ADH Club

Hello. My first post here. I had stage 3B IDC in 2011. I ended up with a mastectomy of my cancer breast only. I took Tamoxifen for 5 years and I’m on my 3rd year of an AI drug. I’ve been having annual MRIs as my breasts are so dense. Just had a biopsy of remaining breast which was ADH and being scheduled for surgery to be sure that is all. I have read that ADH is usually estrogen driven. My concern is that the anti estrogen drugs I’ve been on are no longer working and that has caused the ADH to develop. Does anyone know if ADH can be tested for estrogen receptors? My biggest fear, of course, is that my original cancer will spread to the rest of my body is my AI drug isn’t working anymore.

Diagnosed with ADH last week. Excisional biopsy Thursday to more thoroughly check for cancer. The doctor said I'd be eligible for tamoxifen even if there's no malignancy. My initial reaction was no, but reading online, it looks like it really does decrease the risk of developing invasive cancer. I wonder how different the tamoxifen risks are compared to the low-dose estrogen birth control pill I'm currently on - I know blood clots are a risk on the birth control too. Not sure about risk of developing other cancers compared to low dose estrogen pill...

Edit: okay, it looks like tamoxifen is completely the reverse of my low dose birth control risks, which is slightly ironic but makes sense. Low dose birth control increases my risk for breast cancer, can cause increased hair growth, and vaginal bleeding.

Good luck on Thursday! I will get my results back on a Thursday. I was on Tamoxifen for 5 years and it was ok. I did have some side effects but it is doable. I've been on Aromatase Inhibitors for 3 years but now my doc wants to switch me back to Tamoxifen They will probably want you off the estrogen pill as estrogen seems to feed ADH.

mammalou, did they say whether they are going to test receptor status?

Had my sugical excisional biopsy today! The worst part was not the surgery, and not the radioactive seed placement in mammography, but putting in the IV when I first walked in. They couldn't get a vein because I hadn't eaten or drunk anything since midnight. I ended up passing out from all the prodding. But the anesthesiologist was walking by and offered to put it in, and he got it first-try. Placing the radioactive seed (they used that instead of placing a wire) and the surgery itself were a breeze - I was permitted to leave after 30 minutes in recovery.

Just diagnosed today after a lumpectomy for a radial scar/papilloma, so joining the 6-month watch and wait club (every 6 months it's looking like but the surgeon took 30 seconds to tell me over the phone, so I don't know much more than that at the moment). Glad it's nothing more, but being so young (just turned 30), and with a STRONG family history of bc, I'm thinking this is the beginning of many mammos/US's and benign breast conditions over the next few years... So thankful I found this site, as it's really opened my eyes to the world of my breasts and I've already learned so much just over the last month since my initial US!

Met with BC Oncologist and BC Genetuc Counselor in joint meeting yesterday, they reran my genetic numbers and said I am 57%.

I am not a medicine person. They want me to have lumpectomy to make sure nothing else is in there. Then, consider one of 3 things: watchful waiting, tamox, or mastectomy.

She said she considered my number high. She also favors drugs but that is not me.

Thoughts?

Hi all!

10 years ago, I stumbled across this wonderful site. At that time, I was newly diagnosed with a papilloma. After my excisional biopsy, my surgeon discovered that along with the papilloma I actually have atypical ductal hyperplasia. I was sent to visit with an oncologist, they recommended Tamoxifen, but I wasn't a candidate due to blood clotting issues. Since then I've been in the watch and wait club. All has been fine, up until three weeks ago.

Three weeks ago, I went in for my normal yearly screening mammogram. Funny thing is, this was actually my very first year that I wasn't anxious or worried about my screening. The year that I'm not worried is the year that I get the call back. I've been having pain in my upper right arm, along with my lymph nodes, in my armpit on that side coming up and down. My report states that I have had developing asymmetry on present and prior mammograms, but questioning the increase in prominence on the current study. I'm scheduled for a diagnostic mammogram and ultrasound, this upcoming Friday.

Last week, I had labs done for my routine checkup with my hematologist. Yesterday, I met with my hematologist. He’s very concerned about my blood calcium level being elevated & he has already set up another appointment with me to go over my upcoming diagnostic mammogram & ultrasound results. He’s also set up an appointment to get more lab work done. My head is spinning.

Not sure why I'm posting all of this.... think I'm just looking to see if any of you guys have a similar story? I've got a very deep feeling that something is just not right.

Thanks for listening! So very thankful for this community! Hugs to you all!

Hi,

Did anyone have this testing? I heard it from another group and curious about its validity.

Benign Breast Condition Risk Test -specifically for atypia

Thanks!

@sasamat great to hear that you can actually understand the underlying technology because I don't. Please share once you have more info.

91% accuracy is too "high" correct? It makes sense especially thinking this test is not widely used. I am just guessing their N must be small?

I heard of a couple of people in the other online community who have taken this test, and one of them had a very high risk rate.

I joined this club today, pending further evaluation. 33 years old, small palpable nodule in upper outer quadrant of R breast, BI-RADS 4 on U/S, came back as ADH. I've been referred for a surgical consult and that appointment is in 2 weeks.

I have two main fears at the moment:

1) The ADH diagnosis is upgraded to something invasive after further investigation.

2) Because I'm 33, I've never had a mammogram. Even with the palpable lump, I was referred straight for U/S due to my age, no diagnostic mammo. They didn't even do the post-placement mammo to check the biopsy marker. I'm afraid the surgeon is going to refer me for an MRI that finds something else wrong.

This thread has been a great resource thus far and I am carefully reading every post.

Hi Futura,

I had ADH, some ALH, and increases in calcification. I just didn't want the 6-month waiting game. I have had other cancers, and I wanted this one in the rearview mirror. I'm now 56 years old. I went to New Orleans for prophylactic mastectomies with DIEP flap reconstruction. This was in May of 2019, and I love my results. I know my approach isn't for everyone, but it was a great one for me! Feel free to reach out if you have any questions.

Yours,

Mary