Nipple skin sparing mastectomy???

I heard about this procedure from someone on these boards and looked it up on google. I found a number of medical journal articles. There is a clinical trial happening right now at MC Anderson in Houston, and there was another that ended a few years ago, led by a physicial from Cleveland, Joseph Crowe. I wrote to him, mentioning that I also have had lumpectomy and rads and he wrote back that he didnt see a problem with it. Apparently what can happen to the nipple after rads is skin necrosis, and that may mean they would end up having to remove it later on. There is also a slightly higher recurrence risk, since the nipple has milk ducts in it, cancerous cellls could appear there.

I also wrote to the people in Houston but they told me I had to go there to be seen if I wanted their input. I am in Brazil and dont have health insurance in the US so participating in their trial is out of the question for me...

However, after a struggle, I convinced my surgeon here in Brazil to do this procedure on me. It is scheduled for next week. She was dubious because of the higher recurrence risk. But since my tumor shows up on the MRI as about halfway between the nipple and the axila, confined to the ducts (although the needle biopsy showed some microinvasion), I feel it is worth a try. The agreement we came to is that she will do a frozen section during surgery, and if there are any cancer cells behind the nipple she will remove it then and there. But apparently sometimes they miss things on frozen sections, so if the path report comes back showing the margin near the nipple was not clean, she will do another resection then.

 I should mention that I´m also planning to do have a tissue expander put in. I go in for surgery next Wednesday, and I´m praying for it all to go smoothly!

 Lisa

Hi Ladies,

I had skin sparing and nipple sparing followed by a SGAP repair.  Dr.S was my surgical oncologist.  He is also conducting studies on skin and nipple sparing that are very promising.  He has strict guidelines on who is a candidate.  I did not think this was even an option.  After he told me I was a candidate I went home and researched it before making my decision.  

I had the frozen section at the time of surgery with the instructions to remove the nipple if there was cancer there or too near. 

Janine and Sunandsandgirl,

So interesting to hear about your experiences. Where do you live? I am just wondering what cities this surgery is being done in, apart from Cleveland and Houston.

In my case I believe my surgeon is planning to make the incision at the tumor location. Originally she had thought of doing one like yours, Janine, but later we found via MRI that my tumor is only 1 mm away from the muscle wall. This means she will have to take some muscle tissue to get a clean margin, and it seems it will be easier to take only what´s absolutely necessary if she makes the incision close to the scene of the crime!

Lisa

pitanga,

I live in S.C., but I traveled to New Orleans for my surgery.  

sunandsandgirl 

Lisa,

I had my surgery in Grand Rapids, Michigan.  I think this surgery is actually becoming very common.  Good luck to you!

pitanga,

I did not have any micro invasion to my lymph or blood vessels.  They did a sentinel node biopsy during my surgery and it showed no invasion.  This may be different.  Definitely worth researching and investigating to obtain more info before making your decision.  

As it was explained to me, there was less risk of invasion just keeping the areola than keeping the nipple and areola. The tissue of the areola is  more similar to skin than the nipple tissue which does have ducts.  Microscopically, the skin, areola, and nipple are all different.  He also said nipples could be created from the areola that are very beautiful.

 Yes, they can go back and remove the nipple.  Dr. S said that was also an option.  I had frozen sections at the time of surgery, but he said if the final report came back that there was more cancer they could easily remove the nipple at my stage 2 surgery. 

Hope this helps.  It is so confusing gathering all the info and making the decision that is right for you. It took me several weeks to digest the information and make the decision that I felt I could be happy with and live with.  Good Luck to you!

Sunandsandgirl 

Pitanga,

To answer your queston, I had ADL and AHL which are supposedly pre cancers in my adjacent breast.  I had DCIS and IDC in the other breast.  So, one breast was considered a prophylactic mastectomy.  However, when the final report came in from the mastectomy there were other sites of of the ADL and AHL. I was thankful that I had chosen to do both. The surgeon said it was probably only a matter of time before I had cancer in that breast as well.  I know doing the nipple and skin sparing procedures have added risks, and at this time I am willing to take them.  Remember everyone is different.  Keep asking and researching to find all the answer that you need.

Oh!  I so hope you can close that can of worms.  Something else to think about.. I am participating in a biophosphate study.  Supposedly they are finding that women who take biophosphates are having less recurrence of bone mets.  Of course the Clodronate has it's own SE as well.  I will pray that you will quickly find the answers to the "blip" on your spine.  

Hey, I am all for saving deck chairs, changing ships to Holland America or the ship of your choice, and heading towards warm water and sunshine.    Good luck to you! 

I wish I would have kept those websites but I don't remember them. I know one article was from Japan and it stated that their were very few lobules and ducts in the nipple.

Hi Pitanga, I also contacted Dr. Crowe at the Cleveland Clinic about Nipple Sparing mastectomy, but decided not to travel. Prior to having the bilateral skin sparing mastectomy I had a lumpectomy. My cancer was also very close to the chest wall, but still contained within the ducts.  My surgeon did the incision under the nipple and I had no visible scar from the lumpectomy. But, as I healed, it became apparent that too much tissue had been removed from my small breasts to have a good cosmetic result.  Also, more cancer was found in the lumpectomy pathology.  I choice to have the bilateral skin sparing with immediate reconstruction (expanders replaced with silicone cohesive gel implants) and then nipple reconstruction and tattoos.  I am extremely pleased with the results. I only have very small incisions visible on the sides of the tattoos. I am using silicone strips and I expect they will be almost invisible by summer. I went from an A cup to a full C cup.  I will be happy to send you my reconstruction photos. Just let me know.  Wish you all the best. Geri

gymgirl- I am having incision pain and wonder how long, if you remember, that lasted. Most of the people on here have the incision on the nipple and I wonder if that is less painful since there aren't big hooters sitting on them. My implants are 600cc and my expanders were 400cc. I tolerate it during the day and take a vicodin or 2 at night but I don't want to take anymore narcs. Any advice you have would be helpful. (I don't have any reddness or swelling and they look great so I don't think there is anything wrong)

Hi Skippyrcis,

I am betting we had the same surgeon or possible his brother.  Was it either Charlie or John you used?  If so, would you mind telling me which PS you used?  I had John as my surgeon and Dr. Soler as my PS here in Tampa.  Although I am just over 2 weeks post op and really freaked with black tips to my nipples, I am now beginning to see some pink and what the end result should look like and will be very happy.  The major pain is gone (immediate expanders and 300cc fills), I still feel like I did when I had breast feed my daughter and became engorged.  I think that is probably the best description I can offer to someone about to make this decision.

Like karen9516, I had extensive ADH and ALH in my left breast and 2 chunks later, I was still without clear margins.  I decided enough was enough and knew if any more was taken I would beg for a mx.  I also had very dense breast with lots of fibrous cysts which had not dimished with menopause.   When I was told I was a good candidate for the skin and nipple sparing AND there was a local team, that made my decision a bit easier.

buggie

Hi Kristin,!!

Yes it is a small world!!  I really thought I would have to leave the state for this procedure so was thrilled to find the option so close to home.  I am heading to Dr. Soler's on Wed so we'll miss each other.  I'll send you a personal message with my cell as I would love to meet for coffee. 

Thanks for responding and yes, I can see why you would have a crush on Dr. Soler.  :-)

 Wanda

1stick- How cool all the way from London. I am so happy you are happy about your surgery. I am so happy about mine too. Like you I would have been devastated without my nipples I think. My belief is that eventually this will be the only surgery they will do. It does take a skilled surgeon my surgeon and plastic surgeon are friends. My PS was making fun of my surgeon sweating when she did my mastectomy. I was the first skin sparing she had ever done. I personally did'nt have any necrosis of my nipples but they both warned me I might have some and my surgeon said that my nipples were purple right after surgery. Have you had your exchange yet? You will look like you had breast augmentation it is awesome! To all of you who didn't have one I have seen some awesome boobs and reconstructed nipples on here!

Thanks Karen.  I have to say I am soooo excited about exchange.  It's amazing - I swear my boobs already look a million times better than they did before.  Post breast feeding they were not a pretty sight! I believe I had about 100cc fluid put in the TE at surgery and haven't yet had a fill (?maybe Friday when I see the PS again).  Although they are a bit square at the moment, they sit nicely on my chest and look great with or without a bra. Definitely good for the psyche and if we can be clear about which patients it is safe for, definitely the way forward in the future.

Snoopygirl5- If I were you I wouldn't buy any bras with your expanders in or at least don't pay too much for them. Your shape and size will change, maybe not much but I bought 3 bras and they don't fit me. My expanders were filled to 400 and my implants are 600 and none of them fit, all way too small! I had a nipple sparing as well and very happy with my results. mine were filed with 350 at the time of surgery. I had an On-Q pump (Bupivicaine, drug related to Novocain) and had less pain than with my exchange. I hope you don't have too much pain. You will love your implants! I have silicone and they are sooooo soft.