ADH questions please

pattimay

My surgeon called me a few weeks ago with my 6 month followup mri results.  I had two surgerys in less than two years for extensive Adh and alh to a lesser degree.  He said although the radiologist suggested another biopsy he explained my history to him and it was downgraded to birad 3.  With my first two mri's I had went to the hospital but this time went to the radiology center which was much less costly.  My surgeon explained that my adh is so extensive that he would never get a clean margin and took all he could take without losing too much of my small breasts.  The area was slightly smaller from last mri but of course that was from the second surgery I had in December.  I'm a little concerned that this adh is still sitting there.  Surgeon yelled at me that I still didn't take the Tamoxifen.  I had the bottle sitting there and was going to start on my birthday last week and again became fearful.  I asked my surgeon if any of his patients with adh did not take the Tamoxifen and still had B9 results a few years later.  He scared me by saying he has never ever had a patient with as much adh as me.  I started thinking only when I got home that if it's that extensive shouldn't it be called DCIS?  I'm very confused about this.  Also I complained some about the pain I have constantlynow under my armpit .  My adh is is at 12 o'clock but the pain is closer to side of breast more under the arm.  Feels always like a swollen node.  He gave me a thorough breast exam and said the scar and everything looks great.  Has anyone else have extensive adh in one breast and also anyone with pain 6 months after excisional biopsies.  The surgeries were only three months apart.  Would scar tissue produce pain.  But it wasn't put in the mri report that I had any scar tissue.  So greatful for this forum..

mdoak

Wow! for one thing, your surgeon shouldn't yell at you. Have you considered getting second opinions? First, on the pathology -- adh and dcis are very close -- and second, from another surgeon? I'm not sure why your history would make him LESS likely to biopsy -- I would think it would make him MORE likely to biopsy anything new or suspicious. If I were you I'd take my films and scans and have it all looked over by someone fresh.

vmudrow

Pattimay - sorry about all your problems.  When I was diagnoised with ALH a year ago - I didn't want to take Tamoxifen so after careful consideration (I also didn't want the worry, the constant testing and biopsies) I chose to have PBMX.  I have been happy with my decision.  Keep us posted on how you are doing.

Hugs, Valerie

Anonymous

pattimay------ADH and DCIS are determined at the microscopic level, not from the amount of it that is found in the breast.  ADH is an increased # of abnormal cells lining the duct (a precancerous condition); while DCIS cells are actually cancerous cells. So it is determined by the pathology of the cells themselves, not by how much is found throughout the breast. (it is possible for a person to have lots of ADH without having any DCIS)

Anne 

lightning

Hey Pattimay - I have had multiple excisional biopsies for ADH and I have frequent pain in the affected breast.  It is not unusual.  I have a lot of scar tissue from the biopsies.  So I wouldn't worry about that. 

I don't know where you live, but you may wish to consider calling a breast care center which deals with high risk patients.  Even if there isn't one in your town, I would not stay with a doctor who "yelled" at me.  And I've never heard of a doctor leaving ADH alone because it's too extensive. If you don't want to change doctors, at least get a second opinion.  Good luck to you!!