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double mastectomy with/without reconstruction

Hello! I’m 62 years old and diagnosed with triple-negative invasive breast cancer StageIcN0M0. Currently, I’m under chemotherapy for 8 cycles/24 weeks and I’ll have the last cycle of the chemo next week. I will have a double mastectomy in late June since it is triple-negative breast cancer and I have a family history. My surgeon strongly suggested I have a mastectomy with reconstruction even though I originally planned to have a mastectomy without reconstruction when I saw my surgeon this week. Now it’s a bit hard for me to make a decision (with or without reconstruction). I would like to hear your opinions and experience. Especially what was your experience/feel if you had a double mastectomy without reconstruction?

16 Replies

@Lindsay2022

Hello and welcome.

Whether to do reconstruction after mastectomy is a personal choice and that choice should be respected by the surgeon if there are no medical reasons to not.

I am sure you will hear from other members but I would like to introduce you to @ashcon who was diagnosed with TNBC, had a bilateral mastectomy and chose not to do reconstruction. I know we have some members with TNBC who DID have reconstruction but I can't think of any at this time. Hopefully they will chime in as well.

Wishing you well with your surgery. Do you have a date yet?

Lianne

@Lianne_Moderator
Hi Lianne, Thank you very much for your reply and for introducing me to @ashcon. I have a date of surgery at end of June.

Lindsay

ashcon
2170 Posts

Hi @Lindsay2022,

Nice to cross paths with you again 😁. One more chemo - congratulations on getting through a pretty tough thing to go through!

As @Lianne_Moderator mentioned, I chose a preventative, or prophylactic double mastectomy - no recon. I was 54 at the time. I had a few reasons for my decision. They were: I didn't want to risk complications from the additional surgery(ies) that would be involved in reconstruction. I didn't want the potential risks associated with implants (and implants were what I would have needed had I decided to go with recon). I was done with treatments by then and just wanted to get back to my life, work, etc. And I was kinda done with my breasts, they had served their purpose. Plus, I was kinda small-breasted to begin with, so it was not a big transition to go from small to none. It was still a transition, but today, 4 years later I'm grateful for the ease of just throwing on a shirt and going. And (bonus) I don't have to get mammograms anymore (big grin!)

The surgery itself was not bad. Recovery was about 6-7 weeks, but I also had a bunch of lymph nodes removed. I also had 25 rounds of radiation after surgery. Are you getting radiation? If yes, that may impact the type or timing of reconstruction if you choose reconstruction. By the sounds of things, you won't be having lymph nodes removed?

I'm interested to hear why your surgeon is so keen that you get reconstruction? Did they say why? Sometimes, they falsely assume that all women need to have breasts to feel like a woman, but I still feel very feminine.

BTW, staying flat is a reconstruction option. Especially if you pursue an aesthetic flat closure

And what was it that made you initially want no reconstruction? And what is it that is making you question or reconsider that initial choice?

Here's another link on prosthetics, reconstruction, and living flat that you may find helpful.

Ultimately it is a very personal decision. I used this personal decision guide to help me in my final decision. Don't forget, you can also ask your surgeon if it's possible to make one decision now, but come back later if you change your mind, and go the other route.

I am sure (I hope) many others will chime in here, as it is a common topic.

Shout out if I can answer any other questions about my own experience with you, if it'll help!

@ashcon

Hi Ashcon,

Thanks so much for your very detailed reply and helpful information.

I have the same reasons to choose double mastectomy without reconstruction as you had. My breasts are not small, but I think I could psychologically prepare to accept a flat chest for the transition if I choose no reconstruction. I can still make a final decision about having reconstruction or not before I have an appointment to see a plastic surgeon. What I was wondering is 1. Do you feel comfortable when you wear breast prostheses, and the breast prostheses look natural? 2. Do the breast prostheses slide up/down on the flat chest when you run/do yoga/do excises, or swim?

Lindsay

JustJan
1538 Posts

@Lindsay2022 I was diagnosed with TNBC and ovarian cancer in 2019 and am BRCA1 positive. When I had my surgery for my breast cancer I had a lumpectomy as I was not aware of my BRCA status at the time. Because of my BRCA status, I just had a prophylactic bilateral mastectomy on March 22nd without reconstruction. I too am 62 years young and was very large busted. My breast surgeon encouraged me to meet with the plastic surgeon to discuss reconstruction options. She was worried about how I would feel going from a lot to nothing. I did meet with the plastic surgeon and the only reconstruction option for me were implants. Because I was on a medication for two years for my ovarian cancer before I could have my surgery, I had lots of time to research my options.

I chose to go flat for a few reasons. For me, I only wanted one surgery and because of radiation on the breast that had cancer, chances were slim that I could do this. I did not want to deal with expanders and having them injected with saline for several months prior to implant placement.

There is a higher risk of infection with having implants or other types of reconstruction.

There is a chance of implant failure and needing to have them replaced.

There is a chance of implant sickness which is a real thing but hard to diagnose.

Finally, I could not wrap my head around having implants placed into my body for purely aesthetic reasons.

Following my surgery, I did end up with an infection in my “good breast” side and the surgeon said if I had gone with implants they would have needed to be removed.

So far I have not missed ”the girls” one bit. I am still healing from the infection but will be getting prosthesis to wear when I want something a little more than being flat. The nice thing is I can try on many sizes and pick the one I want. I can’t offer you any feedback on how the prostheses function but I’m hoping to go for a fitting in the next few weeks.

If you haven’t seen a plastic surgeon yet, I would encourage you to do so and get all the information you can to help you make an informed decision. I’m sure you will make a decision that is right for you.

Let me know if you have any questions I might be able to help answer.

ashcon
2170 Posts

Hi @Lindsay2022

Lindsay,

I'm glad you've got some time to make this decision.

Good questions about the prosthetics! To be honest, I usually don't wear any prosthesis. Not at the gym, doing yoga, or going about my normal day. But when there is a need (usually due to a work-related need or function), I found the Muse bras by La Vie en Rose to be comfortable, stable and “pretty”. Not gonna lie, they are a little heavy. I guess they have to be to stay in place! But they are the best quality I've found so far.

If you go to the Community Services Locator (found in “Resources” located in the main Menu above) you can search for some mastectomy specialty shops in your area, or online, who offer other great things for us ‘flatties’

By the way, mastectomy prosthetics are considered to be medical devices, so can be claimed and reimbursed thru your insurance (if you have) and/or on your income taxes as a medical expense.

supersu
1098 Posts

@Lindsay2022

good morning Lindsay!
reading thru your post and it tweaked a memory, (waaaaaaaay back there in my grey matter somewhere), that I had seen a post about an upcoming breast reconstruction workshop…..
and here it is!

you have had some wonderful lived experience responses here…good luck with your decision making.

welcome to the community-never hesitate to reach out. we love hearing how things are moving along for each other….it really is a great community.

best
su

#breastreconstruction #breastcancer #welcomenewmember

@ashcon Hi Ashcon, Thank you very much for your reply. Your experience and useful information are helping me to make a final decision. Thanks!

Lindsay

@JustJan Hi JustJan, Thank you very much for your reply and for sharing your experiences. I think I will make the right decision after I discuss it with people who provide me with their experience and helpful information.

Lindsay

@supersu Hi Su, Thank you for your response and the information.

Lindsay

Littlebeth
140 Posts

Hi @Lindsay2022

I had my bilateral mastectomy a year and a half ago and chose to stay flat for the same reasons as others here. I have tried various types of prostheses - the “puffs” that come with mastectomy camisoles, “knitted knockers”, beaded types that work with bathing suits and the full silicone breasts. The first three are quite light and tend to ride up when exercising but the silicone ones are heavy and stay in place. Since I can’t run, I don’t know how they function for that, but otherwise I find them quite comfortable and natural-looking. They look and bounce like real breasts☺️

If you decide to go that route, I highly recommend having a professional fitting for prostheses and bras, especially the first time. There are many types of bras, including some very good sports bras, but they need to fit properly and work with the prostheses. Like regular bras, some will suit you better than others. Most places that sell mastectomy products will have a fitter. As @JustJan says you can choose what ever size you want. I stayed around a 38B but I might change that next time. In Ontario, part of the cost for the prostheses is covered by the provincial government every two years, under their Assisted Devices program, so you may have a similar program in your province.

Good luck with your decision.

Wisesage
24 Posts

@Lindsay2022

i am in a similar age bracket, will be 65 later this year, also TNBC, but had multiple lymph nodes involved, was never given a stage but guessing 3. I finished chemo last thanksgiving 🤸🏼‍♀️, had a double mastectomy in November wih concurrent expanders. Both decisions gave me many sleepless nights but I believe I wouldn’t change my mind now. I am small breasted, but like the small curve i still have, especially in a bathing suit. It was traumatic unwrapping after the surgery and i think it would have been awful, for me, to have seen nothing, and go totally flat witth all the other s**t you have been through . It was a longer healing for sure, lots of hiccups, especially on the lymph node side…other side a breeze. I had the aloderm as well, which seems to have helped my skin tremendously get through 25+ radiation treatments. Beautiful elastic skin that has no scarring or shrinking. i was unable to wear a bra during radiation, and continue without one now…very freeing! I will have surgery later this fall to swap out the expanders….but doing 6 more months of chemo right now. 😩 If they have to remove the implants for whatever reason, i am good with that. So a very personal choice for sure. Good luck with your treatments and surgery!

Hi @Littlebeth

Thanks so much for sharing your experience and information with me, and that can help me to make a final decision.

Best regards,

Lindsay

Hi @Wisesage

Thank you very much for sharing your experience with me. I think I will choose the right decision after hearing from people who had similar or different experiences. I hope everything is going well with me.

Lindsay

Whitelilies
2267 Posts

@Lindsay2022 Hello Lindsay….I re read your intro….and would like to introduce you to:

@JustJan Thank you; if you could share your experiences, here (Breast/TNBC/Mastectomy)…..to support our new member @Lindsay2022 ….I am hopeful to connect you both! Much appreciation.

Whitelilies

JustJan
1538 Posts

Thanks for the tag @Whitelilies. I have already responded.

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