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Topic: ADH Club

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Aug 30, 2011 10:45AM - edited Aug 13, 2013 08:21AM by Chickenpants

Chickenpants wrote:

Can we start a thread on ADH (known as atypical ductal hyperplasia)?  There may be one already existing, but without a lot of hunting around, it's not easy to locate and may not be recent.

I'm 51 and have (had) no risk for BC other than being a female - non smoker, no immediate BC in my family, I'm fit, I exercise, eat well, maintain healthy weight, breastfed babies - all of that.  I feel like with every diagnostic test I endure, I keep squeezing through the skinny risk gates and have now landed with the ADH diagnosis (only 4% of women with atypical cells fit into the ADH group) and now I am at high risk for BC of some type, although DCIS is the more common association, I am also at risk for invasive.

My journey started June 28th, 2011, very typically with an (every 2 years) screening mammo, followed by diagnostic mammo for calc cluster (2mm of concern, but 9mm spread).  US found multiple cysts, but no lesion associated with the calc cluster, so on to the stereotactic VA core needle biopsy.  Results showed ADH and I'm scheduled for a meeting with the surgeon on Sept. 8th and this will proceed a further surgical biopsy - I'm thinking excisional, but I can't recall.  I will get clarification on the 8th.

Here's the dilema - from my extensive research, this conditon is like a ticking time bomb.  It's likely that I will endure future biopsies over the next 15 years as my risk just shot up 4-5 times that of unaffected (normal) women.  Anytime some more suspicious calcs are seen on a mammo, then the only way to determine what they are is by biopsy.  I will likely be on a short recall for follow up.  This for me, is more of a mental disorder.  I have small breasts to begin with, so there will definitely be constant reminders - scars and chunks missing.  The reality of this diagnosis is that there will be more to come - so stay tuned.... a large grey area indeed.  I totally understand why women would opt for a preventative double mast in this case.

Anyhow, that's some of my thoughts on this diagnosis.  I want to open up discussion around this and share links to interesting articles.  Oh, I know my chances are good that I'll never have anything more than what I have today, but still... like I mentioned, it's the mental aspect of this one - nothing concrete and always waiting for the other shoe to drop.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Dec 27, 2018 11:51AM mammalou wrote:

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.

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Jan 16, 2019 07:13PM mammalou wrote:

Had surgery yesterday to remove adh. Hoping nothing else is there.

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Jan 19, 2019 06:28AM - edited Jan 19, 2019 06:32AM by Muffkin78

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.

Diagnosed with ADH 1/7/19
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Jan 19, 2019 10:08AM mammalou wrote:

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.

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Jan 19, 2019 10:10AM - edited Jan 19, 2019 10:10AM by mammalou

This Post was deleted by mammalou.
DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Jan 19, 2019 01:24PM - edited Jan 19, 2019 01:27PM by Muffkin78

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!

Diagnosed with ADH 1/7/19
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Jan 19, 2019 01:29PM Muffkin78 wrote:

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

Diagnosed with ADH 1/7/19
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Jan 19, 2019 01:57PM - edited Jan 19, 2019 01:59PM by Muffkin78

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.

Diagnosed with ADH 1/7/19
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Jan 24, 2019 05:00PM Muffkin78 wrote:

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.

Diagnosed with ADH 1/7/19
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Feb 5, 2019 11:37AM - edited Feb 5, 2019 12:12PM by Muffkin78

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.

Diagnosed with ADH 1/7/19
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Feb 14, 2019 06:45PM SarBar22 wrote:

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!

Lumpectomies 2/2019 & 5/2020: ADH, Radial Scars, Multiple Papillomas
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Feb 23, 2020 10:12PM XsiennaX wrote:

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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Mar 5, 2020 07:40AM Utahmom wrote:

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?

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Nov 28, 2020 08:15PM - edited Nov 28, 2020 08:16PM by futura

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-...
ADH - 05/2018
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Mar 2, 2021 04:28AM mcmommy wrote:

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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    Mar 2, 2021 07:49PM - edited Mar 2, 2021 07:54PM by perl5672

    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.

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    Mar 4, 2021 08:05PM futura wrote:

    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!


    ADH - 05/2018
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    Mar 4, 2021 08:16PM sasamat wrote:

    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:

    https://bbdrisk.com/physicians/faqs-aboutbbdrisk-d...

    ADH, surgical excision 2020-12-15
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    Mar 4, 2021 08:25PM futura wrote:

    @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.

    ADH - 05/2018
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    Mar 5, 2021 11:13PM sasamat wrote:

    > 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.

    ADH, surgical excision 2020-12-15
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    Jun 9, 2021 10:29PM gamzu710 wrote:

    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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    Jun 14, 2021 12:06PM futura wrote:

    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,

    ADH - 05/2018

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