40 and diagnosed with ADH ALH and LCIS

I am sorry for your diagnosis.

Welcome to the place (bc.org) that has the most LCIS women I have found. Period.

You may want to mosey down to the LCIS forum, because the LCIS is the most advanced of your 3 diagnoses (ADH, ALH and LCIS.) I have DH (not atypical ductal hypertrophy - its the atypical that puts you at higher risk), ALH and LCIS. My oncologist gave me a '30-40%' lifetime chance of breast cancer.

Some people with ADH get a 2nd opinion on the pathology because it can be difficult to diagnose ADH vs DCIS and they often treat DCIS differently than ADH. Different pathologists can disagree on the diagnosis.

I was 51 at my diagnosis of LCIS. I opted for tamoxifen because at my initial consultation with my breast surgeon her initial words to me were "If you want bilateral mastectomies I am going to sit down in a chair." After my excision, she said she was not interested in doing any further surgery on me. Even if my oncologist was open to the question of mastectomies, I would have to have a breast surgeon or general surgeon do them, and there weren't any in my network, and I'd have to pay something like 20% out of pocket costs.

I chose 5 years of tamoxifen. My only side effects were 'warm flashes' and I had 3 endometrial biopsies for polyps. All were benign. I also had an endometrial polyp before I started tamoxifen.

I started tamoxifen 6 months after my LCIS diagnosis, and continued for 5 years. I had 2 more breast biopsies 1 year after my LCIS diagnosis, and haven't had any breast issues since.

Different people have different experiences with tamoxifen. For some, they have absolutely zero side effects. For others, they just can't stand it and it affects their quality of life. Side effects don't happen with everyone, as is the case with almost all drugs.

So far, I've been happy with my choice. If I have further breast problems, depending on my medical status with other conditions, that may change.

Please do know that when your doc gives you 'X%' chance of having breast cancer in your lifetime, that is a really, really rough figure, particularly for you as an individual. Unless you have a significant family history (in other words usually multiple first/ first and 2nd degree relatives with breast or ovarian cancer), breast cancer prediction for individuals (i.e. answering the question 'What is my chance of getting breast cancer in my lifetime?') is in its infancy. In this study, they looked at how accurate the Gail model is for women in Florence, Italy. The modified Gail model was really accurate in predicting how many women in that city would get breast cancer,but it was 'better than the toss of a coin, but not by much' in predicting which individuals in that city would get breast cancer. This was true even if you threw in other risk factors that are not in the Gail model, such as breast density. If the Gail model, our most advanced model except perhaps for women with a significant family history, is that awful at predicting individual risk, just think about how great our prediction is for someone with LCIS. (LCIS immediately excludes you from the Gail model.)

http://jnci.oxfordjournals.org/content/98/23/1673.full.pdf

I am *not* trying to push one choice or another. I just would encourage you to examine every option, and know the risks and benefits of each option. Research each option thoroughly. (You can look at the experiences of people in the Hormonal forum and the surgery/ +/- reconstruction forums.) Know that most people don't post unless they have problems with an option.

If you have had a breast excision (to exclude the presence of 'something worse' in the vicinity) then there is no rush to make your decision. A breast excision after a core or needle biopsy shows LCIS is not to remove the ALH/ADH/LCIS (because they can't be certain it is there without looking at it under a microscope) but to see if there is something worse (i.e. DCIS/invasive breast cancer) in the area. Some papers have suggested that not everyone with a core biopsy of LCIS needs a breast excision, if the lesion on imaging exactly matched the biopsy.

Roughly 20% of women who have LCIS on biopsy will have 'something worse' (i.e. invasive breast cancer or DCIS) on breast excision.

I totally respect everyone's decision how to handle this. Minimal usual surveillance with LCIS is annual mammograms, plus clinical breast exam every 6 months. (That's what I get and what the NCCN recommends; many get more screening than that.) I am sure that some LCIS women are afraid of annual mammograms (from radiation) and opt to have less screening than that. I don't know of any medical studies that recommend no followup or screening for LCIS, but I can certainly respect everyone's choice, from no further contact with the medical profession to surveillance to anti-hormonals to preventative bilateral mastectomies.

I would just like everyone to understand how much/little we know about LCIS, and the risks and benefits of whatever treatment choice they make. Since each option has some risks and some benefits, its a very individual choice because only you know how afraid you are of each risk and we are all different.

Sorry you are going through this. There is no right or wrong answer for how someone treats LCIS...basically it needs to be right for you. At 45 I had the same story as you...LCIS, ADH, ALH and I also have dense breasts. I did mammograms/ultrasounds for the first three years. After a new study came out about LCIS I added MRi's so I was being screened twice a year. In August the MRI showed something that thankfully turned out to just be a fibroadenoma. That incident got me to where I am now...prophylactic mastectomy scheduled for later this month. I didn't want the tamoxifen due to the side effects and I have a bad family heart history. The screening was causing way to much anxiety for me. As the years went on it was causing anxiety for my family as well. The good news is you have time on your side. Best of luck.

I had ALH and ADH, and chose a PBM. I was 51 and had a 50% risk. I knew my breasts were very hard to image and that seeing anything in them would be very difficult.

One of the interesting things I have learned on this board (and please verify this) is that using Tamoxifen reduces your breast density. I thought that was an awesome thing.

Best of luck with whatever you decide.

I would feel very upset too! You would have liked to at least have the option of different surveillance/treatment. I think choice and autonomy is important! If you have something you did not choose, its even more important to have autonomy!

hlbrown I am really sorry your doctor did not inform you as they should have during your reduction!! What is super is that you proactively got your screening and nothing invasive is found.

Since you have prior breast surgery, if I were you I would quiz the radiologist about how "readable" your breasts are now. Sometimes there is a lot of scar tissue that could hide something. This information might also be a factor in your plan.

Excellent question about the node removal. Just realize that there is a small risk of lymphedema with sentinel node removal (usually it's one to three nodes). It has come to light on these boards that some people who have mx for DCIS have been able to get the sentinal nodes marked but not removed. If invasive bc is found on the pathology, they are able to go back and retrieve those nodes. Hopefully, someone will comment on this with regard to LCIS.

Best of luck to you.

So I have been reading this forum for the past month and have never posted as I was waiting for biopsies, MRI results so I would have a better idea of what was going on with me.  Now I have these results and it still seems like such a mystery.  Just diagnoses with PLCIS and ADH, ER+, PR+.  Can anyone tell me what they have experienced as far as treatment for this?  The surgeon seems like bilateral mastectomy may be my best choice but is deferring to the Oncologist whom I will see on the 27th.  I don't want to jump to surgery, but this rollercoaster ride sucks!  Would love to hear from anyone with PLCIS.  Thank you.