Connect
← Return to What Dr should I see
Discussion
Comment receiving replies
Thank you for your response. Yes, orthopedic surgeon is part of the Mayo sarcoma team. I’ve been seeing him exclusively for routine surveillance MRI’s, now every 6 months. He referred me to radiation oncologist who treated my R lung with SBRT. I saw a medical oncologist at Mayo once. She only sees those who are candidates for chemo. I’m going in March to see the onc radiologist but would like someone who looks at the big picture. Is an oncology consult outside Mayo a good idea or just deal with the lung tumors with the radiologist? I feel cast out by the ortho Dr but realize his scope is narrow and he’s done all he can for me in the way of surgery. But referring me to local care providers that I don’t have makes me feel like they don’t want to treat me. Mayo in Rochester is a major sarcoma center and the original surgery at the U of MN was a mess. I don’t feel safe returning there. I saw a surgeon who was supposedly a sarcoma specialist and he didn’t know what I had for 2 weeks after surgery, then called to give me the diagnosis and said I had 3-5 years to live. Ugh! Because he didn’t get all the tumor out I had 5 weeks of radiation and a second surgery to remove the surgical bed to be sure no cells were left. I don’t know how to advocate for myself at Mayo, mainly because I don’t know what I need.
Replies to "Thank you for your response. Yes, orthopedic surgeon is part of the Mayo sarcoma team. I’ve..."
I can understand why you feel like something is missing in the team you are working with. It sounds like the ortho surgeon is continuing to head things up with your treatment despite the fact that these new tumors are not in your limbs and surgery is not an option. He/she may feel that adding another physician who specializes in sarcoma is not necessary, but it doesn't sound like he has explained to you why as an ortho surgeon he is still heading up your care. This is when your sarcoma team needs to grow to meet your current care needs. I would check to see if your radiation oncologist specializes in sarcomas and lung treatment. (Most likely he or she does). Then I would not hesitate to call the Mayo sarcoma department and find out which physician you would be referred to for a consultation regarding metastatic sarcoma tumors in the lungs. Once you know who that would be, you can request a consultation with that physician or ask if that physician should now be involved in your current team of specialists. I hope this helps to navigate the situation and I wish you all the best as you fight this next round of treatment.
Connect
Hello....my Wife has been under care at Mayo Phoenix for 2 years. We also had a consult at MD Anderson in Houston. We stayed with Mayo, as we felt more comfortable. I believe if you contact the Mayo Sarcoma office and state you circumstances, they will provide a Sarcoma specialist. As you have had experience with Mayo in Rochester, it should be straight forward. Otherwise you can go to the Mayo website, look at the Sarcoma doctors shown for Rochester, and fill out the requested info under the "Request an Appointment" tab. Good luck in your journey!! ❤️