Does Mayo Clinic have oncologists who specialize in Lobular BC?

Posted by ilc67 @ilc67, Sep 28, 2023

My search continues. The doctors I have found so far who really get ILC (few and far between) are out of state. Now 56, 5 1/2 years after Bilateral mastectomy, never had a scan, was on Tamoxifen followed by Letrozole for less than a year. I could not tolerate side effects.
I moved this year and cannot find a new oncologist who knows lobular. I do not want to go to someone who doesn't understand how different it from ductal in imaging. long term treatment. I have a strong family history, (aunt died, g-ma DMX in 40's) I have searched MC's website but cannot find an ILC specialist in Jacksonville.
I would greatly appreciate and help.
Prayers to you all going through this as well.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

ilc67 | @ilc67 | Oct 14, 2023

In reply to @hollyng "The oncologist is Kostandinos Sideras." + (show)

Thank you so much for your reply, it is a Medical Oncologist I would need now. I looked up Dr. Sideras, I reviewed all of his publications but there was no ILC mentioned anywhere. It's been almost 6 years for me with only 1 type of blood test done every 6 months. There is a wealth of information on LBCA, it's all about Lobular. I will 100% confident with my next oncologist who is actually on their board now, they are up to date on all the latest information on ILC.
Thanks again and the best to you on this journey.

noodle | @noodle | Dec 19, 2023

Is there a lobular breast cancer specialist at Mayo clinic in Rochester? Is there a medical oncologist you’re working with who appears to know lobular breast cancer? I am from Madison Wisconsin and have not been able to find a medical oncologist knowledgeable about lobular breast cancer . When I asked directly for lobular specialist, Mayo simply gives me their canned answer that all their doctors are equally skilled in all types of breast cancer. NO.
Any help or direction in finding a lobular specialist at Mayo clinic in Rochester. would be much much appreciated.

windyshores | @windyshores | Dec 19, 2023

In reply to @noodle "Is there a lobular breast cancer specialist at Mayo clinic in Rochester? Is there a medical..." + (show)

Otto Metzger at Dana Farber specializes in lobular. Maybe his office could refer you more locally. https://www.dana-farber.org/find-a-doctor/otto-metzger

noodle | @noodle | Dec 19, 2023

In reply to @windyshores "Otto Metzger at Dana Farber specializes in lobular. Maybe his office could refer you more locally...." + (show)

Thank you for the info I’ll keep searching.

gardenfairy | @gardenfairy | Dec 20, 2023

In reply to @noodle "Is there a lobular breast cancer specialist at Mayo clinic in Rochester? Is there a medical..." + (show)

I'm sharing a list of medical oncologists at Mayo Clinic in Rochester. The fact that considerable breast cancer research is done at this teaching hospital makes it more likely the medical expertise you're looking for may also be found there. The doctors all benefit from the research being done as well as advances in treatment. You will notice each MD on the list has an Area of Focus. If no Area of Focus is listed, click on their name and check the left column for their Specialty Groups. You will also see their Biographical Summary of experience/expertise/research and the Conditions Treated. https://www.mayoclinic.org/diseases-conditions/invasive-lobular-carcinoma/doctors-departments/ddc-20373980

Here is the list of surgical oncologists: https://www.mayoclinic.org/diseases-conditions/invasive-lobular-carcinoma/doctors-departments/ddc-20373980

Wishing you all the best!

Colleen Young, Connect Director | @colleenyoung | Dec 21, 2023

In reply to @noodle "Is there a lobular breast cancer specialist at Mayo clinic in Rochester? Is there a medical..." + (show)

Hi @noodle, Mayo Clinic, at all locations including Rochester, has experts specializing lobular breast cancer. You can submit a request to find out more here: http://mayocl.in/1mtmR63

I'm also tagging fellow "lobsters" as Lisa says - members living with lobular breast cancer, like @lisakinpa @mtt @ssmab @jackiestack @ssmab @hollyng to share their experiences.

At Mayo Clinic, you have the advantage of a team of experts in lobular breast cancer not just a single physician.

noodle | @noodle | Dec 21, 2023

In reply to @colleenyoung "Hi @noodle, Mayo Clinic, at all locations including Rochester, has experts specializing lobular breast cancer. You..." + (show)

I tried to get mayo to tell me who if anyone is a lobular specialist, and the only answer I got back was that all the doctors are equally skilled and treating all types of breast cancer.