3 biopsies with LCIS, also severe ADH and ALH, considering PBM

Some people with ADH, especially when it borders on DCIS, get a 2nd reading of their slides at a major institution to see if they give a different opinion about the diagnosis.

I am no expert about ADH or DCIS

I opted to have my slides reread.  My initial diagnosis was LCIS and features of ALH.  My 2nd opinion was LCIS and ALH.

As far as LCIS goes, many experts believe that even if you have LCIS in one breast in one tiny spot, it puts BOTH entire breasts at risk, even the parts that are 'normal'.  Its a weird condition.  Many now believe that in a SMALL number of cases, LCIS can be a nonobligate precursor to breast cancer - in other words LCIS is not destined to become bc, but in a small number of cases it may.  It also puts the rest of the breast, and the other breast at risk.  Many times LCIS is multifocal (occurs in more than one spot in the breast) and bilateral (occurs in both breasts) although this is not a uniform finding.  They know this because they used to do routine prophylactic mastectomies for LCIS before approximately the early 1990s.

As CAZ said, do your research and come to the best decision for YOU.

sunfishlee-I had very similar diagnosis and had a BPM in Nov and am very happy I did it. I also had very dense breasts and have had 5 biopsy's. I don't understand what the difference is between ALH and LCIS. One of my path reports on the same area called it LCIS and another along with my final report called it ALH. My surgeon says they are the same thing and diff path call them different things? I have had very few probs just lots of constipation from pain meds ( that has been the worst.) I am so happy it is behind me. My surgeon did a nipple sparing and skin sparing and she did a  great job. She was apprehensive at first and they all are but she spoke to a couple other surgeons and they thought it would be safe for what I have. The prob is it is a  very diff procedure and not done very often but it has the best cosmetic results. I am 44 and healthy and have good insurance as well and they gave me no probs.

My path report had both LCIS and ALH. The second opinion at another facility confirmed the dx. I had DCIS in the opposite breast in 2007. No sign of ADH.

Because there was a nodule, the surgeon was able to do surgery and get what he could out. There is undoubtedly more LCIS and ALH throughout my left breast and probably in my right, but unless there's a lesion or nodule, it won't show up on any of the current imaging methods. 

Personally, I am not ready for a mastectomy. I'm starting tamoxifen at the first of the year, and hope that it keeps the bad cells at bay.  I am on a 6-month alternating schedule of MRI and mammograms for the foreseeable future. If biopsies and lumpectomies become a yearly event, I may change my mind, but for now I'm going to try the increased screening and see what happens.

It's a tough decision, one not made lightly. Good luck.

Yes - there is not one best choice for all.  

Some people want to follow what studies suggest, but different experts have different opinions.  Then there's the emotional aspect, which is different for each one of us.

I had a thought the other day.With BPMs, one reduces the amount of breast tissue, and I've seen figures that suggest BPMs cuts nte risk to roughly 1% or so.

If this is true - that the amount of breast tissue has a bearing on one's breast cancer risk - (all other factors being equal) - then should a woman with small breasts have less risk than a person with large breasts, all other factors being equal?

This study says  past results have been equivocal (for premenopausal women), but in their study they found a higher risk of premenopausal  LEAN women with D cups vs A cups as measured at about age 18 or so...http://www.ncbi.nlm.nih.gov/pubmed/16284954

sunfishlee- I didn't do any other recon than implants. I don't have much body fat. I am 5'7" and 120-125lbs.I have had no prob with nipple necrosis. My PS was weary of this because she had a patient who's husband insisted that she leave the nipples and so she did. One of the nipples did well and the other didn't. The way my breast surgeon did it is by making an incision under my breasts or infra mammary.That is my only incision. She did a great job! She had never done one like that before. I suppose that if you have to remove the nipple and put it back on the chances of it surviving are less likely because the tissue would be short some blood supply. I was only a full size B so I was relatively small. I am sure there are sure reasons this can't be done. She is a friend of mine and did admit to me it was very difficult. If you want her name let me know and your surgeon could call her. PM me and I will give you her name and phone number. For some reason I can't start a PM. I do have some feeling and it is coming back little by little. I am almost 5 weeks post op and I have great ROM but I am still having some trouble with discomfort at night but during the day I am fine. I am very happy with the way they look they don't look like I had a mastectomy. The PS put in expanders because she wasn't sure how much skin she would have left but she got enough saline in and now I don't need any fills. I am bigger than I was, a size C/ I am very blessed and I feel guilty because some of the people on this website have been through so much!

Lilly's mom - Hi there. I saw your post, but didn't reply earlier since I was recovering from my own  PBM. Actually, I am still recovering. I had my surgery on December 16 and am still very much in the slow and easy stage. There are women here w/ similar dx that have chosen different routes. It does all come down to personal choices and personal ability to deal w/ risk. I also have LCIS and extensive ALH, dx'd originally in one breast, but found on pathology to be in both breasts (even the one w/o any indications like calcifications or MRI abnormalities). I also have very active (read that as cystic and full of calcifications) and dense breasts. And I am a "worry wart" (just ask my husband and my mother). So PBM seemed the logical solution to me. At 54 and married to a lovely man, father of three children (including one that I adopted who is special needs), I felt that my breasts were not critical for me to live my life. But that was me. In other circumstances, with the same dx, I know I could have chosen the close monitoring route. Best wishes in making your choice and keep in touch. This web site has meant the world to me the past six months! Have a Happy and Safe Holiday. - Jean

Hi Karen,

Thanks for the info about your surgery. I am so glad you are satisfied with your decision and outcome. It also seems your surgeon did something unique by placing the scar under your breast. I thought they always went across the breast.  I am glad to hear you are getting back some sensation. I am built like you, 5 ft 7 in and 135 lbs. So you make me very hopeful that this may be ok in the end. You just have to swallow hard and tough it out for a while.

 TH is Terre Haute,  in southern Indiana.  I am on the east coast now.

 My surgery is scheduled for the end of January. I'll keep in touch and let you know how it goes.

Happy Holidays.

Lee 

ChinaMom - Best wishes on your decision - whatever you decide, it will be right. It has to be your personal choice. Me, I chose the PBM, but then, I am a worry wart. I also have two adoptive children and know what you mean about needing to be there for them. Good luck and hang in there. You can't make a wrong decision - either close monitoring or a mastectomy, you are ahead of most folks! - Jean

Lilysmonm, 

I also had LCIS, ADH and ALH and a couple of minor abnormal findings when I decided to do PBM in Nov. 08.  I had the nipple sparing and skin sparing PBM.  Man I did not think my nipples were going to make it in the beginning but they look absolutely fabulous now.  I'm getting close to being done with expander fills and then I will have to wait 3 mos. before we put the regular implants in.  The PS said she will move the nipples slightly toward the middle a little more (they are a little toward the outside of the breast right now due to scar tissue) when she does the implants.  The final pathology report found extensive ALH which MD Anderson Dr.'s said they don't really know what part they play in breast cancer but other things I've read says it's the beginning of LCIS or pre LCIS.  Anyway, I'm glad I did the PBM- I don't regret doing it- don't miss my C's since that's what I'll be in the end, the scars are all inside my bathing suit line so who cares- glad my risk for breast caner is about 1% YEAH!!!!!!  My reasons for doing it is what everyone else that's done it has written before.  My prayers are with you.

Thanks for all y'alls comments.   Everyone is different with different circumstances and you have decide for yourself which is the best way to go.  Keep us posted on how you do.

Lois 

Moogiemt - There is a whold thread in the LCIS section w/ various opinions from ladies on how they approached their dx of LCIS. Your doctors seem to have given you the correct information on your risk and the various approaches to treatment. I chose PBM w/ immediate reconstruction w/ tissue expanders. But I had other issues like ropey, lumpy, bumpy very dense breasts. Seems like someone was always seening something worrisome in my radiology. I just couldn't go through life w/ the worry of constant bx. But it was definitely a very personal decision. There is no right decision - just the right decision for you. Good luck. - Jean

Moogiemt - I had my surgery on December 16. The first fews days I was in the hospital were not too comfortable, but the On-Q helped a lot. ANd narcotics took care of the rest. I got my drains out on day 8 - that was a relief - and have been getting steadily better every day since then. I am finding that week three seems to be the charm. I am feeling a lot better now. Sleeping on my back (because of the TE's) is a bit difficult - but I am coping. ANd, surprisingly, I am not emotional about losing my breasts. It is probably because I chose this route and also because I have new breasts taking shape. They are kind of wierd w/o nipples, but I had visited the picture forum before my surgery, so I was prepared for that as well. Feel free to PM me if you have specific questions. Good luck. Remember, you don't need to do anything in a hurry. LCIS is not an immediate problem. Take your time to chose your direction. Take care. - Jean

Carol,

I hadn't thought of it that way before--having the PBM done while I'm younger and able to recover (hopefully) faster. I go in to see another oncologist this Friday for another opinion on treatment. The last opinion was to start Evista, have another mammo in 6 mos, then another at 1 year with a bone scan to see how I'm doing. (I'll stop my Boniva) Then we'll reassess. I may go to the UWash Breast Center in March over Spring break to meet with someone there, also. Anyone have any experience there? Sometimes I almost wish I didn't know I had LCIS--seems there is really so little I can do, and so many opinions as to what to do... My Mother, 78, was diagnosed last year with invasive ductal with no lymph involvement...I wonder if she had LCIS all these years?

Moogiemt -

I'm in Seattle, but didn't go to UW. I've had various cousins from MT head out here for cancer treatments at Virginia Mason. I've been treated at Northwest Hosp.

UW is top notch and they are part of Seattle Cancer Care Alliance.

My mom had IDC, Stage 1, 18+ years ago. She had a mastectomy, chemo, and no recon. She hasn't had any issues since.  What I did learn from her is with any surgery - and especially with anything affecting the lymph nodes - is to watch for lymphedema. That has been her only lingering problem. Back then they didn't really get it, and she's paid the price. Knowing about it before you have even a SNB with mastectomy will help keep it at bay or lessen symptoms.

Good luck and take care.