Nipple Sparing Surgery

westiemom · March 2010

westiemom · March 2010

February 24th I was diagnosed with DCIS 1.8 cm right breast, grade 3, the breast surgeon told me after the lumpectomy that she couldn't get clear margins. She decided to not attempt a second lumpectomy and suggested a mastectomy. Her procedure removes the entire nipple and makes an incision along one side of each breast. Brac came back positive so I've decided to have a bi-lateral but I'm set on nipple sparing, only two surgeons in my area perform this procedure. I had a consult with one of the breast surgeons who does the nipple sparing - I just had to check my options.

This surgeon told me that depending on the findings at the time of the surgery if cancer is found in the nipple area she would have to remove it - which I totally understand but I told her considering I've been told that I will have to have 24 weeks of chemo, wouldn't this "kill" lingering cells. She said she understood my point but wanted me to be prepared either way, she said my unaffected breast shouldn't be a problem. I told her this is what I want and I'm willing to do it. She is willing to conduct the procedure from one incision, the incision would be the one she will make to remove lymph nodes (under the arm). I met with my plastic surgeon and he said he can place the implants based on the breast surgeons incision. When I called my original breast surgeon to cancel, the nurse wanted to know why, told her I made the decision to do nipple sparing and found a surgeon who would do the procedure, she pratically yelled at me and said "what surgeon would do such a thing...this is not supported by industry standard!" needless to say I went numb after she yelled at me. I had to remind myself, this is what "I" want and I need to feel good about my decision.

So, wouldn't chemo "kill" any lingering cancer cells should I have any that may have been overlooked in the nipple area? I want to feel good about my decision since I will have to live with the after effects. Thoughts anyone....I really don't have anyone to talk to....

Kayleigh3483 · March 2010

Ignore the woman who yelled at you! Nipple sparing is fast becomming the industry standard and she is behind the times. I don't think you will regret this at all. (I don't)

Yes, theoretically chemo could kill lingering cells...but that's assuming the chemo works on your particular cancer, which it doesn't always, sad to say. The only way one knows if chemo will work on their specific cancer is if they do chemo before surgery, known as neoadjuvent chemo -- and the tumor(s) are monitered to see if the chemo shrinks them.

Anyway, I have heard of women insisting that even if cancer is found in their nipple that it not be removed. But I also know that the two docs I found that were willing to do nipple sparing on me would have refused to do so if I didn't agree to removing the nipple if it was found to be cancerous.

The bottom line is it is your body...cancer is scary and sometimes docs play on that fear to get you to do what they want -- sometimes because it is the type of surgery or treatment that they are best at. Do your homework and make your own decisions based on all the opinions you get.

Best of luck!!!

Cherries58 · March 2010

Hi westiemom. I had nipple sparing bimastectomy but mine was prophylactic. My surgeon was a little reluctant but the PS thought it was a good idea. If you go through with it make sure the PS has done many many before. I was an A prior to surgery and for some reason the expanders expanded outward. There was about 4 or so inches between boobs. When I had the exchange,yesterday, it was more difficult to develop my clevage because he wanted to keep my nipples in a good position - not too far to the left or right and symmetrical. We'll see how well he did soon. Also, my areolas are fading away. They are getting smaller and smaller. PS says its lack of blood flow. Your decision should be your health first then your looks. I'm not sure I mind having small areolas. No bras with light shirts. I understand why you want to keep your nipples for a more natural look. I have no feeling in them. Good luck

pitanga · April 2010

Westiemom,

I can relate very much to your desire to keep your nipple. I went through a similar struggle myself last year before my mastectomy. My tumor was small (0.7 cm) very far from the nipple and invasive, not DCIS. I ended up keeping my nipple.

Chemo kills off the cells that are trying to reproduce when the chemo is given. That is why it is given as a series of treatments--so that if some cells were not reproducing and thus were missed, they could be hit by the next treatment. Sometimes it works out and the cancer never comes back. But sometimes there are a few cells still floating around that werent reproducing during any of the chemo treatments and so went unscathed. That is why women who have had chemo sometimes get local recurrences and/or metastases.

The mastectomy I had a year ago came nine years after I was treated for Stage 2 cancer at age 39. I had a 1 cm grade 2 tumor and 1 positive lymph node. I was treated with lumpectomy, chemo and radiation.

This time around, another reason I was able to have a nipple-sparing mastectomy is that when they found my local recurrence they also found a metastasis to my cervical spine which is inoperable. Since the cancer has spread, it is no longer curable, and I will be in palliative treatment for as long as it keeps working. Since there is already metastatic disease, another local recurrence would be small potatoes.

Your tumor is relatively small which is good, but it is grade 3, which is not good. The fact that your doctor could not get clean margins is also not so good, because it might mean that there could be other areas of DCIS that were too small to see on the mammogram.

Best of luck to you in making this very difficult decision.

Lisa

Kleenex · April 2010

Back in mid-2008 when I was discussing treatment options and reasons for doing different procedures with my all-breasts, all-the-time surgeon, I asked "the nipple question." It just struck me as bizarre - the way that they create that angled scar and remove everything, including the nipple. I was told that the reason nipples are routinely removed as part of the mastectomy process is that they are an integral part of the gland and duct systems within the breast that are removed to treat/prevent cancer. The nipple is not a separate organ - it's the outer end of the duct system of the breast and so in the process of removing all tissues that could contain or develop cancer, they "need" to remove the nipple in much the same way as they need to try to get all the other bits of breast tissue, even if it's up under the arm, etc. In addition, the surgeon pointed out, there's no feeling left in the nipples if they are left, because all of the nerves are cut when the tissue immediately behind them is removed. They don't have sensation and they don't function the same way. Her theory was that it was safer to remove anything that could become cancerous, and since they weren't going to retain any feeling or function and it was going to be an appearance thing, tattoos afterward were safer.

I also recently had a mammogram tech tell me that the tissue immediately behind the nipple is a very common location for recurrence. (She's very much Mammogram Tech of Doom - if I were less knowledgable, she'd scare me to death sometimes.)

The PS I consulted with also told me that there's no guarantee as to how finished reconstruction will look - natural breast tissue is located above the pectoral muscles, and so the position of one's natural breasts is not always representative of what you'll get with breasts reconstructed using implants which must be placed under the muscle. Often the chest muscle is tightly connected to the sternum in the cleavage area, so the implants are farther apart and can angle outward, even if the original breasts didn't. My sister, who got augmentation of her smallish natural breasts, has this issue - they kind of point out to the sides and she can't really push them together to create cleavage. It's a muscle structure issue.

Of course, I went on to "start small," with lumpectomy and radiation (which I wouldn't have been able to skip even with a mastectomy due to the location of my tumor)... I suppose that leaves me with a whole bunch of tissue that could still become cancerous, but it's under regular surveillance...

Anonymous · May 2010

westiemom-

My original BS never even told me this procedure was a possibility. I found it totally by random internet searching of treatment options. When I returned to her office and asked her about it she tried to talk me out of it. Only then did I learn that she wasn't trained in the procedure. My husband did some research and found a surgeon 2 hours from our home who had an excellent reputation for performing NSM with excellent results. I met with her and she told me that I was an excellent candidate. (DCIS, cancer not near the nipple, small breasted, etc.) She told me that during my MX she would be testing some cells within the nipple for cancer and if any were detected she would remove the nipples at that time which I agreed to. They, and my sentinel nodes, were both clear so I now have two perfectly normal looking nipples. It may not be a big issue for some women but it was for me. And I think if at all possible women should be given a choice whether that surgeon is able to perform the procedure or not.

Only you can decide if this is the right decision or not. My BS told me that the rate of recurrence is the same if you have a MX, skin-saving MX or skin-saving and nipple-saving MX. She said if the cancer were to recur you would feel the bump right away but that she would order annual mammograms, MRI's or prescribe Tamoxifen if I felt it would give me more peace of mind but that she didn't really think it was necessary. If there is cancer in the nipple it came from the duct. If you have a MX all of your ducts are removed so where would the cancer come from? So far I am happy with my outcome (I am currently going through tissue expansion) but I guess time will tell if I made the right decision or not. Good luck to you!

Nipple Sparing Surgery

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