Nipple Sparing Mastectomy with immediate reconstruction
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Fair enough, since I'm only 2 weeks post op from my second mastectomy (nipple sparing), I was just curious to see what "normal" is supposed to look like.
I plan to keep posting, this is a great site to connect with others.
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You guys have been so helpful! Thank you Kate, Tina, Valerie, Lilah and MBJ for helping me get some answers. My head has been in a cloud this week with decisions. I did not know that the fat-grafting could be done later so that eases my mind to know that I can add this on if needed. My BS says he's done a number of prophylactic NS MX and about 10-15% will lose nipple so I don't know if that's good or bad. I was relieved to hear from you Kate, that it doesn't seem all that high from the posts you've read. Thank you also for telling me about Cameron and her PASH experience....I've written her as well. On my way to getting informed and feeling much better already. Thank you for the peace of mind!!
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kim2005- I forgot to add that the larger breasted you are the harder it is to maintain blood supply to the nipple. Some BS's won't even try NSM on larger breasted women and some will. For those that do I'm sure their success rate would be lower because they're willing to try this so that could be a factor, too. It's great you're educating yourself on all your options. Good luck with your decision. Keep us posted on your progress!
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Let's all remember Betty Ford and her advocacy for BC awareness and early screening - she had her surgery in '74 when it was called 'the female cancer' - what a difference her openness made - holy cow.
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Kate, wow!! I just got added to the picture forum and I am SO impressed with your breasts! This gives me great hope that NS can work....I am still scared of possible necrosis (although PS reports only 10-15% will lose) and not sure at all about the use of Alloderm...I have no idea whether it's necessary in the beginning or simple do the NXM THEN check into fat grafting (possibly with Dr. Khouri?) later....hmmm?? Decisions, decisions!
Right now my size is a 34C......L side is Lat.. Muscle with implant; R side implant to match size of L
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kim2005: I did lose part of one nipple and some adjacent tissue to necrosis. However, it was sort of a freak thing as the necrosis was all in the area of the methylene blue dye injection. Not an allergic reaction, but the stress on the tissue from both the dye and the nipple sparing procedure apparently caused the necrosis. However, I think it's going to end up looking OK. I'm on the picture forum as well. My non-cancer side came through like a champ!0
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I am so impressed with your pictures Tina! As scary as it may have been in the beginning you sure look fabulous now! I had a horrible reaction to the blue dye during my surgery 5 years ago too....my blood pressure dropped rapidly as an allergic reaction to it. So very happy for you that the issue was temporary and you healed so well!
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kim2005- Aw, thanks, you're so sweet! First time a girl has said she's impressed with my breasts. LOL! I appreciate it, though. I do consider myself so lucky to have been able to have NS and FG with Dr. K. I think I'd be in a totally different place physically and emotionally right now without it. You said you're a 34C right now and that's what I am too. My original implants were 375's but now I have 225's with fat grafting over the top. Just to let you know it's not just the size of the implants that determines your bra size afterwards. It has to do with your dimensions as well. There's a member on here named "whippetmom" who has helped hundreds of women figure out what size TE's they should have, how much to fill them with and what size and type of implants to go with to get your desired result. She posts on a thread called "BREAST IMPLANT SIZING 101".
I wanted to let you know a few things about the fat grafting with Dr. Khouri (who was my PS for my revision). He absolutely hates Alloderm. He says it's too expensive, there's a higher risk of infection, it's donor tissue and he said you can get the same results using the patient's own fat. When he did my revision he didn't even want to use my original incision sites because there was so much Alloderm there. That being said, my original PS used it when she placed my TE's to create a sling for the TE/implants. Then she used more during exchange to cover the implant since my skin is so thin. I never had any problems with infection, though. The other thing is most PS's who do fat grafting will just inject the fat directly over the implant. With Dr. Khouri's method he first creates space for the fat to go. He does this by either having you wear the BRAVA system (which is not covered by insurance) or, in my case, he swapped out my implants for smaller ones but then you end up with a re excision or a new excision. He says by creating that space, or scaffolding as he calls it, more of the fat is retained afterwards (about 90% vs. about 50% with traditional FG) and there is less chance of the fat calcifying afterwards. Just some "food for thought" if you're considering FG with Dr. K. There's more information on his website, miamibreastcenter.com, and there's a forum for FG on fatgraftpatients.com. I do know a member on here is flying to Miami to have her NSM done by a BS that Dr. K works with and then he is going to do immediate FG on her. She won't have any TE's or implants but it will probably take about 3 procedures for him to create the size she wants to be. PM me if you want any more info!
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kim2005: You might have had Isosulfan blue dye, which is what they used to use more frequently and which had more risk for systemic anaphylactic reactions (which sounds like yours was) and cause for sometimes having to stop the surgery. More surgeons have switched over to Methylene blue dye, which is considered "safer", but apparently more risk for skin irritation and tissue necrosis. For traditional mastectomies the area of injection is typically ultimately removed during the surgery so is not an issue. For nipple sparing patients that area is left intact and there is the added trauma of removal of blood supply to the skin, etc. My BS (who has done many NS surgeries) had never had a patient experience tissue loss with the dye - unfortunately, I was her first
.All in all, if given the choice today of having the methylene blue dye to remove fewer lymph nodes I would still opt to go for it. Because the methylene blue and the nuclear tracer both led to one sentinel node that is the only one I had removed (negative!). My dye reaction isn't unheard of, but it is very uncommon.
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Hey everybody! Good news and bad.
Good News - at my PS appt today, I saw my nipple for the first time, completely free of scabbing, and completely intact! Yea!!!!!! TinaT/Kate - you were sooo right about it coming along!
Bad News - Yesterday afternoon I had my TE removed due to infection (extreme infection I learned today in my post-op appt). I cannot have the new TE inserted for three months to allow for complete healing and confirmation of no remaining infection. PS said with NSS infection can set in because the blood flow to the flap under the breast is comprimized to a degree (routing the blood to the nipple and the shear distance to then get to the edge of the incision below the breast).
Now I have a completely flat chest on one side, and cannot wear a bra for two weeks to enable the incision to completely heal. And so, next week, when I go work, I will need to be rocking the 'Then Came Maude' look to hide my lopsidedness - but being only 5 foot tall (if I inhale), I am not sure it works quite as well... but hell. I am alive.
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Thank you Kate and Tina for the information o the FG and the blue dye. SO much has changed in the five years since my L mastectomy. How lucky are we to have such a forum to learn from each other? To reiterate the reason I'm looking at R mastectomy is due to a rare benign tumor called PASH...thx for the lead to Cameron as she has helped too.
With my L breast there wasn't a choice to remove it. With this R one I'm really struggling with choosing to remove it. I'm going to go have another US to see if the tumor has grown in the past few months and talk to my BS and PS again. You've really helped me with learning what to ask. I'll call Dr Kouri too and see what I can learn about insurance.0 -
vhshea: I'm so sorry to hear that you developed an infection and had to have the expander removed
. Don't know what else to say, very sad indeed. I'm glad the nipple survived, however! You and Renn are now officially sisters in healing!kim2005: It is tough to decide between uni and bilateral MX. I chose BMX because of the ILC and because I preferred a "matched set" of reconstructed breasts to a reconstructed breast and a natural breast that I would be worried about forever. Everyone's comfort level is different. I kept mulling over the positives and negatives of each and my answer just became obvious to me.
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I'm going to be away from the computer for most of the next week or so. Happy healing and decision-making to all!!!
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Kim - another thing to consider that I wish I had known when I had my UMX is that if I had had a BMX, I would not be looking at taking Tamoxifen - (and possibly other chemo depending upon my test results).... And they did find calcifications in my 'good' boob that mimiced the cancer calcifications in my 'bad' boob, so I really wish I had done the BMX... but the healing for a BMX is harder...
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vhshea - Your MO actually told you that you would avoid Tamoxifen if you had a BMX? If so, it directly contradicts my wife's MO.
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vshea, I will be having a BMX and will still be taking tamoxifen
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kim2005- You may want to PM the member who is having her NSM in Miami with a BS there and then immediate fat grafting with Dr. K during the same surgery. (No TE's, no implants!) She may be able to give you some info regarding insurance as well. I'll PM you her name.
vshea- (5 ft tall if I inhale- LMAO!) So sorry to hear about your set back. That sucks! This fun little "journey" as they like to call it just got a little longer for you but hopefully they can get this straightened out and get you "back on the road". (((hugs)))
As far as the Tamoxifen issue I think there are a lot of factors doctors take into consideration when prescribing it. It's not just a matter of BMX or not. It blocks the receptors for estrogen so if your tumor was hormone receptor-positive (tumors whose growth depends on estrogen) you would have a benefit. I believe there's no benefit if you're tumor was hormone receptor negative. Other factors are size of tumor, invasive or not, if you're pre-menopausal or not and, hate to say it, but your doctor's own preference. Some believe if your risk of recurrence is already low by having a BMX (1-2%) and Tamoxifen reduces risk by possibly 50% then you could only be decreasing your risk by 1/2%. Weigh that with the possible side effects of Tamoxifen such as increased risk of endometrial cancer, stroke, etc, not to mention quality of life issues some women have on it, and some doctors don't feel it is worth it. Not to say if you really really wanted to take it your doctor would refuse. My BS told me with DCIS, and BMX, she didn't feel it was warranted. But if it would make me feel better by taking it she would certainly prescribe it. (I elected not to take it.) Here's some info by the National Cancer Institute-
http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
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The decision of taking the drugs seems to come down to playing the odds on recurrence.. but I will certainly be taking the Tamoxifen - btw.. my OC did not tell me that I would not need to take it... I surmised that, perhaps incorrectly, based upon my current crash course in BC. Guess I would have lost some points on that test question for incomplete answer!
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No problem vhshea. One of the first questions I asked my wife's MO was whether a BMX would allow her to sidestep Tamoxifen. The answer was no because of the risk of recurrence in the small amount of remaining breast tissue, but also because the Tamoxifen would help prevent metastasis.
Kate33: Yes as far as I understand, no need for Tamoxifen (or chemo) with DCIS. However, different story once the DCIS has gone to IDC. You are probably broadly right about the level of risk reduction for a patient who has BMX, but metastatic disease would be a disastrous outcome if someone elected not to take Tamoxifen.
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Hey all - wanted to check in. I lost my TE due to infection BUT the nipple is beautiful and the skin under the breast looks like it will make it.. My PS said that he thinks we will save all the skin and nipple.... Now the un-TE'd breast does look a bit like a pug dog face, but the skin is now normal colored and the nipple is perky! Yea! Tina was right - it just takes time!
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Hi all, looks like I'm finally officially moving on with reconstruction! Got a date for exchange surgery (Aug. 24) while I was on vacation and found all the paperwork in my mailbox yesterday when I returned. I was on hold for so many months that it almost feels like it's moving too fast now - but here I go...gulp!
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Good for you, Tina! Will you continue to post here or do we need to follow the exchange thread to see how you are doing?
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me too!!!! but watch out... soon i will be!
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Tina- It's always exciting to get an actual date for exchange- something to circle on the calendar. A lot of us end up feeling kind of anxious about it, too, so if you feel that it's all normal! There's so much riding on this surgery and it can be kind of stressful. But exchange is so much easier than the MX and you'll feel so much better afterwards as the girls on EC will all tell you. I'm really happy for your "light at the end of the tunnel"!
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hi all:
back to report on latest developments:
YES IT CAN BE DONE!!!!!!!!!!!!!!!!! My "whiz doctor", Dr. David Passaretti, Darien, CT does it.
he does a two step. Life/reduce, and reposition the nipple. 3 months healing time to allow good blood supply. Then the mtxmy. I do not know if this is doable in the case of a cancer, due to any time constraints, but I think it might be. I know I was given 3 months to begin chemo from surgery date but this may be due to node negative status.
Yahooooo
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I had my pre-exchange and TE overfill visit yesterday. PS and PA are pleased with how things are progressing and the exchange is scheduled for August 24. I just posted some pix on the picture forum...
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anniealso- The lengths your surgeon went to in order to preserve the nipple shows that someone gets it! I applaud him to that and for you for going through those extra steps. I really do think that NS goes such a long way towards the healing process. I feel by having it that I was ahead by leaps and bounds in accepting this new version of myself. I think I would be in a much different (and darker) place without it. I just wish all women could have this option. If we had an award for "Surgeon of the Month" yours would get it!!!
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Tina T, I've spent this evening reading all your posts. I seem to be in a similar situation as yours. I had my NSM with immediate reconstruction (implants) on June 28. I have a rather large area of necrosis on my right breast (not the cancer one...) and the nipple seems to be affected too. I go back to my PS tomorrow and will hopefully find out where I go from here. We've been waiting for everything around the black areas to heal. I want to thank you, it helps to see that someone else has gone through this. I don't think my BS has seen anybody like me before...but my PS is very encouraging. I wanted to ask you: have you been able to work with all these problems with healing? I work as a waitress and has now been out for 5 weeks, but will see if PS will let me go back for a while before I have to have more surgery So glad I found this forum!
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