Any drs treat Breast Implant-Associated Anaplastic Large Cell Lymphoma

Welcome to @uniquetheredmuse. Radiation, surgery and chemotherapy are pretty standard for treating most cancers. I can understand your reluctance to have treatments but if you’ve been diagnosed with Breast Implant-Associated Anaplastic Large Cell Lymphoma over a year ago, it’s not something to be taken lightly and delay could be serious.

I’m sorry you’re having such a difficult time trying to find a specialist who’s familiar with this cancer. You mentioned seeking treatment at Mayo Clinic. We don’t have a campus in Wisconsin. But right next door about an hour west of LaCrosse is Mayo-Rochester. I live in east central Wisconsin and make the 4.5 hour trek to Mayo on a regular basis. It’s worth the trip.

If you’d like to request an appointment at Mayo Clinic, here’s a link for you to their home page where you’ll find the information you need.

Since you’re in WI, have you tried getting an appointment with the university hospital in Madison or Froedert in Milwaukee?

I have been to freidorts & froiderts wis medical collage. They falsified my medicalrecords ie copy n past my mothers , sister-in-law, fathers medical records onto mine syating i had treatment fpr the cancwr because i caught the dr in a lie & said we are done and left. This cancer is so rare 1043 as of march women worldwide have it. Not many drs have even heard of it, ley alone know how to treat it. I know more then they do and they are not even willing to make a phone call to find out about it. Im not knocking their lack of knowledge on, just their arrogance ie im a dr, which makes me a god and you will do as i say or else additude..... i have spent the past yr reading everything on my cancer i can get my hands on & know which systems specialize in it... i still only know the basics of & thats more than they do

@uniquetheredmuse

There are multiple Mayo Health System location in Wi. I think the biggest is La Crosse.

https://www.mayoclinichealthsystem.org/locations
https://www.mayoclinichealthsystem.org/services-and-treatments/oncology#Conditions
https://www.mayoclinichealthsystem.org/locations/la-crosse/services-and-treatments

I would start there, call and request appt and ask if they treat your specific type of cancer, if not, they may refer you to Rochester oncologist that does.

Laurie

@uniquetheredmuse ..don't let state lines bother you.. Rochester, MN is just a short way into neighboring MN.. the best ... I live in Iowa and in 3 hours I can make my appointments..at MAYO MN..

Paperwork is my issue.. just found put my insurance co was denying payments and prior authorization Paperwork for treatment in texas. I have a rare one that doesn't show up in bloodwork, and as of feb, 1043 cases worldwide. I switched & im hoping 2 wks doesn't make much more of a difference since its been a yr. Im only 6.5 hrs from mn. But Paperwork to wis is easier & no prior authorization needed. I just want some kind of life before it comes back in 5 yrs to get me again

@uniquetheredmuse , I have to admit, I had to look up "bia alcl". It does indeed sound very rare. I'm so sorry to hear that you are dealing with these difficulties.
I have a different cancer, but I am treated at one of the Mayo Clinic Heath System locations in Wisconsin, specifically Eau Claire. My oncologist is a generalist (he treats all types of cancer patients), but I have confidence that he is open to the team-approach and will consult with other doctors and specialists as needed, including those from Mayo Rochester. I live in the area, and it's more convenient for me, than Rochester MN.
Are you seeing an oncologist? Knowing if the cancer is growing or spreading may impact your decision to take chemo and/or radiation. Did the diagnosing doctor give you much guidance on what to expect over time?
It may be a long shot, but have you attempted to reach out to the doctors at MD Anderson that are writing the papers and doing the research? Experts in a specific rare cancer may be interested in hearing from those patients and may have guidance on where best to seek treatment, or they may be able to refer you to a clinical trial that thinks outside of the standard chemo/radiation treatment plan.

I ran into a bit of a stalker situation with a dr when first diagnosed. Am getting a restraining order. Eitherway, radiation is not an option. Its spread too far, ive already had a biobsy proving i have it & i know the standard treatment at this stage. I will calleau clair and see if they know how to treat it. If they do im willing to drive up there and get a treatment plan with them overseeing the entire thing. But if they know whatvthe doctors here know, they only read 1 page and decided they know it all. Lol every single case study has been different from each other. I was really hoping a doctor would read it and say yes or no... im to the point of it effecting other organs and i sleep 18 to 22 hrs a day. Insurance switch is a big factor too... yez ive talkex to them at md.anderson. i even have mark Clemens cell phone for doctors. But not 1 was willing to call him... it has been a rough road but almost to an end

Ty