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What Dr should I see

Posted by maggie55410 @maggie55410, 6 days ago

Need advice. Had excision of LMS tumor in saphenous vein in L thigh in 2020. Poor margins. Repeat surgery at Mayo in 2021. NED until last year. Now tumors in both lungs. Had SBRT to R lung tumor 2024 at Mayo. Since have had surgery for infected prosthetic knee at Mayo and sepsis leading to open heart surgery in Mpls for infected prosthetic aortic valve. Returning to Mayo in March for scans and figure out how to treat left lung tumors. I don’t have an “oncologist “ at Mayo, only orthopedic surgeon who treats LMS and radiologist who delivers radiation treatment but no one looking at big picture and determining next steps given my numerous other health issues. When I asked my Mayo orthopedic Dr. who I should be seeing he advised me to use my local medical team. I don’t have a local sarcoma provider and want to stay with Mayo. How should I proceed?

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lauren53 | @lauren53 | 6 days ago

Let me just say you are a true warrior for all that you have endured! I was diagnosed with WDRLS 2 years ago and had an extensive surgery to retract an 11 lb tumor, so I know first hand how important it is to have sarcoma/oncology specialists involved. I am wondering if your orthopedic surgeon is a sarcoma specialist? I would check their bio on the Mayo website to see what he or she specializes in. The orthopedic surgeon may have a sub-specialty in soft tissue cancer related to the limbs. Since the new tumors are in the lungs it may be worth consulting with an oncologist that specializes in sarcomas for a second opinion on treatment options or just for additional clinical support. In the end, this is about your health and peace of mind.

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maggie55410 | @maggie55410 | 6 days ago

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.

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2 replies
ctflyr | @ctflyr | 5 days ago
In reply to @maggie55410 "Thank you for your response. Yes, orthopedic surgeon is part of the Mayo sarcoma team. I’ve..." + (show)
@maggie55410

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.

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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!! ❤️

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jeshaw6801 | @jeshaw6801 | 5 days ago

https://connect.mayoclinic.org/member/00-c15714f69359af0a258761/
You should be getting what you need at Mayo but does not sound good so far.
Don't know where you live.
The best sarcoma center in the nation is M D Anderson in Houston. You deserve a oncology team: One that addresses chemo, radiation and surgery.

I'm in Cleveland area and go to Seidman Cancer Center at University Hospitals with Dr Ankit Mangla , oncologist There is Cleveland Clinic nearby and I would recommend Dave Shepherd, oncologist

It does not hurt to get a second opinion.Lots of them do virtual meeting

Btw I have R-LMS. 1 scan NED.

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lauren53 | @lauren53 | 4 days ago
In reply to @maggie55410 "Thank you for your response. Yes, orthopedic surgeon is part of the Mayo sarcoma team. I’ve..." + (show)
@maggie55410

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.

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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.

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1 reply
jeshaw6801 | @jeshaw6801 | 3 days ago
In reply to @lauren53 "I can understand why you feel like something is missing in the team you are working..." + (show)
@lauren53

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.

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Mayo has a great article on second opinions
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion

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