Doc referal to Ongoligist, Frightened

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Ellemche1
Ellemche1 Member Posts: 4
edited June 2014 in High Risk for Breast Cancer

My bilateral biopsy resulted in finding ADH in other breat and fluid filling breat to three times size. Back in surgery for removal of extra fluid, my breast is still swollen and Doctor refered me to an Oncologist.  I do not know what questions to ask, what test are protocol for this situation (ADH located in both breasts, although removed??, and subsequent rare complication of fluid build up)?Does anyone have some information to share?

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  • Ellemche1
    Ellemche1 Member Posts: 4
    edited August 2009

    My bilateral biopsy lead to complications; fluid build up and surgry to remove fluid. Also the biopsy shows ADH in this breast (this is second biopsy,the first located ADH in the other breast). The doctor is refering me to an Ongologist.  I don't know what to expect from the Onogolist.  What blood panels will be done if any, please help me be informed about my health.  I also had Uterine Fibroids.

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  • concernedsis
    concernedsis Member Posts: 256
    edited August 2009

    Hi Ellemche1

     ADH is atypical ductal hyperplasia - it is NOT cancer - it is regarded as suspicious and precancerous. If there are alot of atypical cells they may recommend an excisional biopsy to remove them. The oncologist is going to help you decide if any further treatment is needed. Since its not cancer - I do not know what tests would be ordered. Try to stay strong - knowledge is power. In lieu of that pray like heck!

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited August 2009

    What type of oncologist are you seeing? At many treatment centers there are different kinds of oncologists that handle different phases of treatment.  I had a surgical oncologist for my surgery. I talked with a radiologist oncologist that would handle my radiation treatments. Now I see another oncologist that handles my medications and he would have handled chemo treatments if they were necessary.

    Were you told why you are being referred to an oncologist?  Start jotting done questions as you think of them and then refine the list before taking it to your meeting with the new oncologist. If you get nervous in a doctor's offce or are worried that you may not remember all the doctor has to say, ask someone to go with you to jot down answers. I'd ask if he had reviewed my reports and what he would recommend as the next step in my treatment. Ask if there are any tests that would further clarify you situation. Also educate yourself on ADH so that you will have a basic understading of ADH & be better able to discuss your situation with the doctor.  I

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Elle-----An excisional biopsy is done after ADH to make sure nothing more serious is going on (like DCIS, LCIS  or invasive bc)----usually the recommendation for ADH is close monitoring by yearly mammos and breast exams every 6 months; some oncologists will add tamoxifen for prevention if there is also other significant risk factors, such as family history of bc. Praying you have nothing more serious found.

    Anne

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  • leaf
    leaf Member Posts: 8,188
    edited August 2009

    In addition to the wise words of awb, there are also oncologists who handle 'high risk patients'.  These are generally people who

    a) Have a BRCA or other known breast cancer mutation  (BRCA is by far the most common mutation.) 

    b) People who have LCIS, ALH, and/or ADH.

    c) People who have had previous radiation treatment  of their chest (usually non-Hodgkin's lymphoma) or other high dose exposure such as exposure to nuclear bombs.

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  • CarynRose
    CarynRose Member Posts: 149
    edited August 2009

    Since you are writing on the high risk thread, might I suggest that you contact a certified genetic counselor to determine whether you should test for the BRCA mutation.  If you are BRCA+, there are steps you  can take to reduce your risk of getting cancer to below that of the general population instead of 85%. ADH in someone who has the mutation is different from someone in the general population.

     For more information, check out www.facingourrisk.org.

     \Best wishes,

    ]Caryn

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