When I first met my mother-in-law, in 1972, she had recently recovered from her second mastectomy. She was only 46 at the time. She’d had her prior mastectomy at age 31. Reconstruction wasn’t an option back then. I remember feeling sorry for her, but also marveling at her positive attitude. She looked great — she wore breast forms and, had I not known about her surgery, I never would have guessed she’d had both breasts removed. And I never imagined that one day I would be in her shoes.
I was diagnosed with breast cancer in 2003, when I was 54 years old. By then, both my mother and grandmother had been diagnosed with breast cancer, so I knew my risk was high. Still, it was a shock to hear the words, “You have invasive breast cancer.” Nevertheless, I counted myself lucky that my cancer was found at an early stage and that I didn’t need chemotherapy. After a lumpectomy and radiation, I began taking tamoxifen. By the time a year had passed, I felt fully recovered and my fears of recurrence had receded to an occasional anxious twinge.
Then, three years after my diagnosis, a new primary cancer was discovered in my other breast. Again, I knew I was fortunate — the diagnosis was DCIS, the earliest possible stage. But my breast surgeon told me that this time a lumpectomy wouldn’t suffice. The DCIS was extensive and I would need a mastectomy of the affected breast. I wanted to do everything possible to reduce the possibility of a third cancer diagnosis, so I asked for a bilateral mastectomy. Although I don’t carry a BRCA gene mutation, given my family history and the fact that I’d already had two cancers, my doctors supported my request.
Next came a big decision — whether or not to have reconstruction. While reconstruction isn’t considered cosmetic surgery, it is elective. I could choose to do it or not. My doctors didn’t push me in either direction. I’ve since learned that many doctors advocate reconstruction and even assume their patients will have it, sometimes without informing them that non-reconstruction is also an option.
My breast surgeon offered me some helpful advice — she suggested that if I definitely wanted reconstruction, I should have it done at the same time as my mastectomy, but that if I felt any doubts, I should postpone my decision about reconstruction. She went on to say that the most unhappy patients she’d had were those who went ahead with immediate reconstruction despite feeling ambivalent and later regretted it.
I consulted with a plastic surgeon. None of the reconstruction options he offered seemed appealing. I had a gut feeling that reconstruction wasn’t right for me. Knowing that I could change my mind later and have delayed reconstruction gave me the courage to move ahead with plans for a simple mastectomy. I asked my breast surgeon to give me the best cosmetic result possible — symmetrical incisions, no extra skin. I knew that if I had unsightly folds of skin, I might get depressed about that and regret not having reconstruction. To give non-reconstruction a fair chance, I wanted to look as good as possible with no breasts.
When I saw my chest after surgery, I felt relieved. I thought I looked fine and, happily, so did my husband. While the decision about whether or not to reconstruct was mine alone, my husband’s love and support helped me immeasurably. And the fact I had seen my mother-in-law living a full life without breasts reassured me that I could feel whole and happy without reconstruction.
My mother-in-law herself confessed surprise that I chose not to have reconstruction, given all the options currently available. But once she realized I had made a positive choice to live breast-free, she, too, embraced my decision. Non-reconstruction isn’t right for everyone, but it has been for me. Over seven years have passed since my bilateral mastectomy and I’m still enjoying my breast-free life.
Have you faced a similar decision about whether or not to have reconstruction? What helped you decide?
geezerchick says:
I totally agree with you My surgeon pushed heavily for reconstruction and was upset when I told her I didn’t want it. Subsequent doctors I’ve gone to all ask if I’ve been offered reconstruction. I can’t imagine wanting a bag of salt water stuffed under my chest muscles, or a chunk of my butt cut off and sewed to my chest. I would like to know more about the new stem cell approach, but that’s not available where I live. I got a comfortable knit prosthetic on eBay and I can go on with my life. That was the point. Thanks for speaking out.
lgoldie says:
I tend to agree. At 56 and having DDDs for along time, my back would probably be much better. And if I change my mind later, I could get implants…but I think no reconstruction is the way I would go. How would my husband deal…to be determined, but still my decision
angeljoy says:
Great to see you blogging here, Barbara! Your website was a great source of comfort and information to me when I needed it most. When one of my implants had to be removed due to an infection,my doc just assumed I’d sign on for more surgery. I didn’t know where to turn for info on not continuing on with more reconstruction. Luckily, I saw you in the breastcancer.org discussion groups, and I found your website. There’s not enough support out there for women who elect not to reconstruct at all, or women who, like me, choose the option when recon fails! God bless you and breastcancer.org for shedding some light on this! Thank you.
annyo says:
Wow–I am so thrilled to see this blog! I had a very similar story–double mastectomy 12 years ago for DCIS that was “sprinkled” throughout the breasts, so no lumpectomy for me. My own mother had had a double mastectomy and I saw that she lived a happy life. I scar very badly so wanted to keep the surgery as simple as possible. There is NOT ENOUGH written for women who want this option. It is assumed that we want reconstruction. Thank you for this blog!
traymaster says:
I had my mastectomy the day after Christmas and am now cancer free. I chose no reconstruction and I am very happy I did. I’m just sorry I didn’t insist on having the other breast taken too. I heard so much about how reconstruction would make me feel more like a woman. That’s the most ridiculous thing I’ve ever heard. I was also ask by the oncologist if I was afraid of radiation (my reason for a mastectomy) I love BreastFree.org and this blog.
marlisieg says:
May 21, 2014 will be the 7th anniversary of my bilateral mastectomy and I had opted for no reconstruction. In my mind, because of the many unusual problems I encountered during my chemo, I just “knew” that I’d be the one to have all of the possible side effects I’d read about from reconstruction. therefore, at age 64 with no babies to worry about nursing, my decision was easy . . . and I’ve had no regrets. For the 1st 6 years post-surgery, I lived “flat” happily,wearing over-shirts, cardigans, or jackets when needing to get dressed up . . . otherwise, I just wore loose fitting items like sweatshirts or other types of outfits that gave me a long lean look. Then about a year ago I got prosthetics and have enjoyed wearing them occasionally. I never liked wearing a bra anyway, so it was kind of freeing not to have to bother with one. But, now I do wear them depending on where I’m going. The best decision I could have made . . . the best of both worlds!
Bubster59 says:
Wow, I am so grateful that I survived my double mastectomy surgery. I am so blessed that I have a support system and friends and family to help me. I was surprised at how much I didnt hurt afterwards and how wonderful my surgeon and nursing staff were. However, on day 6, I so regret not having reconstruction, this is a true mutilation. I am being totally honest. I feel I have to be real, nothing even remotely normal about how my upper body looks, Im 60 certainly not a beauty queen but whoa.
jkbrca2 says:
Thank you for your story Barbara. I am relieved every time I read another story of a happy mastectomy without reconstruction story. I am only 37, and married, brca2 positive and have that same gut feeling reconstruction isn’t right for either. If I think about the choice to reconstruct i cry. I think deep down that no reconstruction is the best choice for me. I’m happy for women who have the choice for reconstruction. But I’m always glad to read that another woman chose not to AND was happy with end result. I don’t want to be another disappointed ambivalent reconstruction story.
ChrisT says:
I couldn’t agree with you more! The breast forms look natural. The people that didn’t know me before my diagnoses don’t know that they aren’t real.
I didn’t like the alternatives either. My husband was reluctant to put too much pressure on me to NOT undergo unnecessary surgery.
The most important thing is to do whatever you can to save your life. Anything beyond that is cosmetic. The people that truly love you, love you regardless of whether or not you have breasts.
donamariek says:
It’s so reassuring to read these posts. Almost one year ago (May 29th) I underwent a bilateral mastectomy. While I didn’t really care about reconstruction my co-workers said you’re still young (59) so of course I would want it. I talked to the plastic surgeon and he explained the procedure but I was still hesitant. I had the surgery and within two weeks my left side was so inflamed and painful, I ended up in the hospital with an infection and had to have the expander taken out. While in the hospital, the same thing happened to my right side so once again back into surgery and the other expander was removed. I ended up with MRSA and was put on heavy duty antibiotics. My doctor then realized I wasn’t a good candidate for expanders but would not do another surgery to flatten my chest for a year, giving the skin a chance to not only heal and so he could see what result I ended up with. Meanwhile, due to the heavy duty antibiotics, I had an encounter with C-diff this spring. I’m sure when I visit my plastic surgeon next week, he’s going to tell me that he won’t touch me with a 10 ft. pole. Now my right side has a small mound which almost looks like a small breast but my left side, the skin is all contracted and looks and feels terrible. I wish from the start that I just had the surgery done and had him remove the extra skin and just leave me flat chested. I would have been much better off. Anyways, point being: “Ladies, do what YOU feel the most comfortable with, don’t let others influence your decision”.
sal57 says:
I am so glad to find this discussion.
so converted my dining room into a work out/yoga/ballet space this weekend and have just started to ease back into getting in shape. If I do that I can rock 1920′s inspired clothes !
It’s 4 weeks today since my bilateral mastectomy.
I could have had a lumpectomy with rads on the infected breast, a reduction, hummm perky boobs? a double with implants, a single? I was lucky to have options, but my gut was telling me from day one to just have them both removed.
I did tons of research before making the difficult decision that I knew, deep down, was right for me and still feel that way
I did have to ask my surgeon about it as she was assuming I was going to go with the lumpectomy option as I was a great candidate for that. After I made the decision I went back and talked to her about being as flat, symmetrical and smooth as possible as that was important to me too.
I’m not quite symmetrical but considering what she had to work with (I was a 34F) it’s OK.
I am OK with my flatness ……most of the time, I am healing, but the scars are horrendous and most days I fall apart at least once. This is taking some getting used to!
I was so self-conscious first time at the local store that I just wanted out of there, but the second trip I chatted with the ladies I know there, told them what had happened and they have been amazing with their response.
I talked to my mother this weekend (who does not live close so hasn’t seen me and is in her 90′s) I was having a bad day facing how I look and all I got was “well you’re not married so nobody else will see them” and “you were so big before no wonder you wanted them off” Thanks Mom!
I was walking my dog the same day and bumped to a neighbor who said “my sister had a double mastectomy but it’s OK cause she had implants so nobody can tell”
Yesterday I was asked if I was considering reconstruction or prosthetics with a kind of an amazement that I’m not.
I have also been asked if they will grow back, but OK, she just turned 10 lol
I prepared as much as I could to face peoples reactions and don’t mind talking about it, but I’m just really mad that it is all so much about how one looks!
My personal therapy to help me accept this is to go around topless at home, that and I’m still a bit sensitive to fabrics. Which reminds me, I have also been asked (twice) if I am going to go topless in public now I don’t have breasts, ha ha ! (Nobody knows I do that at home)
I have tried clothes shopping without much success yet but I am still really sore and not quite up to it.
I am also now very aware about the extra 25 lbs I could lose as I can actually see by stomach these days
I checked into prosthetics but my insurance won’t cover them as it’s “out of network” and I have a deductible on that, and they are stupidly expensive, so will wait, as the only reason to get some would be to please other people and become more “socially acceptable”
I find my anger is turning into defiance and on good days I wear just my tank tops when dog walking (it’s hot out) and to hell with them!
I am unsure how this will all play out mentally over time, I will have to wait and see. If I can’t find clothes that work I will get in my studio and invent something (I’m a costume designer) but admit that every style I thought would work doesn’t. Oh well once I heal a bit more I’m planning a research day at the mall
I must admit that I feel so much more comfortable and am so very glad never to have to wear a bra ever again, can wear spaghetti straps (is that appropriate at the ripe old age of 57 ???) and I am a lot less worried about the future than I would have been with keeping them. I made the right decision for me, now I just have to get used to living with it all, anger and all.
sherry38 says:
I was 38 when I had my double mastectomy. I am 44 now. I did not have reconstruction, I thought I wanted it until a nurse at my oncologist office took a moment to show and make me feel hers.
She told me her husband was a “boob”person – which prompted her to go through with the reconstruction. She pointed out that they are not nice to look at and they feel like rocks on her chest. I agreed and realized that reconstruction was not going to make me “whole” again.
I will say that I don’t regret not having the reconstruction, but, I also do not enjoy putting clothes on anymore. I live in Central Alaska and we do not have “fitters” up here. I have never had a prothesis / form and I make do by wearing a camisole with “molded built in bra”. I was not large breasted before and this seems to do the trick.
I would like to try a prothesis sometime, but I do not feel that it is going to get me into wearing anything less then crew neck shirts, or v-necks with layered camis
rhogue says:
Thank-you for sharing. I’m very much processing the choices right now. I have three simultaneous cancers (IDC) so surgery on both breasts is needed. The whole idea of reconstruction was such a foreign concept to me – but then again, so was the whole idea of breast cancer and surgery! I get a little more time to decide as I am doing neoadjuvant chemo – which will hopefully stop the spread which is my bigger concern right now. But I know, that one day soon, I’ll have to face the decision – and I am pretty sure that reconstruction isn’t going to be right for me.