ADH vs DCIS

Posted by ssrriley @ssrriley, Jul 14, 2023

I just received news today that after several mammograms and now a biopsy, I have atypical ductal hyperplasia suspicious for low grade ductal carcinoma in situ.
I am very upset and of course doing too much reading online. My appointment isn't for 10 more days to discuss next steps with my surgeon. I am confused though as most sites list adh as one diagnosis and dcis as a different one. Am I reading this correctly? Am I to believe they are going to do a lumpectomy and then test the tissue to give me the actual diagnosis of either ADH or DCIS. I also was diagnosed with osteoporosis last week. I am only 52 years old and have already gone through menopause. I wonder how my osteoporosis treatment will align with this new pre breast cancer issue. Thank you for any more clarification as I am waiting to ask all my questions at my appointment coming up.

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In my understanding ADH is considered a benign finding (but also sometimes referred to as a pre-cancer in my experience). It is a risk factor that elevates chances of future breast cancer to fifteen percent. Eight years after an ADH finding on excisional biopsy/lumpectomy I had a new breast cancer develop in the same area - part of that unlucky fifteen. I was followed with mammograms in those in between years, but not with MRIs. Today protocols should include both. DCIS is considered the earliest form of breast cancer (Mayo clinic site) but not invasive.

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Hello @ssrriley I would like to continue on with what @maryanna9 is saying.
DCIS is; Ductal Carcinoma In Situ. Meaning encapsulated, so it is carcinoma before it becomes Invasive Ductal Carcinoma or IDC. If it is suspicious for DCIS, the best course of action would be to remove it and get it under a microscope before it can become IDC.
I understand wanting the least invasive care, but something that is small and encapsulated isn’t best found with a needle biopsy.
Are you good with having a small lump removed to make sure it won’t be cancer later?

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I am moving forward with mri with contrast and without contrast in a few days. They also are recommending genetic testing. I will be anxious to see how these factor into my care and treatment. I am good having the lump removed- waiting is the hardest part. I am not able to be seen for 10 days. I feel like I will have more answers then and can wrap my head around the next steps.

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@maryanna9

In my understanding ADH is considered a benign finding (but also sometimes referred to as a pre-cancer in my experience). It is a risk factor that elevates chances of future breast cancer to fifteen percent. Eight years after an ADH finding on excisional biopsy/lumpectomy I had a new breast cancer develop in the same area - part of that unlucky fifteen. I was followed with mammograms in those in between years, but not with MRIs. Today protocols should include both. DCIS is considered the earliest form of breast cancer (Mayo clinic site) but not invasive.

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did you go on drugs for an extended time after? This seems to be a slight controversy in my findings. I am glad you are doing ok. Thank you for answering.

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@ssrriley

did you go on drugs for an extended time after? This seems to be a slight controversy in my findings. I am glad you are doing ok. Thank you for answering.

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Eight years ago, tamoxifen or another estrogen blocker was not offered for my finding of ADH. I also have an autoimmune disease. I read an article in January that indicated the auatoimmune inflammation is now considered to increase breast cancer risk. I asked the nurse practioner at my ob/gyn's office to recalculate my risk and look at newer protocols for follow up at my January visit. She conferred with breast center and we set up a diagnostic mammogram and an mri. The diagnostic mammogram led to an ultrasound the same day and lilelihood of cancer. Because mucinous breast cancer is slow growing and mine was over 1 cm, it's very possible it was missed on previous maitenance exams.

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I just wanted to comment that I have osteoporosis as well as invasive ductal carcinoma. Of course, it all depends on what treatments are recommended for each, but they can both be addressed at the same time as long as the doctors are all informed of your other diagnoses.

Coincidentally, I had my biopsy on a Thursday, an infusion of Reclast on Friday (for the osteoporosis), and got my cancer diagnosis the following Wednesday. I later read the Reclast may help lower the risk of metastasis to the bone. (Though it does have its side effects.)

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I hope you are doing ok. It’s a lot to take in I know. I was 54 last year when I was diagnosed with DCIS and IDC. When it was all removed one margin was only 1mm on the anterior edge which contained some additional tissue they were not sure if it was dcis or ADH. It was sent to Stanford for final analysis. They ruled it was ADH so I did not have to do another surgery. ADH is not cancer but dcis is. Since then I’ve had 16 rounds of radiation and I’ve been on Letrozole for 7 months. I’m doing well and you will too.

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Thank you. I am so glad you are doing well and I am praying for same results and prognosis. Waiting is truly the hardest part!

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@ssrriley

I am moving forward with mri with contrast and without contrast in a few days. They also are recommending genetic testing. I will be anxious to see how these factor into my care and treatment. I am good having the lump removed- waiting is the hardest part. I am not able to be seen for 10 days. I feel like I will have more answers then and can wrap my head around the next steps.

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Hi @ssrriley, I wanted to check in with you. I think you’ve seen your cancer team in the meantime. What did you learn? How are you?

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Thank you for checking in. I met with my cancer team and surgeon and we have put a date down for a lumpectomy. I am awaiting the results of my genetic tests to see if I will adjust this plan based on my results. Appreciate you checking in. I feel good about the direction we are going.

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