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Topic: Specialists Needed for Primary Breast Lymphoma (PBL)

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Feb 11, 2021 02:17PM

cljohnson1 wrote:

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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Feb 11, 2021 02:25PM ctmbsikia wrote:

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.


Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Feb 11, 2021 02:52PM flashlight wrote:

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.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Feb 11, 2021 02:56PM cljohnson1 wrote:

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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Feb 11, 2021 03:14PM - edited Feb 11, 2021 03:14PM by ShetlandPony

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.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Feb 11, 2021 04:18PM Moderators wrote:

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!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Feb 11, 2021 04:50PM - edited Feb 11, 2021 04:55PM by ShetlandPony

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

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy

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