Atypical lobular hyperplasia

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NewEnglandlady
NewEnglandlady Member Posts: 1
edited June 2018 in Benign Breast Conditions

I was I was diagnosed a month-and-a-half ago with this benign breast condition. I had mammograms I had needle biopsies I had ultrasound and eventually ended up in surgery would 3 tumors taken out of one of my breast. The surgeon came back and said the pathology said I had this condition and that I needed to be seen by an oncologist as well as being on tamoxifen for five years I have many many many family members with breast cancer and other cancers so I am at a very high risk of getting cancer within the next couple of years. The problem is I can't find it oncologist that treats this condition I have called many Cancer Centers and they all say they only treat people with cancer. Where is someone to go to find an oncologist the treats benign breast conditions. I live in the media Pennsylvania area and appreciate any and all help that I can receive thank you





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  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2018

    As someone who shares your condition, I believe any oncologist can help prescribe you the medication that you seek. I have seen two oncologists so far, both connected with cancer centers. How odd that the gatekeepers won't let you in, since you have no actual cancer--and want to keep it that way. Can you call the oncologist's office directly? Can your family doc get you a referral? Perhaps you should start with genetic counseling, which includes a blood draw, since you mention you have a family history. Oncologists are often tied in with genetic counseling. If you google high risk breast clinic and your geographic region, that could be a start to point you to a clinic that would help with exactly your situation. You might need to first see a nurse practitioner or similar first before getting an appt. with the oncologist, but you'd at least be on your way. This should not be difficult and I am sorry you are having such trouble with what should be a routine appt.



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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    I had ALH nine years ago and had a breast surgeon but no need for a MO. It’s important to keep up with regular mammograms but I’m not sure anything else is warranted.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2018

    One more thought...as part of your biopsy were you assigned a Nurse Navigator? She might be a resource as well.

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  • Bhmomma
    Bhmomma Member Posts: 11
    edited June 2018

    I was diagnosed with ALH and radial scar last summer, had excisional biopsy, no further findings. But when this was added to significant family history, my surgeon referred me to a high risk clinic. I am now followed with twice yearly scans:alternating MRI with mammo, clinical breast exams and have been taking tamoxifen. I go to Memorial Sloan Kettering RISE program. Perhaps you can make an appt to a similar program perhaps at Penn or Fox Chase.

    Best wishes

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited June 2018

    NewEnglandlady, i keep roaming the threads to see what info i could get on ALH. Mine was dx on a biopsy after excision for a ductal papiloma. I have fam History. My daughter was diagnosed in her 20's. BS recommended Dr Julia Smith, NYU. I'd say she's right on the button for me. I am not sure i'll actually go to her, i have an appointment for July, but I'd be looking for that category in different places also.

    Very strange indeed that with your History they don't accept you. Are you from a Jewish Ashkenaz descendancy, you should have the genetic testing, even more because you have family with History of cancer, even if it owuld not have been BC. I am from Jewish Ashkenaz descendancy, but my daughter was BRCA1/2 Palb2 etc...negative, they don't think i or my other girls would have it. But there is such a thing of just having familial History, that in itself puts you at a higher risk. And many non Jewish people have the BRCA gene also.

    As Bhmomma said definitely try a big Cancer Center they should not only understand your concerns, but advise you to pursue it. Also, what's you age bracket, that would be another flag if you are young...Please let us know, we could all learn from each other.

    You said it was benign but what were the tumors?

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