Nipple Sparing Mastectomy with immediate reconstruction

miasanta2007

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!

TinaT

miasanta2007:  So happy you were able to have nipple-sparing surgery, but sorry you're having healing difficulties.  You're only about a month out - the docs seem fairly certain that you're not making some fresh tissue under the ugly outer stuff?  Part of mine was "normal" NS tissue loss, but I ultimately did lose about 1/2 of the nipple and some of the adjacent tissue.  I will likely have a revision to the other nipple down the road, once the affected one is as healed as it's going to get.  The nipple and tissue are still quite inflamed almost 6 months later and I don't want to try to make a "matched" set until things have settled down completely.

After my first debridement I was dealing with open wounds for about 3 months and was on pretty severe restrictions to avoid pulling/stretching the skin.  No lifting, exercising, sweating (to avoid infection), etc.  I am fortunate to not be working outside the home right now so work wasn't really an issue for me.

Like yours, my PS was very patient and encouraging through the whole process and he's very pleased with how things have healed up.

Fingers crossed that you hear some good news at your appointment tomorrow!!! 

Just_V

miasanta  - I agree with TinaT (usually do)... my doctors thought I would lose some of my nipple and skin, too, but I made it through with all of it (although my TE was removed b/c of infection).. and now the PS says just some scarring... did not get rid of all the scabbing and oozing until 6-7 weeks out.....

miasanta2007

so I'm back from the PS...Looking at another surgery: they're fitting me in either on 8/11 or 8/18. He will cut the necrosis out (btw on both breasts) and stitch the skin back together. Oh and take my implants out and put in expanders. Sounds simple enough, but then again, my BMX sounded simple too. I guess it was all too good to be true...

This is all so stressful, but at least I don't have cancer Would love to hear from anyone who's gone through this..And Tina T., thanks so much for your response and your support!

miasanta2007

vhshea- I just saw your post! I am 5 wks post op and my PS seems certain that it won't get better. I was hoping for a miracle..but I have to believe he knows what's best! Do you think I should get a 2nd opinion?

Just_V

Miasanta - not sure.. I really trust my PS - researched him and all... so if you are comfortable with yours, I'd stick with him, but if not...   My PS initially thought I'd lose some skin and was not at all concerned -- certain he would be able to work with the situation... I suspect yours will too.  I am surprised that they are waiting... my PS had me in with the infection the very next day and removed the TEs...

TinaT

miasanta2007:  Oops, guess I missed the part where you mentioned that you already had implants.  FYI, there is another thread here called something like "One Step with Alloderm" for women who have had implants placed at time of mastectomy so you might find that helpful as well.  I could be wrong, but seems like most of us on this thread are on the expander to implant path.  Either way, it is nipple sparing surgery with "immediate" reconstruction...

Again, so sorry you're having a rough go.  Please don't despair - you will reach the finish line even though it feels like a giant step back right now .  I had numerous debridements and one excisional surgery with stitches in an attempt to encourage healing.  It's pretty amazing how well it's healing up.  It's hard to believe when you're staring in the mirror every day, but it will get better!

Hang in there!!!!!!!!!!!!! 

miasanta2007

Mine are memory gel implants, I was so lucky that they were able to do them at the time of the mastectomy! or so I thought...but soon I will also be on the TE path with you all!

I am hanging in there and I do trust my PS who came highly recommended (along with my BS), BUT he's so busy and that's why I have to wait a little while for my surgery.

Would I be able to see your photos, Tina T?

TinaT

miasanta2007:  My photos are on the picture forum, which is separate from this website.  It is privately moderated and there are a number of gatekeepers, including Lilah, firni, MBJ, and a few others.  Please send one of them a PM (private message) through this site to ask for access.  Due to privacy concerns they typically don't pass anyone through until you've posted a certain number of messages on this site...

miasanta2007

Ok, thank you! maybe I'll wait a little then!

merovingian

I'm sorry for the ladies suffering necrosis. In researching on behalf of my wife, I have seen a few studies that have found an increased incidence of necrosis (following NSM) when one-step reconstruction is performed (as opposed to un-filled TEs). It's attributed to the skin and subcutaneous fat being pulled taut by the implant when the blood supply has already been severely affected by the removal of the breast tissue. Two-step allows the breast skin to recover more before it is pulled taut. Anyway, I just pass this nugget on as something to consider before choosing your type of reconstruction.

TinaT

merovingian:  Thanks, it makes sense to me that tightly filling the breast pocket right away would increase the chance of tissue necrosis.  It seems that is what has happened to miasanta2007.  I had nipple sparing surgery with 2-step reconstruction - partially filled implants, but the skin was not stretched or taut.  My necrosis all occurred in the area that was injected with blue dye for the sentinel node localization.  Had never happened to any of my BS's patients before (I was the first, lucky me) and she has done many NS surgeries.  She concluded that it was a combination of inflammation/irritation from the dye on top of the usual temporarily compromised circulation from the nipple sparing procedure.  I have lots of strange allergies and reactions to things.  This wasn't an allergic reaction, but a severe irritation.  So, no guarantees no matter which type of surgery you have.  However, I was surprised when I heard that some PS even place implants right away.  Sounds like more of a gamble, but it must work for the majority of patients or I'm sure it would never be done that way.

Anonymous

merovingian- Thank you for your post.  I hadn't thought of the correlation but what you reported makes a lot of sense.  I wish the PS would get on the same page and realize what is most effective in saving the blood supply to the nipples.  

miasanta2007

yea what's going on in my life right now makes me feel like a big failure...I can't believe how stupid and naive I've been (see my post in "I'm bitchy, I moan, I groan...anyway).. I could have just had a UMX for now, but I only listened to the BS and did NO research. Now all this was for nothing and I' back to square one! But hey, at least I don't have DCIS anymore....Have a great weekend!

baseballmom

Isn't every choice we make that seems right for us a gamble?  With this stupid disease and all the recon and treatment choices it could go either way. Right?

I am one of those with a one step using the Spectrum implant.  I am only 2 weeks post surgery but so far I am very happy with the process.  If everything goes as planned, as we all hope, I am done with surgery. My PS is the dr who invented the implant so I am even more comfortable with my decision and how he's treating my recon.

I haven been reading the exchange thread for some time looking for others who have had the Spectrum implant and I haven't seen any posts.  So if there are others out there would love to hear your experiences.

In my opinion it's a good recon choice if your PS and BS agree.

Just_V

It's always what we didn't do that we think we should have done.. I had a UMX and think I should have had the BMX b/c I am sure that even if the PS gets my boobs looking right when I finally get to the exchange (1Q2012), that in 5-10 my augmented boob will sag while my foob will not.. we never really know - it is a gamble.  I also am thinking I should have gone with a flap option but then I would not have my natural nipple... best option is no BC at all, but that was not an option.

TinaT

miasanta2007:  I went to the other thread and read what's going on.  I'm so sorry you're in the midst of this insurance nightmare, but please don't beat yourself up.  We all make the best decisions we can under very stressful circumstances.  We know our bodies have cancer cells and it's natural to want it OUT as quickly as possible.  We put ourselves in the hands of the experts and still there are no guarantees.  You did nothing wrong, it just didn't work out for you!  My cancers were found very early and everything was going so right at the beginning.  I was hoping to breeze through this thing, but it was a pretty rocky road for a while.

Am I understanding that your nipple-sparing mastectomy with implants was considered an OUTPATIENT procedure and you were in less than 24 hours?  And your revision will also be considered outpatient surgery so you are having insurance problems?  My heart goes out to you...it's hard enough to deal with breast cancer without having all these insurance worries.

Do you have access to a breast cancer navigator in your health system?  If so, he/she might be able to connect you with some resources that might be available to you.  It's worth a shot...

miasanta2007

Yes, Tina, it was considered an outpatient procedure..I will see if they can do the next one as inpatient and then I might see if the can re-process the first surgery too. I realized that I actually was in the hospital for like 27 hrs...I am looking into every possible way to get help with this and trying to be strong...

TinaT

miasanta2007:  Didn't the BS or PS office get insurance authorization prior to the surgery to give you an idea of coverage?  I thought that was pretty standard stuff.  Doesn't seem like you should be finding out after the fact!

So sorry - hang in there.  I again strongly recommend checking out breast navigation services.  They can act on your behalf on many fronts.  Just a thought....

miasanta2007

Tina T, I don't know..you'd think they'd want to make sure they got paid..I know they notified the ins. co (uhc) of what was happening. I mean, not a lot of people could afford a $25 000 hospital bill, right? and $6000 to the BS AND $6000 to pathology...where do they come up with these crazy amounts anyway?

But I do want to have the TEs put in, I think...and hopefully, I won't be ready for the implants until next calendar year.....I'm praying that the PS will do it as an inpatient claim, Please keep your fingers crossed! I'm calling them tomorrow.

miasanta2007

Things are somewhat looking up...hospital actually contacted me and said they're doing everything they can to get me assistance with my $25,000 bill AND my PS will be doing my surgery as an in-patient procedure AS LONG as the ins. approves it. Scheduled for 8/18. Please send good thoughts, prayers or keep your fingers crossed, whatever you want!  Much love!

TinaT

miasanta2007:  Fingers, toes, and eyes crossed!!!

miasanta2007

Tina T: lol, I'm picturing your eyes crossed

Urban_Mom

I just wanted to thank the ladies on this board for your up-front (forgive the pun) discussions as you have gone through this process.  I had NO IDEA that my breasts would look the way that they did after my NS/BMX.  The descriptions of scabbing and possibility of necrosis and infection have made me aware that I am not going through this alone.  I have come to understand that there is no "normal" - even the healing of my left is different from my (noncancerous) right breast.  But I was shocked when the bandages first came off.  I did not realize that the trauma to the skin during the BMX would result in big ugly bruises and injury to the skin of my breasts and nipples that would crust over and turn into big nasty black scabs. 

It is 3 weeks today since my nipple-sparing surgery, and I see some PINK skin underneath! OK - I tend to look at the world through rose colored glasses - but really, I see some pink.  That, plus your words have given me a great deal of hope that, in time, I will have attractive-looking breasts again,and very possibly will have retained as much of ME as possible.  I just need to be patient and help myself recover ... eating right, building strength back, etc.

The information you have provided has done a great deal to relieve my concerns during a time that has been quite stressful enough.  Thank you.  I'll keep you posted on the recovery process. 

Just_V

I am two months post op from my UMX with NSS - the TE became infected and was removed.  Now I have a viable nipple but the skin was so compromised that I now need a flap surgery to move on (scar tissue adhered to the ribcage).  I am so tired of this and it's only been two months....

Urban_Mom

Two months of healing and hoping and dealing with infection only to have to undergo flap surgery must be very discouraging, but you can only move forward from where you are.  Dealing with this whole breast cancer issue can be so Consuming!  I hope that you are finding other things that make you smile and that all you folks in TX get some rain real soon.

TinaT

vhshea:  I feel a bit guilty being happy for myself when you and Rennasus and others are still struggling along.  You'll get there - your path just has more hairpin turns slowing you down .  Please don't lose faith, hang in there!!!!!!

miasanta2007

vhshea: sorry for what you're going through, all this is so emotionally draining..I had a very "low" day today..but talked to a couple of great friends and I know I'm ready to look ahead. Just..some times it's soo hard. Hey, let's hope in say 6 months this will all be behind us!!

Tina T: you don't have to feel bad, you've been through hell yourself and you deserve to finally be happy!

TinaT

miasanta2007:  Thanks!  I am happy that I'm finally back on track.  Still, it hard knowing that so many women are having such a tough go of it.....and the newly-diagnosed keep marching in.  A never-ending line of women who's lives have been thrown off course.  Grrrrr!

Just_V

TinaT - you've talked so many of us through it!  Guilt is only good if it causes you to change bad behavior - being happy that things are going better is not a bad behavior.