Facebook posts their new policy on mastectomy photos which states:
Does Facebook allow post-mastectomy photos?
Since Angelina Jolie’s news, I’ve seen several points repeated, so I’ll address them:
“She should have waited until she actually had cancer.”
This actually reflects several misunderstandings: of Cancer itself, a confusion between systemic and localized cancer, and a lack of knowledge about mastectomy procedures. She couldn’t have had the surgery she had if she had waited until she had cancer. What she had is a “skin-sparing prophylactic mastectomy” the point of which is to remove as much breast tissue as possible while giving a result that is not obtainable with reconstruction after cancer surgery. Compare the pix below:
Pretty big difference isn’t there? The first looks natural and the second is designed to look natural in clothing. The scars from biopsies and mastectomy really can’t be hidden that easily.
The other problem with actually waiting and relying on so-called early detection is that it assumes that a mastectomy could or should be done at that point when it is not always the best option. Cancers may be local or systemic and just because a cancer is small does not necessarily mean that it was caught early or that it will be easy to treat. A small cancer could be a very aggressive cancer with tendrils reaching into other organs that would need to be treated with radiation, chemotherapy or other treatments and skin that has been scarred and irradiated is not always capable of being stretched over an implant. Essentially, once you have a malignant tumor, you are no longer having a “prophylactic mastectomy” because breast cancer may be in other parts of your body besides your breasts as author Kelli and her sister, Fran, discover in this article, MY SISTER HAD A DOUBLE MASTECTOMY TOO, BUT SHE DIED OF BREAST CANCER ANYWAY.
This is similar to what happened to my mother. For those of you who haven’t read it before, Mom had breast cancer which was treated by lumpectomy and radiation. She had the requisite followups of mammograms and biopsies and when she was diagnosed with metastasized breast cancer in her lungs, liver and spine twenty years later, her breasts were clear of cancer. So if she had a so-called “prophylactic mastectomy” at the first sign of cancer, she would have had the same thing happen.
Obviously “preventive” means before cancer is diagnosed. If you want an approachable but still gratifyingly educational book about cancer, check out The Emperor of All Maladies by Siddhartha Mukherjee.
Here is another absurd yet oft’ repeated statement…
“No ethical doctor would ever remove a perfectly healthy set of testicles from a man who has no symptoms of testicular cancer, so how could a doctor do this?”
Here we have both medical ethics and sexism rolled into one question. The quote brings to mind all the tabloid scandals since the 60s from medically unnecessary hysterectomies, (the so-called Harlem appendectomy) to DES, from C-sections to prophylactic mastectomies… never mind that this time it is the women asking for the procedure. There are a couple of things that really irk me about this statement.
1. Testicles aren’t analogous to breasts, but to ovaries, and as important as these are women do get them removed much more cavalierly than they remove breasts. Breasts actually have little function aside from breastfeeding infants and Jolie and most other women who are in the age group to be considering this procedure have probably already done that.
2. Since cancers affect lungs, pancreases, stomachs, and plenty of organs that can’t be removed preemptively, does that mean that something that can be, shouldn’t be? These women are educated, can generally afford the procedures if not covered by insurance and are making their decisions with their doctors. Is that really different than any other elective procedure?
Bonus round: Right now, neither genetic testing nor prophylactic mastectomy is usually recommended by physicians but if Aetna’s policy posted online here is indicative, prophylactic mastectomy medically necessary for reduction of risk of breast cancer it may be recommended by insurance providers at some point.
I know this is controversial stuff, so please be thoughtful of others feelings when you comment.
Here is a link to a Daily Mail article about 4 young UK women who discuss their reasons for having this surgery.
Here is a link to an article by a woman who says she delayed having a prophylactic mastectomy and then did get cancer.
Skin sparing Mastectomy film on Youtube from Johns Hopkins
When Tina and I designed my mastectomy coverup tattoo, I considered it a personal thing that would be seen by me, Tina, Scott, my surgeon and probably a few women that I would show it to now and then. But when Tina was approached by MSNBC’s Michelle Smawley to be featured in the segment of MSNBC Investigates: Tattooed Women, she said she just knew it had to be about our project.
I am a shy person so it took me a long time to cozy up to the idea but my mother and step-mother’s experiences with breast cancer surgery and especially the feedback from women who had seen my tattoo pushed me to tell the story.
Michelle came out from New York City with her crew and interviewed Tina, my husband and me for hours and once the filming was done, life went back to normal….for about two weeks and then the anxiety started. Would she make us look like ninnies? Had any of us said anything particularly stupid? What were we thinking when we agreed to this? Finally, I couldn’t stand it anymore. I called her in New York and told her that she couldn’t go ahead. I was a nervous wreck and losing weight — the works! She laughed and said she had just gotten off the phone after having the same conversation with Tina.
She reassured me that she had made us a beautiful segment and that every morning the whole production crew crowded into her cubicle to watch it and all left with tears in their eyes. The only consideration they were having to consider was whether my topless images counted as nudity or not and Legal was reviewing that. She sent us a VHS tape of the show when it aired and we were all relieved, if not pleased. She will be my pick if I ever need a producer for a show. Afterwards, we would get calls from family members periodically, “You guys were on TV again” or Scott or I would get recognized at work or in restaurants occasionally. Tina and I were once at a Vince’s restaurant together and we ended up with a boothful of waitresses tearfully telling us how much the show had meant to them — it was wonderful.
But none of that compares to the buzz lately. We were at lunch with friends last week and one of them mentioned getting the pictures sent to him by a friend. Another friend from my knitting group got pics emailed to her from a friend in Australia and the tattoos were also featured on the Bob Rivers’ Show Facebook page with 10,870 likes, 7,923 shares and 1,028 comments, most of which weren’t from weirdos. I am not sure why the buzz goes in waves like this but if it helps more women to feel better about their bodies, then I will try to keep my blushes to myself.
My Mastectomy Tattoo Story
I got a surprise recently when I spotted pictures of my tattoo on pinterest. Scott posted pictures of it on his blog years ago and apparently the tattoo has taken on a life of its own. It has been pinned nearly 500 times and is linked on as many websites. Since that many people are being exposed to it, I guess it is time that I moved the pictures to my own blog and wrote its story myself. I’ll keep this post short but I’ll move it to a “breast cancer” tab and keep adding to it as I go.
I have had so many positive comments from women about how much my art has helped them to come to terms with their bodies and their scars that I want this to be a more permanent resource that people can refer their friends to and revisit as they wish. I promise to get some professional pictures done along the way as well.