ALH DX - anybody's turn out to be ILC?

tovahsmom

I got my biopsy results yesterday. I have ALH and the nurse told me my BS wants to do surgery and to come back in for an appointment. I went through this is 2009 when a core biopsy turned up ADH, which upon surgical biopsy turned out to be DCIS. (I also have LCIS). Now I am worried my ALH will turn out to also be something worse, like ILC. My mother had stage 4 ILC which turned up on a routine mammo and was not there on her mammo the year before.

My questions:

Does this happen? Has it ever happened to anyone here that their ALH turned out to be ILC on exisional biopsy?

Also, I'm having trouble finding info on ALH, even in Dr. Susan Love's Breast book. Is ALH less common than ADH?

Any of your ALH experiences you are willing to share with me (DX, TX, etc.), I'd so appreciate. I won't see my BS until Monday, the 20th and then I imagine surgery will be the following week of the 27th. I hate all this waiting.

MelissaDallas

Your ALH is just the "less developed" (less atypical) cells that become the LCIS. Since you already had the LCIS I believe it would probably be expected that you also had ALH. (My first abnormal biopsy was ALH - suspicious for LCIS, which it did, in fact, turn out to be on excisional biopsy.). Women who have ALH/LCIS who go on to develop cancer often have DCIS or invasive ductal cancer instead of lobular cancer, so it could become either ductal or lobular. I think about 10% of atypia needle biopsy turn up DCIS or invasive cancer on excisional biopsy. I do believe the lobular atypias are rarer than the ductal ones.

I'm just doing more frequent screening - mammograms & MRI. I have been offered Aromasin as a preventative but have not decided on that at this time.

tovahsmom

Thank you so much MelissaDallas for replying to my post. I did not know that ALH could turn out to be LCIS. My previous DCIS was in the right breast and I was found to have LCIS there as well at the time of surgery in 2009, but my left breast had never had to be biopsied until last week. So based on what you are telling me, the ALH was already there, just never investigated until now (because there was no reason to investigate). So it's possible that the surgical biopsy will turn up LCIS but nothing more serious which is great news. I read somewhere that if you have LCIS in one breast, you likely have it in both breasts. But since I'd never had a biopsy of the left breast, I will not know for sure until my surgery.

Thank you again for your post.

MelissaDallas

That is true. Once you know you have LCIS it is my understanding that you could probably stick a needle in either breast and would very likely find more. I've joked about this to the radiologist doing my last biopsy. I told her we both knew that and she did not have my permission to find any more of it.

Anonymous

tovahsmom-- if you have LCIS, you also do have ALH ( it is the stage preceeding LCIS; the lobules are just not as completely full of abnormal cells in ALH, as they are in LCIS); (and yes, ALH/LCIS are much more uncommon than ADH/DCIS.). I see that you had radiation in 2009 for the DCIS, did they put you on any preventative meds afterwards? LCIS is thought to be a bilateral disease; if you have it in one breast, you most likely have it in the other breast. I was diagnosed with LCIS almost 12 years ago and my risk is further elevated by my mom's ILC (she had lumpectomy, radiation, and tamoxifen and is a survivor of over 28 years now, without a recurrence.!); I took tamoxifen for 5 years, I've been taking evista for the past 5-6 years, and I continue with high risk surviellance of alternating mammos and MRIs every 6 months. Fortunately, I haven't needed any further biopsies or lumpectomies in all these years since my original surgery. My new oncologist appeared to downplay the absolute need for continued MRIs and evista, (but didn't want to change the plan "as a new doctor on the case"), but has me scheduled for genetic testing in Sept. You have already been treated for the DCIS, so it is much more likely they will not find anything more serious. Let us know how it goes.

anne

InStitches

it is scary waiting for biopsies and pathology reports. My surgical biopsy resulted in findings of ALH, LCIS and DCIS. Of the three it is the LCIS that bothers me the most since it means I can expects problems in either breast. I had a lumpectomy and am now beginning radiation, with five behind me and 28 more to go. After that I will go on hormone therapy because my cancer was very strongly ER+.

Peace and healing,

Nancy

614

I agree. The LCIS is very scary. GOOD LUCK.

newtxgal

I am new to the forum, and also have LCIS since 2009. Yesterday I found out I have ADH in the other breast after an MRI biopsy. I will have a lumpectomy to make sure it is not DCIS in two weeks. Does anyone know the difference between LCIS and ADH? I have strong family history (mother, daughter, aunts, and cousins) who have had BC but I am BRACA negative. Certainly high risk though. Age 63, and very healthy otherwise. Was on Evista for 9 months in 2009 but could not stand the hot flashes, every hour day and night. I am thinking about going on it again after this diagnosis though. Suggestions? Help??

Anonymous

newtxgal----technically, ADH is a "pre-cancer", and LCIS is a stage 0, non-invasive, in-situ cancer; they are both markers for higher risk of invasive bc in the future. ( LCIS is the more serious of the 2, it is further along the bc spectrum with double the risk of ADH.) Your overall risk does not increase since this finding of ADH. but it is good you are having the lumpectomy to remove it and make sure there is nothing more serious in there along with the ADH (like DCIS or invasive bc). Since you have a strong family history along with the LCIS, maybe you could give tamoxifen a try? Or try the evista again; since it's been 6 years, maybe you might tolerate it better now. I think some oncologists are even using aromasin now for LCIS (although, none of my doctors have mentioned it). I was diagnosed with LCIS 12 years ago and my risk is further elevated by my mom's bc history (ILC). I took tamox for 5 years, have now been on evista for about 6 years, still do high risk surveillance of alternating mammos and MRIs every 6 months. I have BRCA testing scheduled for mid Sept. Praying you get good results with nothing more serious found.

Anne

newtxgal

Thank you for your reply Anne! That was so helpful, as I didn't know about ADH until I got the diagnosis. I go to the oncologist after I get the results of the lumpectomy, and I was thinking about going back on Evista or Tamox after hearing this. I will also ask about aromasin. I also alternate mammo's and MRI's every 6 month, have been for the past 6 years, and the ADH was found thru the MRI only. My breast surgeon had me do a mammo and an ultrasound after finding a spot on the MRI, but nothing was seen on either one, only on the MRI. So the biopsy had to be done by a radiologist/surgeon while I was in the MRI. They did the contrasting IV dye and then a grid is made, pinpointing the lump. Then they wheeled me out of the MRI machine, although I had to lay very still, not being able to move or look at the doctor while he did the vacuum probe for the biopsy, and then back in the MRI tube to make sure all was taken, again not moving an inch. Glad that's over! Let us know about your BRAC test results, and prayers to you too! We're all in this together!

Alittleknowledgeisdangerous

re: Tamoxifen vs. AIs like Aromasin. I just skimmed an article on an ILC thread that raises the possibility that AIs are more effective against lobular carcinoma than Tamoxifen. Seems that some tumors might become resistant to Tamoxifen. Check this thought out before you decide on a drug, even though you are now coping with ductal as well as lobular abnormalities. If you're gong to endure the hot flashes and aches & pains, you might as well get the best possible results.