New, with questions

multitasker

I was just diagnosed with LCIS following an excision.  I have been doing research, and I'm currently leaning toward PBM.  I don't think I can live with this fear.  I've had 3 procedures in the past 5 years, and that was frightening.  Now, with the LCIS diagnosis, I'll be panicked each time.  A lot of these decisions are about knowing oneself--and I sort of already know what I want to do.  I need some information about options, risks.  I need to figure out what type of mastectomy to have, where to do it, etc.

 Has anyone has the skin and nipple/areola sparing procedure w/LCIS?  Are there any articles on that?  I'm wondering if that is a silly idea, since you leave more tissue.  For some reason, I don't mind the idea of losing my breasts and I'll muddle thru the surgery, but the idea of losing my nipples is upsetting.  I know you lose sensation in all but a few cases, but still. . . . for some reason, it feels like less of a loss.  I also heard that some women keep their areolas but not the nipple.  Why? 

If you have your nipples removed, how do the reconstructed nipples and areolas look? 

If I have a PBM, should I still consider Tamoxifen?  I'm 43, premenapause.  My doctor has no definitive recommendations--everything is personal. 

Thanks so much!   I'm so pleased to have found this website!

multitasker

I was just diagnosed with LCIS following an excision.  I have been doing research, and I'm currently leaning toward PBM.  I don't think I can live with this fear.  I've had 3 procedures in the past 5 years, and that was frightening.  Now, with the LCIS diagnosis, I'll be panicked each time.  A lot of these decisions are about knowing oneself--and I sort of already know what I want to do.  I need some information about options, risks.  I need to figure out what type of mastectomy to have, where to do it, etc.

 Has anyone has the skin and nipple/areola sparing procedure w/LCIS?  Are there any articles on that?  I'm wondering if that is a silly idea, since you leave more tissue.  For some reason, I don't mind the idea of losing my breasts and I'll muddle thru the surgery, but the idea of losing my nipples is upsetting.  I know you lose sensation in all but a few cases, but still. . . . for some reason, it feels like less of a loss.  I also heard that some women keep their areolas but not the nipple.  Why? 

If you have your nipples removed, how do the reconstructed nipples and areolas look? 

If I have a PBM, should I still consider Tamoxifen?  I'm 43, premenapause.  My doctor has no definitive recommendations--everything is personal. 

Thanks so much!   I'm so pleased to have found this website

Minnesota

http://www.breastcenter.com/procedures/nipplesparing.php

Hi multitasker (I love your name!),

I've been diagnosed with LCIS, as well as a subcategory of LCIS (PLCIS). I had a mastectomy and skin-sparing reconstruction 3 years ago on one side (PLCIS is treated like DCIS) and am just about ready to schedule prophylactic surgery on the other side, so I know how difficult this whole issue is and how hard it is to make decisions (I spend a lot of time on the PLCIS thread and those of us there have had a heck of a time trying to weigh all the issues).

Pasted above is a pretty good summary of the literature on nipple-sparing mastectomies. At the time I had my skin-sparing, nipple-sparing just was not being done, and skin-sparing was also not that common. Times are different now. The main thing is having a breast surgeon and reconstructive surgeon who are up on these techniques.You will find that most are still doing it the old way, but you shouldn't feel limited by what is available just in your area.

I traveled to New Orleans from Minnesota to have my reconstruction, and that is where I'll return when I have the second side done. Sparing the skin and nipple give the absolute best cosmetic results, in the hands of experienced surgeons. So that is not a silly idea, at all! I totally know what you mean about the thought of losing a nipple. I wish the procedure had been available for me first time around, altho my PLCIS was very close to the nipple, I believe, and in those cases, sparing the nipple is not always an option.

Another possibility is sparing the areola around the nipple, as you noted. That would be done in cases such as mine was, or if you just don't want any risk, no matter how minimal, of cancer occuring in the residual nipple itself (where the ducts are). You don't have to be afraid of the skin harboring any cancer. The nipple is the part that is a little dicier - but as that article will tell you, as long as it is cored adequately, there should be minimal risk. Also, if any cancer were to occur there, it would be readily visible and backed up by fatty non-breast tissue (assuming you use your own fat for recon).

Reconstructed nipples can look pretty darned good, tho (said my one reconstructed nipple!). The main difference is that the feel is softer and they need to be colored (tattooing - I hate the way that sounds!).

I will not be continuing on tamoxifen after the next surgery, as it has caused me gynecological problems - rare, but unfortunately I had them. My understanding is that it's main usefulness is prevention of cancer in the other breast, unless you have a cancer that has already entered the nodes, then it may provide protection for other parts of your body. Mine was node negative, and I hope will also be so on the other side!

Please feel free to follow up with any other questions! Also, there is another good site where there is a top breast recon surgeon who will answer any individual questions you may have. Good luck in your decisions! http://members.boardhost.com/plastic/index-1.html

Stonebrook108

Multitasker,

 I'm sending you a private message.

multitasker

Thanks Minnesota--so nice to get a response!  Very helpful! 

Stonebrook--how do I get a private message?

multitasker

OK--I figured it out.

whippetmom

Quite a number of women on these forums have had a skin sparing/nipple and areola sparing mastectomy or mastectomies.  My sister had skin/nipple sparing prophylactic bilateral mastectomies last year and several on the Exchange City thread have had this type of sparing procedure as well.  Here is an active thread which might be of interest:

http://community.breastcancer.org/forum/44/topic/745796?page=1

Hope you find some answers!!!

whippetmom

Oops.  Let's try this link:

http://community.breastcancer.org/forum/44/topic/745796?page=4#post_1679625

I am having a difficult time getting this to link correctly...sorry....

macksix6

Multitasker

Take a deep breath and relax. LCIS is a marker for increased risk of developing cancer, it is not an invasive cancer. I would try to find an oncologist who has experience with LCIS to help you with your decision for a PBM. You have time to make a decision for your treatment and research procedures and Drs

I had a bilateral nipple sparing (actually areola sparing) stacked diep reconstruction. I wanted the nipples removed since they contain ducts that could have cancer cells, where as the areola is pigmented skin. I am thrilled with my results. They are very natural and feel pretty much like my old breasts. If you have any questions I would be happy to answer them.

Stephanie

multitasker

Thanks Whippetmom!  Helpful.  I noticed that you got silicone implants.  Why was that your first choice?

Stephanie, did they reconstruct nipples, or did you just leave the areolas w/out nipples?  What does "stacked" diep mean? 

 Thanks!

macksix6

Multitasker they left the areolas w/out the nipples so it looks very natural. I go back in Mar for my stage 2 and I may decided to get nipples then.

I had a bilateral mastectomy and didn't have enough tummy fat for a diep so my Dr took my tummy flap, split it in half and stacked it with a hip flap from each of my hips. So I ended up having 4 flaps taken. I can't tell you how pleased I am with the results and how natural they look and feel.

Ohiogirl19652

Can you tell me more about a Hip flap.  My PS just screwed up my stage 2 diep and removed way too much.  I asked about supplement with a hip flap and he said it could not be done.  I have lot of hip.  Thanks, Ohiogirl

macksix6

Ohiogirl I am so sorry that your surgery did not go well. As I mentioned in the above post I had a stacked diep/lumbar  where they add the diep flap to the gap/hip flap, so it can be done. Your Dr like many others that are not able to do this procedure, say it can't be done but it most definetly can, but only by skilled microsurgeons.

After diep surgery there is quite a bit of tummy tightness that will ease with time. It is important to stand tall and stretch out the area. Hopefully with time you will find that the area will soften up and relax. Why do you feel your Dr took out too much?