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Anyone dealing with Atypical Ductal Hyperplasia (ADH)?
Breast Cancer | Last Active: Mar 20 11:43am | Replies (222)Comment receiving replies
I’m struggling with my ADH diagnosis that I literally got Xmas eve...found out that I needed an ultrasound done a couple of days before Thanksgiving then had it done the day before I was cooking for a slough of people at my house. Biopsy done 2 WEEKS prior to Xmas Eve BUT I’m lucky like that and got them Xmas eve morning!! This was my 3rd mammogram ever since I will be 43 in a couple months..I have ADH and a PASH. In the last year I have had 3 “precancerous” spots removed from a dermatologist and according to the oncologist I have started seeing melanoma and breast cancer go hand in hand. I want a double mastectomy and my mind is firm on that BUT my oncologist and a ridiculously annoying second opinion one want me to do the “chemo pill”-their words not mine- for 5 years of course with tons of side effects that I without a doubt will get!! Had genetic testing done because there is background in that department but it was negative...the unfortunate part of that is that they don’t know what is causing these cancerous cells-again their words not mine! I go this Friday to have the marker placed in the area and then on the 8th to remove the ADH...he will NOT take margins which I don’t understand and I feel as if these particular doctors aren’t doing their job! Said my insurance won’t pay for a double mastectomy and after the 8th I will go to the “cancer prevention center” where a plan will be created for me...chemo pill...I said as much to him and he said “plenty of women take it”. I’m a mom of 2 and 42 who has made my mind up and want a double mastectomy and it boils down to money and I despise these doctors...however, I’m extremely angry at how these last couple of months have played out regardless of the incompetence!!
Replies to "I’m struggling with my ADH diagnosis that I literally got Xmas eve...found out that I needed..."
Terrible and uncaring response, "plenty of women take it." But plenty cannot. Still, why don't you give the meds a try? If they are not for you and the side effects are not tolerable, then absolutely quit. Giving the drugs a try means you know you have explored all the options. They called ADH cancerous cells? Again, terrible and inaccurate! You may get better advice at the "cancer prevention" center. Please share after the 8th, if you wish. One piece of advice I'll share is from a Nurse Practicioner at one of those "cancer prevention" centers who advised waiting a year after an atypia diagnosis (like yours) to see how increased surveillance goes for you over a year's time and to see how you feel about it. Your diagnosis does not require immediate action and it is likely you will have a different perspective after a year--not necessarily a change in your decision, but you'll have a year to digest this upsetting news, do some research, talk to some experts, etc. That will provide a different perspective. Best of luck to you, @confused76. Indeed it is a confusing time when newly diagnosed with ADH.
I am same timeline and same diagnosis. I am scheduled for surgery. I would continue looking until you find a surgeon that will respect your decision. I’m sorry you have to go through this too.
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
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Hugs to you confused76.............You are facing the really hard decisions right now. It sounds like you might want to get a second opinion from another group of doctors. When my husband was diagnosed with terminal cancer (of an unknown source) the doctor we had handled things very poorly. We requested a second opinion and our first group of doctors paid for that meeting (amazingly)....you may not be able to get that 'deal' but your health is too important not to find a doctor and practice group that you trust and to whom you can relate.
Also, you should go ahead with any biopsy and surgery to remove the ADH. Make sure your feelings are known about getting clean margins and request the results of your pathology in writing (I keep all of my records myself and I've learned to read them).
I don't know about melanoma and breast cancer but it does seem to be true that if your body will make cancer of one type it may want to make other cancers as well.
Keep us posted and be assured that by being an active participant in your cancer you can find a doctor who will listen and honor your questions and decisions.