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Just diagnosed with Atypical Ductal Hyperplasia (ADH)

Muffkin78
Muffkin78 Member Posts: 38

So... I was just diagnosed with ADH (had steriotactic biopsy after single cluster of microcalcifications appeared on mammogram). Which they said is "not cancer", but cells that are at risk for turning into cancer one day and puts me at moderate risk overall for developing breast cancer in either breast in the future, based on what I read online.

So they literally called one hour ago. And they've given me referrals for: Surgery (I guess they want to do a bigger biopsy of the area? I see from people's profiles that sometimes they miss other signs of cancer if the area is small), nutrition (they're going to to tell me to stop drinking wine, I know it), and my ob/gyn (I'm guessing maybe to review birth control, as I'm 40 and pre-menopausal and currently on low-dose estrogen, which I guess would feed any ER+ cells?). I'm glad they're being so proactive, but I work full-time and this is going to be a lot of appointments... And the 6-month follow-up mammogram for moderate risk of breast cancer. I guess I thought an benign finding would be "see you in 6 months" and done.

I am happy it's not cancer, but "higher risk of cancer" is still a lot to think about and manage right now...

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Comments

  • ingerp
    ingerp Member Posts: 1,514

    Back when I had ALH I read that there was about a 20% chance of finding something more serious in the area. You'll probably have an excisional biopsy recommended, which is essentially a lumpectomy. Up to you as to whether or not to have it, but it's a simple procedure with not much downtime.

  • Muffkin78
    Muffkin78 Member Posts: 38

    Thanks Ingerp - I've had knee surgery twice in my 20s, so I'm not so freaked out about "going under" for something like a lumpectomy. My work manager has been pretty flexible about letting me work from home if I need to, so maybe I can work from home a few days after any excisional surgery? The consultation is with "surgery", and I imagine most surgeons are "pro-surgery", so it seems likely. I had wondered, because it seems like ADH indicates you have a risk for developing breast cancer from any cells in either breast in the future - so they aren't cutting out "the bad area" - must be for further diagnostics to see if there's any cancer nearby...

  • ingerp
    ingerp Member Posts: 1,514

    Yes--the reason to have the excisional biopsy is to check the nearby tissue. The biopsy only checked a few samples and there might be something more evil lurking.

    And I really really recommend you continue with your mammograms going forward. I was probably 18 months late before the one in 2016 that found the DCIS. I don't think it would have changed the diagnosis but I believe the area that was impacted would have been smaller.

  • hopedreams
    hopedreams Member Posts: 36

    Hi ladies.. geesh it seems to me that the latest thing is a lumpectomy and not a mastectomy..I am wondering why this is happening now a day..I had DCIS stage 0 6 yrs ago and had a mastectomy with tissue expander & inplant .. no problems with that at all.. was a walk in the park for me..but.... in May 2018 just entered my 6 th year..and went for my annual mammo ultras sound.. and radiologist said..oh my..U have so much DCIS in your breast... [ my real one] Dr wanted me to have 2 stearotactic core biopsies..i refused that because of the pain from the past when i had that done..so she gives me a lumpectomy.. 2 areas were taken out & both were AHD.. then she didnt want to see me for another yr..I insisted I wanted to be checked sooner than later.. so soon I will be going for the tests again.. I really just wanted to have a mastectomy at that time & get it over with..rather than worry all over again.. Also dr did NOT put me on any of the hormones that u gals are on.. Never even mentioned it.. being I am at a higher risk for another cancer..I would have thought a profolatic mastectomy would have been the right thing to do.*****.any thoughts on this would be appreciated.. take care Hope p.s I had NO radiation No chemo..and no targeted therapy..such as the hormones mentioned

  • hopedreams
    hopedreams Member Posts: 36

    HI mufflin I was told by my surgeon recently that ONLY 1 MAMMO IS PERMITTED A YEAR.. I DO NOT KNOW IF THIS IS AN INSURANCE ISSUE OR RADIATION ISSUE.. SHE DID SAY EACH MAMMO GIVES OFF RADIATION.. NOT GOOD FOR THE BREASTS.. GOOD LUCK HOPE...

  • Muffkin78
    Muffkin78 Member Posts: 38

    When I thought it might be DCIS I was researching lumpectomy vs. mastectomy. I guess I was wondering whether insurance would cover a mastectomy - it looked like 10-year-survival rates were the same, but the recurrence rate was less with mastectomy. I also saw in some people's signatures that they had a mastectomy, then would suddenly have a high-stage breast cancer years later (e.g. metastatic).

  • Muffkin78
    Muffkin78 Member Posts: 38

    Kind of mad now that even though it isn't cancer, they still are going to have to do surgery under general anesthesia. And all the medical professionals keep saying "first mammograms are tough". That's an understatement - is everyone who goes for their first mammogram getting scheduled for general anesthesia-surgery?

    Feeling mad. Devil

  • mammalou
    mammalou Member Posts: 293

    I just had surgery yesterday to remove Adh lesion found on an MRI. Hoping it doesn’t have cancer with it.

  • rphouse
    rphouse Member Posts: 2

    I must agree that first mammograms are tough. Found DCIS as a result of mine. Also found a separate location of AHD as a result of MRI. Pathology from lumpectomy found DCIS with the AHD. Unfortunately, I don’t feel like there’s an easy or clear cut decision to be made with these kind of diagnoses. I feel like it’s either do nothing or do too much. I’m about 10 months past dx and still haven’t come to peace with the decisions I made.
  • Muffkin78
    Muffkin78 Member Posts: 38

    Excisional biopsy was clear - no further hyperplasia or cancer. Next is an appointment with the high-risk doctor.

  • momoschki
    momoschki Member Posts: 218

    Muffkin, I’d be curious to hear what recommendations you’ll be given. I got my ADH dx 8 years ago and, like you, the excisional biopsy yielded clear results- nothing further found. There seems to be quite a wide range of recommendations that people in our situation are given. Let us know how it goes

  • mammalou
    mammalou Member Posts: 293

    I just got my excisional biopsy results. It was looked at by 6 radiologists and a consensus board. They decided a possible focal spot of DCIS was atypical apocrine adenosis and a few other benign lesions. They switched me from Letrozole toTamoxifen.

  • Muffkin78
    Muffkin78 Member Posts: 38

    mammalou- that sounds good, no? are you okay with the switch to Tamoxifen?

  • mammalou
    mammalou Member Posts: 293

    I guess I’m ok with Tamoxifen. I’ve been on it before and developed fatty liver and had 2 uterine biopsies. I don’t like the thought of that again since it took me quite a while to get the fatty liver under control. I’ll give it a try and see what happened. I can always switch back to an AI drug if I want.

  • Jlbaker12
    Jlbaker12 Member Posts: 3

    I am so sorry you are going through this. I also was just told today I have hyperplasia, I have 2 kinds of it. Not even sure what that means. There were a couple of things on the pathology report my doctor had never heard of. He referred me to a surgeon that I meet with next Tuesday. I am terrified as well. A 90% chance of my biopsy being nothing just turned into something.

    I really believe that you will be ok. My thoughts & prayers are with you.

  • mammalou
    mammalou Member Posts: 293

    Jbaker12. I hope you get some good answers. I can tell you that there are ALOT of benign things that can come up in a breast. I have about 8 different ones! Try not too worry too much! My son always tells me not too waste my worry and it’s good advice. Let us know how it goes, please.

  • Muffkin78
    Muffkin78 Member Posts: 38

    Jlbaker12 - I know the feeling about being in the "wrong" statistical group. It's kind of frustrating telling close friends because as soon as they hear "benign", they think I'm all set. They don't really get the "high risk" part of the diagnosis. My excisional biopsy procedure went really well. I'll let everyone know what the high risk doctor tells me on Tuesday.

  • Muffkin78
    Muffkin78 Member Posts: 38

    mammalou - I'm curious what dosage Tamoxifen they give you. I noticed some people posting that there have been some new studies on 5 mg/day (rather than 10 or 20 mg/day, which seem standard).

  • mammalou
    mammalou Member Posts: 293

    I am on 20 mg a day. I was told the 5 mg is for people that are taking it preventively and that if you’ve had cancer it is 20 mg. My surgeon said that maybe after 10 years my oncologist would go down to 5 mg. I would certainly give that a try.

  • Catbeag
    Catbeag Member Posts: 4

    I was diagnosed with ADH and am totally confused. I initially went to the GP after finding a lump - this was diagnosed as a fibroadenoma. On US another one was discovered. Not great but far, so good. On mammogram an extensive area of microcalcifications was found not so good. Core biopsy was done, followed by a vaccum-assisted biopsy to "rule out DCIS". When I had the VAB, I asked the consultant (different one at different hospital to my consultant breast surgeon-I'm in the UK but from USA originally), if this was removing all the affected tissue - "no, just a sample". Final consultation - breast surgeon waves the computer screen at me, I see something about "columnar cells" - B3, gets tetchy when I ask questions. I'm quite socially anxious and scurry off, but not completely reassured, despite comments that "years ago, we'd cut these things out, it's fine now" and exhortations to "have a nice life and stop worrying."

    According to the letters to my GP, I had 11 mm of ADH (or atypical intraductal epithelial proliferation, as they prefer here). My understanding anything that extensive was a candidate for lumpectomy? We never discussed any risk factors - number of foci (no idea), age (46), nulliparity (yes), density of breast tissue (no idea), etc. Last week I wrote a letter asking for clarification on these and a few other things (I am sure I'm popular) - my GP was supportive, and despite noting I am a worrier, thought my concerns and questions were entirely justified.

    I was just wondering if anyone had any insights or comments or personal experiences they'd like to share - please feel free to tell me I'm overthinking it, I can take the criticism. But I would also like to have a sensible idea of what my personal risk might be (and stop panicking any time anyone wafts a wine glass in my direction or I choose Netflix over a run).

    Many thanks everyone - this site, and your lovely support of each other was a god send when this all started last fall.

  • Muffkin78
    Muffkin78 Member Posts: 38

    Catbeag - my understanding is that my excisional biopsy (same procedure as a lumpectomy) was not to remove "bad" cells from ADH, but to check a larger piece of tissue to make sure there's no cancer hiding nearby. I think this is the standard recommendation for ADH diagnosed by needle biopsy in the U.S. My understanding is that it isn't termed a "lumpectomy" because of its purpose - again, not to remove bad tissue, but to double-check that there aren't cancerous cells nearby as ADH is, at times, found nearby cancerous cells like IDC or DCIS. The needle/steriotactic biopsy is a small amount; the excisional biopsy is a larger amount to analyze via pathology.

    I haven't had my high risk appointment yet, but will on Tuesday. Maybe others can comment. My understanding is that, in the U.S., I qualify for MRIs (instead of just mammograms, as is the norm here) and it's possible they will recommend other risk-lowering options (nutrition, exercise, lifestyle, possibly tamoxifen as preventative).

  • Muffkin78
    Muffkin78 Member Posts: 38

    BTW, I thought this article gave a nice, recent synopsis of ADH:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC59328...

    The above paper says VAB usually doesn't require excisional biopsy, as more tissue is taken than core needle biopsies: "The surgical excision rate is lower (60%) if the ADH was diagnosed by vacuum assisted biopsy (VAB), since this technique is thought to be more efficient at removing lesion areas than CNB (core needle biopsy)."

    Oh - and here's one on wine and breast cancer risk:

    https://www.ncbi.nlm.nih.gov/pubmed/27039752

    (I find it interesting that they say 5 g/day of wine, which seems to be half a glass per day, seemed to be protective... At my nutrition appointment, they suggested 2 glasses of wine per week, which seems almost in-line with that paper.)

  • Catbeag
    Catbeag Member Posts: 4

    Thanks so much for that, Muffkin78 - I just found the ADH thread and (probably as you were typing) discovered the difference between a lumpectomy and an excisional biospy, and thanks to your response I have a better idea of how those work and the reasons for using them

    I've always had good care on the NHS - but in this situation, I really feel a discussion and going through my pathology report would have been so helpful and reassuring. Get so frustrated with myself for feeling intimidated by doctors.

  • Catbeag
    Catbeag Member Posts: 4

    Muffkin78You're amazing :-) I haven't had time to read them in depth (obvs) but the first one looks like useful for helping me gird my loins for any future meetings with BS - hoping he can give a more detailed explanation of the VAB in my case (quite reassuring - why didn't anyone tell me this???), as well as just simply educating myself. The second one is fascinating about the protective risk (everything in moderation...) and look forward to delving.

    My mum was diagnosed with ADH at my age - and at 77 has smoked, drank, had a terrible diet, is completely sedentary (I still love her to bits) and been fine since. Like another poster on here - what a poor use of irony to have it all go wrong after a life of healthy eating, exercise, no smoking, and low (but much enjoyed) alcohol intake!

    That's been very helpful and informative - plenty to think about and support decision making.

    Good luck next week - will be thinking of you.

  • futura
    futura Member Posts: 14

    Here's an article about ADH and risk following the diagnosis

    Subsequent Breast Cancer Risk Following Diagnosis of Atypical Ductal Hyperplasia on Needle Biopsy

    And below are links to alcohol consumption and health risks/benefits (not only cancer related)-talks about "J curve" in rel/ to benefits of moderate drinking

    https://nutritionfacts.org/video/Is-It-Better-to-D...

    https://nutritionfacts.org/video/do-any-benefits-o...

    This one is about BC and Alcohol Consumption

    https://nutritionfacts.org/video/can-alcohol-cause-cancer/


  • Muffkin78
    Muffkin78 Member Posts: 38

    futura - thanks for the articles! I don't know why, but for some reason I feel better reading as much as I can find. You'd think it'd be the opposite.

  • Muffkin78
    Muffkin78 Member Posts: 38

    Okay - back from my high risk appointment.

    1. I have an MRI scheduled in 6 months, and they recommended yearly MRIs in addition to my mammogram every year.

    2. They gave me a referral to an oncologist to discuss tamoxifen. I definitely want to try it if it's 5 mg/day. I'm wary of trying it if it's 20 mg/day. I'm also not sure if I'll be "disqualified" from preventative tamoxifen because my mom had uterine cancer, but I'm premenopausal and it seems from what I've read that there is no increased risk of uterine cancer in premenopausal women?

    3. Other lifestyle guidelines:

    • Maintain a healthy body weight.
    • Be physically active (150 minutes of moderate activity each week, spread throughout the week)
    • Limit alcohol to one drink/day (*if you do drink alcohol, make sure you have folic acid in your diet*)
    • Eat a healthy diet including lean mean/fish/poultry, limit processed meats, at least 2.5 cups of fruits and vegetables per day, eat whole grains
    • Examine breasts once a month (the week after your period) and observe breasts for changes (lumps, discharge, redness, nipple retraction or swelling)
    • Clinical breast exams with GYN annually
    • Limit exposure to hormones after menopause
    • Stop smoking and avoid exposure to secondhand smoke


  • monarch777
    monarch777 Member Posts: 338

    Muffkin, I'm the same way . The more I can learn about my DX the better. It also has allowed my doctors to talk more openly about my treatment when I can ask pertinent questions

  • Muffkin78
    Muffkin78 Member Posts: 38

    JoE777 - I'm amazed at how not-pushy the medical professionals have been. For both biopsies (steriotactic and excisional), each doctor said it was "covered" but avoided saying "you should get....". Same with my visit today: the high-risk nurse showed me my stats (30-50% risk over lifetime, 4.6% risk over next 5 years) but merely said yearly MRIs "would be covered", not "you should get...". If I wasn't reading, I feel like I'd be making uninformed decisions in favor of undertreating.

  • momoschki
    momoschki Member Posts: 218

    Muffkin, I am curious: any mention made about potential safety concerns regarding the gadolinium contrast agent in the MRIs? Yes had been getting them every 2 years as a part of my regular surveillance program, but at my last appt I expressed concern to my BS, who agreed to eliminate them. Now, of course, I am second guessing that decision. I will be doing 3D mammos alternating with US at 6 month intervals