Did u know Breast Tissue can b left behind w/Mastectomy

ErskineGirl

I was diagnosed with stage II ER+ PR- Her2- during Christmas 2015.  I had a double mastectomy with Diep flat reconstruction and had my nipples removed because my Oncologist told me that breast tissue can be left behind the nipple. I asked the Oncologist if she had any patients who had a double mastectomy and did not remove their nipples and got a breast cancer recurrence as a result and her response was YES. So being petrified, I decided to have my nipples removed too!  Post surgery, I find out from my oncologists and surgeons that I should consider tamoxifen because there is always some residual breast cells on the breast chest wall after mastectomy.  WHAT??? I flipped out!!  If I knew this I would have NEVER removed my nipples!  If I knew I was going to take tamoxifen anyway, I would have left my nipples and taken that risk!

I spoke with several woman who had mastectomies since I had mine and found out they didn't know the same information either.  I am an intelligent woman who did in depth research and asked many questions of every doctor and brought my list and taped my consultations. HOW WOULD I KNOW THAT RISIDUAL BREAST TISSUE IS "ALWAYS" LEFT with any mastectomy if no one told me??  Why not tell me that there is No guarantee that they can get every single breast cell.   I asked every question but how would I know to ask that question?!&@  Why not tell me that breast tissue can be left anywhere after Diep flap mastectomy or any mastectomy for that matter--especially since I would not know to ask. No one every warned me and nowhere in my research did it mention this possibility!  I couldn't find one post on any website that mentioned this information.   Simply said, I didn't know what I didn't know!   I feel that I asked specifically about nipples so why wouldn't a doctor clarify and say there is always a chance breast tissue is left behind so I could make a better, educated decision about my nipples.

Talk about depression.  I am so depressed.  I got a double mastectomy because I did not want to deal or worry about breast cancer anymore.  I did not want to take chemo if my lymph nodes were clean which they were.  I don't want to take Tamoxifen either.  I get that I reduced my risk. What I am angry about is that I didn't have all the information before I made my decision.

Did anyone with a Diep Flap or any type mastectomy know up front this information in advance--that some breast tissue is always left behind in any type mastectomy as they cannot guarantee they can get every single breast cell?? 

I am going to the top surgeons, oncologists and doctors at the top woman's cancer Hospital in NYC! Why?

All thoughts and contributions welcomed.

Janett2014

My breast surgeon told me before the surgery that it is impossible to get every single bit of breast tissue. She said that's why there would be so many follow-up appointments and I would be on an AI for five years. The plastic surgeon talked about it too, as did my medical oncologist.

I'm sorry that none of your doctors informed you of all the facts.

New-girl

I had a modified radical mastectomy in 2012. I too went to the "top" team in my area and thought I researched everything. I was told a few cells could be left behind but a bmx was the most aggressive form of treatment I could choose. Because of the course of treatment, I did not have to do radiation or chemo. They did ask my to take tamoxifen which I declined.

2016 I am diagnosed with a recurrence. Have now been to 4 doctors at different hospitals. I am supposedly seeing the top ones again in our area. Saw one last week at a major research hospital. She told me I had excessive tissue left after my bmx!! Said even though I had a modified bmx the surgeon left way too much tissue in the area! She recommends a 2nd mastectomy to remove my DIEP flaps and more breast tissue.

I am ticked, mad and frustrated. I had no idea I should have asked to see how much breast tissue was left behind after surgery. BTW, the new MRI I had done in 2016 showed it clearly. Pretty scary stuff when I saw all the tissue with calcifications that matched my mammograms in 2012. Now I realize I should have been doing mammograms every year. Thought it was stupid without real breasts so I didn't ever push getting them done.

Sjacobs146

My doc did not recommend mastectomy. Part of the reason I was comfortable with that decision was because I did some research and discovered that mastectomy wasn't a guarantee against recurrence. On the positive side, you won't be doing mammograms any longer. Many women are traumatized by the yearly mammogram. I'm sorry that your docs didn't adequately explain the post surgery treatments to you.

dtad

newgirl...Im so sorry this happened to you. Im going to go out on a limb and say that IMO the skill of the breast surgeon has a lot to do with how much breast tissue is left after a mastectomy. This was something I knew going in and it definitely influenced my choice of surgeons. Just something to think about when deciding on a BS. Good luck to you....

ksusan

I'm sorry you had this experience. FWIW, I went flat (no recon) and was told beforehand that even so, I'd be recommended to do radiation, chemo, and Tamoxifen.

besa

Erskine-You have a right to be upset.

My doctors made it clear that some breast tissue would always be left behind in the chest wall after my bilateral mastectomies (one was prophylactic and done 4 years after my initial mastectomy) and there would still be a chance of local recurrance or a new primary bc.

Even if every single breast tissue cell in the breast could be removed (which of course it can not) an ER positive woman with invasive bc would still need to take tamoxifen or an AI to cut down on the chance of getting metastatic disease. The idea is to try to stop any bc cells that may have moved beyond the breast (and this can happen even in node negative womem.)

New-girl. I am so sorry you are dealing with this. You had no way of knowing there was a problem. Hind sight is 20/20. I don't know of anyone who had a mri specifically to see how much residual tissue was left.

trackercs

TNBC, 2015 lumpectomy, chemo, and radiation. Recurrence in 2019. Double mastectomy with chemo. My surgeon left a LOT OF TISSUE behind. I told the surgeon no reconstruction I would be "going flat." Apparently she didn't understand what this meant. Same surgeon who did my lumpectomy which I was very happy with. Now, my chest has two large depressions where the breast tissue was removed and then there is a huge amount of tissue under the depression. I have this quarter of a breast at the bottom of these depressions. I've searched the internet and cannot find anyone with all this tissue remaining after a double mastectomy. I'm waiting to finish my chemo to start looking for a breast specialist to find out what my options are, either remove the tissue or reconstruction which I was never interested in but I can't live with these quarter breasts hanging on chest. To make it worse, because of the radiation, the one side is significantly smaller. I was also expecting no longer needing mammograms. Remove the breast, nothing to x-ray. Not for me, because of all this tissue left behind mammograms will be required. That's going to be very unpleasant trying to compress a quarter amount of tissue. Ladies, please be extra vigilant. Talk to surgeon's patients to see if they are satisfied with the results. Ask what they would have done different. Of course you're never given enough time. In the beginning it's all rush, rush, rush. TAKE THE TIME. Save yourself the regret.