Nipple Sparing Mastectomy with immediate reconstruction
Comments
-
BRCA1, glad to know I'm not the only one who goes back and forth...one day I am sleeping great and the next I am WIDE awake...when I tell people and they feel bad, I explain that I am not up awake & depressed, (which I think that people are thinking) I just have so much in my head I can't get my mind to stop working over-time.
Kitchenwitch: I imagine that since your date is approaching your mind-shift changes from "planning" mode to all sorts of natural human-emotions, I hope that you can get rest and I will be thinking of you this week!
I'm going to check out the link for the drains, I went to the women's 'boutique' at the hospital and found the camisoles with the drains-holders. The saleswomen said after my surgery my Dr could write a prescription for them and then insurance will cover the cost, you might want to check this out with you Dr...any savings helps! As for the hair-washing it should be interesting. I have long, thick hair that my husband wouldn't know what to do with
...I will have to inquire about my salon for appts, I guess! I wasn't warned about the alcohol-thing, but it makes sense as I do remember it is a blood-thinner...ugh! I do enjoy my glass o' wine with dinner, I figured that as my date approaches I'll be cutting it out anyway, I'm really focusing on amping up my exercise & nutrition...I have a feeling that even after I won't have much of a taste for it...So much to think about & plan for...
PB22, interesting what you said about not focusing on the mastectomy, I sometimes wonder if I am not giving it as much attention as I should, although I feel like I eat, sleep and do everything around my breasts nowadays. I spend my time thinking positive thoughts about the outcome, but part of me worries that I am not worrying enough...geez, the mind is a crazy thing!
I appreciate being able to vent these things here, sorry if I'm all over the place, just a lot in my head, I think you guys understand the feeling!
0 -
Hi Ladies, catching up on your posts, what a brave group of women there are here! I know waiting for surgery is hard. I got to the point where I just wanted to get it done so it would be done and I could be on my way to getting better. I also tried to look at it in a very positive way considering I was getting reconstruction and feeling so grateful for that option. At this point 7 months post op I feel very much the same as PB22 described.
I never really thought of NSM the way some of you have put it, as being equal to a lumpectomy in terms of risk/margins. I was under the impression that recurrence in the nipple was rare and low.
Kate33- you always freak'n crack me up girl! I could just see you going on that show with a T-shirt with your saying on it talking about NSM. You'd be good at it too. I think it would be a worthy cause for sure.
0 -
sweetie- Just saw that Ellen had a different BC survivor's story featured each day during Oct. Dang! We missed our window! Hmmm, Oprah maybe?
CrunchyPoodleMama and Kitchenwitch- Just wanted to wish you both good luck on your surgeries this week. Just remember to start hydrating, hydrating and more hydrating now. (Seriously, like peeing every 1/2 hour hydrating!) Your body will thank you later. And stock up on your beverage of choice- Gatorade, Vitamin water, etc so you've got lots when you get home. If you haven't had your pre-op appointment yet ask your BS for your prescriptions ahead of time. The last thing you'll want to do is stop at the drug store on the way home. If you have a long drive home (mine was 2 hours!) make a nest in the backseat with pillows and blankets to cushion yourself and try to time your pain meds so they've kicked in by the time you leave. Everyone's here for you for all questions great and small and whatever support you need. (((hugs!!!!!!)))
0 -
I just got asked by an office that I occasionally freelance for if I can come in on Nov. 30 thru Dec. 3 -- yikes, this would be 12 days after my surgery. I am in excellent physical shape, walk a lot, walk up many flights of stairs (that's my "gym") and I've always bounced back really quickly from stuff. Even an abdom. surgery some years ago (myomectomy before my 1st child) kind of laid me up for just 2 weeks barely.
Any thoughts on whether this might be doable? I will call dr.'s office tomorrow and ask. This damn company always calls at the wrong time. They do not know about my surgery. Was thinking of just saying I am having a tummy tuck which is kind of true. I just wish i knew how Id be feeling.
It's 7 hrs a day, not a bad commute, sitting in front of computer. Then I'd come home, collapse and DH will take care of dinner and kids.
Any advice greatly appreciated!
0 -
Kate33, I like your advice on the hydration, I have been stocking up on vitamin h20 for home for after and bought packets of crystal light fitness powders for the hospital, (electrolight powder-drinks for on the go, just add water) in case I can/want/have something other than h20. I never even thought about prior to surgery hydration, thanks a bunch for that!
Kitchenwitch, I assume someone will come along that will help with your question, but, whatever you choose to do, I think my advice would be to listen to your body...good luck!
0 -
Kitchenwitch: The thing is, everyone heals at a different pace and deals with pain differently too. From memory you have DCIS, so no nodes will probably be taken, but you will have TE's and drains to deal with. I don't know how quickly you'll bounce back, but I can tell you how well I did. I'm 43 and had my 2nd c-section at 40, bounced back amazingly quick from that, and I was fairly active before dx (walking and such with high metabolism). I'm about 5'3", 100 lbs or so, size 0, was small 34A prior to bmx. I had surgery on a Thursday and the following Monday I had follow up with PS. I never drained much at all... like 10 ml on day 2 and 8 ml on day 3 (per side). My drains were taken out that Monday, 4 days out. I began stretching that same day, and I had stopped pain meds except for night, which I only took 1/2 Percocet. After my drains came out, I went home that same day, took a shower, and put on a T shirt (no more button ups). It was time consuming, but I managed fine and felt better. By day 12, yes I would have been up to doing the work you're talking about, but I would have been very tired. However, I would err on the side of caution and advise you to try to postpone the work by maybe a week because we don't know how well you'll feel. The company doesn't need to know "why", but if it will help then I'd make something up like having the tummy tuck and not sure how you'll feel, or saying tentatively you would like to accept, but you have a personal urgent matter that may delay your services and you'll keep them apprised of the situation if it seems like it may interfere.0
-
There is a new type of reconstruction surgery that uses cell that regrow? Has anyone heard of this? I had recon on my right side. It was a latissimus dorsis---skin taken from back and brought forward. It worked fine for years until I had cancer on the left side. So now I am out of balance. Now I have a flat chest on the left and an awful breast mound on the right. Nothing matches and I just feel very sel conscious about the imbalance.
0 -
niteowl: Heard someone else mention the cell growth thing, but I think there is a catch on its use. I googled it a moment ago and it was talking about using it if the cancer was "dormant"? As for the imbalance, I've read many posts from the picture forum where this has happened and the person has gone to have updated reconstruction which has left an excellent result. You might want to check out the picture forum. Many have gone to NOLA. So sorry you had a recurrence!!0
-
CC4NPG: thank you! The work can't be delayed, unfortunately., bc I'm filling in for someone with vacation plans. I have a pretty good sense based on your description that I have a very good chance of being able to work. Yes, I'll be tired, but we really need the money. I won't have TEs, bc I am having a DIEP. The drains should all be out. I will make SURE they are out! I am 5-1 and a bit stockier than you and my breasts are bigger, but a couple of doctors have said that in terms of recovery there is no difference for a small breast versus a large. Weird. I imagined I'd have a harder time bc I am very curvy!
0 -
Kitchenwitch, If you are having DIEP I would think it may take a little more time then us with just mx and TEs. Hopefully someone who had DIEP will comment.
0 -
I had unilateral diep a year ago, 3 drains. Two drains were pulled on day 7, last drain pulled on day 9. But I have read where other people have had them for weeks (5-6 wks). I don't think there is anyway to predict how much drainage you will have. Once all the drains were out though, I felt wonderful! I could have gone back to work at 2 weeks, but took 4 weeks off. I had no complications and again feft really good.
0 -
I have a question about NSM. I had my done by a general surgeon, not a breast surgeon...big mistake! I had alot of blistering, which caused scaring and my nipple eventually fell off
. I am so mad at myself, because I fought so hard with my insurance co to get them to pay for the diep & he screws up the NSM. I should have asked him how many he has done successfully. Now I am working with my ins co again hoping they will pay to correct. I remembered I started this with I had a question and forgot what my question was....How common is it with NSM to loose the nipple?
0 -
nmi, I am sorry to hear you have had issues with your surgery...I am not sure I will have the answer you are looking for, but I spoke w/my BS about this and in the 5 plus yrs she has preformed the surgery she lost 2. I recall her saying something about how it can depend on if the skin has had rads or not. I believe I read it would also have to do with how well the circulation is after, in regards to breast size, the further the blood has to travel to the nipple, the more chance of an issue with poor circulation/necrosis
I hope everything goes well re: ins company
hopefully someone will come along and clarify if I am not correct, but in my reading, the above is more or less what I recall. I'd be interested to know more too! Hope this helps!
0 -
nmi, I'm so sorry about your nipple not surviving... as fire-dancer said, even an excellent breast specialist can't guarantee the nipple will survive... it depends on factors like the ones she listed.
Girls, my surgery has been rescheduled... it will probably be mid-December now... ugh. Wanted to get it over with, but now I have a few more weeks to continue getting in shape before the surgery and also my plastic surgeon will have done Brava/fat graft training by then. And, thankfully, my parents have enough flexibility with their careers that it wasn't a problem for them to switch the dates so they can still travel to be with me the week of surgery.
0 -
Unfortunately, I agree... no one can really guarantee if our nipple will survive. I've heard it said that smaller breasted people do better, and I've heard people say to make sure you have a dr who has done the procedure before. But in the grand sceme of things, sometimes it just happens that it doesn't make it. I'm so sorry yours didn't work out!
0 -
niteowl- I haven't heard of doing recon regrowing cells but I have heard of a Dr. Khouri (miamibreastcenter.com) who can completely create a new breast using strictly fat transfers- no implants or DIEP. He also trains other surgeons in the procedure so they may be able to refer you to someone in your area.
nmi- So sorry that your NSM wasn't successful. There are a lot of factors but the biggest two are the size of your breasts because the longer the distance the blood supply has to travel to the nipple the harder it is to maintain that blood supply. According to research, though, the number one factor in the rate of success is the surgeon's own level of experience. But a good plastic surgeon can do amazing things these days to create a new nipple that looks very natural.
CrunchyPoodleMama- I know it's hard to have your MX postponed but it sounds like you've got a great attitude about it. I'm glad your parents will still be able to be there for you and give you that support.
0 -
Interesting comment about the smaller breasts having a better chance as the blood supply doesn't have to travel as far. I didn't know exactly WHY it was better to have small breasts for the NSM..... no wonder the PS said I was a perfect candidate the second I disrobed!
Finally, an advantage to having small boobs!
0 -
Re: small ones./big ones... I was under the impression that nipple-sparing couldn't be done on large breasts. Mine are 34DDD. I have an excellent BS and an excellent PS; both said without hesitation that they could do NSM on me. Actually my PS stopped and did a lot of measuring -- I happen to be rather a short person -- so I think it had something to do with the distance from something in my collarbone area to the nipple.
The BS told me he's lost a few, but he didn't say it was because of the size of the breast. I'm sure this is an easier procedure on a smaller breast, but I just want some of the more generously sized gals out there not to think they are not candidates for this, if the doctor seems willing.
I understand there's a chance I'll lose it anyway, or maybe the path report says I won't be able to keep it but at least two drs say they'll try.
Susansgarden, I think there are lots of advantages to having smaller breasts. I always wanted smaller ones, until I found myself in danger of losing one. Now i wish i could just keep them exactly as they are! This last year has taught me to love what I have. I hope to end up a size D on the recon side and then have the other made to match.
0 -
Hey everybody - I finally got my pictures posted on the other forum. It has been 6 weeks after exchange - glad to be done - let me know what you think. Hugs, Valerie
0 -
Kitchenwitch- Definitely didn't mean to imply that larger breasted women couldn't have NSM, although some BS's (like mine) won't even attempt them unless you're C cup or smaller. (Which makes no sense- wouldn't you at least try?) But the rate of success is higher in smaller women. But, again, the bigger factor is the surgeon's experience more than any other thing.
So for anyone reading this thread considering NSM do your research. It's worth driving farther if you have to for a surgeon with more experience. After all, this is something you're going to live with for the rest of your life. Hopefully, some day ALL BS's will be trained in this procedure and ALL women will be considered good candidates as they perfect it.
0 -
Valerie- I posted on the picture forum but just wanted to say I think you look great. And you'll continue to see more changes for the next several months. I think the size you went with is perfect for you- looks very natural! I think it makes a huge difference when they can save the nipples and put the incision beneath the fold of the breast.
For those who have their NSM's coming up- one thing I would be sure to ask is whether or not your BS is going to put your incisions under the fold of the breast like they did for vmudrow. Not every one does for some reason. Some take the incision right through the center of the breast. I know this is sometimes necessary on larger breasted women to ensure they get all the breast tissue but I've also seen it on smaller women. So I would definitely ask about that and not just assume if your BS hasn't gone over that already.
0 -
Thanks, for bringing that up, Kate. It was the biggest question I had when it came to the actual surgery. I understand that sometimes different incsions are made, but it's definitley good to go in knowing (more than likely) what you will get.
Valerie, I'll let you know when I get over to the picture forum, thanks for posting your pics!
0 -
Interesting note about the incision. My PS does from the armpit to the nipple? I remember them telling me why at the appt...but now I can't remember. Maybe it's because if the nipple can't be "saved" (because of cancer too close) they would just go straight across like a regular mastectomy?? But I thought he had a different reason too... something about the size of my breasts? Hmmm.... another question to ask at the pre-op next week!
0 -
Kate33, Was just mentioning things I'd heard "out there" ... in fact, my first BS does not do NSM at all. Interestingly, she is just starting a new job as BS at the hospital my second BS is at... I'll bet any amount of money that within a year or so she will be telling women that yes, she DOES do NSM, since that's what her new institution does. And some surgeons are very leery of large breasts. So... i think it is an evolving procedure. Will be interesting to see how it goes over the next decade.
God, I'm tense (Thursday THursday Thursday Thursday)...
0 -
My incision for three lumpectomies is underneath the breast. My BS said he would use that for the mastectomy and not create a new incision. I told him I really appreciated that. He also said it would be a lot of work for him. It's not really under the fold - it's more on the underside of the breast, about an inch or so from the fold? It is not very visible even when I'm naked, so i've been relatively OK about that.
My biggest fear is that they would do what I call the "hamburger bun" incision -- straight across the breast, really visible. I just find that a very frightening look. I think I'll be avoiding that, but who knows. I am going to get marked up tomorrow by the PS but I think a lot of that is the DIEP procedure.
0 -
Thanks everyone for the replies on reasons for failure of NSM. (I was a 34B before bc, so I don't think size was the issue)Truly believe mine was the skill level of surgeon. Do have a great plastic surgeon and hope insurance approves revisions! When you are dx, you are thrown into a world you knew nothing about and have to make so many decisions and learn so much so quickly...now that I have been through it, part of me wants to redo it because I now know what I am doing!!
**Ask your surgeon how many procedures he/she has done and done successfully. Maybe mine would have fail anyway, but I never asked him that question. And he was a general surgeon, not a breast surgeon.
0 -
May I post here? I'm tentatively scheduled for NS PBM at the end of January and have so appreciated reading this thread. I just had something to add about the place of incision. I have a large biopsy scar on the underside of one breast and the PS said he could not use that same incision because it may compromise bloodflow to the nipple. So I'll have one straight across "hamburger bun style" and one under the fold. I have saggy B/Cs so he'll have to take some skin too. Anyway, hoping I can come here for support and maybe some much needed levity!
Kelly
0 -
Kelly - welcome - everyone here is so helpful. So you are having prophylactic masectomies. I did the same in May of this year. I'm hoping scars fade over time and won't even be noticeable.
hugs, Valerie
0 -
Ladies-re:incision. I think the incision may have something to with your DX. I had a DX of IDC so since there was cancer on one side already he said he would do it from armpit to nipple. This way if he had to remove the nipple he wouldn't be making another incision. It looks like most of you women who had DCIS or LCIS were able to have the incision under the fold. I notice Susansgarden's Dr is doing it the way my Dr did it and she has a DX of IDC so maybe that is reasoning behind where they place the incision..
0 -
Yes... now that I think about it .. I bet you are right, Sweetie! ... because the saving of the nipple is not completely a "sure thing" with invasive...it would be better for them to just go ahead and continue the incision instead of having to make a whole new one if the nipple could not be saved.
0
