Need your help! Atypical lobular hyperplasia

I have both LCIS and ALH, which was found on a core biopsy. (LCIS is normally regarded as higher risk than ALH, roughly almost twice the risk. Histologically, LCIS is a more 'extreme' case of ALH; some places group LCIS and ALH together and call the group 'lobular neoplasia'. This is partly because it is sometimes hard to draw the line between ALH and LCIS because its a continuum.) I had a subsequent excision of the area, which removed about 2 tablespoonfuls of tissue, and showed nothing worse than what I already have. I have a weak family history, with several aunts and a grandmother on the other side of the family having postmenopausal breast cancer. My breast surgeon refused to do any further breast surgery on me. I was given a lifetime risk of breast cancer of about 30-40%, though that is a very soft figure (in other words, they don't know that number well at all.)

It took a few months for the swelling and bruising to go away. After about year 2, I have to really, really search to find the faint pink scar, which is less than 1 inch long. (I have a B cup.) I had every 3-6 month screenings for the first 2 years or so (because I had 2 additional breast biopsies, and at my place after a biopsy they do more imaging 3-6 months after each biopsy.) I haven't had any more breast biopsies or imaging call backs after year 2. After about year 3, I'm down to twice-a-year clinical exams and yearly mammograms. (That's what the NCCN recommends for LCIS.) I took 5 years of tamoxifen. Last year my oncologist said she doesn't want to see me anymore.

Most LCIS is multifocal (meaning it occurs in multiple spots in one breast) and is often bilateral (meaning it occurs in both breasts.) They know this because before about 1990, they used to routinely treat LCIS with prophylactic bilateral mastectomies, and they could look at the mastectomy specimens. So, even though they removed my one spot of LCIS and a spot of ALH, it is highly likely that I have other spots of ALH and LCIS in my breasts.

We don't know what causes ALH or LCIS, or how it confers increased breast cancer risk. But just because you had 3 spots of ALH does not necessarily mean you are at higher risk than a person who only had 1 known spot of ALH. I probably have 3 spots of ALH and/or LCIS, but the only way they could tell is if they biopsied all of both breasts, which essentially means a mastectomy.

I took tamoxifen for 5 years. It really wasn't bad for me. I had benign endometrial polyps every 18 months while on tamoxifen, but I also had benign endometrial polyps before I took tamoxifen. At first I had some mild 'warm' flashes, but I was peri-menopausal anyway. Tamoxifen experiences differ; some have no adverse effects whatsoever, and some have horrible adverse effects. If you have little to no adverse effects on a medication, you are much less likely to post about them. So you can't take the number of posts on this board and say they represent the population of people who take tamoxifen.

So, depending on your particular risk factors, you may not need to be screened with imaging every 6 months for the rest of your life.

In the study cited by the moderators above, roughly 16% of the study group (both ALH and ADH) ended up getting invasive breast cancer. Yes, since this study covered women diagnosed from 1967-2001, the 16% is probably an slight underestimation of the risk, since it is likely that many of the women diagnosed in the latter portion of this period are still alive, so they didn't measure their lifetime risk. (The average age to diagnose LCIS is in one's 40s or 50s.) But still, it gives you an idea. Remember, the lifetime risk for 'average, run-of-the-mill' women in the USA to get breast cancer is about 13%.

Remember, most women who get invasive breast cancer will not die of breast cancer, but will die of something else. Of course, no one wants to get breast cancer. But depending on your other risk factors (mainly family history of breast/ovarian cancer, particularly pre-menopausal in 1st degree or 2nd degree relatives), you may have a lower risk than you think.

Shelley I won't worry too much about side effects. If the side effects bother you can always stop the medicine take a break or try a different drug. I am currently taking a break from exemestane. The ringing in my right ear has been driving me crazy it is getting better.

Shelley, I was diagnosed with ALH too. Over the past year I had two biopsies which both showed ALH and one showed ADH. My breast surgeon recommended PBM. I got a second opinion who recommended the same. I lost my mother to BC when she was 56, I am 53. So I went ahead with the surgery last September. Surgeon said both breasts were full of ALH. I got tissue expanders and I haven't had my exchange surgery yet. It's not easy but my decision will certainly take some of the worry away.

Good Luck!

here is the complete article

http://cancerpreventionresearch.aacrjournals.org/content/7/2/211.full

Hi Ballet12!

did you take any preventative meds like tamoxifen?

for me 7 years ago, no excision, no meds.

Ballet, I am making this a public post so others can read.

i would love to chat with you in private at some point.

I did MRI for 5 years. Now I do this.......(twice so far).

This year I will add ultrasound.

http://www.radiologytoday.net/archive/rt0212p34.sh...

treetoo--thank-you for posting these articles. Having LCIS ( a step further along the bc spectrum and double the risk / severity of ADH /ALH), I like to keep as up to date as possible with the research. It makes me glad I am continuing with my high risk surveillance of alternating mammos and MRIs every 6 months, and also that I took tamoxifen for 5 years (article says it help to reduce risk of invasive bc by 75%, which is even better than the 45-50% that is often quoted in articles) and then evista. ( I have been taking it on and off for about 5 years; am on a break right now, trying to find another oncologist as mine left the practice and then will no longer take my insurance!).

Anne

Hi shelly1974 I am 49 and going through the same thing.I just want to send a hug because their is no peace of mind with this alh.And I don't think a masctomy is too radical peace of mind does a wonderful thing for your body.

...and ADH was present as well

I totally understand your concern. I have just been diagnosed with ALH in one breast and from reading treatments shown here (I have appointment with surgeon next week) and since I had problems with my liver in the past, I'm not sure if I would want to take Tamoxifen for 5 yrs and so many screenings and further biopsies. I also thought of mastectomy of that breast and reconstruction. I came here to see if others have same experience. Best of luck to you.

Dear Alizverao: This is an old thread that has not been active in a while. I was dx with multi focal ALH, FEA, PASH, pleomorphic LCIS, pleomorphic ILC, and ITC. I had a double lumpectomy, rads, and an oophorectomy so that I could take arimidex / anastrazole. I have extremely dense breasts. I'm fine. No S.E. Good luck.