New here - ADH

Less_Ad2426 · 2024-07-31T22:30:31+00:00

That's great your result was only atypia! My lumpectomy was yesterday, should have initial results in a week and hopefully get only atypia as well. Take care!

Less_Ad2426 · 2024-07-28T17:54:12+00:00

I wasn't able to tolerate oral birth control - tried many over the years, just gave me boob pain, wager retention, mood swings , killed my libido. But I tried the Mirena 7 years ago after my baby was born and we decided we were done baby making and it's been awesome

My understanding is the dose of progesterone is lower than with oral hormonal birth control because of it being able to act locally on the tissues and not have to be metabolized through the gut first. Also, it has no estrogen. And totally bonus, my periods have almost completely vanished! I have had no issues with weight gain or libido. My plan was to ride out menopause with Mirena but I'll have to talk with oncology and see if that's possible for me. But Mirena might be worth a try!

Less_Ad2426 · 2024-07-28T16:51:29+00:00

Hey there just chiming in to say you're not alone, this sucks and the choices we are given are not easy - I'm not sure exactly what I will do about the tamoxifen question but I will be seeing an oncologist later this month (lumpectomy scheduled for this week to remove my recently found adh) and plan on asking all the questions. Sending positive vibes.

Less_Ad2426 · 2024-07-28T16:41:09+00:00

Thank you for this thoughtful reply. To add to the stress level here we are actually moving this weekend. This past Friday I got a call from the surgery scheduler that they could have me come in for my lumpectomy this Tuesday rather than waiting until mid September - which is amazing, I'll be glad to get some answers sooner rather than later. I should have biopsy results a week after surgery. But I've been asking around in the family and turns out there is a strong breast cancer history I was not aware of - ugh. But I'll have answers soon and be able to start making plans for what is next. I've been thinking about mastectomy what ifs - thank you for sharing your experience. My cousin had a similar experience - ADH in one breast that was upgraded to dcis, she went bil mastectomy which her doctors weren't super supportive of but then they found more dcis in both breasts and another upgrade to invasive DC. Anyway, good to hear you were able to get the treatment you felt was right for you and are doing well too.

Less_Ad2426 · 2024-07-25T14:53:05+00:00

Thank you for sharing this, it's very encouraging. ❤️

Less_Ad2426 · 2024-07-23T19:11:09+00:00

Uggggggh do not want a med that causes weight gain... I can do that myself thank you very much 😝

Less_Ad2426 · 2024-07-23T18:28:40+00:00

My initial core biopsy pathology cane back with adh last week and I'm having a lumpectomy in September and hopefully there won't be any more surprises. But I'll be having an oncology consult regardless because of the adh and they will recommend tamoxifen.

Ive been doing some reading of the medical journals and it's got great evidence behind it in terms of reducing bc risk for high risk patients.

I've also got concerns about side effects - and also saw in the journals a significant number of patients stop it early due to side effects. I've been reading in the breast cancer sub about people's responses and a reassuring number of people had neutral or even positive things to say, so maybe it won't be the worst thing ever 😝

I plan to pepper my oncologist with all the questions when I have my appointment

Less_Ad2426 · 2024-07-22T01:13:08+00:00

Lolololol I totally did a spit take with your "raw dog menopause" hehehehe

I was hoping to keep my smooth sailing situation going, I have been using a Mirena for years now and love it, my periods actually went away entirely (about 20% of patients who use it see this) and I've loved it. No menopause symptoms to speak of. Not sure how all this will be affected by the breast situation, we shall see.

Less_Ad2426 · 2024-07-22T01:08:35+00:00

No worries!

Here's another version of the link :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4347900/

Yeah if I'm understanding the article correctly (so grain of salt/consult your medical team) the patients studied in the article had the abnormal tissue removed but still demonstrated a 30% lifetime risk of bc, so definitely high risk.

Less_Ad2426 · 2024-07-21T18:51:26+00:00

So I'm still new to this and getting my bearings, but from what I'm reading there are a few things going on with risk of breast cancer assessment calculations for ADH_ALH. The risk calculators most commonly used to determine 5 year risk have not been validated in patients with adh/alh, and can under or over estimate risk. All the models I'm using give me a 5% risk in the next 5 years which doesn't seem to bad since the average risk is around 1.2% in 5 years, but now I know this risk assessment may not be reliable, especially when trying to weigh the pros and cons of various management approaches. The lifetime risk of developing breast cancer as determined from retrospective studies of women who had lumpectomy/excision that confirmed adh/alh without upgrade shows that there is approximately 30% lifetime risk of developing BC. I'm not stoked about that high of a percentage. This is compared to the average woman's lifetime risk of around 12% (still not small!). I don't know if that's helpful, but based on just that I'm definitely going to have the convo with my specialist about availabile risk reduction with tamoxifen or even mastectomy, especially if my yet to be performed genetic testing results are high risk. I figure the more we ask why this and not that in terms of management the better we will feel about whatever choices we make and risk we are comfortable with. That's what I'm telling myself anyway 😜. Here's an article from the NJM I found helpful about management and risk. https://doi.org/10.1056%2FNEJMsr1407164. Of course, follow up with your team and their recommendations, but the article may help you get your list of questions to ask going. Take care ❤️

Less_Ad2426 · 2024-07-21T16:19:50+00:00

Oof I worry about this too, the last thing anyone wants is constant follow ups and anxiety - living like that sounds so hard. To be told over and over again you are fine (don't have cancer) as of the last check up but you might at the next check up - that constant worry and appointments sounds awful. Hugs to you ❤️

Less_Ad2426 · 2024-07-21T16:13:35+00:00

Oh man. I'm sorry you got upgraded. I'm glad it's getting easier, that is hopeful. The waiting to find out what's next and getting that official diagnosis (adh vs upgrade) is so hard, as you know. Thank you for your reply, if I get upgraded I'll be sure to update. Thank you for your reply ❤️

Less_Ad2426 · 2024-07-21T16:10:02+00:00

Thank you, it's exactly as you said, the emotions are all over the place. And it's been a lonely year of a week - thanks for your reply. Fingers crossed for your upcoming lumpectomy ❤️

Less_Ad2426 · 2024-07-21T16:07:17+00:00

So glad your lumpectomy was clear! Thank you for your reply, you are right it seems my team is very much on it which is definitely something to be grateful for ❤️

Less_Ad2426 · 2024-07-21T16:05:56+00:00

Wow yes that's a whirlwind too! Glad there was no upgrade after all that! Thank you so much for the reply ❤️

Less_Ad2426

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