Prophylactic Mastectomy

I just had prophylactic mastectomy in Dec.  The surgeon did not take my nipple.  He used a nipple sparing technique.  Everything is mine except for the insides.

Hi: I had nipple sparing also.  Dr. Seema Kahn, (Northwestern University Hospital, Lynn Sage Breast Cancer Institute, Chicago) and the ps was Dr. Kim.  Dr. Kahn said the techniques for removing tissue used in the early studies is different today.  The increased risk on nipple sparing is now maybe up to 2%.  since I was reducing my risk by 90% I felt I could "spend" the 2% and not feel as if I gave up so much.  My breasts do look natural.  One nipple pops up when touched.  She said the other one might respond in time as nerve endings grow.

I was diagnosed with LCIS on Nov 13, 2007. My mother had breast cancer, both her siblings had stomach cancer, my grandmother died of some sort of cancer. (It was probably Uterine or Ovarian but I think they called it "stomach cancer" out of modesty in those days). I also had a first cousin who died of brain cancer at the age of 22 and another female first cousin who has been closely "watched" for breast cancer these last 3 years.



I had the BRCA test and it came out negative. They said that there are still mutations that they don't know about, though. There is controversy about LSIS being an insitu cancer or a marker for future invasive cancer. With the added risk of my family history, I have decided to have a Bilateral Prophylactic Mastectomy. My surgery is scheduled for Feb 12th at a large well thought of Cancer Hospital Center in NYC. The surgeon said he can do an areola and skin sparing surgery. His feeling is that it is the nipple that has all the ducts etc. So I will keep the skin, areola and everything else will be removed.



I met with the plastic surgeon and she said that since I want small breasts (a large A or small B cup) she can use AlloDerm and saline implants and do it all in one operation. It is expected to take 5 hours total. I am very happy about keeping the areola, my nipples are not prominent so I do not feel I will miss them. My surgeon says a sentinal node biopsy is up to me, At first I thought I would do it but now I am feeling that I won't. I am an artist, a painter of very large canvases. I need full arm strength for both painting and carrying work around my studio. I am afraid of compromising this. I feel the risk, (and so does my surgeon) of any node involvement is very small in comparison with the risk of lymphodema or arm pain.



Does anyone have advice,information and/or opinions about my upcoming operation? How long will it take for me to be back to my life? What was your experience with pain, healing, clothes to wear during recovery, hospital experience, important tips, etc. I know this is the right thing for me to be doing but I am nervous. We women are so good at sharing info. I await and welcome your feedback.

femme

I have a close friend who did nipple-sparing and it was fantastic for her (well, as fantastic as that whole situation can be). She was BRCA positive and had a very strong family history, including a relative who developed BC AFTER a prophylactic mast (it does happen).

She went to Patrick Borgen at Maimonides in Brooklyn. He also did a non-sparing prophylastic mast on my friend's wife and did a beautiful job. She got the tattoed areola.I don't live in NY but Borgen reviewed my biopsy results last year and was really, really helpful. I highly recommend him.

I hope this helps and stay brave! 

femme,

I too have been diagnosed with LCIS and I am waiting on genetic testing results. I am seriously considering PBM. Both my mother and sister had breast cancer. Am I being too drastic? I really feel it is the right decision for me. Does anyone know if they can just put the implants in during the same operation or do you have to have expanders? Does anyone know a good plastic surgeon in the Northern VA area. I could go to Johns Hopkins.



Any thoughts are appreciated. I am on my way to my first oncology appt right now....

I had a double mastectomy skin/nipple/areola saving on November 2nd. Had tissue expanders placed under the muscles at the time of the mast. I am just at the end of the expansion process- thank goodness! So far all looks good, but the expanders are very hard. No sensation in the breast skin or nipples, but both nipples do react to cold and touch. Scheduled to have the exchange to permanent implants next week! I have kept a photo journal of my little journey which I will post in the picture forum in a couple weeks.

Without the tissue expansion process, which for me (and many others - see tissue expander pain thread on this site) was very long and uncomfortable the whole process would have been quite easy to handle. The mastectomy itself was surprisingly easy to recover from -about 1 week. And I had 220 ccs of saline put into the expanders at the time of surgery (I think that might be a small A cup) and even the first expansion of 100 cc was not uncomfortable. So the person going for the one stage surgery with small cup size, from my experience, should be relatively easy.

Good luck

Thanks for all the info. I do hope it will go well. I do have a problem.



I have been trying to pin down my surgeon regarding the sentinel node biopsy. He said it was not necessary for my procedure. I have been pressing him via email for an answer as to why it is not necessary. I asked him how we would know if perhaps a malignant cell might have escaped and gone into the nodes. He said "then do the sentinel if you have those concerns." He won't tell me if he feels that the odds of a node being positive is very, very rare with LCIS. Then I could easily make a decision as I use my arms and hands as an artist/sculptor and can't compromise their strength..



From what I can gather, the surgeon will not respond to my question because doctors are very worried about being sued, and if a direct question is asked, and I follow his opinion, and then there I get invasive cancer down the road, he worries about getting sued. My husband practiced medicine, and was required to take "Risk Management" courses every year to renew his malpractice insurance. Part of this involves how to talk to patients so you don't open yourself u to a law suit. So this is really a bummer because I am unable to make an informed decision.



My surgeon is one of the best surgeons in NY. He did an amazing job on my excisional biopsy. It looks almost exactly as it did and so I do want him to be part of my surgical team. Does anyone have any info on the necessity of SNB for someone who has LSIC (lobular carcinoma in situ) NOT DCIS? Any good papers on the necessity for it with LCIS? Other than this glitch, I am almost ready for my PBM and one stage saline reconstruction on Feb 12th. .

femme--theorectically, you shouldn't need a SNB to check for any invasion into the nodes, as LCIS itself is non-invasive. Doctors like to avoid invasive procedures  unless absolutely necessary.  The risk of lymphedema increases with the number of nodes removed; the risk is significantly less with SNB, but it still exists.  I know how you feel--you want to cover all bases--I asked about a SNB at the time of my lumpectomy for LCIS, surgeon said no for the reasons I mentioned.  But I think someone (I think it was Bessie) mentioned it still can be done after mastectomy, with them removing just a few nodes.

Anne 

My 2 cents: I was dx with LCIS in all biopsies (stereotactic, core bx taken from another area during lumpectomy) and after mastectomy, the pathology came back with a small invasive portion. The surgeon also said it was up to me if I wanted the SNB.  I decided to go ahead with it, just to be cautious.  I have to say that the SNB alone didn't give me trouble at all in healing.  In fact, the other "benign" side ended up giving me the most trouble in healing.  I was more swollen on that side, ended up with shoulder tightening up etc.  I've since been going to a physical therapist who specializes in mastectomy/reconstruction after care and also lymphadema.  She has made such a difference that I can feel after each visit.  I think if they need to remove nodes it can become more of an issue, but the SNB alone shouldn't be troublesome. 

Best wishes!!

LCISgirl

femme--they often use the terms lumpectomy and wide excisional biopsy interchangeably. They used  both terms  with me when I had the surgical excision to remove the area of LCIS found by steroetactic biopsy.  I had also read that you can't have a SNB after mastectomy, but someone said there is a way to do it afterwards. (I think it may have been Bessie--PM her and see if she has more info).

Hi, femme,

I just wanted to address your lymphedema fears, both because ANY breast surgery poses some lymphedema risk and, more importantly for you, because there are definite steps you can take to reduce your risk.

First, your career concerns about lymphedema are important, so it would be well worth your time (and possibly monetary investment if your insurance won't cover it without a diagnosis! ) to see a well-qualified lymphedema therapist as soon as possible. She will take baseline arm measurements for future reference, give you advice about prevention, and you should ask her both to teach you Manual Lymph Drainage massage to use prophylactically, and to measure you for a sleeve and glove to wear for travel, exercise or any strenuous activity or lifting.

Because there are at present no state laws mandating training standards for lymphedema therapists, you'll want to make sure any therapist you see has at least 135 hours of specifically lymphedema training beyond her/his PT or OT certification and at least a year's supervised experience treating lymphedema. (Call before you go.) Here's a website where you'll find a Therapist Locator: www.mylymphedema.com. Follow all four links to the graduate lists of four fully-certified lymphedema therapist schools. They're listed by state (or country if you're not in the U.S.), or you can submit your email and zip code and they'll send you a list of their grads near you.

Another excellent source of information on preventing lymphedema is the National Lymphedema Network web site at www.lymphnet.org. Especially helpful are their Position Papers on Risk Reduction, Air Travel, and Exercise, which you'll find linked on the right-hand side of their home page.

If you have further questions or concerns about lymphedema, the "swell" gals down on the "Lymphedema After Surgery" board would be happy to respond to your questions with their experiences.

Bottom line: if you develop lymphedema THERE IS TREATMENT AVAILABLE to help you gain and maintain control. Getting qualified help quickly can make it even easier.

Be well, all!

Binney 

Femme,

I am having a "lumpectomy" or "wide excision" on Monday for LCIS. My oncologist wants a bigger piece of the tissue to analyze to be sure that nothing more invasive is lurking in there. She explained that once the surgeon took out some tissue, a pathologist would look at it and tell him whether or not he needs to take out more and they would do that until they felt they got enough without leaving a cavity. Then they send it off in paraffin and make sure they don't see anything more ominous.



Hope you do well with your surgery. Let us know when you can!

Kimber

femme,

I finally had to throw a fit to find out exactly why I was going back into surgery, and demand that it be ASAP. No more waiting for appts and pathology to come in.



The best info you will get is from your oncologist. Surgeons are good with their hands, but....



Everyone on these boards will tell you that you have to take control of your own care and you have to listen to your gut. That is so TRUE, I have learned from experience. I see you have a breast surgeon and a plastic surgeon - do you have an oncologist? You should seek one, if not. (If I have not seen that in your posts, forgive me..) I have found that the oncologist is the one who "mans the ship". Again, good luck to you and stay strong.

Kimber

femme,

THAT IS THE GREATEST THING I HAVE EVER HEARD!! Thank you for that analogy - I love it! I shall now refer to my oncologist as the maitre' d'. Maybe if I slip her a 20, I can get a good diagnosis.....



By the way, when you said have a good calm weekend, does that involve wine and/or valium???



Just joking

Kimber

Anne,

I may have asked you this before, but how was the "lumpectomy"? I just had an excisional biopsy and I have about a 2 1/2" scar, which he is going to go through again. Were you sore, bruised, swollen afterward?

Kimber