Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Kate33: Please keep us informed of your NSM awareness campaign. Also, please let us know if there's something more active that we can do to help. I'm still focused on reconstruction and healing right now, but as soon as life is a little more "normal" I've got both the NSM and dense breast issues that I want to help with somehow. Too many women are falling by the wayside in both these camps!0
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Tina- It's kind of personal but when the subject of my BC comes up I sneak NS into the conversation. Without fail almost every woman I talk to has never heard of NS. She may not need the information now but down the road she might- or her mom, sister, daughter, etc. Or she tells a friend who tells a friend. I've even had some people ask for all the contact information for my BS that did the NS. I gladly put everything into their cell phone. I hope they never need her number but if they do they know where to go.
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Kate33: I'm actually quite private about my BC (small town), but it always seems to work into the conversation when I do discuss it. Invariably people ask where I had my surgery and when I say that I traveled 125 miles away they're usually curious about that so I 'splain it to them! I've offered my name as a reference to my local BS and breast CA navigator as well as the BS and PS who did my surgery.
Thanks for being a champion for the cause!!!
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Thanks, LisaMG, Kate33 and TinaT. Sorry I didn't realize you'd responded until now. The cancer is 4 cm in size and is apparently near, but not too near, to the nipple. I guess I was confused about who did the actual NSS, thinking it was the plastic surgeon and not the BS. I frankly don't care WHO does it as long as he does it successfully! At this point, the incisions are supposed to be on the side, although the PS said that that will be up to the BS that day.
Thanks for the input. It helps to get more clarity. Right now I'm in the numb and full of denial stage (coming hard on the heels of the freaked out and "Can this really be happening to me?" stage). I suspect I won't believe it's really happening until they wheel me into the operating room!
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Therese9 - It's a very surreal experience for me at times. I still occasionally wake up in the morning and think, "Yep, this is really happening", but much less often than at the beginning.
I hope the nipple sparing surgery is possible for you. I was lucky to be diagnosed very early, but I mostly credit NSM for how well I've done mentally and emotionally. It hasn't been a fun year, but to look in the mirror and see "me" is a wonderful thing! The hardest thing for me to cope with has been the loss of sensation....still trying to come to grips with that.
Best of luck - keep us posted with your progress!!!
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So I saw a new PS since my plan of TE/implant recon is not viable any longer due to compromised skin... but! My new PS was very excited that I had the NSS surgery and said that even with the DIEP flap surgery, they will use my nipple b/c recreation of the nipple is "very difficult". So even with the issues I have run into, looks like my nipple will be with me for the rest of my life!
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Just_V- That is such great news! I do think it's harder to create a natural looking nipple over a natural looking breast.
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ah... TinaT - probably my new PS - one more to see but I really liked this guy. His whole practice is breast reconstruction.. that in and of itself speaks volumes.... and the flap surgery is 35-40 % of his business AND if he cannot perform the DIEP, he just does the tummy tuck and closes you up - he will not do a TRAM (which takes part of your ab muscles)... Sounds very promising...
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Just V so glad you like this new PS I now that had to make you feel better about your situation. PRMA in San Antonio also only does breast reconstruction which is why I like them as well.
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Hi all, I haven't posted here because I had an areola and skin sparing MX instead of the NSM. If there are any women posting here who can't have the NSM because the tumor is too close to the nipple, this might be an option for then. I have photos posted on TimTam's site.
I am pleased with my result because the BS saved ALL of my skin, and made very short incisions through my areolas while excising the nipples. I have no visible scars because the 3-D tattoos hide the short incisions. I did have to get tattoos to even up the color on my areolas.
Best wishes to you all.
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Kristinka- Thanks for posting and letting others know about this option. I think the areolas are harder to reconstruct and have it look natural than the actual nipples themselves so it's good to know this is available. If nothing else, doctors should be offering this option to all women to those who are candidates for NS. The more we can share this info the more women will know what their options are and to demand them. Thanks again and great to hear from you!
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Hi Kate! How pretty your photo is!
About to get my MRI next thursday and Monday Am quarterbacking on the prophy....what if's, etc., etc.
At any rate, once I get insurance coverage (ha ha, we'll see) it's on. Are your highbeams playable with? Nice question, huh, but too embarassed to ask that cute young PS of mine.
Mr. Also needs to know
(blush). I'll be getting brand new origami nip on the mtxmy bc boob and hopefully keeping the nip on the prophy (right) boob. this is quite a long process, but at least the first part of it (reduce and lift) seems pretty minor and a quck recovery.
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anniealso- Thank you! As far as playable- yes, but usually no response on our end. There are a few exceptions on here, though, of some who retained sensation. Overall, it seems pretty rare. Unfortunately, for me that is one errogenous zone that has gone by the wayside- but there are so many more!
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Just_V: So glad you have a new PS and your "nipple for life". Any PS who sounds excited that you had NSS sounds like a keeper. How long before you do the DIEP?
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I have one more PS to interview - only because I have two personal DIEP recommendations - so I am thinking some time at the end of October, beginning of November... I just was tested for the BRCA gene and need to wait 10 days for that - so that will weigh into removing my other breast or not - I've been leaning that way (removal) but it is just sooo much more surgery that I hesitate...
but yeah! He was excited and that IS a great sign!
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Hi all, I got to see my new body for the first time today. I am 9 days post bmx. I had one step reconstruction(natrelle style 15 457 cc's) and nipple sparing. I was wowed by how good they looked that I almost forgot I have bc
They were a bit bruised and smushed from the bandages but so far so good. My younger dd was with me and she kept saying, "Mom, they look great!" Have a good weekend all.0 -
Yay Caryn! SO excited you liked what you saw - hoooray!
Sarah
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Thanks, Sarah and as I mentioned in the September group, the chihuahuas have run away!
Caryn0 -
oh girls, i just posted on exchange city thread. 3 1/2 years out, almost 4, my yearly MRI request by my onc was denied! Also my prophy request was denied!
WTF????
We are appealing, but am I crazy or did they not just pass a law stating that a woman is entitled to surgery on the contralateral breast to match?
And this is for risk reduction.........they just said "no density and breast normal"....soooo not true. The reason they could not find my 1.5 cm lump in 6 years of monitoring by mammo was breast density. MRI saved my life!
I am just sick over this....
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annie- It is a law that they have to cover the surgery to match the other breast so they are "symetrical or balanced". It is called the Women's Health and Cancer Rights Act of 1998". The only exceptions are someone who is using Medicaire or Medicaid. Here's a link to the information on the American Cancer Society website-
According to the Susan G Koman site, though, there isn't a federal law saying insurance companies have to cover prophy mx. Coverage varies state by state. Here's what their site says-
"At this time, there is no federal law requiring insurance providers to cover prophylactic mastectomy. Coverage varies state to state. To find out whether or not your state has a law requiring coverage for the procedure, visit the State Cancer Legislative Database Program at http://www.scld-nci.net/. You can also check with your insurance provider."Sorry! I know how frustrating this is! I would definitely try appealing it with your insurance company. Most have a link right on their website so you can submit it for reconsideration. Good luck with everything! (((hugs)))0 -
Caryn -- Great news! Pam
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Hi All.
Glad to read your posts. I'm checking in now that I have more energy post surgery. I'm nearly two weeks out from my BMX with SS and NSS. My nipples are a pale pink and seem to be doing okay, although I've been having more pain in my breasts recently since my ps took out my drains last week. It's hard to know what is normal pain and what is something to be genuinely concerned about. Does anyone else have pain with their bra on or sharp, shooting pains in their breasts? I have the tightness that everyone talks about (the tissue expanders).
anniealso, I'm so sorry that you're having to deal with stupid insurance companies on this issue. This sort of reasonable coverage should be uniform and not vary from state to state. Hope you are able to successfully appeal this decision. Great news, Caryn! Kate, thanks for all the info.
Hope all you ladies are healing well. xoxo, Therese
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Therese9 - Hurray for healthy pink nipples! February (when I had my surgery) seems like a lifetime ago now. I thought everything would be etched in my memory, but it's already fading. I did have a lot of tightness because my TEs were filled with 350cc at the very beginning. I don't remember having sharp pains in the breasts. If this has become worse since your drains were removed you should be on the lookout for seromas (fluid buildup). Otherwise, it's only been two weeks so it seems natural to still be hurting. I didn't wear a bra for most of my TE span. Perhaps yours is too tight?
When in doubt always check with your PS!
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Therese- First of all, congratulations on what sounds like a very successful NSM. So glad you were able to have that option. I know how hard these first few weeks are as your body adjusts (if it ever can) to everything. I never had the pain with wearing a bra but, then again, I usually didn't bother wearing one since the TE's made everything so rock hard. The shooting pains are very common since so many nerves were cut during surgery. As those nerves start to regenerate this may continue for awhile. If it gets too painful you can ask your PS to prescribe something like Nuerontin which helps with nerve pain. I know it's hard to know what's "normal" but as long as you're not showing any signs of infection (redness, fever, oozing, etc) it usually just means your body is recovering. (If you do see signs of infection call your PS right away.) Don't expect too much too early. Your surgery was only 2 weeks ago! You're doing great! I remember someone told me that as far as your body is concerned there is no difference between surgery and being stabbed. (A little dramatic but you get the idea.) There's a lot of trauma to the body and it will take awhile for things to ease up a bit. (((gentle hugs)))
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Joining this thread as I had a NSS on the R and partial aerola sparing on the L 2 wks ago. The R side had lots of pain in the first week and when I had the bandages removed the tip of the R nipple was black. Now, though, the scab is coming off gradually and revealing a healthy pink nipple underneath. Yay! That nipple is now becoming very sensitive to any material touching it which I presume is normal and will pass with time. I'm not wearing a bra unless I absolutely have to since it is uncomfortable (and I've always hated bras).
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dancetrancer - I'll join you in a YAY! I had some nipple sensitivity in the beginning, but have no feeling at all now. My BS told me that about 50% of her NS patients report that they have long-term "feeling" as you describe - not necessarily pleasurable, but a sensitivity to fabrics, etc. So, I guess only time will tell how yours will react in the long-term.
Happy healing!!!
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