ADH Club
Comments
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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.
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Had surgery yesterday to remove adh. Hoping nothing else is there.
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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.
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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.
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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.
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Thanks mammalou! My assumption right now is that if excisional biopsy is also benign/ADH, tamoxifen might be a good (particularly if they are doing lower doses?), and that if there's malignancy, I might be eligible somehow for mastectomy (bilateral)...
Best wishes with your results!
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No, now I'm thinking if it's benign no tamoxifen, and opt for a bilateral mastectomy at first malignancy. These risk/benefit things are crazy. I can't believe I found a website that says the specific birth control brand I was on for some portion of the 20 years I've been on birth control raised the risk of breast cancer by 60%. I wonder if I shouldn't have been on it so long. And therefore, if I should stop fussing with my biology with hormone-related drugs and let my body do its thing...
Although some of these studies say Tamoxifen should have protective effects for 15 years after the 5 year schedule. Arghh.
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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.
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Ugh. I saw the high risk nurse this morning, and she calculated my risk for breast cancer. 42% over lifetime; 6.5% over 10 years. The 42% is hitting hard at the moment - I'm negative for BRCA1/2 and other genetic markers, have no family history of breast cancer, never had breast cancer myself, but the ADH diagnosis + age at diagnosis (40 years old) is putting it at 42%.
On a positive note, I got cleared to exercise today, and it's 60 degrees and sunny in Boston! Heading out for a jog.
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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!
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hi. I’m 40. My mammogram report says I have architectural distortion 8cm 3 nidi and 7mm group of amorphous calcification. My BS nurse called and said I had atypical ductal hyperplasia and the Dr will explain more on my appt. in the meantime I’m to do a MRI.
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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?
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Hi,
I came across this when doing research for ADH. Anyone familiar w/ this or have used it?
Thanks,
Metformin Hydrochloride in Patients With Atypical Hyperplasia or In Situ Breast Cancer to Placebo in Decreasing Atypical Cells in Patients With Atypical Hyperplasia or in Situ Breast Cancer
https://www.mayo.edu/research/clinical-trials/cls-...
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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!
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Hi MC!
The same thing has just happened to me. I was diagnosed with tubular carcinoma 5 years ago, very small, very early. This was the first year that I was very confident walking in for my annual screening, and I got stopped. Waited 3 weeks for a biopsy, and it came back as ADH. I'll be having surgery next week to take out a larger part of that to see if there's anything more.
That was my 7th biopsy. This will be my 4th surgery. The results may leave me with choices, or they may not. We'll see. From my very first mammogram, I was pulled aside to hear that I've got extremely dense breast tissue, and "there's a lot going on in there."
I go from feeling sad and angry, to peaceful that everything's going to be all right. I just wanted to write to say that I'm sending you a lot of love and hugs! We'll get through this, together.1 -
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!
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That's pretty interesting @futura. It's the first I've heard of it.
I'm a biostatisitician and was specialized in genomics, before I migrated into software. This statement sets of my alarm bells:
> The test predicts the likelihood of developing breast cancer with ~ 91% accuracy.
That strikes me as just too good to be true. I am aware of no gene expression based assay that performs like this and there's a long history of gene expression based tests that dramatically overpromised and underdelivered.
That being said, I'm certainly interested to know about this and will have a look at some of the underlying publications they list here:
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@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.
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> 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?
With the ongoing caveat that I haven't read the papers, yeah, my concern is that this is overpromise.
Yes, small sample size is one way to get results that don't generalize. Another source of flaw is more structural, i.e. that the population studied does not reflect the population people want to generalize the results to or that they sent all the "cancer" samples to one lab and all the "no cancer" samples to another. The latter type of mistake is much less common these days, but has not (will never?) be eliminated, in all of its subtle forms.
Again, I haven't read the papers, but the question I would push on is: what does 91% accuracy actually mean? I.e. of all the people they place in risk bucket A (x% are predicted to develop breast cancer within z years), is the actual proportion close to x (statistically)? Across all buckets of risk? Maybe they have actually shown this, but I'd be pleasantly surprised. AFAICT no one even takes the Gail model, which is well established, that literally.
To be clear, I think it is really positive to see progress on identifying biomarkers that shed light on who is more likely to progress to a more serious condition. I just come from a place of skepticism.
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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.
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Hi,
I had a biopsy showing ADH in 5/18, and following ADH diagnosis, I had a lumpectomy, and thankfully, my diagnosis stayed as ADH.
Since my ADH diagnosis, I have been monitored in a high-risk breast cancer program, and I just had my mammogram today. Unfortunately, I have new calcifications, this time on the other breast, and I am scheduled for another biopsy.
Can you share your experience if you have gone through something similar? Have you considered mastectomy or tamoxifen after (currently, I am not taking tamoxifen)? What was your doctor's recommendation after more calcifications (and possibly more ADH)?
Thanks,
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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
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I've been researching for hours, studying immuno stains and everything I can dig up. I'm still a little lost and I can't talk with my doctor until Wednesday. Below is my pathology result. I think this means ADH based on biopsy but needs confirmation on excision and also is suspicious for DCIS. Am I right?
Results here:
Microscopic examination demonstrates an atypical sclerosing papillary lesion with intact myoepithelial cells, highlighted with smooth muscle myosin, p63, and ADH-5 multiplex immunostains. There are foci of a solid epithelial proliferation with mild atypia and rare mitoses. These foci demonstrate homogenous staining for CK 7/18 with the ADH-5 multiplex stain, supporting the diagnosis. Foci of apocrine metaplasia are also present. There is no evidence of invasive carcinoma
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BarelyHoldingOn, it appears you have what's known as a SCLEROSING PAPILLOMA, which you're probably already aware.
https://radiopaedia.org/articles/sclerosing-papilloma-breast
Pathology stated no invasive carcinoma, but if you're not totally comfortable with this dx, you can always seek a second opinion. The "rare mitosis" comment might be something you'd want to better understand with your pathologist. It's rather easy to be misled into worrisome realms of positivity, so hoping for continued benignity as you move forward.
PAPILLARY LESIONS OF THE BREAST: TO EXCISE OR OBSERVE?
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Hi everyone!
I’m 42 and have been diagnosed with ADH C3 by FNAC.
I’m scheduled for my excisional surgery next week to have a better picture of the lesion (a mass of 5mm in my L breast) and rule out DCIS or IDC.
I’m really scared and setting my mind to have prophylactic double mastectomy.
I have a very dense breast with multiple fibroadenomas and cysts.
So tired of this stress of monitoring and wait that something bad could happen.
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Hope all went well, Cinzia.
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This thread hasn't been active in a while, but wondering if anyone can help? I have been diagnosed with a "complex" case of ADH because it contains both "papillary and micropapillary architecture with one ductul containing mucin debris". There isn't alot of information available out there about this nuance and the PA I spoke to was very vague when I asked her if this meant there was a greater likelihood that there is concurrent cancer. She just responded with "You should talk to the surgeon about that." My appointment with the surgeon isn't for another three weeks so I am STILL in limbo!!! (my original appointment was set with the surgeons PA, so that is who I have been dealing with for the past two months). I am also "high risk" (26% prior to ADH diagnosis) on the Myriad genetic screen for "DNA markers" but negative for the major mutations. I have no idea what I am looking at for my future…. will they recommend lumpectomy vs. mastectomy? Tamoxifen? ughhhhhhhhhh.
This process started 2 years ago when I found a lump… determined benign based on mammo/US. Nipple discharge began 6 months ago, essentially blown off by OBGYN, but pushed because i was not happy with the answer that some women just have discharge. He only offered me an US which I gladly accepted... US showed "dilated ducts" but nothing was recommended for follow up or what to do with that information. Finally made my own decision to seek out a breast surgeon in September, which has sent me down a road that every turn looks more and more grim… It appears that ADH is not typically symptomatic, which I am… it appears I am high risk. It appears I have a high risk lesion… It appears I have a rare complexity to the high risk lesion… It appears that the biopsy quite possibly missed cancer…
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Hi there, @lg2009, and welcome to Breastcancer.org!
We're so sorry that your post didn’t receive any responses yet. We're bumping this discussion up to help you connect with others who may have had similar experiences to share. We hope some members who have dealt with ADH can jump in and offer support or share their own cases. Please hang in there. You're not alone, and we’re here to support you.
Sincerely,
The Mods
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@lg2009 Hi, Sorry you have been spinning in circles with the ADH issues. I was diagnosed with ADH 9 years prior to my breast cancer diagnosis. I had an excision biopsy so the area of concern was totally removed. I then continued on a high risk surveillance( MRI /Mammo) by breast surgeon being imaged every 6 months. I was not symptomatic. Have you had a Breast MRI? I was considered a 28% risk, as you can see it took my cancer 9 years to show itself. As you know ADH requires a close watch as it can be a precursor to cancer.
My circumstances are not identical to yours but I just wanted to let you know you are not alone with ADH. I know how extremely difficult it is to wait to see how it all plays out. It sounds like you are a great advocate for yourself and are getting the help you need. Sounds like your appt is possibly this week, I wish you all the best. Sending positive vibes your way.
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