Did You Regret Not Reconstructing?

i just saw your other post.  are you brca 1 +? 

I'm not Brca+, but have a strong family history. I had the brca test after my biopsy diagnosing the BC. While the test was out and I was waiting, I kept thinking "I wish I'd just had them off after I weaned my youngest 5 years ago" when I was about 36. But, when the results came back negative, I knew I'd never have done a prophylactic mastectomy. I'd been on high surveillance since 35 with mammograms (all clear, including after the palpable lump my Ob/gyn found). Ironically I was scheduled for my first MRI...which would have found the tumor but also would have triggered 2 biopsies in my healthy breast (no malignancies found with prophylactic mastectomy).

ILC, in my case wasn't visible on mammos, and has a higher risk of contralateral occurrence, so even though I was brca neg, for peace of mind i did the double. The biopsies and imaging would have made me crazy (crazier).

I didn't reconstruct and haven't not yet regretted it. Surgery was easy, i felt pretty good at 2 weeks post op and had full range of motion by 4 weeks. I'm about 2 months out and besides a little nerve weirdness no pain. A few thoughts: I'm older than you-- early 40s, and maybe id have thought differently in my late 20s. I'm an athlete and the thought of reducing muscle strength on my pecs or elsewhere from a flap surgery was a bigger negative than my loss of breasts. I didn't have enough fat to do DIEP either and didn't want implants (granted i was biased from seeing my mom's high riding softball implant in the 80s...they're better now). I was a small B cup before...so it's not a huge change. I wear foobs sometimes, sometimes not. Also, because of the trauma of seeing my mom's battle with BC, I'd always worried about them...to the extent that they weren't a huge part of my romantic life. That being said...Of course i miss them. No reconstruction is not the end of the world, and I'm happy (hubby encouraged no recon as well), but I know several women who are happy with DIEP or implants, so it's a very personal decision. Although immediate reconstruction is surgically easier, esp if there's no cancer to deal with, it's not impossible down the road if you don't like being flat. Best wishes for your decision.

Thank you very much bearhitch for that article. It's very interesting, and it also links to http://www.myselftogetheragain.org/

which has the stories of 2 women who underwent reconstruction. I think these stories & pictures would be useful for anyone about to get a mastectomy - those who want reconstruction will get useful information about what to expect, and those who are not sure might decide that it's either not that bad or not worth it. Good luck to you!

Bearhitch, I didn't reconstruct and have never regretted that decision, only the reason I had to make it.

These are tough choices and I wish you well in making your decision.  ♥

Hi Bearhitch, You are lucky in being able to make an unhurried decision with time to do ample research. I also had that luxury. A few things that I did were very helpful. I had a consultation with an eminent plastic surgeon who specialized in breast reconstruction. He was able to tell me very frankly what my options were and what the outcomes were likely to be given my size, body type and history of prior radiation. I attended an information session at Memorial Sloan Kettering and saw dozens of before and after photos of a variety of reconstruction techniques. I spoke with a psychologist. And most helpful to me, I sat down one afternoon and wrote a pros and cons list. A friend had suggested that I do this so that if I had any regrets about my decision, I could review my list and remember the anxiety and stress I felt before. In the end I opted for the bilateral mastectomies without reconstruction. There are times I feel self-conscious about my appearance, but I don't regret my decision. One thing that has really helped me is yoga, which provides a very special way to experience your body. All that said, I was in my 50s and had already had an aggressive form of breast cancer and knew firsthand the hell of chemo. So it was a bit easier to make my decision.

I'm the same age as you, Bearhitch, and last December had a unilateral mastectomy. I chose not to start reconstruction at the time of my surgery, and intend not to reconstruct in the future. I did look into it, but though I was concerned about the increased morbidity of reconstruction, ultimately I decided not to reconstruct because no plastic surgeon could give me back my breast. It wouldn't have the same weight, or movement, or ability to breastfeed, and it certainly wouldn't have the same sensation. And if I couldn't have my breast, I'd rather go without than reconstruct. I didn't want a lump on my chest that looked pretty but didn't feel. I suppose it helps that I still have the other one, so that area of my sexuality isn't gone, just made lopsided, and I could still breastfeed any future children. And now I find that I kinda like the way I look now. I like my new body. I even have a bit of cleavage (thanks, prominent rib cage). I still find myself attractive and sexual, and I don't feel any less a woman. I'd rather I had never had cancer, of course, but I'm happy with my surgical choices and happy with the way I look. I may regret it in the future, but I have absolutely no regrets now. 

Forgive me rambling on about myself, but I hope it provides a perspective that helps. Since you're young, most people will probably just assume that you'll reconstruct and be baffled if you tell them you're not going to (something I found really annoying. I even had a friend get angry about what I did), but it's your choice. Your body. Whatever decision you make, it will be the right decision for you at that moment in time, and as far as reconstruction goes, it is something you can do at a later date, or even undo.

I understand if you feel guilty or like you don't deserve to do surgery because you don't have cancer and aren't "forced" to. I feel similarly. I had DCIS, which is noninvasive (well, mine was technically DCIS with microinvasion) and I didn't have to undergo chemotherapy or take hormone therapy, and I felt guilty that other people do need to. At times I wished I had to do chemo, because then I could feel like I had cancer. But my situation is what it is. It was caught early and I did what I had to do. Have you heard the term previvor? If you have a mastectomy, it's not that you're not treating cancer, it's that you're treating cancer before you get it (though yes, it's not guaranteed that you'll get breast cancer, even with a BRCA1 mutation, and it's possible to get breast cancer even after a bilateral mastectomy). Likewise, watchful waiting, either for a set period of years or indefinitely, is also doing something, though with stress and anxiety as side effects, rather than pain and surgical morbidity. 

I hope I'm not presuming to tell you not to be conflicted or telling you what to do, but if you do choose to have surgery, all that pain and recovery and cost will be for a reason. A mastectomy isn't a nose job. It's a vaccine. A gene carrier choosing to have a preventive mastectomy is doing it for a reason just as valid as removing a tumor.

It's a big decision whether to reconstruct or not.  If you do it at the time of the MX surgery you get the best cosmetic result.  It is quite possible to wait years after surgery to do reconstruction but I don't think  it will look as good.

I did bilateral MX due to strong family hx and the finding of a high grade abnormality.  I did not reconstruct.  This made my recovery extremely easy.  I had no pain at all.  Did not take the pain meds cause I didn't need them.  Not everyone will have that experience, but that was mine.

Part of why I didn't reconstruct was specific to me as I was in the midst of another, different medical problem at the time (now all gone thank God).  However neither my husband or I liked the idea of additional surgeries, possibly years into the future. 

At your age, I would consider it very, very closely though.  It can look really good. 

I'll say that I've come up with creative ways to have a very cute figure and can wear a bikini and look pretty good to, if I may say.  I have more fun now with my foobs (breast forms) than I ever had with my natural breasts.  Honestly.

You are so right Bearhitch and expressed all my same thoughts on not wanting to endure more appointments yet being told to factor my age in by everyone.  (Age 42). Ultimately I delayed reconstruction in hopes I could make a good decision when I felt more 'sane'.    I certainly advocate postponing it for that reason.  It's been 5 months for me and I don't regret not doing it at the time but I am scheduled to visit a PS this summer.   These forums have been an amazing resource for me weighing pros and cons the past several months and will help you with any decision you make.  

Hi Bearhitch, 

I am 44 and had a BMX seven weeks ago after a mammogram showed suspected Phyllodes tumors in my right breast. This kind of tumor can change from benign to malignant quickly, and does not tend to respond to chemo or radiation once malignant (it also has a high recurrence rate, and tends to grow quickly and aggressively, even benign). Biopsy isn't a reliable way of diagnosing them, and I have an allergy to local anesthetics that precluded biopsies anyway, so my oncologist presented my case to his tumor board, and they agreed that these things, along with previous breast issues and personal/family history of cancer, made BMX my best option. I had the surgery and pathology showed that there was no malignancy, but adenosis and several large and fast-growing fibroadenomas (I've had FAs since adolescence, but none this large or quickly growing). It was absolutely the right decision for me. I have met with a plastic surgeon twice, and was scheduled for latissimus dorsi flap surgery in May, but have decided not to continue with reconstruction--again absolutely the right decision for me. I have (as my husband and I call them) boobs in a box that I can wear if I need to in order to make certain clothes fit better, but I have only worn them twice. I am happy being flat, and didn't think I would be. It sounds like you are happy with your decision, and that is the most important thing, to feel at peace about it (for me anyway). I hope your surgery goes smoothly and you have a quick recovery!

I had a bad mammogram November 2010 and had a unilateral mastectomy because it was only on one side. I told myself "if it ain't broke, don't fix it".  My surgery was 4 days before Christmas. Now almost 4years later, I have talked to my surgeon, am having a mammogram next Friday, and other breast removed because I want to.  I have not regretted for one minute not having reconstruction.  I have been wearing mastectomy bras with prosthesis and don't want to do it anymore. Looking back I wish I had done the bilateral mastectomy 4years ago.  And always ask God if it's his will whatever decisions you make. Feel free to ask me questions. I hope this helps.

Theresa

Hi Bearhitch,

Just to give you the other side of the coin - I did reconstruct and I regret it! I'm actually having my implants removed May 27th after having them in for about a year. I had a DMX Feb. 2013 and implants after tissue expansion in May 2013. That whole process took such a toll on my body and health. Now, come to find out, the implants are falling and failing due to a number of issues. They are causing me discomfort and have to come out and either be replaced or I could have a big, giant recon surgery like the DIEP surgery. I said stop the madness and just take the implants out and sew me up. I want to regain my health and move on. The important thing is that the cancer in one breast was "taken care of" with a mastectomy and the other breast was removed as a preventative measure. No regrets at all about that. My only regret is that I put my body through so much pain and drugs with the recon and implant procedure. You are making the right decision if you are worried about recon. Some women want recon and wouldn't consider anything else and are happy in the end. Some are not meant for recon. In the end, getting rid of the cancer and your future health is the main concern.

Best,

I am a Uni, and haven't any regrets about not doing recon. I am not expecting any issues with the remaining breast, but if I do, I would remove it in a heartbeat, and would be happy to go flat, or wear Prosthetics if I felt like it.

Bettyboops~  One drain removed yesterday and the other coming out on Monday!  Woo Hoo!

Otceb, thanks for the link. It took me a sec to realize that I could read the book online. Both reconstructions look quite good. However, those are more or less best case scenarios, and I confess that I think they look worse than a plain scar, but I am probably a bit weird that way.