Anyone dealing with Atypical Ductal Hyperplasia (ADH)?
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.
Interested in more discussions like this? Go to the Breast Cancer Support Group.
Margo, welcome. Choosing between a lumpectomy vs a mastectomy is a big decision. You may be interested in this related discussion:
- Preventative double mastectomy https://connect.mayoclinic.org/discussion/preventative-double-mastectomy
If I may, I might suggest discussing the pros and cons of mastectomy vs lumpectomy with your surgeon. Ask questions about the possible benefits vs risks. Does a mastectomy mean that you will be "done with it"? While that may seem logical, is it true in your case? Your surgeon can answer those types of questions tailored to your preferences.
Thank you!
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
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.
@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.
What kind of treatment they give you for stage 1. And what your tumor size
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 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!
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
Did you take the hormone therapy