If you’re facing a mastectomy, you may be surprised to find that virtually everyone expects you to have reconstruction. Your doctors, your friends, and even your family may believe that without reconstruction you won’t be happy and you won’t feel whole or feminine. But what if you don’t share these concerns? What if you don’t think reconstruction is right for you?
Perhaps you want to avoid extra surgery and the added risk of complications and chronic pain, or maybe you simply prefer no breasts to reconstructed ones. Whatever your reason for choosing not to have reconstruction, it can be disconcerting if your doctors and the people who care about you don’t understand your decision. You may feel isolated and even start to doubt your own wishes. But let me assure you — you’re not alone!
Many women who visit my website, BreastFree.org, tell me how relieved they are to discover a community of women who agree that non-reconstruction is the best choice for them. Sometimes, these women have struggled to find a surgeon who will support their wish not to have reconstruction. In a couple of worst-case scenarios, I’ve heard from women whose doctors insisted that they see a psychologist before they would agree to perform a mastectomy without reconstruction.
I’ve long wondered why so many doctors believe their patients would be better off with reconstruction than without. It’s certainly not for medical reasons, since once a mastectomy is deemed necessary, simply removing the breast is the least invasive option. And detecting a recurrence after a simple mastectomy is at least as easy as after reconstructive surgery.
Perhaps some physicians believe that they or their loved ones would feel disfigured without reconstruction, so therefore assume their patients would likewise feel disfigured. Maybe friends and family have similar concerns. While well-meaning, these assumptions can put you on the defensive and make you feel that you have to justify your decision not to reconstruct. This is why it can be so helpful to connect with other women who have never regarded their mastectomies as disfiguring.
When performed by a skilled surgeon, a mastectomy without reconstruction can leave your chest looking smooth and flat, with a thin incision that will become almost invisible. If you want the appearance of breasts, you can always wear breast forms. I like to think of breast forms as external prostheses, whereas women who choose reconstruction have internal prostheses. Some women don’t feel the need to use breast forms at all, preferring to go flat. Far from being viewed as disfigured, women who go flat usually find that few people even notice.
Though your friends and members of your family may advocate reconstruction, they may be unaware of its challenges. One of my friends opined that having implant reconstruction would be just like having breast augmentation. Only when I explained that after a mastectomy a tissue expander must be inserted under the pectoral muscle and gradually filled did she understand the difference. Another friend had heard about tissue flap reconstruction. Once I described the lengthy surgery and long time under anesthesia required, as well as the additional scars, she better understood my reluctance.
While most women who choose reconstruction do very well and are happy with their decision, I sometimes hear from women whose implant reconstruction has led to chronic pain. They tend to feel isolated and depressed about their situation and are relieved to learn that other women have experienced similar issues and have had their implants removed, in most cases alleviating the pain.
The women who visit BreastFree.org appreciate the personal stories, photographs, and advice they find there, all of which help them feel part of a community. But many also want a place where they can communicate directly with other women. For that, there’s no better resource than the Discussion Boards right here at Breastcancer.org. The Boards feature a forum specifically intended for women who choose not to have reconstruction — Living Without Reconstruction After a Mastectomy. Women often continue to participate in this forum for years after their diagnosis, helping newcomers and sharing experiences.
Have you faced a decision about whether or not to have reconstruction? If so, did you find support for your wishes?
Miriammom says:
Three months ago I had a double mastectomy without reconstruction and I’m glad I did. My husband was very supportive. He told me “it’s your body so it’s your decision.” When making this decision my primary concern was to get this cancer treated as quickly and efficiently as possible. I also wanted to have the best possible function for things like working out, gardening, etc. Adding reconstruction surgery to the mix didn’t help.
As I see it, my identity as a woman isn’t centered on my body image. I was blessed to grow up around strong, confident women whose lives where centered around things other than fashion,beauty, etc. So, losing my breasts was difficult but not the end of the world.
Thank you for this helpful and supportive column
prairiekittin says:
Before cancer, I only wore a bra for ‘special’ occasions. Most of the time, I would just wear jeans and a T-shirt. I didn’t see any reason to change anything after I got cancer. Jeans and a T-shirt work for me, no matter whether I have both breasts or not. When I ‘dress up’, I have a silicon prosthesis I wear in my bra to make my clothes fit better. (I named her Silicon Barbie!) LOL!! Once I get home, that’s the first article of clothing I take off!
I see no reason to go through the extra surgery and pain just to look like everyone else. I’m 58 years old and I don’t care what everyone else thinks. I figure if they are looking at my breasts, they better have a good reason! LOL!
Eastperson says:
I had a mastectomy on left side with reconstructive surgery which included taking a piece of the nipple on right side and attaching it to left as the natural nipple was removed with the mastectomy. What they don’t tell you is that as a result both nipples have virtually no sensitivity to touch whereas previously my nipples were highly sensitive and an important area of foreplay during sex.
Also, when I had the reconstruction I weighed about 10 lbs more than afterwards and some of that excess fat was in the remaining breast that they took the mold from for the implant. Consequently, the implant side was always bigger than the natural side. Not an unusual situation but something to think about. And after 20 years the implant sprung a leak so now my reconstruction is just the deflated implant – almost like no reconstruction at all but not quite.
Scottea says:
After my bilateral I tried, I really tried the whole prosthesis caper but for the past 17 years have been wonderfully flat. I just packaged up the whole bras and prosthesis set and sent them to the local cancer society and they are using them to show women who have just been diagnosed with breast cancer what they are like.
As a child I was a test patient for a new way of total spinal fusion (1956 during the polio panic but it was not polio that caused my spine to twist and turn) and X-rayed more than is now allowed (this was done in California but the bilateral here in New Zealand) and I got used to being flatg chested then – - so good in summer now as I can go almost topless in my own backyard when i work in the vegetable gardens knowing I can’t get arrested as what would I be exposing – scars?
My specialist pointed out all the pros and cons of reconstruction and one of them was the ease of moving lymph fluid should I develop lymphodemia.
I have found it a great help when travelling overseas as I keep my passport and major cash in a modified pouch (picture a flat bra) which frees me from the fear of having losing everything if my purse were ever stolen.
Thanks for the great column.
Tobby says:
I had a double mastectomy 5 years ago and I had the expanders and I had one round of chemo and I had all kinds of problems. I had to go to a disease doctor because my breasts were beet red and the incisions would not heal. The doctor put me on Iv medicine for 6 weeks. They finally took them out and found out I had staph infection that were in the expanders. The day after I had the expanders out my white blood cells went up and the following week I started my chemo. It don’t bother me not to have breasts. No one notices. One way to look at it is you don’t have to pay those high prices for bras!!
GillyR says:
I was dx in May 2013 and had a single mx with node clearance, I had E cup boobs and hated the dis-symmetry from day one. In April this year I chose to have my left breast removed as well. After looking at all the options of reconstruction, I realised they weren’t for me. My body had been through enough and I didnt want to risk complications and possible on going surgery. I go flat and have some little stretchy bra tops with a bit of padding, but to be honest they dont make me look like I have boobs, just a bit of a bump! I wish that surgeons would promote flat as an option, but it’s not even mentioned. My hubby has made me feel just as attractive and sexy as he did when I had boobs too
Kimberly1965 says:
I was dxed in dec 2012. Had BMX in feb 2013 with expanders at the time.things went bad. Had expanders removed in aug 2013. I did my chemo during all of it. Finished the herceptin in march 2014. Dr told me I could never try the expanders again. I don’t like the way I look but it is what it is. I don’t like the prostesis. Or the bras so I just go flat.
NoRecon says:
Ten months today cancer free! I had a bilateral mastectomy ten months ago today. Reconstruction will never be for me. Unlike what the medical community seems to want me to believe, I am whole and beautiful without breasts. I recently quit wearing my prosthetics and opted for a Genie bra. I am so much more comfortable. And more true to myself too. I think most elective surgery is nuts. I’ve been through enough. I wish I could designate where the insurance money goes that I won’t be spending on reconstruction. Maybe to help kids with cancer or some other worthy cause. Girlfriends surprised me that seemed to think I should go through with reconstruction. And people tend to downplay breast cancer. I find that sad. Breast cancer doesn’t define me but it will always be a part of who I am. I will always talk about it if for nothing else to help other women with breast cancer find the humor in it. And if I can sell one woman on not jumping into reconstruction by telling my story I’ve done her a huge favor. I don’t think any woman knows she can live without breasts until she tries it. I thought I could but I certainly didn’t know for sure until I walked down the road. These days I know l can and will live without breasts for the rest of my days. No surgeon can ever give me back what I had. Breast that have no feeling make no sense to me. Nor does being carved up like a Christmas turkey to have reconstructed breasts. The good really outweighs the bad for me in saying no to reconstruction. I won’t take unnecessary risks and need to face more surgery down the road because I’m unhappy with the outcome. I won’t risk getting hooked on prescription pain meds. I am whole and I am beautiful exactly the way I am without breasts.