I saw this title in my newsfeed this morning and clicked on it with some trepidation but despite its lurid beginning it has some good information. I especially like how it contrasts the two women’s differences in pain perception, one woman describes not even taking any of the prescribed pain meds but just having a sensation of tightness post-mastectomy while another describes the pain as almost unbearable. I had the same experience as the first, aside from the horrid hangover from the anesthesia I had no pain at all and I wonder if the pain others speak of is sometimes from the placement of tissue expanders or implants under the muscle when they opt for reconstruction rather than from the mastectomy itself or if this is just an example of human variability. One of the women quoted also mentions the drains, (see second pic) those were the worst! Not actually having to deal with them but more like worrying about them every time I turned or moved for the ten days they were in place. Anyway, here’s Ann Marie’s article:
What It’s Like To Get A Mastectomy
After being diagnosed with breast cancer at age 40, Ann Marie Otis, now 44, had, as she says somewhat jarringly, her breasts “amputated.”It’s not a term most of us would choose to describe a double mastectomy, but she’s not wrong. After all, an amputation is the surgical removal of an extremity; a mastectomy is the surgical removal of a breast. Thinking of the two procedures as one in the same could drastically change our perception of breast cancer treatment. “A mastectomy is a big life change,” says Otis, who has documented much of her own healing—both physical and emotional—click to read more
Here is an article from the Fred Hutchinson Cancer Research Center’s Newsletter that focuses on Tina, me and the current trend in mastectomy tattoos. Yep, it is a trend. We met at her shop and photographer Robert Hood took a few shots of us together. Here is the picture of me. Click the link below to see a picture of Tina with me as the background. One of the other tattooists mentioned, Vyvyn Lazonga, runs the shop where Tina worked when we began our project.
Facebook Allows Mastectomy Photos: Tattooed Model In Controversial Picture Speaks Out
Now lest I sound ironic, people really need access to a community site for pictures like this. When I was considering the surgery, I would have loved to have been able to see pictures like you all can now.
I just honestly can’t say I ever considered I’d be the “poster girl” for prophylactic mastectomy, or nudity in the media, or tattoos in the workplace, or whatever direction this is taking this week, it is interesting. Interesting and a little scary. Anyway…
Yes. We agree that undergoing a mastectomy is a life-changing experience and that sharing photos can help raise awareness about breast cancer and support the men and women facing a diagnosis, undergoing treatment, or living with the scars of cancer. The vast majority of these kinds of photos are compliant with our policies. They go on to explain why breastfeeding photos are removed from Facebook: However, photos with fully exposed breasts, particularly if they’re unaffected by surgery, do violate Facebook’s Terms. These policies are based on the same standards which apply to television and print media, and that govern sites with a significant number of young people. I don’t take credit here because I admit I really didn’t have any opinion on whether Facebook should or should not allow pictures like mine to be broadcast all over their site. I mean, it is their site and who are FB’s real customers? The advertisers, right? Do you think they want mastectomy photos gathering shares & likes? I don’t see why they would. What IS weird though is why FB, is so nervous about breasts. OK, it isn’t weird, they are just using the same criteria that all other US media use but what on earth is wrong with breastfeeding? In my opinion, breastfeeding should be more visible, I mean, it is normal, it’s natural! Wouldn’t we all be better, calmer and happier seeing more of that? I know I would. Well anyway, now that Facebook has clarified their policy, about half the sites that are reporting on it are using, yup… my photo. Here is a sample: inquisitr posts new facebook policy
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.
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?
I was engrossed in making a presentation on the Part of Fortune for class this morning and completely missed Angelina Jolie’s announcement that she had had a prophylactic mastectomy until it was brought to my attention by a friend who asked if she could use a quote from me in light of it!
Once I looked the article up, I was thrilled that she had gone ahead with the surgery since I had thought about it back when she’d lost her mother to Ovarian Cancer, a related cancer. What shocked me was reading so many negative comments from people who don’t understand the context of a decision like hers. Sharon Osbourne received the same negative feedback when she made the same decision last year and it just amazes me how cruel and shallow people can be. I guess they are just proof that some people never really make it out of middle-school.
Their situations point up some differences between 1993, when I had my surgery, and 2013. In 1993, the BRCA gene test was new and no one was quite sure what percentage of cases it would account for, so I didn’t even have the test. We mostly discussed family medical histories. I had a traditional mastectomy which removed all breast tissue, leaving large scars. Reconstruction at a later time was offered but I preferred to stick with external prostheses and to cover the scars with tattoos. Angelina chose a skin sparing, immediate reconstruction option which she says left her with only small scars. Her cancer risk is slightly higher than mine but I am sure her results are more aesthetic than mine were pre-ink. Sharon had implants removed and I don’t know if she’s replaced them or not.
I’ll discuss why prophylaxis IS a reasonable way of dealing with cancer in another post, K?
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.
Here are a few news sources that seem to be reporting directly off the newsfeed. Here is one headline:
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.
She died of metastasized breast cancer on the night before Thanksgiving almost 2 years ago. Her first bout with breast cancer was in the late 80s when she was treated and “cured” at that time. She and I participated together in the Breast Cancer Fund’s Peak Hike 2000 at Mt Crested Butte. When she went to an ER for back pain in 2007, twenty years later, metastasized BRCA was found throughout her liver and bones and she was given 2 months to live.
A friend referred her to a wonderful doctor in Orlando who gave her radiation, chemo and hope. She lived another four years surviving some really bad days but enjoying a lot of good days too. She got to spend a lot of time with us in Seattle and attend my graduation, and also to enjoy the beautiful weather and all her friends in Orlando. She was with us when we adopted Rob and she taught him almost all of his tricks. Continue reading Happy Birthday, Mom!→
Brittany Wenger’s Science Fair project was to teach a computer how to read tissue samples from fine needle aspirations. Fine needle aspiration is a way to look at the cells in an actual lesion discovered by palpation or by mammogram. If positive for malignant cells, it can provide more information about the cancer to guide decisions about treatment. Her Global Neural Network Cloud Service for Breast Cancer is said to be able to successfully detect 99.11% of malignant breast tumors. In comparison an article on PubMed describes results that vary from 2-25% inaccuracy based on the experience of the physician reviewing the tissue. Greater accuracy in diagnosis from minimally invasive procedures can help prevent the necessity for more invasive procedures, like large-sample biopsies which may carry all the risks of surgery.
So, what was your Science Fair project? I remember taking a bunch of cuttings from our house plants and placing them in shot glasses after treating half with rooting hormone. I guess it demonstrated that I got the concept of experimental vs. control groups, but since I did the whole project the night before it was due, no rooting occurred in either group. 🙂