How many ADH/ALH who had lumpectomy but still got cancer later?

Utahmom

Another ADH friend just was diagnosed with cancer. She had ADH come back two times. She did lumpectomies two times. The doctor told her that she would consider mastectomy should it come back a 3rd time, well on the 3rd time, it was cancer.

She is doing well and it has not spread beyond the breast, so this a blessing.

farmerlucy

What a kick in the teeth for her. I’m sorry.

LovesLiterature

I might end up starting a topic on this, but I wanted to respond since I have a similar question/situation. In 2016, they discovered atypical ductal hyperplasia With microcalcifications, in my right breast; they did a biopsy and the diagnosis was upgraded to DCIS. In November 2016 I had a bilateral mastectomy. No hormones. After I came out of the surgery the pathology report came back as no more DCIS. However, ADH was found in the residual breast tissue in both breasts. After the whirlwind of expanders and then reconstruction in 2017, it never dawned on me to ask about margins for ADH. All of the research I have done on this topic, comes back as pretty vague—sort of a “non-issue”... it turns out they do not do a whole lot of research or case studies on women who have ADH in their residual pathology post bilateral mastectomy. And now with COVID-19, I cannot even get in to see my surgeon (I have a dent in my left breast that I’ve been worried about—along with a few bumps in non-cancer breast). I wish I knew what the statistics were for ADH found after surgery.

Utahmom

I have another friend who had ADH2 years ago after having microcalcs appear and keep appearing. She did lumpectomy and it showed more of the same.

She did genetic profile and her numbers were about 46%. Strong family history. After much discussion and research and multiple consultations, she had preventative mastectomy this year. Turns out ADH had again came back in the short span of time. I believe it was present in both breasts.

She is doing well and says that she is grateful.

Utahmom

in her pathology, there was DCIS and more ADH in just one year.

indahood

I was diagnosed with ADH in April 2020 and am still waiting surgery because of COVID. this is so frustrating as I am a Breast Cancer Survivor and I'm so worried it's back. The doctors seem so blase about the whole thing. Anyway, I have opted for double mastectomy and they all seem to think I'm overreacting. As a chronic under reactor, I disagree. Anyway, surgery is January 2021 but possible cancelation depending on COVID numbers after CHRISTMAS.

No question, Just a rant. Why do doctors think ADH is nothing? Ok there a question

cookie54

Hi indahood, Sorry that you are still waiting since April, that's is unacceptable! So I came on to rant with you lol. I bet if it was one on their family members they wouldn't be waiting as long as you are. Unfortunately they are so relaxed about things because they have never walked in our shoes. I understand the issues during the pandemic but there were windows of opportunity for surgery.

Anyhow I won't get into my whole story because I posted on this page before. Yes, ADH is real and should be taken seriously. I had ADH with lumpectomy and 9 years later diagnosed with TNBC. Now I am currently dealing with a recurrence, so yes it's all very real . I do understand that not all ADH turns into cancer but you do have a history so I don't think you are overreacting. Your decision needs to be based on what YOU feel comfortable with, it's your life.

Best of luck to you in getting surgery in January (fingers crossed).

BlueGirlRedState

iindahood - I am sorry that you had to wait so long. Even Covid should not have thrown a wrench into your cancer treatment The surgery decision is a very personal one. My surgeon told me there was no medical reason for me doing a bi-lateral in 2016, but that was my choice, and I do not regret it. I did not do reconstruction, even though I explored plastic and DIEP. One surgeon told me I could do it later, if I changed my mind. There are a couple of discussion threads on reconstuction, going flat etc Those might be helpful. Hugs

Lea7777

This is WAY after the fact and the discussion on this thread has veered far away from this particular topic, but I wanted to update a Dec 22, 2019 post that showed 2 charts/graphs on the odds of breast cancer when ALH and ADH are present. The charts are quite alarming, especially as the number of foci increases. Today, I was reviewing those charts and the studies on which they were based in preparation for a routine appt with my oncologist. I saw a phrase for the first time in parentheses that makes these daunting charts less daunting.

"Cumulative incidence of BC (both invasive cancer and DCIS) in women with atypical hyperplasia, by type and extent of AH."

That's the phrase. The incidents of BC include DCIS, not just invasive cancer in the graph. I did not realize that. I thought the graph showed invasive breast cancer. I know I discussed this chart with several professionals and asked if the numbers represented INVASIVE cancer and thought they did. But they don't according to the wording in the parentheses.

To me, DCIS is far different than invasive cancer. Now, nowhere in the study was I able to find what percent of the cancers were invasive and what percent were DCIS. That would be a huge piece of info.

Perhaps that phrase in parentheses was why the oncologist I saw at Mayo a couple of years ago (where the study was done) was not alarmed about these graphs and did not see them as grounds for mastectomy. That oncologist insisted this study did not uncover new ground. And if those #s are not cases of just INVASIVE BC, it is far less scary.

The graphs are here:

https://pubmed.ncbi.nlm.nih.gov/27352219/#&gid=art...

https://pubmed.ncbi.nlm.nih.gov/27352219/#&gid=art...

The whole study is here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC50301...

This is a correction in the right direction.

Utahmom

I hope that your appointment went well.

I am still waiting on my surgery and dieo flap reconstruction and no, I do not have DCIS yet or st least the ADH appeared stable.kn my recent mammogram and the hyperplasia in the opposite breast is holding as well.

My Tyler cuzik number was 57.

We saw my reconstruction surgeon a couple of months back and he indicated that his sister's number were 54 and they elected for her to have diep flap as well in NYC.

My surgeon is from Mayo and used to train doctors to do diep flap.

Wishing everyone blessings.

Utahmom

Did you have your surgery?

If so, where?

And , most importantly, how are you going?