ADH AND ALH... Does having both affect your risk even more?

CaringMommy

I was diagnosed with ADH almost two years ago, and now I have been diagnosed with ALH. I know a lot about how the ADH affects my risk of getting breast cancer in the future, and I've read that ALH is similar, but I can't seem to find any information on whether or not my risk is increased any further by having both ADH AND ALH. Has anyone else had a similar experience?

CaringMommy

Nevermind, I was finally able to find a website with the answer. Risk went up to 8x. Factor in family history, and I don’t know WHAT to think! Here’s the article, for future reference, if anyone else has the same experience and question: http://www.cblpath.com/uploads/Atypical_Lobular_Hyperplasia.pdf

CaringMommy

update: I was told that having both ADH and ALH doesn't make your risk go up any higher, so that's a relief!

farmerlucy

CaringMommy - I’m sorry no one has responded to your posts. I’m glad you’ve found some answers. When I was diagnosed with ADH and ALH, my doctor was mainly concerned about the ALH because it is a marker for bilateral breast cancer. I met with a genetic counselor soon thereafter and he gave me a 50% lifetime risk, based on the tissue change and my family history. It was a very worthwhile appointment. I recommend it! Take care!

CaringMommy

Thank you Farmerlucy! I definitely plan on talking to someone after this surgery, to evaluate my risk and discuss whether or not it is recommended that I take any preventative measures. I truly appreciate your input, and I apologize for the late response. I'm very glad to see that you are a survivor and (hopefully) doing well these days!

KayaRose

I had only ALH but would advise you to take it very seriously. My ALH was in my right breast approximately 20 years ago. In 2014, ILC was found in my left breast. Even though I had gone regularly for my mammograms since ALH was found so long ago, my ILC had already gone into my lymph nodes. Lobular cancer is much more difficult to find than ductal. There was no lump, just a thickening. I understand the 3D mammograms are a little better at finding it but would recommend you push for ultrasounds be done also.

Best of luck to you.

farmerlucy

Holy cow Kayarose! That stuff is insidious. I’m really sorry about your diagnosis. Glad you are doing well.

KayaRose

FarmerLucy, The worst part was that my doctors, both MO and BS, felt the right breast didn't need to be removed. They both advised treating the cancer in the left breast and leaving the right breast alone. Their main concern was the possibility of an infection in the breast that had no cancer possibly holding up treatment of the cancer. I really wanted both removed at the same time but accepted their opinions.

In January of 2017, I had a mammogram on my remaining right breast. The radiologist suggested an ultrasound because of a suspicious area. The ultrasound led to an MRI. The MRI showed only some areas of "enhancement" but not cancer. Needless to say, I was a basket case of anxiety during this whole time. Just being back in the breast imaging center was difficult to bear. I literally begged to have the breast removed so I wouldn't have to go through that testing again. Both doctors agreed it would be in my best interest to have a prophylactic mastectomy of my right breast. Due to some upcoming family obligations, the surgery wasn't done until July. But it is done and I don't regret having it done one bit. In fact, it's been a great relief.

It's always a difficult, personal decision and I wouldn't advise anyone either way. All we can do is learn as much as we can and follow what our instincts tell us to do.

Glad you're doing well, too.

CaringMommy

@KayaRose, I'm sorry you had to go through that but glad to know that you are now doing well. I had the surgery on Thursday, and it went very well. It was easier than the last one! I am curious though... They just called and said it was benign, but not ALH. The core needle biopsy said it was ALH. When I had ADH, it came back as ADH. So, I know that it's possible for atypia to sometimes be upgraded to cancer at surgery, but is it also possible for it to come back as something LESS in surgery? This would obviously be a relief, but I did have two other benign masses that were right next to the one that was originally diagnosed as ALH but then changed to fibrocystic upon removal.... so all I can think is that a) the core needle removed everything, b) the first pathology report was incorrect, or c) the surgeon accidentally took out the wrong mass. I doubt it is "c", becuase I have faith in my radiologist (wire localization) and my surgeon. But hopefully she can explain this all to me in a way that eases my mind and makes sense when I see her at the follow up!

momoschki

It’s certainly possible that all the ADH was removed by the needle biopsy. This was the case with me- excisional biopsy showed only fibrocystic changes.

CaringMommy

That is great to hear! Thank you for sharing that information