Wednesday, October 19, 2011

Musings five years post-surgery

My photograph from the Tribune article.
Recently, the Chicago Tribune published an article about options after mastectomy surgery, which featured BreastFree.org. The story was syndicated across the country in print and online. Here's a link to the article as it appeared in the Miami Herald: "Not all women choose reconstruction after mastectomy; the options are many."

Publication of the article coincided almost to the day with the fifth anniversary of my bilateral mastectomy surgery. It was a great way for me to mark that milestone and to reaffirm my decision not to have reconstruction.  

I was delighted that the article presented a balanced look at the choices available for women after a mastectomy and particularly pleased that the reporter, Alexia Elejalde-Ruiz, highlighted my view that many women who choose not to have reconstruction still feel "whole" after the surgery.  

As some of you probably know firsthand, doctors frequently urge their patients to have reconstruction, believing that they won't feel happy without it. While I agree that reconstruction helps some women feel normal and whole after a mastectomy, I've met countless others who have chosen not to reconstruct and nevertheless feel complete as women. One of the missions of BreastFree.org is to educate doctors and encourage them to present non-reconstruction as a viable and positive option for their patients. So, I was very glad the Tribune story mentioned this issue.

The Tribune article also represented my coming-out party. While I've been very open about my surgery with friends and family, I've chosen not to include my full name on BreastFree.org, nor has it appeared in any other published materials. It felt good to finally put myself out there. Over the years, as I've met and communicated with so many women who have chosen not to have reconstruction, I've realized what a special sisterhood this is. I'm proud to be a member!

12 comments:

  1. It is lovely to see the beautiful face and smile that go along with this inspirational website. I am 4-weeks post-bilateral mastectomy without reconstruction. Your website was a great source of information and comfort as I navigated my diagnosis and a medical environment that while ultimately supportive seemed shocked by my resolve that I neither needed nor wanted reconstruction. Largely in part because of your website, I felt emotionally, visually and socially solid in my decision.

    Many, many thanks.

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  2. So nice to discover this blog again. I am not yet at the 5 year mark and, while I am still comfortable with my decision, I am finding that as I've gained more weight in these last few years, I am feel more self-conscious about my decision. I've just gone through another round of trying to find a way to look "normal' on top without being totally uncomfortable. (Buying bras, prostheses, etc.) Most of the women I know have had reconstruction so it's just nice to be reminded that there are those who are glad they didn't! Thanks for all the support.

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  3. I was so happy to find this blog and to read your recent story/ post. I had a double mastectomy (I'm BRCA+) without reconstruction in May and I have not regretted it for a moment. Being able to tap into the collective experience of women who made the same decision has been great. I made microbead forms and saved about $75; innovated for my swimsuits [if you are thin, the Speedo suits sold at Costco are perfect, with fibrefill inserts covered in swimsuit lining material, sold at fabric shops; Amoena also makes lightweight comfortable swimsuits but they are very expensive].

    My only issue, interestingly, is that I had trouble finding a shop which would bill Medicare for my silicone prosthetics and bras, even 'though I was covered, because I did not have a cancer diagnosis on my prescription[many BRCA+ women have preventive mastectomies and I had already been through chemo for ovarian cancer, also related to the BRCA mutation]. I tell friends and close neighbors about the mastectomy; I see this as a way of educating people about cancer-related genetic conditions and about the choice of no reconstruction. Maybe it's age, but I find it really liberating not to worry about breasts or breast cancer.

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  4. It was wonderful to finally "see" you in the article. Thank you for posting the link. Your website was a God-send to me almost 2 years ago, after a double mastectomy and no-recon decision when I found out I had to face breast cancer again after 13 years, a few months shy of my 50th birthday. Thank you.

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  5. Just wanted to add that, by far, the most comfortable bra I've found yet after years of searching is called the "Zeebra" and you can order them online. They aren't made for post-mastectomy gals but they do have pockets and come with pads. I can squeeze my silcone inserts into the pocket but moslty just use the lighter foam pads.

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  6. I was just recently diagnosed with adh/stage zero. I am having bilaterals 2012.i am not comfortable putting implants in and all that goes with the cosmetics of multiple surgeries. I just hope I can be comfortable with my new look. I am glad I found this website . It's comforting to know even though some don't think this the "norm" and how could you not reconstruct. It is an extremely personal choice. The stress alone and the loneliness can be unbearable.

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  7. I am getting a double mass very soon and have chosen no reconstruction. Glad to have found this site...what is the best mass. bras and inserts you would recommend?

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  8. On BreastFree.org, you'll find recommendations for breast forms as well as for bras and camisoles. Best of luck with your surgery and recovery.

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  9. A friend found your website for me. I love the idea of being breast-free and form-free. I had been more worried about being 'offensive' to others! I like the choice of not wearing a bra, not feeling I have to be 'responsible' by appearing 'normal'. I will enjoy using fashion to distract the eye but not worry too much about it. Am more concerned about the size of the rest of my body so looking forward to losing some weight and looking a bit more 'in proportion'!! Thanks for 'coming out' and sharing your thoughts and research.

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  10. So refreshing to see the comments on this website and to have a website that provides the other side of the story - the option to not reconstruct after mastectomy. Very hard to find this anywhere else. I had a unilateral mastectomy in March this year for DCIS and was not keen on reconstructing. When searching for information even when entering "no reconstruction" you get a whole lot of sites about reconstruction which annoyed me no end. I live in Australia and I am a family physician and I think the assumption about reconstruction is probably the same here as in the US. I have to say my breast

    surgeon was quite neutral and respected my decision although I do get the feeling that she wonders why I don't have reconstruction. I really didn't like the idea of expanding up the skin and muscle and sticking an implant in and then dealing with having to replace the implant somewhere down the track given I am in my 40's and it is unlikely to last indefinitely . The reconstructive options with your own tissue can be very good from what I have seen but I personally could not justify scarring other parts of my body for the sake of a breast that will never look or feel the same. It is good to hear that other women have probably also felt this way and opted not to reconstruct. I have not found using a prosthesis difficult - I'm sure there will be times when I get fed up with it but I really hope that long term I don't feel the need to reconstruct.

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  11. Wow, you seem to have a really healthy view of your life post-mastectomy. I have a friend who's had to face down the possibility of a mastectomy lately, and she's having a hard time seeing her options. I know that a lot of mastectomy products are comfortable and effective now, so I'm sending her your way to read your blog and your readers' comments.

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  12. Hi Sophie,

    I hope your friend finds the blog helpful. It's so stressful to be faced with a mastectomy and to have to sort through the options, especially when doctors and family may be urging a particular choice.

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