Does Mayo Clinic have oncologists who specialize in Lobular BC?

There is a FaceBook page for “Lobular Breast Cancer Alliance” and another one called “ILC Sisters: Lobular Breast Cancer Support & Evidence Based Information.” You might join those groups, there is a wealth of information from both professionals that treat LBC and women going through what you are experiencing. I also know that MD Anderson has a specialist in lobular breast cancer, Jason Mouabbi, perhaps you could get a second opinion there? I know sometimes they recommend treatment plan and allow you to receive your treatment closer to home.

Thank you so much, I will check out those sites. I have been working with MD Anderson all week trying to become patient of Dr. Jason Mouabbi. A wonderful lady got back to me yesterday with all of the costs and insurances they carry. Unfortunately they do not take my insurance, I also went down this path with Dr Otto Metzger at Dana-Farber in Boston but he is not licensed for Florida patients. I will be changing insurances January 1st to a more expensive policy but hopefully it will be worth it.
Maybe I'll find somebody else in Florida on those sites you recommended who have found a specialist here in Florida. That would be awesome. Thanks again, have a great day

Hi ic67:
I too have ILC and did not think during the process that I should inquire about whether the radiation oncologist was a lobular cancer specialist. He was recommended by my breast surgeon.

I am 10 months from my lumpectomy, then radiation therapy and am on Letrozole.

What types of information and care are you looking for in a lobular specialist at this point in your process?
Would really appreciate your thoughts and input and please keep us all posted on what you do. This is really important for all of us.

Good morning, I don't think any of us know enough at the beginning to seek out a specialist for lobular. It's through our journey we start digging and learning and finding out our doctors can't answer the lobular specific questions and in my case anyway, they rarely know what I've learned about it. For years the medical community has just lumped lobular in with ductal. I am so glad that you are tolerating let result, that should be a benefit. I am 5 and 1/2 years after bilateral mastectomy, no issues, feeling great, hiking climbing mountains. And the last couple months things have changed a bit and I want somebody who is up on the latest research, what types of imaging have they learned works better to see lobular? What new treatments are there? I've had enough experience with the surgeons and the oncologists I've met so far to know that they are really unaware of the details of lobular and the new research. It's not their fault, they're super busy with all of their patients, when do they have time for this. They are helping a lot of patients with ductal and that is great. As an example, both surgeons I went to wanted to give me a lumpectomy. A lumpectomy for lobular? There's no lump! I did my research and opted for the mastectomy, pathology afterwards showed another area of lobular no one knew about. If I followed their advice it would be growing inside of me without anyone knowing because it's not going to show up on a mammogram. Also, somebody here recommended a Facebook page about lobular, I joined it yesterday and so far I am more than impressed. My question was to find a lobular specialist in Florida and apparently I'm not the only one unable to find this. My personal search led me to MD Anderson in Houston, there is a highly knowledgeable researcher doctor named Jason Mouabbi, I will probably end up traveling to Texas to see him. I hope this is helpful and I wish you all the best on your journey.

I’m at Dana Farber in Boston and do not see Otto M but I’m hoping his insights into lobular are shared! I’m very concerned that lobular lumped in with ductal but we are a small % and ductal gets more research dollars. I had a lumpectomy for a 1.8cm ER positive, HER2 negative back in Nov , radiation in Jan and now on Letrozole. I see my oncologist in 2 weeks for first post surgery mammo and hope I can also get an MRI covered by insurance. Please shares any recent insights into lobular you may learn! Takes a village! Xoxo

https://www.dana-farber.org/find-a-doctor/otto-metzger/

Sorry to hear about what you're going through. It is always challenging and the fact that most breast cancer doctors don't know much about lobular doesn't help. You are so lucky you are near Boston. I wanted to see this doctor so much. He will understand that a mammogram is not the tool to find lobular.
I am finding so much helpful information here....
https://www.facebook.com/groups/Lobular/?ref=share

Also, there is so much research I wouldn't know where to start. I have found a wealth of information from searching these three doctors.

Jason Mouabbi
Otto Metzger
Gary Ulaner, also part of the LBCA group

Google their name and the words lobular research. So many videos and clinical trials and research papers..

I am very thankful these doctors are doing what they're doing, It took a while to find them but they are doing amazing work.

jknows...thanks for the referral, it's very helpful

@ilc67
Did you check Cleveland Clinic? They also have a medical center in Florida.