Prophylactic Mastectomy: Angelina, Sharon and Me

Angelina Dunthor

Angelina as Lara Croft

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?

Here is a link to Jolie’s New York Times piece.

And a link to Sharon Osbourne.

Amoena makes external breast prostheses.

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The Facebook Controversy, not.

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. The photo has been shared over 148,000 times and some people have chosen to delete it which probably started the censorship rumors. Then UPI.com ran a news story without apparently verifying the facts and now Huffington and others are repeating the Facebook censorship story verbatim. So far, Russ at KOMO seems to be the only one to do some real reporting. (You rock, Russ!)

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. */:-)

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


Happy Birthday, Mom!

Today would be my mother’s 71st birthday.

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. Read the rest of this entry »


Congratulations Science Fair winner, Brittany Wenger!

The arrow on this mammogram points to a small ...

The arrow on this mammogram points to a small cancerous lesion. A lesion is an area of abnormal tissue change (Photo credit: Wikipedia)

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.

Google Science Fair project link.

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. :)


My Mastectomy Tattoo

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.

Read the rest of this entry »


Pass the Plate, again

I just discovered that Kitchen Aid has continued their Cook for the Cure contribution scheme and with it Pass the Plate. I blogged about Pass the Plate years ago here, but I did not realize that the “tradition” has been going on for 10 years now. Komen is not my favorite charity, The Breast Cancer Fund is, mostly because I think the focus should be on prevention of primary cancers and family support. However, the Susan G Komen Foundation is the largest, the best-funded, and despite the brouhaha of last February, the most esteemed by other charities for their accountability. So, isn’t this is the cutest plate?

Read the rest of this entry »


Try Nordic Walking

In 2000, Mom and I hiked Mt Crested Butte for The Breast Cancer Fund’s Peak Climb. There were lots of sponsors there: Athena Water, Wolfskin packs, Cliff actually introduced their Luna bars at the event, and Leki who provided pairs of walking poles to whoever wanted to demo them. The climb started at the base – 9,375 feet ( 2,856 meters) and ended at the summit- 12,162 feet (3,707 meters) and we really appreciated the support and assistance that the poles provided. They almost made up for the fact that there was no air, but not quite, LOL.

The Leki rep said the use of poles for walking developed in Finland from dry-land exercises done by skiers during the off season. It is easy to walk faster because you are pushing off with each step which means you also achieve some upper body exercise in the process. Mom and I demoed them, loved them and bought some when we got back into town.

I used mine a lot until we got the dogs and walks became more complicated. Now, Freya is gone and Rob is older and more leash-savvy so I am back to walking with poles. I like the full-body workout concept and I especially like the idea that I am burning as many calories as I can burn running.

I googled Leki and found that an entire sport has developed around them called Nordic Walking. Some marathons, and even the legendary American Birkebeiner, a Nordic Skiing event, have events for Nordicwalkers. I’m not much of a joiner but I think preparing for an event would be a good way to challenge myself. Who wants to walk a marathon? Join me!

Links:

  • Click here for Leki USA’s website. They make poles for skiing, trekking and Nordic walking. They also have articles and videos on Nordic walking technique.
  • Click here for Nordic Walking USA’s website. They have articles on events and technique.
  • Click here for the Crested Butte website. This is a great destination resort for hiking or skiing.
  • Leki poles and extra tips are sold at REI stores and on my Amazon-affiliate webstore. The link to my webstore is on the right of the blog. I am currently using the fitness walking tips on my old trekking poles. Next, I’ll buy the poles pictured in my store to the right because they are lighter and have a newer hand-strap system.
  • Fitness Magazine has a Nordic Walking Guide. They are calling it a new fitness craze. LOL
  • This article discusses the Cooper Institute’s findings about NW’s increased calorie burn over simply walking.

One More Reason to Start a Fitness Program.

25959Excess weight may be a more important factor in many forms of cancer, including breast cancer, than family history. A recent Fitness magazine article states:

“Women think breast cancer is mainly related to family history,” says Melinda Irwin, PhD, associate professor of epidemiology and public health at Yale School of Medicine. “But in truth, only about 10 percent of cases are. That means 90 percent of breast cancer may be caused by environmental or lifestyle factors like weight.” The article continues,

In a groundbreaking study published several years ago in the New England Journal of Medicine, women who weighed the most died of cancer at a 62 percent higher rate than those who were slimmer. The researchers blamed excess weight for up to half of all deaths from breast cancer alone. “The scary thing is that even as more and more research shows a link between weight and cancer, women are becoming heavier and less active,” Irwin says. She and other experts worry that this could lead to a rise in cancer cases down the road.

Click here to read the full article on Weight Gain and Breast Cancer by Richard Laliberte.

Click here for more Fitness Magazine.


Pass the Plate!

I am one of ten winners of a “Pass The Plate” plate from Club AmoenaKitchenAid will donate $5 to Susan G. Komen for the Cure® every time a plate is passed and registered until December 2009. The promo says,

“Purchase a specially marked plate, created by KitchenAid and Villeroy & Boch, and register it online. Make one of your favorite recipes, put it on the plate, pass it to a friend, and you’re on your way to making an impact.”

My plate is not getting passed as frequently as I would like, due to a bit of a learning curve with the registration form. I guess that is what I get for passing it to guys.  Therefore, my new plan is a “virtual pass.”

Anyone who would like to receive a virtual plate-pass may email me and I will “pass the plate” to you.  You’ll receive one of my favorite recipes,  the url to register the “pass,” and its unique registration number. Register it and KitchenAid will send 5.00 to  Susan G. Komen for the Cure®without any cost to you!

For my first pass, I’ll send you one of my favorite recipes. This one will be for mini-muffins that are just perfect for a brunch or dessert tray. If you send me your address, I’ll also snailmail a pink silicone bracelet from The Breast Cancer Site so you have a souvenir of your generosity! You can also purchase your own plate to pass from the KitchenAid website.

Does that sound like fun? Email me for a pass!


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