Tag Archives: Conditions and Diseases

Prophylactic Mastectomy: A Reasonable Option?

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.

Related articles:

  • 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

The Facebook Controversy, yes and no.

We seem to have stumbled into a full-blown controversy. I feel like I missed most of it but people appear to have been accusing Facebook of censoring the tattoo photo. Russ Bowen of KOMO News 4 contacted me about a censorship issue this morning and I told him that I had not posted the photo nor was I aware of its having been removed.

He did some investigative reporting and called the tattoo shop in Ontario whose Facebook page has been supposedly affected. The shop owner said Facebook has not touched the photo and has assured him it has no intention of doing so. Scott adds: The good news is that Inga and Tina’s work is getting out to more people than ever and is hopefully giving hope to those who need it most. */:-)

later that day: Facebook did remove the photo deciding that it did violate policy

and later that week: Facebook rethought their policy on mastectomy tattoos (see later posts)

My photo on the Custom Tattoo Design’s Facebook page stats as of 5:38 pm 2/20/13:

184,181 others like this.
148,653 shares
22,178 comments

Here are a few news sources that seem to be reporting directly off the newsfeed. Here is one headline:

“Facebook removes photo of breast cancer survivor’s chest tattoo, picture goes viral” Click to read the UPI article

Here is another:

“Facebook Removes Photo Of Breast Cancer Survivor’s Tattoo, Users Fight Back” Click to read the Huffington Post article

 

 

 

The tattoo broke free again…

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.

Related posts:

Tattoo Tuesday

My Fitbit Weekly Stats

This is what my weekly stats report looks like. You can keep track of your stats anytime by going to the fitbit website, (it’s free) and see your day compared to other days or compared to your spouse, workmates, or a team you’ve chosen. Think about starting a team of your family or whatever group you belong to. You can see your daily count in real time just by looking at your fitbit, this is what I generally do. Then once a week I receive my stats in an email. They look like this:

Hi Inga, here are your weekly stats.
12/24/2012 to 12/30/2012
WEEK’S MOST ACTIVE DAY Tue, Dec 25 WEEK’S LEAST ACTIVE DAY Mon, Dec 24
TOTAL STEPS 69,878  DAILY AVERAGE 9,983 steps BEST DAY 10,534 steps
TOTAL DISTANCE 39.73 miles  DAILY AVERAGE 5.68 miles BEST DAY 5.99 miles
TOTAL FLOORS CLIMBED 67  DAILY AVERAGE 10 floors BEST DAY 14 floors
TOTAL CALS BURNED 14,079  DAILY AVERAGE 2,011 cals BEST DAY 2,116 cals
 weekly-stats-table-weight WEIGHT CHANGE 0.0 lb
AVG SLEEP DURATION — hrs — min Seems like you haven’t tracked your sleep. Need Help?
Last week’s step winners

1 Suzanne 143,222 steps
2 Ela 70,315 steps
3 Inga 69,878 steps

See current leaderboardLast week’s badges

See all of my badges