questions for everyone who has done reconstruction

So my story is that I was diagnosed one year ago with breast cancer in my right breast. My mom had breast cancer 9 years ago and chose to go flat, I figured that should be good enough for me and never bothered looking at any other options, from diagnosis to surgery it was less than 10 days. My surgeon performed a skin sparing double mastectomy. He said if I wasn’t happy with that we could always go back and do revision. I’m so glad he did this, little did I know that I would feel different over time about not doing reconstruction.

I’ve talked with my oncologist and he has totally encouraged me to get reconstruction or at least find out my options. I have an appointment in a week with my surgeons partner who is a surgeon as well as specializes in reconstruction. I want to find out what my options are and which route he recommends moving forward.

For all of you who have chosen reconstruction, do you regret it? Are you glad you chose to reconstruct?

If you chose implants did you go with under or over the muscle? What type of implant? ( I know there has been a recall) did you go close to your original size or smaller or even bigger?

Thank you in advance for all replies:)

Hello,

I had a prophylactic double mastectomy with immediate placement of under pec tissue expander at the time of mastectomy. My implants are the anatomical shape, textured type currently on recall. I had nipple sparing with some removal of skin since I had large, pendulous breasts. I went smaller, from 36/38 DD to 36/38 B/C.

Do I regret it? Only that sensation was lost during surgery. Am I glad I chose to reconstruct? Yes. I feel like me.

I had a revision on the left due to capsular contraction/scar tissue. Currently, my right feels like it has moved a little towards the armpit. It just feels weird, it doesn't hurt like the capsular contraction/scar tissue. If either side develops capsular contraction/scar tissue again, or if there are any other issues painful enough to warrant surgery, I may choose another revision of both sides, and explant and replace the recalled implants. However, the risk of BIA-ALCL Implant related lymphoma is actually lower than the risks of additional surgery. So, no revision for me in the immediate future.

Best wishes on your decision.

thank you so much for the replies ladies!! Have any of you had the phantom itch that some have discussed? I read another thread and that did start to freak me out, it sounds terrible to be literally clawing at your skin with no relief and kept awake at night with it. I already am dealing with so many sleep issues since having my ovaries removed and being on hormone blockers, I don’t want the little bit of sleep I’m getting to also be disturbed with crazy itching

I don’t have the phantom itch.

I have subpectoral implants. To be honest, it took me years to fully adjust - my main issue was a feeling of pressure or soreness around my reconstructed breast whenever I would do some that would strain or stress my pec muscle, but over time that settled in and was no longer an issue. I'm also one of the ones who's had a bad case of phantom itching, but it comes and goes - it's not a constant. Early on, yes, it would drive me nuts, but it would be one night and then nothing for weeks and eventually, for months. I'm 14 years out now, and only very rarely get any itching and it's not severe and not for long.

Would I have passed on the reconstruction because of these issues and did I ever think that I made a mistake having reconstruction? No. Not for a second. I'm not defined by my breasts - they were always very small anyway and I was never a 'show the cleavage' person (and I didn't have any cleavage anyway) - but for me reconstruction provides a sense of normality when I dress in the morning and when I see myself in the mirror. Same clothes, same bras as always. I didn't get nipple construction and I have a scar across the middle of the breast mound, but in the mirror or when I shower I see (especially without my glasses) and feel the same basic shape that was there before and it seems normal.

Everyone is different, but for me, I think seeing a flat chest in the mirror every day would have been very difficult, would have made me more resentful of the diagnosis, and would have made it much more difficult to move on from the diagnosis.

oh thank you so much for the replies ladies! You have all given me so much hope. when I chose not to reconstruct I never intended to not use a Prosthesis, I like how my clothes fit with breasts. I was never a cleavage gal, that's not at all important to me, but having my body look balanced is. I have been fitted with the prosthetics, they look great in my clothes but they get very hot and sweaty and I work in a daycare part time, when I lift kids the dumb things have shifted all over lol.

Beesie, you have described my feelings well, when I'm in the shower or in front of the mirror, it's really a blow over and over, a constant reminder of what has been taken from me. Maybe if I was 15 lbs lighter I could rock the flat look, as it is, I look like Winnie the Pooh when I don't wear my prosthetics, flat chest and belly sticking out like I'm 6 months pregnant.

Another question I had for all of you: how do you/your doctor monitor for recurrence? Does it make it more difficult with the implants? Can it hide behind the implant? I’m guessing no mammogram?

Thanks again everyone:)

OnTarget, that’s one of the most frustrating things for me, the belly. I know some very thin women who chose to go flat and honestly? They rock it! But I am 5’9 and big boned and I know I can’t get that much weight off. I’m already working out daily and eating a low carb diet, I’m just happy when I can maintain and not gain

exbrnxgrl, thank you so much for sharing your experience. I think it would be so nice to be able to go direct to implant, obviously not something I can do having waited a year. I had never heard that was even a possibility

I was 50 at diagnosis. I knew I wanted implant reconstruction because it's a shorter recovery than flaps from what I was told. No way could I go flat looking at the scars. My bs and ps did bmx from under the breasts so I don't see scars. Did an awesome job. I did it for me. I think I would have done it up to 75 depending on my health and all. It took 2 sxs after the placement of the tissue expanders to get it pretty perfect. The first was exchanging to permanent implants then a year later, getting it more symmetrical. Mine are under the muscle. That's the best way. I love that I got the smaller size as mine were too big and I can go bra less and no one knows.

Mine are textured silicone implants and are the recalled ones. 1 in 3000 or 5000 chance of leukemia. Ps didn't advise switching them out. Instead of seeing me once a year for life it's twice.

So yes, the recovery of 3 total breast to perm implants was worth it to me. I love my ps. You need to make sure he she listens to you and cares. If not, find another one. Bedside manner is just as important.

I was offered. They look real if done right but I declined. I'm used to no nipples. Knowing I have no breasts, tatooing nipples would make it weird to me.

Pardon my ignorance summerangel, but if you got fake nipples, why would you need 3D nipple tattoos also? I am exploring options as I haven't had surgery yet.

Thank you.

I did 3D tattoos from Vinnie Myer seven years ago. They still look amazing. That was the best part about this whole deal.

I had breast reconstruction at the end of August of this year and BMX in June. I have silicone implants. They're over the chest muscle, not under. The physical therapist I went to for 5 weeks is a breast cancer survivor and her implants were under the chest muscle. She said that if she had to do it all over again, she would go with over the chest muscles, not under, because when doing the TE fills, it was really painful and uncomfortable.

I'm very satisfied with the results. I'm not getting nipple reconstructive surgery. Mostly because I'm not interested in yet more surgeries...and because the reconstructive surgeon told me that there's no guarantee that you'd end up with much in the way of nipple sensation anyway. Honestly, I'm so thrilled that I don't have cancer that I don't care right now that I have no nipples whatsoever. I don't care about the big long scars across each reconstructed breast. At some time down the road, I'll get 3D nipple tattoos (they just look 3D, they're not actually 3 dimensional...they don't stick up out of your skin or anything). Reconstructive surgeon recommended to wait a few months before doing the nipple tattoos so my implants have time to settle in.

I ended up with reconstructed breasts that are slightly larger than my original breasts were. I'm happy with that because I was always on the small size. The reconstructive surgeon explained that breast reconstruction is an entirely different thing than breast augmentation...it's more complicated than a regular augmentation.

My recovery from the reconstructive surgery was a lot easier than recovering from the BMX. From the reconstructive surgery, I took 2 wk off of work but started to feel better at about the 1 week mark. don't be tempted to dive in at that 1 week mark to your normal activities. I did and I over did it a couple of times, so I had to learn the hard way. :-)

You're asking all the stuff that I was asking when I was trying to make a decision. That's good! You want to make an informed choice and weigh the pros and cons of all of your options. Best wishes to you!

Hi, I currently have expanders which have been filled 3 times with 50 or 60 CCs. And I can't tell how many more times will be enough.
I've read that people get filled way more than I have so far.
The expanders are bulky, so I look like I'm almost big enough. The PS is not who does the weekly expansion, so my questions about size are not answered.
Could one more time be enough? 200 or 250 CCs? I think I will ask to se the PS after the next fill, and make the appt. for the swap. Thanks for any suggestions. The implants will be saline, pre pectoral

I chose right side mastectomy. Refused to consider bilateral, because lefty had served my babies so well. My first mammo next week, slightly nervous. Went for under the skin reconstruction, because it is more natural. They couldn't save the nipple. I wouldn't want to be half-flat because of all the fuss with prostheses. Fully flat didn't even cross my mind, because my belly was already bigger than my boobs. I wasn't given a choice on a lift for lefty, but I am pleased, and that was a simple procedure. I have new bras, and cleavage for the first time in my life. With a bra on, I am not aware of the lack of sensation in the skin; deep sensation in the pectoral is still there. Without a bra, I see a difference between lefty and "righty", but the bra evens it out. Will be getting nipple tat in early December, may ask for a bit of tat on lefty, as the areola is not quite circular. Odd at the age of 69 to be fussy, but insurance pays.