Which would you choose?

MommyErin

So, I had my follow-up md Anderson appt with my onco and a surgery consult. They're going to treat me as stage IIIA and want to do mastectomy with ax dissection 3 weeks post chemo, followed by radiation. I'm BRCA1+ (gene mutation), so I'm opting for a double mastectomy, but I'm still deciding between options and would appreciate input. I'm 31 years old, so I do care about cosmetic result, but that's not my top priority.

Option #1: skin sparing mastectomy on cancer side only with TE, followed by reconstruction and prophylactic mastectomy on other breast 6 months after radiation completion (surgeries at MD Anderson). Pros: skin-sparing, excellent surgeons. Cons: traveling 4 hrs each way for each surgery.

Option #2: full bilateral mastectomy (or unilateral) done by local surgeon, followed by reconstruction 6 months to 1-year after radiation. Pro: can have this done by my surgeon in home town (she was trained at md Anderson, so also an excellent surgeon); have time to "shop around" for a great plastic surgeon to do reconstruction; could have hysterectomy done during initial surgery (which I need to do soon-ish because of gene mutation). Cons: no breasts (or only 1 breast) for 6 months to a year; cosmetic results might not be as good.

Thanks

ChiSandy

Being BRCA-1+, it seems wiser to go for the BMX. As to method of reconstruction, whatever is recommended by the RO & PS. As to timing, I'd lean toward option #1: for the prophy contralateral mx, waiting till 6 mos. post-rads probably would not pose a danger. If it were me, I'd want to work with a unified team of experts, even if it requires splitting it into two phases—the 4-hr. trips, were they for something that would affect both my appearance and longevity had I been as young as you, would be worth it. There are various organizations that can help pay for the transportation and provide lodging during recuperation. The hysterectomy (preceded by egg-banking?) could be done closer to home.

There is something to be said, however, for minimizing recovery time—what would be harder on you, several shorter recovery periods or one long one? Only you can know how much you can handle.

Molly50

I had UMX with TE placed initially. Had radiation and once healed made the decision (due to gene mutation) to have healthy breast removed. I had the second UMX done and waited 3 months for implants. That gave my radiated side over a year to heal. I am 7 weeks post exchange and doing really well. If you are going to throw a hysterectomy into the picture I would do that during your prophylactic surgery (if you separate them) so you can heal quickly and get to radiation. You should see a plastic surgeon right away and discuss with him/her. I would guess you want a TE put in during your mastectomy.

MommyErin

Thanks ladies! I'll be scheduling an appointment with plastics at MD Anderson for the next month or so (yay another 4 hour commute!). Getting both breasts removed is definitely going to happen. MD Anderson surgeon wants to do the prophylactic during the second surgery though so that I heal quickly from first surgery and can start rads right away. Hysterectomy can happen later, but is on the table if I go with option #2. I think the consult with plastic surgery will definitely help

Lisey

I'm piping in with another option... going flat and fabulous. I'm younger and rocking being flat. There a ton of reasons to consider no recon, ad a younger woman, I didn't even know that was an option for me. If you are curious join the Facebook closed group flat and fabulous and see thousands of us and how amazing being can be. I wish I had considered being flat before I put the damn TES in. I look skinnier, and the clothing options are incredible. Oh and no more surgery plus I could see any reoccurrence much quicker if it was on my chest. Just something to consider

MommyErin

Lisey- I appreciate the suggestion! I can totally see the benefits. The thought of parting with my breasts completely is so hard.

Lisey

Mommy, Keep in mind that unlike implants with normal breasts, after Mastectomies, these will be numb mounds on you and nothing at all like your real breasts. Mourn your real breasts, but don't think for a moment that diep or silicone/TEs will feel or be anything like the ones you will lose. I put TEs in expecting to have implants... but I didn't realize that they would be totally numb, with no nipples and frankly painful and potentially harmful (google ALCL cancer).. shredding my pec muscle in half like a sandwich for what purpose? So I'd have numb fake mounds in clothes? Little did I realize that clothes look even better on us flatties - no need for a bra or gaps in your buttons.

I'm just saying that the younger women look even better flat, come join our facebook before you decide and see for yourself.

MommyErin

Lisey, I'll definitely check out the FB group! I should consider all my options

NotVeryBrave

Just a thought - my PS said it's easier to do reconstruction if a TE or implant is in place before radiation. After radiation, the tissues are more difficult to work with.

Also - having both breasts done at the same time would save you from a separate surgery and perhaps make symmetry a bit easier.

MinusTwo

Agree w/not very brave. TE (s) should be in place before rads.

Also think that you should have BMX up front with TEs in both sides. I understand flat, but even at age 70 I wanted to be able to just pull on clothes that fit correctly and head out. Looks like you're HER2+, so will you do neo-adjuvant chemo? Seems like you could do that locally then to MDA for the surgery? Rads maybe also locally? I did chemo at Baylor, surgery at Methodist, rads at MDA.

Oh, I just saw that Stage IV. I expect that will make some difference in the recommendations. Please do let us know what you decide.

Lisey

Minus, I think it's a MYTH that clothes don't fit correctly on flat bodies. I find the exact opposite to be true. Clothing fits BETTER when you are flat. I can wear the flimsiest of tops with absolutely no issues. I wear tank tops, button ups, boho shirts, you name it... even evening gowns and I think the clothing looks really sharp. I had HUGE boobs on my frame (34DD) and honestly, flat is so much better. I feel 100% whole and so much better than when I had these alien plastic bodies in my muscles. If I really wanted to, I could wear knitted knockers.. the only difference is mine are removable while women with recon don't have that flexibilty (never worn them actually- but some women do when they want to.)

BulletproofLegs

hi, I had a bilateral mastectomy with reconstruction all at once (in March.) We did the lat flap reconstruction. Obviously, I have nothing to compare it to, but recovery was a bitch. Do you have a lot of support? The first week or two especially. I stayed with my stepmom thinking I'd be there a week, but it was more like 3.

That said, I'm glad everything was done at once (except for my nipples) and my new boobs are freaking fantastic!! I am either showing them off or insisting that friends give 'em a feel. And while you may have a bit more class about that, I recommend getting the very best surgeon you can find. 4 hours or not. Do the radiation locally. But I'm all about getting the best care possible.

I don't know if that helps in any way. But good luck

MommyErin

MinusTwo- I've finished #3 of 6 neo-adjuvant TCHP infusions. Surgery was up in the air because of liver spots showing up on my PET, but they couldn't find anything with MRI or CT to biopsy, so I'm being treated as stage 3 instead of 4 surgery wise. Planning to do rads locally, but leaning towards MDA for surgery.

NotVeryBrave- Yes, TE in place prior to rads. It sounds like it will be two procedures regardless (pre- and post-rads). I was surprised at the recommendation to wait to do the prophylactic mastectomy until the second procedure, but MDA surgeon was pretty firm about it (to minimize risk of complications).

Lisey- you do look fabulous!

Amapola36- Glad the TE isn't bothering you. I'll definitely add placement location to my list of questions for the plastic surgeon.

BulletproofLegs- So glad to hear you love your boobs! You sound like my mom's friend. She'll show anyone and everyone and has already called me to tell me I need to go to NOLA for 3D nipple tatoos. My husband will have a light schedule in August and I'm planning to have my parents come to help with the kiddos as well, so I do have a good support network. Do you think your recovery was so tough because you did it all in one or because of the flap? I'm hoping the two-step process will mean two shorter recoveries instead of one long one.

BulletproofLegs

From what I've heard, recovery from both mastectomy and reconstruction is harder. If you think about it, I had chest surgery and back surgery at the same time. Ouchies! I was also on a crapload of drugs, which helped. But I couldn't shower by myself even with a shower chair until the third week. Between that and not being able to shave my armpits the whole time, I was pretty ripe!

Definitely take advantage of your mom and your husband's ability to help! If you haven't done so already, I suggest you set up a site on Caring Bridge or something like it. Especially where you have kids. People want to help and you can set up a schedule with different ways to help. Which is a lot easier than asking people individually. At least to me it is.

I do think that it'd be a lot easier for your own independence if you had two surgeries. Because I couldn't do a damn thing for myself!

Your aunt sounds great! I was so glad I didn't have any of the cancer genes to pass on to my 5 nieces. Although thanks to me they've now got family history. I've gotta be different, right? However I told my brother's 3 that they were getting some stiff competition for best boobs at the lake this year