Specialists Needed for Primary Breast Lymphoma (PBL)

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cljohnson1
cljohnson1 Member Posts: 2
edited February 2021 in Less Common Types of Breast Cancer

I am in desperate need of finding a specilist for treatment of Primary Breast Lymphoma (PBL). I am finding that this form is so rare it is nearly impossible to find for treatment.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited February 2021

    Hi. So sorry to hear. Have you tried the search function here? What little I've seen about this sub type is chemo would be the treatment. If you let us know where you're located (if you choose) perhaps someone here could direct you towards an oncologist familiar or who has treated this before.


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  • flashlight
    flashlight Member Posts: 698
    edited February 2021

    Hi, My sister in law had PBL and received chemo as a treatment. It was found on her routine mammogram. I think they did send her to a BS who then sent her to a MO for treatment.

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  • cljohnson1
    cljohnson1 Member Posts: 2
    edited February 2021

    I have tried the search function and didn't find anything. Unfortunately, this is so rare (.04% - .5%) of all malignant breast tumors, that this is why it is proving difficult to find a specialist. Chemo and radiation seems to be the majority of suggested treatment with removal not being benificial. I will keep coming up with other key words for the search function.

    Location of treatement is not an issue. Just prefer in the United States with someone who specializes in this rare form of breast cancer. Thank you!


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2021

    So far my research says PBL is a non-Hodgkins B-cell lymphoma. Is that right? If you are in the USA I can look up what experts at what institutions wrote the current National Comprehensive Cancer Network guidelines on this, and maybe you can consult one of them. What state are you in? (PM me if you prefer.) Also, we can check who authored recent scientific papers on this in any country.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2021

    cljohnson1, we are sorry to hear what you and your sister are going through. Do you live near an NCI (National Cancer Institute) designated cancer center? (https://www.cancer.net/navigating-cancer-care/canc...). Perhaps you could start by looking at their specialists at one nearest to you. You may even get information by calling the Cancer Information Service (part of the NCI) to see what they could suggest (1-800-4-CANCER). Here is a more recent article from the Cleveland Clinic, that could perhaps be helpful: https://www.cureus.com/articles/32786-clinical-cha....

    We're here for you!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2021

    Exactly! That article the mods have linked has up-to-date info and tells us that those professionals at Cleveland Clinic are interested in this disease. CC is an NCCN institution. NCCN institutions are the experts' experts in treating cancer, and are where to go with something rare or complicated in particular. This can be for treatment if possible, but at least for a second opinion. Physicians from NCCN institutions write and update the guidelines for various cancers, describing the most recent evidence-based protocols. Here is a map with the NCCN places. But golly, CC sure sounds like a good place to go.

    https://www.nccn.org/members/network.aspx

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