Mastectomy and breast reconstruction pros and cons?

I was 38 when I started treatment for triple negative stage 3B and lymph nodes, skin, chest wall. I had a mastectomy and tissue expanders put in after a few months of chemo, then we waited and I did 7 weeks of radiation.

In September I had a DEIP Flap. My plastic surgeon had a fancy PowerPoint that he went through when I was first diagnosed. He had a graph of people's perceived quality of life shortly after surgeries and then in the long term, and from the data it looked like everybody was happy post surgery but in the years that followed people's satisfaction went down or up depending on which way they went. The DEIP Flap had a high satisfaction rate 5, 10, 15 years out.

When I just had the tissue expander in I did feel that maybe it would be fine and we could skip the whole second reconstruction, and it was frustrating having a second surgery. I had to stay in the hospital for 4 days to make sure all the blood vessels continue to be hooked up properly, and I had a 1-year-old at home at the time who was freaking out. Luckily the healing process was much better than my first surgery I think because I wasn't on IV chemo I was on a pill chemo.

Now 9 months out I am so happy I went ahead and got my reconstruction. It's nice not to have to worry about anything leaking, I can go to all my scans and MRIs without worrying about tissue expanders or other things. Because of my extensive radiation I'm not symmetrical or anything like that and we had to work on the other side so I've got scars all over the place but I don't care.

I haven't had feeling on the reconstructed breast, but I see that as a pro. Sometimes if my husband wants to get touchy feely and my other side is feeling overly sensitive I can always redirect him to the resurrected boob, lol.

It’s so strange. I almost made it to 5 years on AI and then developed tendinitis, in both hands, worse on dominant hand. I went to my husband’s hand surgeon who gave me cortisone at 2 sites on one hand and a brace like you would wear for carpal for 5 weeks. He said my finger joints were inflamed and to take turmeric and ginger. I have similar pain on the inside of both knees and backs of both ankles. I am too burned out to see an orthopedic or rheumatologist right now. But it is also tendinitis. As I was sorting my papers for all my 5 year follow-ups I came across the carpal tunnel/ tendinitis side effect on the list. I just can’t believe it took so long but maybe I am completely drying up, since they can’t find my ovaries either!

I went with silicone gummy implants because I didn’t want several more surgical sites to use my own tissue. I asked my plastic surgeon to give me the same look that I had pre double mastectomy. He amazingly did it, but they are too tight (they also are ice cold all the time on the bottom half). I have sensation on most of my skin but not my nipples, yet they react to the cold. I often wonder if working out causes the muscle to make them feel tight and maybe he could have gone a little bit smaller to compensate. I have to admit they look just like my real breasts but I am always aware of my left side, otherwise most days I probably would not think about it if they both could feel like the one on the right.

Wow, I am sorry you and @tessspike are having these joint and movement issues from endocrine therapy. There are quite a few conversations about these side effects.
There are quite a few people who could use your firsthand knowledge about these issues. Maybe even the validation for others knowing that you can “feel their pain” is helpful.
Do you have any insight to share on lumpectomy or mastectomy, flat or reconstruction?

We must have been typing at the same time.
You must have a great plastic surgeon to make them so perfect. How long ago did you have your reconstruction?

Well—he jokingly said that I was looking good for my age and making his job easier. I was 63. I had it done 2 months after the expanders so it will be 5 years in August. He asked me for permission to feature them on his medical website. Who knew, haha!

As uncomfortable as the AI made me feel/ combined with Prolia for my bones, I did my best to stick it out. I don’t know why I fell apart to the degree that I did in February. My oncologist said I should hang in until June 1, but my endo saw no reason to stop. So I liked her opinion better! I will let you all know how my 5 year check ups go this week. MRI was this morning (and Covid finally got through my mask last month!) This MRI was more stressful than the one when everyone was pretty sure it was cancer. Now, it’s fingers crossed and prayers!

Had reconstruction and revisions after mastectomy. My fat was used to make a new breast. I'm still facing another revision.
Had Anestrozole for a short time - go 3 trigger fingers and my hair thinned.

Hi @colleenyoung :). Yes, I would make the same decision again. Along with breast cancer in the one breast, I had a benign tumor in the other. The non-cancerous tumor had been there for over 10 years, but interestingly enough, I had recently received a letter from Mayo (before my breast cancer diagnosis) to invite me to a breast cancer study because my type of benign tumor sometimes turns malignant for women. So, no, the decision to go double mastectomy was not difficult for me. My doctors spoke with me several times about a lumpectomy, almost to a point that I felt that's what they recommended. The team did not verbalize this to me, though. Of course, a lumpectomy is much simpler, recovery is easier, reconstruction easier, and percentages of cancer reoccurrence is similar when you compare results of a mastectomy to a lumpectomy. I understood what the team was telling me. . . but they were not going to be the person going to bed every night wondering if another duct was hiding another small tumor. And with dense breasts anyway, it is very difficult (or nearly impossible) to tell the difference between dense tissue and a new breast lump.

So, I asked myself, "Do I really want to live that way??" I was pretty sure I wasn't going to be able to ignore the fact that I'd always be wondering if there was another tumor lurking beneath in those ducts. As it was, my doctors had trouble feeling the tumor in the first place (even when they knew where it was bc of the tests). I had TNBC. I wanted to remove all of the doubt I could for myself. And I wanted a life after it was all over. I didn't want to have to keep checking and worrying if I was missing anything. Because . . . I had missed the first one. Thankfully, the mammogram did not.

The type of reconstruction decision was not difficult for me, either. My body reacts to a fair amount of medications, chemicals, bee stings, etc. I'm one of those people. So, to use anything but my own flesh to reconstruct seemed like my only option. I knew the recovery would not be easy, and I knew I would have scarring, numbness, changes in my body. But I forged ahead.

I've just completed my final revision surgery (almost 2 weeks post-op) . . it's been 2 1/2 years since my cancer diagnosis, and 1 3/4 year since my double mastectomy. I feel relieved this surgery is over. It wasn't difficult, but it was the last piece I needed to "drop". I've been carrying this cancer basket, so-to-speak, and it's been heavy. I think I will always carry the basket itself, because once you've picked up a cancer basket, it becomes part of your accessories for life. But my basket isn't as full anymore. I rather imagine it as a beautiful wicker basket, one that swings on my arm. It's much lighter to carry now. And I'm glad I've "dropped" out some of those last pieces that were still heavier for me to hold. Now, I imagine myself putting in some freshly-cut daisies instead. 🙂

Yes, I would make the same choice again. It is difficult to choose to remove a part of yourself that identifies you as a woman. Of course it is. But my plastic surgeon and her team gave me such a gift. . . the scarring is fading. . . my new breasts are soft and move like normal flesh (because they are). There is some numbness, but there is no pain. :). My new nipples are healing nicely, and within six months, I will reach for the very last piece of this intricate and sometimes very complicated puzzle. . . . I will get my 3D tattoos. :).

There's so much coming at us with a breast cancer diagnosis . . . and we have to make decisions in what seems very little time. Doing your medical research is part of it - but talking to women who've been there is a large part, too. We can't turn back the clock once we've made these decisions that forever alter our lives. Listening to stories from other women can be so very helpful, but in the end, we still have to weigh the choice(s) ourselves. Time, prayer, and support from those whom I trusted were the pillars that gave me the strength and assurance to make the decisions I needed to make. And then I trusted God to give me the courage to follow through with those decisions.

I hope this helps someone out there who is caught in the fray of the breast cancer fabric. You do the best you can. And you keep getting up, until one day, you find yourself standing again. 🙂

Sniff, thank you for that beautiful story, and the amazing analogy of a basket brought tears.
I just know your story will help many women make decisions or live with the choices that were made.