Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Posted by EJ @elsajohnson, Aug 7, 2018

I am sorry if this is not the right forum. I know ADH is not cancer and this is a breast cancer forum, but I can't find another forum that may be more relevant.

I am wondering if there is anyone who is dealing with ADH or has been diagnosed with ADH that can share their experience. I was diagnosed a month ago. While I am relieved that I don't have cancer, I am confused with the radiology report that shows BI-RAD6 - surgical removal is recommended. I have seen a breast oncology surgeon and I don't think she took me seriously because I don't have cancer. It almost feels like I wasted her time seeing her because I don't have cancer. If ADH is no big deal, why BI-RAD 6 (which i understand is for biopsy proven malignancy). I also read up about ADH online and understand that with ADH, my risk for breast cancer is 4x. Should I not worry about it and just do annual check? Should i see another breast surgeon? Should I see an oncologist? Do I need genetic testing to better understand my risk? I feel like an impostor for even posting this on a breast cancer forum but I am genuinely confused and concerned. Any help will be greatly appreciated.

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cindylb | @cindylb | Nov 26, 2022

In reply to @roroj "Did you take the hormone therapy" + (show)

@roroj

I tried to use the hormones but I wasn't able to, due to side effects. I tried Letrozole, Arimidex, and one other (whose name escapes me now). All of them caused me severe depression and joint pain. After I failed all three.....I requested a hormone blood work up for my estrogen and progesterone and testosterone. I had literally none of any of them (I had been severely limited on progesterone my whole life but didn't know until I had breast cancer at the age of 53 and was post menopausal)....so my breast cancer was estrogen positive 99%. The hormone imbalance, in hindsight, was obvious to me once I had the testing done. I was grateful for the testing because it helped me to see what had been going on for me my whole life. I periodically request the hormone tests to see my status and it's remained....none of those little buggers exist anymore, just traces. So, it's difficult for the breast cancer to grow in those circumstances, but again, I am now post menopausal and that makes a huge difference. Also, I'm not sure my situation is common, where the hormone balance is so bad in general. It has been nine years since my Stage 0 diagnosis and seven since my Stage 1 diagnosis and bi lateral mastectomy, no recurrance so far (thank goodness). I 'think', had I chosen lumpectomy I would have had to try and tolerate the AI's perhaps, but I don't know. Many women I know personally used the AI drugs successfully with lumpectomy and mastectomy.....so it's always worth a try. I tried and failed, but that's just me. Hope this helps. Hugs.

roroj | @roroj | Nov 26, 2022

In reply to @cindylb "@roroj Hello....... The options I was given for my Stage 1 Invasive Lobular Cancer were lumpectomy..." + (show)

Did you take the hormone therapy

roroj | @roroj | Nov 26, 2022

Mine is 0.8 cm with the biopsy . I had mastectomy and the lymph node is negative. So I’m still don’t know which the best treatment for my case my Oncotype is 20

cindylb | @cindylb | Nov 26, 2022

In reply to @roroj "What kind of treatment they give you for stage 1. And what your tumor size" + (show)

@roroj Hello....... The options I was given for my Stage 1 Invasive Lobular Cancer were lumpectomy or mastectomy. I chose a bilateral mastectomy because my Stage 0 cancer was in my left breast and my Stage 1 invasive cancer was in my right. I wanted to eliminate the risk of cancer in both breasts, given my situation of following my cancer for two years prior to the invasive cancer diagnosis. However, lumpectomy would have been a reasonable choice as well - I had lumpectomy in the left Stage 0 breast initially. My tumor size was quite small. I don't remember now the exact size. I was lucky that there was no spread to my lymph nodes and that was my goal, to stop the cancer before it had a chance to grow further and spread. Another goal of mine was to avoid radiation and chemo, which I did. I hope I answered your question, but if you have further questions, please let me know. I'm happy to help and support you. I know how difficult this process can be. Hugs to you!

cindylb | @cindylb | Nov 26, 2022

In reply to @leesal123 "Good Morning! Question for all, I had to take anastrozole for ADH diagnosis but had to..." + (show)

I have some thoughts on this one....boy do I, ha ha!! I have extreme vaginal dryness and I have been using vaginal estrogen cream for a couple of years now. As a breast cancer survivor I worried but most of the current research and my doctors said it's pretty safe - as far as the amount of estrogen that is absorbed into your bloodstream, re: cancer recurrance. I didn't realize how bad your vaginal atrophy can become without it and got a little lax and oh boy....you don't want to do that. You can get (as I have) a prolapse of your bladder into your vagina, so keep after that cream and visits with your doctor on that. Also, I use the brand Replens. I've found it to work for general moisture and relief from the dryness. Also, with vaginal dryness and atrophy you can get more uti's and yeast infections.....yup, I just went through that, so make sure you keep either Replens or another brand, Rephresh on board regularly. If you have severe dryness (which I've managed to have) a doctor can prescribe a topical lidocane cream, in the event you get vulvodynia (pain in your vagina). I hope this helps and I hope you find relief and get a good plan to manage this very common concern. It was a surprise to me and I'm much more vigilant now. Hugs

roroj | @roroj | Nov 26, 2022

In reply to @cindylb "Reply to all with ADH. Almost five years ago I was diagnosed with ADH and Atypical..." + (show)

@cindylb

Reply to all with ADH. Almost five years ago I was diagnosed with ADH and Atypical Lobular Hyperplasia. My mammogram at the time showed microcalicifications. No lumps because that area was lobular and not ductal (lobular tends to make more 'lines' in the breast vs. lumps...tricky stuff.) I had a biopsy and lumpectomy of the area was recommended. The pathology showed ALH. I was put on a six month schedule of mammograms which I followed closely. They called my condition a Stage 0 cancer...as in you might get cancer and you might not. Almost three years ago I was diagnosed with Stage 1 cancer and had a bi lateral mastectomy. Luckily my cancer had not spread to the lymph nodes but it was invasive.
My cancer was harder to follow because ultimately it was of the Lobular type and that doesn't make lumps that are detectable all the time via mammogram. I didn't find my cancer via mammogram (in fact it wasn't seen on the mammogram the day of the mastectomy).....because of the lobular type it was a small area growing in a line of cancer cells (I'm sure that's not entirely medically accurate, but the best way I can describe it). My point being this............
......with ADH and ALH you are finding suspicious breast changes in the earliest stages and it may or may not become invasive and may or may not need further treatment. In my case the Stage 0 was in my left breast and the Stage I Invasive was in the right (again, peculiar to Lobular...it can more easily form in both breasts). I chose a bi lateral mastectomy because I feared not catching the cancer at a manageable stage and in my case that was the best decision. Please make sure you have doctors who take your concerns seriously and insist on complete testing which includes MRI's to detect even smaller changes. I am grateful for the doctors I had with my ADH and ALH because they impressed upon me my increased risk and although I'm sorry I was one of the people who ended up with cancer, I am also lucky that my cancer was caught as early as it was.
My physical therapist, post mastectomy, was a quite young woman who opted for a bilateral mastectomy with ADH. She wanted to completely eliminate her risk of invasive cancer. It was a bold decision but looking back I would have had my breasts removed at my first diagnosis as well, to avoid the worry and fear that one goes through each six months. That's just one opinion. After all, I hoped I wouldn't have more issues and invasive cancer. It is understandable that you are very worried. It's a great 'unknown' and making these decisions is truly hard.
Find doctors you trust, research as much as you can and continue to reach out. No harm in waiting another six months or even a year and continue to push for the best testing you can get. I hope you're one of the lucky ones who ends up with no further problems but if you're not comfortable with the treatment, testing or answers you get from your doctors.......find new ones and make sure you feel assured that your situation is being closely monitored.
Hugs to you!

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What kind of treatment they give you for stage 1. And what your tumor size

Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022

In reply to @leesal123 "Good Morning! Question for all, I had to take anastrozole for ADH diagnosis but had to..." + (show)

@leesal123, that is a really good question and worthy of a discussion on its own. Might you be comfortable starting a new discussion about solutions for vaginal dryness? It's definitely not TMI, but rather a topic that I'm sure many women would like answers for or have tips and solutions to offer.

leesal123 | @leesal123 | Nov 24, 2022

Good Morning! Question for all, I had to take anastrozole for ADH diagnosis but had to stop because of side effects. I am left with extreme vaginal dryness thanks to the med and I guess menopause. What do people use to help? My doctor( GYN and breast surgeon in agreement) has prescribed a low dose vag estrogen cream( pea size 3 x a week), but I need something topical too. I am overwhelmed by the choices on the market and the whole trial-and-error process. Also trying to find one that is paraben free. I wish there was a vitamin one could take! ugh. 🙂 Please know I am not looking for medical advice, just trying to find out what is out there and what has worked for some. I just stare at the aisle in the store and online pulls up so many options. Also, I apologize if TMI but I figure women need to talk about this kind of stuff to get help.

lux7 | @lux7 | Oct 10, 2022

In reply to @confused76 "I’m struggling with my ADH diagnosis that I literally got Xmas eve...found out that I needed..." + (show)

This article may help others "in decisions about the clinical management of ADH" and "whether combined active surveillance and hormonal therapy is a reasonable alternative to surgical excision."
https://ascopubs.org/doi/full/10.1200/cci.18.00083