “Here lies C. J. Grace because she refused to lop off her boobs.”

Resembling the irascible Queen of Hearts in Alice’s Adventures in Wonderland who declares “off with their heads” at the slightest offense, breast cancer surgeons are now likely to tell you “off with your boobs,” especially if you have tested positive for BRCA1 or BRCA2 genes. Clearly this is a very personal decision for a woman, but I firmly believe that Angelina Jolie’s stance has caused numerous totally unnecessary surgeries based on fear not science. This was borne out by an article in The Telegraph on December 29 2016, entitled “Number of women having breasts removed because of Angelina Jolie effect alarmingly high,” which reported on the skyrocketing rates of mastectomies even for women without defective BRCA genes. I couldn’t imagine choosing to have a prophylactic double mastectomy just because I have one of the BRCA genes (which I do) or because I might have a small early-stage tumor that could be easily removed with a lumpectomy. Even for those who have already developed breast cancer, studies do not seem to show survival rates to be better for those who have mastectomies over lumpectomies. A report was published in 2014 in the Journal of the American Medical Association entitled “Use of and Mortality After Bilateral Mastectomy Compared With Other Surgical Treatments for Breast Cancer in California, 1998-2011.” It was a large-scale study that looked at the records of all women in California who were diagnosed with early-stage breast cancer over a 14 year period—189,734 patients. The researchers concluded that survival rates were slightly better for those women who had breast-conserving surgery rather than mastectomies. I was one of those 189,734 patients, since I had a lumpectomy in 2007 in California within the 1998-2011 time frame surveyed.

The National Cancer Institute’s “BRCA1 and BRCA2: Cancer Risk and Genetic Testing” web page gave me some grim details about my gene profile. I learned that 55 to 65 percent of women with the BRCA1 gene and 45 percent of those with the BRCA2 gene develop breast cancer by the age of 70, compared to 12 percent of women without these genes. However to my mind, an even more dangerous aspect of being a BRCA gene carrier is the increased likelihood of ovarian cancer. By age 70, 39 percent of BRCA1 and 11 to 17 percent of BRCA2 women will develop tumors in their ovaries or fallopian tubes, compared to just 1.3 percent of women in the general population. Treatment outcomes and survival rates for breast cancer are considerably better than those for ovarian cancer. Breast cancer is usually found still contained within the breast, but only about 15 percent of ovarian tumors are discovered when still contained inside the ovary. When Angelina Jolie’s BRCA gene story appeared in the press in 2013, rather than focusing only on breast cancer and prophylactic mastectomies, I felt that there should have been much more coverage of the ovarian cancer risks faced by BRCA gene carriers. Two years later, a health scare prompted Angelina Jolie to have her ovaries and fallopian tubes removed. I too underwent the same surgery but as a prophylactic measure. Yet again I didn’t do as much as some doctors recommended. I waited till my periods had stopped to avoid getting slammed into an unpleasant premature menopause and refused a full hysterectomy.

What annoyed me the most about the BRCA gene issue was that when I was first diagnosed with breast cancer in 2007, a Utah-based company called Myriad Genetics Inc. had been allowed to patent the BRCA1 and BRCA2 genes. These genes were a natural part of my body—Myriad had not invented them. The company had simply been involved in their discovery. Thus only one vastly overpriced test was available to check for BRCA genes, produced, of course, by Myriad Genetics. The company’s stock shot up following Angelina Jolie’s May 2013 revelation of the double mastectomy surgery she underwent after discovering that she was a BRCA1 gene carrier. Women all over America were rushing off to get the Myriad test at a list price of almost $4,000 a pop, albeit some of that paid by their health insurance. Thankfully Myriad’s hold on my genes was loosened by the US Supreme Court, who ruled in June 2013 that merely isolating genes that occurred in nature did not make them patentable, which paved the way for other firms to offer testing at greatly reduced prices. When I checked online in 2017, I found a saliva kit to test for hereditary cancer that cost $100. Myriad had charged me almost 40 times more in 2007. At that time, Myriad offered free seminars at my cancer facility to give out information about the BRCA gene and tell us how important it was to have all our family members tested. They even gave us snacks and bottles of water. Very generous!

Excerpted from CJ’s forthcoming book, Hotel Chemo: Learning to Laugh through Breast Cancer and Infidelity. Take a sneak peek at the Table of Contents and the Introduction.