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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 11:45AM - edited Aug 13, 2013 09:21AM 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 12:51PM 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 08:13PM 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 07:28AM - edited Jan 19, 2019 07:32AM 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 11:08AM 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 11:10AM - edited Jan 19, 2019 11:10AM 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 02:24PM - edited Jan 19, 2019 02:27PM 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 02:29PM 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 02:57PM - edited Jan 19, 2019 02:59PM 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 06:00PM 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 12:37PM - edited Feb 5, 2019 01:12PM 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 07:45PM 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!

Diagnosed with ADH 2/2019 Surgery 2/7/2019 Lumpectomy: Left

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