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tomlinaz (@tomlinaz)

Soft-Tissue Masses Not Diagnosed

Blood Cancers & Disorders | Last Active: Aug 23 11:30pm | Replies (20)

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Hello @tomlinaz, I can ‘hear’ the frustration in your voice as you write! With all of your testing to try and figure out what could be causing all of your symptoms, have you been seen at a larger medical institution such as a teaching hospital? You mentioned Mayo Clinic and hoping to see an orthopedic oncologist. Have you been evaluated at a Mayo campus for any of your previous testing?

Mayo uses a collaborative approach to medicine and doesn’t just limit to one speciality at a time. I’ve been on the receiving end of this interdisciplinary care where there were definitely some, what I felt were, “outside the box” and Herculean efforts to find an answer for me.
When you’re paired with a specialist it’s like having a general contractor. That doctor then brings in other specialists as needed to get to the bottom of the issues. It was an amazing experience to not have any chest thumping or egos displayed. Each on of my doctors are at the top of their fields and all work flawlessly and seamlessly together to get the best results and care for their patients.

From what you mentioned it sounds like you’re in the Phoenix area.
Here’s a link to the Mayo home page where you’ll find the number for the Phoenix campus. Give that number a call and a coordinator will take your information and get the process for an appointment started.
When is your MRI scheduled??

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Replies to "Hello @tomlinaz, I can ‘hear’ the frustration in your voice as you write! With all of..."

Thanks, Lori. I've made many trips to Mayo Clinic Phoenix and have seen many doctors there. I've even been to the Rochester campus a few years ago, along with Scripps near San Diego CA and the MD Anderson group associated with Banner Health in Phoenix. I think the issue is, as I mentioned, is that the specialists I really need to see to get a diagnosis are specialists I can see only if I have a diagnosis. It's been very helpful getting feedback from this community. I will keep hoping that something breaks in my favor soon. If nothing else, then maybe the thigh MRI really will find something (scheduled for May 18).