Bilateral Mastectomy without Reconstruction Recovery Timeline

Yes, because I took tamoxifen for 2 years and then aromasin for another 8 years.

@annie65

What I don't understand is why is hormonal treatment is still needed after double mastectomy.

I am reading "Hormone therapy is still recommended for women with early-stage breast cancer who have had mastectomies because it can help prevent a distant recurrence (metastatic disease)."

" The breast cancer cells have receptors (proteins) that attach to estrogen and progesterone, which helps them grow. Treatments that stop these hormones from attaching to these receptors are called hormone or endocrine therapy."

What other cancers are related to estrogen and progesterone? I thought that breast cancer only. If you have double mastectomy then where is the recurrence happening?

I am not a medical person but I understood that, especially in my case because I had positive lymph nodes, the cancer cells could have escaped the breast area and travelled to other parts of my body. Breast cancer recurrence happens in other body parts like bones, lungs, etc.

I understand if the lymph nodes are positive. What if the lymph nodes are negative? I had unilateral mastectomy on November 14th, but thinking of doing the second one next year. My lymph nodes are negative, therefore no radiation. Waiting for the Oncotype DX test.

I followed whatever advice my oncologist gave me because I trusted that she knew my case and understood what would give me the best chance of survival.

Hi @keiracancer -- your post would be something I've written myself. I was also 54, divorced and done with relationships at the time of my mastectomy. My dog didn't care one way or the other. My breasts had successfully nursed a baby, served their purpose and were ready for retirement. My doctors tried so hard to get me to do reconstruction. I get painful keloid scars and did from the mastectomy. I also have a nerve disorder so I knew reconstruction would lead me to more pain and scarring. I'm 64 now and glad I didn't have reconstruction. I wore prostheses to work or whenever I was dressing up in more fitted clothes so the clothes looked nice. I'm not working now and rarely wear them. I just wear a non-clingy top at home, walking dogs, running errands. I maybe put on the prostheses a couple times a month when wearing fitted clothes out. Happy with my decision. My only issue is my surgeon apparently thought I would change my mind so she didn't do a good job of preventing the dog ears on the sides. Not pretty and my sides have been so sensitive to touch/pressure for 10 years probably due to my neuropathy. Advice to others: Make sure they don't leave extra tissue for changing your mind. Thanks for sharing your story.

Wow thank you so much for posting. My wife has very recently decided "no more" after four surgeries left her with only one expander, almost back to where she started. I'm still trying to hold back my thoughts about that Dr (I have a detailed document on the whole process). She is having them take the last expander out, and, like you, go with prostheses. Your statement "Make sure they don't leave extra tissue for changing your mind" is now my next priority.

That's a big deal. You're really helping us! Thanks again.

How frustrating to go through all those surgeries with no results. The frustrating part about the side tissue is it wasn't there before the mastectomy. They told me it happens when they remove breasts and unsupported remaining tissue then falls to the sides. The cosmetic surgeon warned me before the mastectomy that that is the #1 complaint from women post mastectomy, but reconstruction would pull that tissue back around to the front. He called them side boobs. I thought it was swelling after surgery and was shocked when it never went away. I thought it was really insensitive when my former oncologist told me "we call those dog ears" and chuckled. I felt like saying, "Is that helpful and are you 12?" If your wife has that excess now, they can go back and remove it -- sadly another surgery. I can't do that because it would leave keloid scars on my sides that would be so painful with my arms rubbing on them. Wish I could. It adds 4" to my chest circumference causing me to buy a larger size top.

Let me say that I think you're a wonderful husband for supporting your wife in her decision to go with prostheses. You're also wonderful for being on this group chat trying to find ways to help her. Thank you for being you. Blessings to both of you.

Supporting my wonderful wife is easy. BTW she has the same tissue on the sides.

I had a bilateral mastectomy eight days ago. My wonderful surgeon told me to feel that skin on the side prior to my surgery. It was there, like fat, and she said that was the number one complaint if women decide not to have reconstruction (I chose no reconstruction based on my conversations with several women who had mastectomy). I have yet to have a single pain, but I am more than ready to lose the drains! I could definitely do paperwork for a few hours if I needed to, even the first day out of surgery.