Nipple Sparing Mastectomy with immediate reconstruction
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Dear NotAfraid:
I have good news for you. YES, there is NSM with immediate DIEP. I'm in Phoenix and am going to Mayo. Mayo has the breast surgeon and a different surgeon for the DIEP process. I had DCIS that was .4cm from the surface of the nipple itself. I had no hope for keeping the nipples. I had my appt today with my BS and he informed me that he's confident that I can keep my nipples!!! My BMX with NSM and immediate DIEP will take about 8 hours on the table. I'm 54, a tad overweight & a non-smoker. They folks at Mayo won't do this on smokers because of how smoking changes the outcomes.
I wasn't sure Mayo & my insurance would be happy with each other, so my contingent plan was NOLA. But as it worked out, I don't have to travel out of town.
I wasn't a candidate for implants because of my size, so DIEP it will be.
There is a ton of resources on this board for finding a DIEP surgeon. DIEP is very specialized, so look for a PS that's done alot of these.
Good luck.
bonny
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Congatulations, HurleyG!!!!!!!! What fantastic news! Enjoy every second of it!!!
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Thanks everyone! I am still very early but I can only hope everything will be okay. What is so crazy is that I found out the same week that a year ago, found out I had bc. Ironic....
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hurleygirly - GREAT NEWS!!! SO HAPPY FOR YOU - you will have the cutest baby!! Congratulations!! hugs, Valerie
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hurleygirly: Congrats! Such an exciting, happy time! I agree, your baby will be adorable! We needed this news!0
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such exciting news! congratulations!!!
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Hurleygirly--what a fantastic new chapter! The sign of all good things for you in 2011...
Ilene
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Aw thanks guys! I have a feeling this year will be much better than the last. Good riddance! I will keep everyone posted for sure.
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Hurleygirly-so good to hear from,was wondering where you went! Figured life was going well for you and you were busy and it is! So happy to hear the wonderful news and I wish you and your hubby all the best. It's so wonderful to think that after all you have been through there is a wonderful blessing on the other side of things. Your going to be an awesome mom and I'm sure that baby is going to be one adorable kid.
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Hurleygirley
That is such good news for the new year! God bless all of you!
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Hurleygirly, Congratulations! I'm so happy for you guys! Best wishes and keep us posted!
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Hi everyone. Hurrah for baby news! That's really wonderful.
Had my bilateral skin/nip sparing mastectomy with TEs last Wedesday, Jan. 26th. Surgery went well. Both PS and BS say odds are good that the skin and nipples will survive. Both say the breasts look great.....really?....very frankensteinish to me, but I'll take their word for it. Lots of bruising and swelling. I've had lots of breast size fluctuations over the past seven or eight years, with pregnancy and nursing so before surgery my skin said I had large Ds and my breast flesh said I had small Bs. So, they had a lot of skin to work with and filled me up to 325ccs on each side during surgery. I guess it's about the same size I had going in, just oddly shaped. Round. Strange. Fills start in a few weeks, I guess. Full path won't be ready til next week but the initial report looks very good- lots of atypia but no cancer. Emotionally, I'm feeling really just blank. The meds maybe? The shock of it all? The huge stress being taken away? Not sure. Thank you all for listening and sharing. Wishing you all perfect health. -Kelly
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Kelly - glad everything went well. The surgeons know if the breasts look great - maybe not now, but they will - trust them!! So glad there was no cancer. It's been over a week, so the worst is over - take it easy!!! Hugs, Valerie
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Kelly- So glad you posted and let us know all is well. The feeling of blankness is very normal. Looking back the two months after my MX are just a big blur. Don't get discouraged about the aesthetics right now. Your breasts are going to go through many changes before the final result. It's, unfortunately, a long road but you will get there and the worst is over. Each day really will get better and better. As you go through each stage we're all here for you. For now just take care of yourself. Someone on another thread said it's like when the flight attendant tells you to put your oxygen mask on first before assisting others. If you don't take care of yourself you can't be there for others. So nurture yourself in any way that you can. Gentle (((hugs))).
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Sounds like another successful NSM! Congrats on being closer to the "finish line", Kelly!
I remember the surgeons saying how "great" I looked and realizing I had to trust they knew what they were talking about.... 'cause "great" wouldn't have been the adjective I would have used to describe it! lol!
Totally understand about the "feeling blank" ... though I'm sure much of it is the meds. Like the others have said... just focus on taking care of yourself for now.
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So glad to hear from you, Kelly - you did it! :-)
Definitley don't worry about feeling blank, I still don't recall things from the 1st days home, it was just a fog...but the good thing is you are on the road to getting yourself back! I remember when I saw my chest afterwards and heard it looked good I was like, hmmm, ok then! Now being 2 months out and just finished with fills I think back to how each week things were different physically, it's amazing how much is going on inside you right now and how in a matter of a few months things will look far different than even right now. I am so happy your NSM was a success and the pathology seems great, too!
Take it easy and be good to yourself!
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Just a side note - I have finished my fills and am at 410 cc's, I think I am ready to stop and will talk to PS next week about exchange. Wowza, I am sore and tight! The nurse said I might get a 1/2 fill (30 cc's) if necessary next week. I'm thinking of exchanging out for 400's...but either way the surgery date is set - March 21st.
It is kinda crazy the date, I went in for BMX on my bday...and the exchange is my husbands bday, seriously what a coincidence!!! I was freaked out at 1st, just the meaningfulness of the dates, I will always associate my bday with BMX and the emotional time it was leading up, and now, the exchange excitment falls on another significant day - 2 pretty good bookends for this incredible journey! :-)
I hope you are all feeling well!
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Hello friends. (You are now stuck being my friends, like it or not!) Had my surgery about a week and a half ago and am now noticing an orange peel type look to the lower portion of my breasts. Almost like giant pores. I go back to the PS on Monday but just wondering if anyone else had experienced this. Also forgot to say in my earlier post that instead of incising across the one breast as planned, they were able to do both in my international monetary fund (also known as inframammary fold in BS circles). --Kelly
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My NSM is next week. I'm glad I read some of these comments because I've been wondering how things are going to look.....skin and nipples intact (hopefully), but only partially filled out. Have patience, right??? Not going to be the same as the NSM/flap surgery where it's all done in one fell swoop! I just hope the nipples make it! Somehow, knowing that my breasts will eventually look somewhat the same seems to be helping a lot mentally.
Thanks to all for sharing...it means a lot to those of us just beginning the journey!
TinaT
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Hi Kelly, I had a similar look, I'm verrry fair skinned...I assumed it was the immediate pressure on my skin & maybe a bit of trauma from surgery..., my skin has since "calmed down" but I can still see some shinyness/pores. I have sensitive skin and at one point incisions started to look a VERY dark purple, My PS said it's ok (due to pale skin tone) and all should return to normal, just a strong coloring to the scar tissue, that's fading in color too...definitley ask at your next appt, though!
Welcome, TinaT - Sorry you have to be going through this, but I am happy to hear that you can get a nipple sparing BMX. I feel it really made a difference after surgery, mentally to still "see" myself. The scarring was minimal, It's been 9 weeks since bmx. I have gotten used to this new me, well for now ;-) ...I am done with fills and waiting for exchange in March. I wish you all the best for a smooth surgery and a speedy recovery, be good to yourself & rest up before next week, you deserve it!
There is a ton of helpful info on these boards & we are all here to support you!
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Kelly ~ I had the "large pore" look on the underside of one breast (the cancer side) as well.. and I recall it was a little red for awhile. My PS said it was fine. I also remember him saying I had "thin skin" ... over 2 months later and it all looks good!
Tina ~ The NSM helped me mentally as well. My sisters (and a few close friends) were amazed at how "normal" I looked even one week after the surgery. Wishing you the best in your surgery next week and an easy recovery!
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TinaT: Yes, it takes time... it's a long road that we're on and seems like it never ends. The surgery isn't near as bad as your mind will make it seem. Recovery is different for everyone, but you'll find someone with similar or matching problems... IF... you have any. Hopefully your surgery will be a breeze and healing will be quick. Keep an eye on the drains. Make sure they drain properly.. keep them sterile. Report any redness or fever of the skin to the bs. Report any adnormal pain, or if you think it's abnormal, and report any other effects if you're unsure. Expect to be quite sore but it's manageable with pain meds. You're chest will be quite numb, which to begin with is definitely a good thing. Some numbness will remain for a long time.. some won't go away. You may or may not have feeling in the nipples after surgery. I had one with feeling and one without. You may have numbness under your arms. Your nipples could turn black and have a scab... this is normal but do inform your bs. It doesn't necessarily mean you're losing the nipple at all. Best of luck to you! You'll be fine and on the other side soon!0
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hi valerie,
I'm sorry I haven't been on in awhile. I had BPM in December with reconstruction--mstram, supposed to be DIEP but vessels were too small. I am recovering after some complications but am happy with my decision. It is not worth it to me to constantly wonder if the other shoe is going to drop with regard to cancer occurring. As a matter of fact, after my post, I did have an MRI which was negative, as was the mammogram, digital mammogram and ultrasound post lumpectomy. However, after my BPM, the biopsy revealed more ALH which was not seen by any of the mentioned methodologies which definately reaffirmed to me I had made the correct decision for me. Now, I just need to get my stamina back and quit having pain from the plates they put in.
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mountainmom1 - glad to hear you made the right decision!! Take care and hope the pain goes away quickly!
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Kelly- Glad you were able to have your incisions in the IMF. I think this, along with NSM, goes along way towards feeling more "normal" down the road. Happy to hear you're doing so well.
Tina- Sorry you've joined our club here but this is a great source of support and information. Sometimes it can be hard to find information on NSM so feel free to bombard us with any and all of your questions! The best thing you can do right now before surgery is hydrate constantly. This will make a big difference in how you feel afterwards. Also, try to get your pain medication prescription filled ahead of time so you don't need to stop on the way home from the hospital. There are lots of great threads on here about what to buy and do right before your MX. Good luck to you. We're all here for you anytime!
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Well it looks like I am definitely joining the club. 2 x BC. 2 x lumpectomy. 1 x chemo. and pretty much over it all. I can never do this again. The onc said to me today that he didn't particularly feel I needed to have the surgery as the odds of recurrence are relatively low. "That's what you said last time" I replied. He eventually agreed it was a good course of action for me. The tipping point was when my BS agreed without hesitation when I raised it and he is very conservative. So here are my questions
1. How long did you have pretty much laid up?
2. How long before you could drive?
3. Pain level?
4. Percentage wise how happy are you with how you look compared to before all this started. Do you feel you look better? Worse? The same or just different?
Sorry to ask so many questions but I have a week to make a definite decision as I should have started rads by now if I am not going to have the surgery. As much as I don't want to get back on the treadmill I just can't go back to this again either. The PS thinks my one previously radiated breast should be fine as it responded well and it's been a couple of years.
Any honest thoughts adn opinions will all be weighed up and so appreciated!
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Oh and my procedure won't be immediate recon, they use TEs
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mumorange - so sorry to hear your news. I stayed one night in the hospital, only took pain pills for three days after surgery, and I drove myself to the doctor a week later to get drains removed - although looking back that might not have been the wisest. Of course everyone is different, but I found the pain tolerable. I am very pleased with my results and I feel great - I think I look better because I had 5 lumps (B9) removed before and there wasn't much left - so now I have something!! Good luck - hugs and prayers to you - Valerie (you can check out before and after pictures on the picture forum)
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Hi mumorange,
I'm sorry you have been through so much already, but weighing your options is a good idea.
This is my experience: I didn't have rads/chemo, I just went straight for BMX. I was pretty laid up for 2 weeks, it was Christmas-time and I kinda had to "get it together" after 2 1/2 weeks to get in the holiday spirit for my kids...I was still exausted, but able to travel for the holidays. This is about when I started to drive. I was off narcotics after 7 days, post-op, but I didn't feel confident behind the wheel yet, I couldn't really twist or turn my upper body to see well until about 2 1/2 weeks. After 4 weeks I felt really good, and at 5 weeks I was back to the gym, riding a stationary bike. My inscisions were healing nicely and I was feeling pretty much back to "normal".
Now that I am about 9 weeks out and done with fills I am starting to not feel as great, only because the tissue expanders are at maximum capacity and making it harder to get comfortable and sleep well. Keep in mind everyone's healing time varies, though...
Pain-wise, recovery is definitley individual, I was lucky to be just on Motrin after a week, with Ativan as needed. I definitley take the muscle relaxants (ativan) when I need them at night to sleep, like I said my comfort level seems to be suffering a bit more lately.
As far as how I feel when I look in the mirror, it's a process. I look at it like a "new normal". And with the steps of reconstruction, there's alot of them to get used to! I feel like each week as I got fills, I would get to know this new "me", albeit temporary with the tissue expanders and all. In 6 weeks I'll have implants and it will be another "new me" to get used to. I know that I am not finished and cannot give insight as to how it feels to be done with the whole process, I am sure someone will come along and give insight to that...
Emotionally, I have felt really good throughout this process. I know that saving my nipples was the key to that. The incisions are quite small and under the fold of my breast, now that I am filled, I really don't notice them right away. My tissue expanders have filled in nicely and resemble "real" breasts, if real breasts felt like hard shells! ...that part is annoying, but temporary!...but, I'm definitley perkier than I was before ;-) Now, there is the whole sensation-thing. I am numb from under my arms and across my chest. I can feel only in the space between my breasts, (think the cleavage area). The numbness extends to right under my breasts to about my mid-chest. So far, mentally& physically I am ok with it, (but I also don't have my implants yet) I also think this varies person-to-person.
Overall, in a nutshell - no regrets...I think (or I hope ;-) I have a good grasp on the fact that I will never go back to the way I looked, I try and be mindful of the reason behind all of this and I'm ok. I never want to go back and play the waiting game. Now I can move forward and the only way for me to do that was tocommit to the surgery and feel 100% about it.
I hope this helps...whatever you choose, just believe in it. I wish you all the best in gathering information and making the best choice for you!
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mumorange- So sorry to hear your news especially after going through all that you have- lumpectomies, chemo, rads. As far as how long you'll be laid up I think the two biggest factors are how good of shape you are going in and what your pain threshold is. Some, like valerie, take pain pills for a few days and others I've heard were on them for months. I took them mostly at night to help me sleep. How soon you can drive is probably more determined by how long you're on the pain pills than the actual surgery itself but it does hurt to turn a steering wheel at first. The amount of time laid up would kind of depend on the type of work you do. If it's not terribly physical I've heard some women go back within a few weeks. I personally didn't feel great until about 6 weeks out.
As far as how I look and feel? I think I look better in clothes, my scars are barely visible and I probably look more in proportion now than I did before. The downsides would be the numbness of the breasts and nipples, having to have the implants exchanged sometime down the road, I do have rippling which can occur if you have thin skin and during the MX your pectoral muscles are kind of "re-positioned" which can cause them to flex strangely. (I have heard some surgeons are doing a neurectomy on the nerves so this doesn't happen.) One thing I would definitely ask is where the incisions will be. The preferred method is below the fold of the breast but some surgeons are still taking it right through the center of the breast which can be more disfiguring, obviously.
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