Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Hello Jzcareformon. Sorry to hear about your moms diagnoses. On one hand ADH really is nothing to be worried about but on the other which I am sure the doctor told you and her ADH when found on biopsy they usually suggest a lumpectomy because there is a small percentage that will also cancer hiding along with ADH that was not found on biopsy and thus the reason for taking it all out to make sure there is nothing else there hiding but, it is also your mothers decision and all you can do is give her all the i formation and let her make the decision .

Hello jzcareformom - Sorry to hear about your Mom going through this at 83. The common treatment is to biopsy as she has done (Which is actually, I think, more painful and difficult than the excision of the extra tissue....but that was me). Then they follow up to remove the extra surrounding tissue to remove anything suspicious in the immediate area to make sure they got al the potential cancer producing cells.
If they have come to this point in the process they must feel it's a good idea to follow through on the excision surgery but if she hasn't had any issues up to this point it may be that we all get some ADH or ALH by her age.
The second surgery is pretty easy and if she can tolerate it they can see how much there is and whether there is cause for concern. Knowing about it early would be helpful because if it is or has the potential to become cancer the excision would be less invasive than treating breast cancer that has become invasive.
Can you share more of why she doesn't want to do the second surgical excision? And how concerned are her doctors about the potential for her to get invasive breast cancer at this age?
Hugs and good luck.

Thanks for your reply. My mom hasn’t had a major illness and hasn’t had regular check up for 20 years. We recently convinced her to do a thorough physical checkup, hence the mammograms and biopsy. So we don’t know how long her ADH has been there. She doesn’t like to take medicines. 20 years ago she had a broken rib in a traffic accident, she refused to take any painkillers! That was the last time she had a complete physical examination before recent checkup. She’s stubborn. it’s her decision and we can only hope she change her mind.
Her doctor Didn’t really push her one way or the other, the doctor simply told her the options and reasons behind them. The doctor also told her the risk of ADH becoming cancerous is “not very high”, about 14%. So I think her doctor is rather neutral in his recommendations. I got more concerned from all the googling, not from the doctor’s comments. My mom agreed to the 6-month follow up option and see what the doctor say after a new check up in January.

Thanks for your reply. It’s her call and I hope she changes her mind.

jzcareformom - Well, your Mom and I have something in common. I'm not a fan of medicines or doctors either and I rarely use (or can't use) medicines. She sounds tough and pragmatic and that's probably a good thing.
I found the biopsy very uncomfortable so maybe that experience is also leading her to shy away from further treatment? Also, if her risk is low per the doctors, perhaps the 6 month wait will show that her ADH is manageable and maybe has always been there and not giving her additional trouble.
My background is that I had ALH (atypical lobular hyperplasia) vs. ADH (more common ductal). The lobular type is trickier. I had a mammogram which showed a possible problem, I did the biopsy and then had to wait 6 months to remove the area surgically because of insurance issues. It was still a Stage 0 cancer at that point and I was monitored every 6 months. After two years my cancer became invasive lobular breast cancer and I had a bi lateral mastectomy. I am much younger than your Mom however (61 now) and when this all started I was just in my mid 50's.....so I had many years of worrying about the cancer progression. I chose to remove as much possibility of cancer as I could to avoid further drug treatments, etc. But again, I was younger and had a much longer time to consider and see if the cancer went anywhere.
And there's the perplexing part - I could very well have never gotten invasive cancer after that biopsy, but I did. I had equal chances of NOT getting cancer and so does your Mom. Allowing your Mom to wait 6 months with her doctors approval will be ok.
Keep researching and helping your Mom understand the options. The 'average' age for breast cancer is the mid 50's and your Mom's risk is perhaps much lower given her age. Try not to worry too much and try to alleviate your Mom's fears about that second surgery......truly not that bad and if she doesn't need painkillers much (I don't either) then it wouldn't be too bad at all for her to endure (not much fun either) but not nearly as disruptive as one might think.
Hugs

Thank you so much for the advice.

The ADH your mom had is estrogen driven. Did the doctors talk to her about taking any medicine to prevent cancer such as arimidex? That is a drug that can lower the risk of breast cancer associated with estrogen driven breast cancers. I was an oncology nurse for 10 years just retiring this past year to take care of myself and family. If she chooses not to do a second surgery again that is her chose but I would definitely encourage regular follow ups every 6 months. That is what I do with alternating mammograms and breast MRIs. It may never turn into anything but if it does the earlier it is found the better. I was 43 (now 45) when my ADH was found. I had a excisional biopsy and was started on arimidex to lower my breast cancer risk. I had to stop the medication due to the side affects. Estrogen hides in fat also so I have decided to get healthy and have lost 55lbs to hopefully lower my risk also and have cut out all processed food. Also don’t believe everything read on the internet. Yes read just don’t believe it all.

The internet can be helpful but scary. After my diagnosis I was googling everything and all it did was raise my anxiety. I now use Mayo, cancer.org and few other web sites as references so I know what questions to ask dr.; then I can make an informed decisions.

Everyone is unique and treatment or results for one person does not apply to everyone.

Laurie

I have a 'rule' I established for myself when researching cancer (or any other medical condition) on the internet and all other materials. I read as much as I can from all kinds of sources but I don't believe or take any of it to hear unless I've found it in three reputable sources (Mayo, Cancer.org, Cleveland Clinic, National Institutes of Health, Breast Cancer.org), etc. It's amazing how much you'll learn if you're willing and able to plow through the studies. Then in the end, you can take that information and your questions back to your doctors for clarification. One disclaimer - I have given myself at least one cancer I don't even have doing this, ha ha. But, my oncologist loves to bring it up to me at every visit to rib me a little.......

Hi jzcareformom. At 83 I can understand your mom’s concern about having surgery. It is not something to take lightly at any age, but for someone who is up in age I can understand the need for weighing the risk/benefits. It is a surgery with anesthesia and a breathing tube (and a pre-op surgical check-up and all the rest that went w/ it) and for me, at 59, I didn’t particularly find it to be a walk in the park. Her diagnostic mammogram findings should state the size of the microcalcificaitons and when she goes back for her 6 month follow-up (which she should definitely do), then they can do a comparison which might help her to come to a decision on going forward w/ the excisional biopsy. Making these decisions is difficult and lots of people (doctors included) will tell you what you should do - I know from personal experience how debilitating it all can be if you question your own judgement. Good luck to your mom and to you...