Mastectomy and breast reconstruction pros and cons?

Thank you so much for taking time with this info. I haven't had surgery yet still undergoing chemotherapy. I actually seeing my surgeon next week, and by choice I've decided also to have a bilateral. I feel also the no worry is better for your mental health. I'm still in limbo for reconstruction.. If I do I'm waiting till after radiation, only because a friend of mine did it first and the radiation ruined what she did for reconstruction. I don't know if you have to undergo any other treatments, but chemo for me hasn't been to bad. I need 16 treatments total, and have7 more to go. Just feel tired at times, and I gained wait from the steroids. My surgery will be in October , and all this information has helped so much, and if you have any questions I should ask my surgeon would help, I've been making a list but since you been there all the help is appreciated.. thanks again you stay strong and healthy.

Hi @kruzin, fortunately, I did not have to have radiation or chemo prior to surgery. I am not sure why some women do and some do not. It may be that I expressed that I did not want to do either treatment unless it was critical that I did. But I am not sure that was the only reason. I do know that they said if I only had a large lumpectomy (it would have been nearly half my breast) rather than a mastectomy that I would indeed be having radiation afterwards, but if I had the mastectomy I would not have to.
I do know that studies have shown that there is a much higher possibility of capsular contraction if you have breast implants and then have radiation treatments following the mastectomy. In my case, I wanted immediate reconstruction because I looked at many online photos of women who waited and were left with a big bag of empty skin that would start to grow together.
They could be fitted with an expandable bag (TE or tissue expander) to open the space back up to allow for a future implant, but that just means you will still have a foreign body in there that you have to deal with, tubes hanging out, constant pain as you force expansion, many weeks or months of waiting while you re-expand the pocket, irregularly shaped pockets, possibilities of infection (open wounds there) and a delay on just getting your life back. I didn't know why I would want to put myself through that if I didn't have to.
I do know that capsular contraction around the new breast implant can happen any time even with just a regular breast implant done for aesthetic reasons (non cancer), but knowing how to massage and keep the pocket open, and to remember to continue to take anti-inflammatories (ibuprofen, etc.) for a while, will help keep the pocket open and reduce this possibility.
I do know that many of the breast implant manufacturers are giving a 'warranty' in that if you do have capsular contraction, they will replace the implant for free. You should ask the doctor about that.
Meanwhile, I'm sitting here 3 1/2 weeks out from surgery with two very nice looking, matching full breasts. I either wear a supportive tight bra or if at home, I wrap my chest with a wide elastic bandage for compression and comfort. Now each breast sports a 5" lateral incision from the nipple to the armpit that is still taped with surgical tape, but it is no trouble. I have tolerable pain and sensitivity but can go about my life (mostly). I too have gained weight since I had to go off my female replacement hormones 2 months ago, but in another week will be cleared to go to exercise class and get some activity back in my life.
I was lucky to get a really good doctor team for the initial cancer surgery and another good one for the plastic surgery immediately following. I did ask for and receive a nipple sparing and skin sparing surgery. So far, so good. Be sure and ask if you can have that too. Let them know if that is important to you. I hope that helps. Knowledge is power. Good luck!

Thank you for taking the time to respond. It's difficult enough to get a scary diagnoses never mind think of everything else that goes along with it. You decided at the time which probably was the right approach, now I hope somebody can help you with your situation. You have definitely helped me already, and thank you for that. I find it hard in my area to talk to people that have been through this and this site has really helped. Try posting on main page.. you stay strong and keep up on your path to good health.

I have had bilateral breast cancer and just found out I have the CHEK2 gene mutation and know in my mind that the best way I can go now is prophylactic mastectomy with reconstruction. I am struggling with this. I would like to hear from others about their experiences...what they went through making this decision and then if they were pleased with their decision and how they feel now about it. I would also like to know if they chose not to take this course and how they feel about that decision now.

@sandyjr
Sandy, I can only tell you what my surgeon advised me. I was ready to have mastectomy and surgeon told me no as even with mastectomy, women can still get breast cancer as they cannot remove all tissue. For this reason, I was given partial mastectomy. She also advised me that with full mastectomy, due to all the nerves running through that women oftentimes would have nerve pain for a lifetime. Ask questions from different specialists and go for second opinions with surgeons. My first surgeon was all ready to just go for full mastectomies and I am glad that I opted for the second advice, but it is purely your choice. All the best to you.

Sandy@dyr, where do I begin? Had stage 2 breast cancer left 27 years ago. Had lumpectomy, chemo, rad, tamoxifen. May 2019 diagnosed with DCIS right breast multifocal. Making the decision about reconstruction was the toughest decision i have ever made. For two weeks I waffled back and forth daily about what to do! The more people I spoke with, the more confused I got. Final decision was immediate implant( was open to expander then implant). Plastic surgeon felt he could do immediate implant. At 2 weeks post op, plastic surgeon said”it’s too big. It has to come out’”. It was flat but twice the diameter of other breast( tissue tension may have caused it to flatten). I did not like the look nor the feel of the implant( felt like a board on my chest). Had implant removed and had DIEP flap done. It looks like a breast. DIEP flap surgery is big surgery but not really painful. Much happier with flap. Also, when I finish with “nip and tuck” surgery(outpatient) I will never need another surgery. Implants will need to be changed periodically. I wish you good luck with whatever surgery you choose. And, I wish you an uncomplicated recovery and return to normal activities.

Interesting you mention nerves. My cousin has had bilateral mastectomy‘s and I asked her if she has any pain or anything and she said no they cut the nerves when they did it and she has no discomfort now. The surgeon I talk to yesterday didn’t say anything about pain from nerves. I am not a candidate for nipple sparing surgery nor flap surgery. I am 69 and my breasts are very different from each other and so the surgeon said that if I did nipple sparing that there was no way that the plastic surgeon could make them both at the same level. Also the flap surgery requires extensive hours under anesthesia and my age is against me here. I also do not like the idea of being under anesthesia for such a long period of time. That in itself has its own issues. So what it appears to be right now is that I would go with skin sparing mastectomy with implants. I do not like the idea of implants at all. She said that I would not be a candidate for the implant under my skin rather than under my muscle because I’ve had radiation which damages the skin . I know that I have to have the surgery but I am also agonizing over it. The doctor did give me a plastic surgeons name and I am going to make an appointment with him and see what he says. Thanks for your input. If you think of anything else please let me know.

Hi @sandyjr @betsyk and @trixie1313, you'll notice that I moved your messages to this existing discussion of the same name "Mastectomy and breast reconstruction pros and cons?" I did this so you can connect with other members who have faced these decisions before you. Click VIEW & REPLY to read through the past messages and experiences.

Hi Sandy, I was diagnosed with TNBC in Feb 2016; stage 1c but grade 3 in right breast (no lymph node involvement). Because of the aggressive nature of the tumor I chose to have a double mastectomy but was a good candidate for nipple sparing due to the smaller size & location of the tumor. I had tissue expanders placed during that surgery and then had to wait a year before I was cleared for reconstruction (after chemo & a clear PET scan at the 1 year mark). I interviewed two cosmetic surgeons and elected to go with DIEP flap surgery rather than implants. One of the surgeons told me implants can cause some women to feel cold all the time and I already had problems with that. I also didn't want to have anything foreign in my body. 2 1/2 years down the road I am still happy with my decision. I do have some hardened fatty tissue along the scar line on the lower right but the reconstructed "breasts" are warm & soft. The only real dissatisfaction I have is the numbness, not only from the mastectomies, but also across my abdomen where they took the fat to create the breast mounds.

I urge you to at the very least talk with them. Best of luck and keep us posted.