Prophylactic Mastectomy
Due to a very strong family history of breast cancer, I am undergoing a prophylactic mastectomy in a few months. I would like to consider a nipple sparing procedure but am wondering the following... Does a nipple sparing procedure greatly reduce the effectiveness of the surgery? I mean, what is the difference in future breast cancer risk if you have a nipple sparing surgery as compared to the full procedure? I am 100% sure that I have made the right decision to have the surgery, but I hate to have my nipples removed if I don't have to. I want to preserve my health, but I want to look as normal as possible. I am amazed at the success of the nipple reconstruction and tattooing procedures, and I know I will be pleased if I choose to go this route. I'm just a little torn on the difference/risk between the two options. I would appreciate any feedback, links, suggestions, advice, experiences, etc. Many many thanks.
Comments
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I wanted a nipple sparing done too, but couldn't get anyone in my area who had experience doing them.. My primary care phy. asked me to stay in town (he wanted to help me if I got in trouble so that was really great) but that is a mistake I will never make again..
I did a prophylactic on the right side for safety ( and symetry) and I believe now 1 1/2 years later that if I had pursued my nipple sparing, fully cohesive implant vision I would be much happier.. The doc didn't do what he said he would and I was asleep when he changed our "plan"..
Make sure you get what you want ever if you have to travel! I no longer know the stats on nipple sparing and I don't think there was much support because they are very new, they cut the nipple and areola off (I should say open it) and scrap the back of them before putting them back in place.. so that they are no long "connected" to the ducts (dropping potential recurrance).. That was two years ago when I had the mx and I have had more problems than I imagined accepting this change in my life. Please, if at all possible see a psychologist/therapist/shrink before making the leap.. I know you know what you want to do but I wouldn't like you to feel as I do after.. so long out and still not settled with the decision.. So good luck and I hope you are able to secure a great ps who can do everything you want and need!!! Best and please let us know how it all goes!!!
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My sister has had skin and nipple sparing mastectomy and reconstruct and I am scheduling my surgery today hoping to have it done in the next couple months! Our sister, aunt and several cousins have had bc, and I have had several lumpectomy. My sister decided on a plastic surgeon in San Diego after extensive research on doctors most qualified to do this type of surgery. She is in the medical field herself, in neuroscience. She had a beautiful job. The incisions are under the breasts and after one year you cannot see the scars. She is now feeling sensation in her nipples as well. I have read that by saving the nipple your risk is increased by 2%. We figure it is pretty easy to feel any changes on the outside so opted to keep the nipple. This surgeon has extensive experience in the area of bc and knows what he is doing, removing as much tissue as he possibly can. I researched many doctors in Canada and have decided to go to my sisters doc in San Diego, as I could not find anyone here willing to do what I wanted. My GP is 100% behind me and will do all the followup saline injections into the expanders. When fully expanded I will go back to San Diego for the final implant.
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Catchturn - I would stay that you should discuss it w/ your doctors. My doctors did not feel it was worth the extra risk, but there are plenty of doctors that will do this relatively new procedure. It was not that critical to me. I preferred to stay w/ doctors and hospitals I was comfortable w/ and I couldn't see increasing my risk even a little bit, since I was doing my BMX prophylactically. On the other side, the final results are great if you do go w/ nipple sparing. And, if it is important to you, then you should find a doctor and hospital that does that procedure.
As an aside, I should note that I had my surgery six weeks ago and have not had a moment of doubt or regret! Do your research, then move forward and don't second guess yourself!
Best wishes. - Jean
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First, thank you so much to those of you who have so generously taken the time to answer my questions. Really...it is touching to know that there are others who care. Since posting my questions has already been so helpful, I am adding one question. Does anyone know how I might find a surgeon in Dallas or even Texas who performs the nipple areola-sparing mastectomy? Many thanks.
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Oh.. there is a great ps in Dallas William Adams (he was considered one of the best in TX for years running), but you have to find the doc to do the nipple sparing first.. I almost travelled to Dr. Adams because he was on the approved list of fully cohesives trial doc's and he would have done my transfer but he also was kind enough to let me know they (fully cohesives) would be on the market very soon so that I wouldn't have to travel to get them.. But Dallas is known for it's great cancer doc's I'd be willing to bet there are many there.
On the subject of being "new" (nipple sparing) yes it is realitily new but it is being done now in every large city.. here's the thing of it all. When my father had his mastectomy (yes my dad) they use to take all the skin to avoid the potential transfer of cancer - now, as you know they can leave the skin studies have been shown that it is OK to do that.. well the studies aren't as many yet for nipple sparing, but there are there and it's looking like if you get a talented doc you can keep the thing that helps your mind adjust best to the new "you". It WAS important to me and when I found a do to do the surgery I was totally disappointed when her elders convinced her not to. My daughter said it was a terribly loss, not just to me but to society. After thinking about it it most certainly is. New doc's (bs) have been taught that it can be done and how to do it and yet the older doc's still see it as a problem - well that bs that was young and willing to try it on me will probably NEVER try it now.. and there in is the loss.. If we want these services and it is shown to be safe (and there are now studies - not many but there there) the medical community needs to allow them.. and that didn't happen here in our smaller town.
But Dallas, you should be able to find someone there - so good luck and I hope you get to look at your own nipple areola for the rest of your life and that that life is long and happy!!!! Best
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I had a BC diagnosis but chose to also do the other side prophylactically nipple sparing, so now I have one side with the real nipple and one with the reconstructed nipple. (My tumor was too near the nipple to save that side as well.) I had a true one step surgery with silicone implants in New York. Went to sleep a small A, woke up a small C, no expanders or fills.
And the results? Let's put it this way, the prophylactic side is so good, my oncologist did not even realize I had had a mastectomy on that side!! And the other side is not too shabby either, but when you have it to compare with the "real" side you can tell the difference. (If they were both nipple recons, though, it would be less noticeable.)
There is a great web site for high risk women www.facingourrisk.org. They have lots of information on nipple sparing and doctors who do the surgery all around the country. If you get on the forum there, you will get links to lots of statistics and probably some names of surgeons from women who have used them.
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I had a prophylactic mastectomy October 28, 2008. The plan was that the surgeon would take off my nipples. She had gone to a seminar/meeting the weekend before my surgery and the morning of she announced she was going to save my nipples. I was very happy at the time, and now even more happy to have them. I still have my expanders in, so I still feel like Dolly Parton, but I must say, they look fairly natural and real with my own nipples. I have my exchange surgery at the end of March and really believe they will look good. My sister had a mastectomy two months prior to mine and had her nipples removed, and I must say mine look much more real. Her incision is about 4 inches across the middle of the breast. My incision is about 2 inches on the side of the nipple, and then she went under the nipple line which is now really not visible, so looking strait at myself in the mirror, I don't even see the incisions. The doctor explained to me that they basically "skin" the nipple and get off all the breast tissue, anything left would be a minimal increased risk. If you find a doctor who can do the procedure, I'd go for it.
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Carolm, that is great to hear!!! That a surgeon is willing and open to trying to learn a new technique, you were fortunate!!! I believe there is also a way for doc's to take an existing nipple and "share" it, not sure how that works and it probably works well if your nipple areola is large but mabe you will be one of the first to have that too!!! Congrat! So glad that the pool of surgeons who will do this is growing!!!
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Catchturn, I totally understand what you're going through!! I too am scheduled for prophylactic bilateral in April, and am still trying to choose between skin-sparing and nipple-sparing. I consulted at Mayo Rochester, Evanston Northwestern, Froedtert in Milwaukee, and NOLA. All agreed that sparing the nipple, especially when there isn't a current (or nearby) cancer, is a safe procedure from a risk-reduction perspective. Three of them thought that any increased risk with leaving the nipple was unmeasurable, Mayo quoted a 1-3% increased risk but only when I really pressed them for a number.
One procedure I've found some information on just this weekend online is "areola-sparing" where the surgeon takes just the nipple itself - therefore removing the tiny end-ducts that may congregate there - but leaves the colored areola complex which is much less likely to have cancer potential. Does anyone else know anything about this or have any experience with this? In the info I read, the plastic surgeon then reconstructed a nipple from the areola thus leaving your natural color. I just emailed the nurse at NOLA to ask what they think of this procedure and if they do it.
Like you I think the photos of reconstructed nipples look great, although the tatooing seems to really differ from place to place. If I can walk away from this surgery looking as "as-before" as possible it would be great (in case one of our 4 boys walks in on me...!), but I'm torn about going through all this to decrease risk but then not going all the way. The surgeons have reassured me that they invert and core-out the nipple such that there is miniscule risk, if any, remaining. Just that I'd kick myself if I got a future cancer there.
I'd love to hear what you decide!
JStar
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Ladies - It sounds like you are both doing your homework and working w/ great doctors. I don't think you can lose either way.Best wishes for a wonderful result! - Jean
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Thanks Jean. How are you healing up?! JStar
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JStar--You said you are trying to decide on nipple-sparing. As it commented earlier, I had the nipple-sparing done and my sister did not. My surgery was preventative due to BRCA1+, my sister's was after her second round of BC (she had a lumpectomy the first time). There is a huge difference on the how real my breast looks compared to my sisters. I still have to go through exchange, and my sister has already had it, but I don't have the 4-5" scar across the middle of my breast like my sister does. I can't even see my incision unless I turn sideways. I feel like my saline breasts look pretty good--even though they're rock hard right now! One of my nipples is actually responding somewhat, which I really didn't expect. I think once I have the exchange, my breasts will look better than they did before I had surgery. I think you'd be happy to keep your nipples (by the way, so is my husband!)
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Jstar - I have had a relatively easy time w/ my healing. After about four weeks I started to feel like myself again, at least in many ways. I still have to get myself to take it easier than I am used to. And I haven't returned to work yet, so I am not stressed that much. But I have no complaints. I would agree w/ Carol's analysis - if you can keep your nipples, then your results will be that much closer to the real you. My surgeons and oncologists were not comfortable w/ the procedure, possibly because I don't live in a major metro area. Either way, I didn't keep mine, and I am okay w/ that, but the results are better when you can. Best wishes! - Jean
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Thanks Carol and Jean. I will keep weighing this over. My sister had a full radical mastectomy so had nipple reconstruction and tatooing done, and it looks great even with the large scar - which has now faded to hardly there. Her situation was different than mine, though, due to cancer diagnosis. I'm not overly afraid of the nipple being taken, just that like you said it would probably result in the better aesthetic outcome. Thanks for sharing your thoughts, yet again I'm struck by the wonderful women who give so much of themselves to each other on this site. It's truly amazing and absolutely a God-send.
I'm so glad your healing has gone easily, Jean, and that you're feeling more like you again! Enjoy this time of being off work and let yourself get back to 100%.
JStar
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Nipple is part of the breast, therefore keeping them increases the risk of breast cancer.
I am 38 and BRCA-1 positive. My mother died from a second breast cancer at 64, first one at 51. My aunt died at 42 of breast cancer another one at 38 from lung cancer, an uncle at 51 from colon cancer.
I had my ovaries removed last March and I had bilateral mastectomy with reconctruction last May though I have no cancer. My chances were too high (90% breast cancer and 65% ovarian cancer). I don't regret anything though it was a hard road to take.
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Daudine--You say you had a hysterectomy at age 38? I just had a preventative one in October for BRCA1+ and a preventative mastectomy. I'm wondering if you've had hot flashes and how they're going? I am having anywhere from 2-12 per day, and although they're tolerable, they are annoying. It seems that when I get a little warm it brings them on. I'm concerned what summer will bring for me and may have to resort to lose dose hormones. Any thoughts?
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Carol - I just went through heavy duty hot flashes due to menopause. Two years of needing to towel dry about 10 x per day! There are a number of things the doctors can try before you have to resort to hormones (such as antidepressants). I did do 9 months of hormones and then had LCIS dx'd, so probably that wasn't a good idea for me. I have found that totally under dressing for the temperature helps a little. Mostly I had to be literally freezing in order to not have a hot flash.
Best wishes! - Jean
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carol-- if you're BRCA positive even low dose HRT could be risky. Even with the breast and ovarian tissue removed, you can still get bc or ovca (your risk is greatly reduced, but it is not possible to remove 100% of the tissue). I had to have my ovaries removed (due to rupture) and had to go thru immediate surgical menopause without any hormones. No fun, but doable. Told by all my docs no HRT due to LCIS and family history of bc.
Anne
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Hello carolm,
Hotflashes and nights sweats...aren't they terrible!!! I started the hotflashes 8 days after surgery. I thought I was just weak from the surgery...big mistake! They were there to stay.
Some days, I have 4-5 hotflashes a day but somedays I have close to one every 20 minutes and night sweats are every night. I take Menoconfort (herbal medicine for menopause without hormones) but I don't see the difference but I keep on having them because they say it is good for keeping the skin looking young.
I haven't noticed a difference between summer and winter. Of course, in winter time it is easier to get cooler. Last summer (June, July and August) I was in recovery from my bilateral mastectomy and I have to say that I didn't have one single hotflash for a month. I remember noticing and telling myself that my body had enough stress with the breast healing.
It is very annoying but I won't ask for any medicine. I can tolerate them.
The worst for me is the lost of libido....thats saddens me and my husband.
Daudine
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My sister sent me to this forum, knowing it'd be an encouragement to me as I prepare for a PM with nipple-sparing (skin as well) surgery on March 6th. When my sister was diagnosed last fall, and then proceeded to opt for a bilateral mastectomy rather than lumpectomy it was no surprise. We'd considered a PM for the last 20 years, due to our extensive family hx (maternal grandmother and her four daughters...all BRCA neg, but ALL estrogen receptive). A few of you knew the average percentage risk with keeping the nipples, and there is also the risk of necrosis. My sister looks so good with just the expanders (implants in April) and NO nipples that I'd be OK if mine fail...they're not so pretty anyways. The intended incision for me will be a modified "C" over the nipple/areola with the incision then slanting up towards the armpit. The reason for it being over the nipple is because my nipples need a "boost', therefore they need to hike them up, to put it bluntly.
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Deeds - Best wishes for your upcoming surgery. I am sorry to welcome you to our group, but you did find a great place for suggestions and support. I hope all goes wonderfully and that you get to keep your nipples. You will find a March surgery thread that will list your surgery and provide you w/ others that are going through the same thing. Are you getting reconstruction? If so, it sounds like you are getting expanders. If so, then we have another thread called Exchange City where we are following one another before and after our exchanges. You are most welcome to join us there as well. As your sister probably already told you, a BM is not as difficult as it seems like it will be. Especially when it is performed prophylactically. At least you (we) have time to plan and prepare. Best wishes and keep in touch to let us know how things go. - Jean
Feel free to PM me if you have any specific questions.
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Hi all
I am BRCA1+ 45 yrs old...both mother and maternal Gm had BC. I had a bilateral prophylactic mastectomy with reconstruction, Did not keep my nipples and also had my ovaries and tubes removed as well. Never looked back....only forward. The way I look at it....If someone told you the plane you were going to get on had a 90% chance of crashing....would you get on it???? Maybe if Sully was the pilot...but that's one plane.
I also take prempro and have not any any side effects of surgical menopause. My SO is greatly appreciative of that...as am I.
Hugs to all...we're all different.
Kathie
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Jean!!! "Deeds" is my sister!! I finally got her to join BC.org! Hooray! I will be going to stay with her next week when she has her surgery!!
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Thanks for the welcome and advice, Jean! Navigating through all these pages will hopefully keep me sharp, informed and at times, laughing. My sister is a research queen and seems to know just about everything (not kidding), so I'm in good hands! And....yes to reconstruction. My hopes are to finish out slightly smaller than I am now (a "C") since I'm usually trying to minimize my breast size.
What a tremendously positive group of gals are on this forum - a huge blessing for sure!
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My oh my, you two must have a beautiful mother! You both look like models! I am so tickled to know both of you. Best wishes for your surgery, you are in great hands if your sister will be there. My close friend is with her sister right now as she recovers from her surgery. She had it yesterday. Take care and best wishes. My top two packing suggestions - jammie bottoms or shorts so that you can have some modesty, and crocks or something to put over those hospital socks so that you can keep the bed clean when you climb back in. Best wishes! - Jean
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Great suggestions, Jean! Hadn't thought of the jammie bottoms. With my red/black flannels and clogs I'll look something like Brunhilda. Not a feminine start, but more comfy.
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Hi,
I'm a 31 years old man diagnosed with BC last november. My mother died of BC at age 33, my aunt had it 2 times and still alive and my grand mother died of BC at age 64.
Since I'm BRCA 2, I'm planning a BM at the end of May. However, since I'm a man, my risks of local recurrence is a maximum 15%. So, I'm having a hard time deciding about keeping my nipples or not. As a man, if I lose my nipples, it will prevent me to do any summer/pool activities. I'm concerned and still thinking about what will be the best option for me. Any advice?
Christian
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Hi all:
Anyone have any info on after hysterectomy what they do for your bones? Heart? I am already on 1000 mg. calcium/omega 3s (1200 mg.) and vitamin D. I am reading that this should be D3 instead of just D and also that I should have magnesium.
Chris, good for you for being proactive! A good PS can made you new nipples and then they tattoo them for color (also the aureolas). They use some of your inner thigh or groin skin. They will look completely natural...PM Tim Tam and ask for the picture forum to see photos.
Good luck to you!!! Or you could go without, if you wish. Most of us recon ladies do get "fipples" but they don't' have any sensation. It's kind of the cherry on top.
Since you swim, you couldn't do that immediately post surgical, so perhaps schedule a consult with a good PS to see your options.
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p.s. Hi Kathie! Thank you for all your good wishes this past week. I hope you are well.
What is prempro? I can't take anything at all, not even holistic stuff, as i was so heavily estrogen++++.
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Chris - Some surgeons do nipple sparing. Otherwise I agree w/ Annie, they can reconstruct fipples. Best wishes for great results!!!
Annie - I had low vita D as measured by blood test. I take oral vita D, 1000 U per day and my levels are fine now. I also take actonel or fosomax once a week for bone density. Hope this helps.
Take care. - Jean
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