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How to transfer care from Mayo Clinic to local specialist?

Posted by debschmalbach @debschmalbach, Jan 30 9:27pm

I am a patient with metastatic liposarcoma who has been treated in the past at Mayo Clinic but at this time they feel it would be best that I receive services for my latest reoccurrence somewhere closer to my home. My oncologist says she does not refer outside of Mayo and I am at a loss for how to find and get a referral to another center. I live in New Mexico and am willing to travel for treatment. Any one else come up against this issue? Do you have any suggestions? Debi

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Miriam, Volunteer Mentor | @mir123 | Feb 12 12:18pm
In reply to @debschmalbach "That sounds so very stressful. I’m sorry you are having to go through all of that...." + (show)
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That sounds so very stressful. I’m sorry you are having to go through all of that. It’s so hard when you’re already managing a serious illness. I have an appointment at University of Colorado as well because you can fly from Taos to Denver. UNM managed my first tumor back in 2008, but I have not been able to get a quick enough response from them. Do you mind if I ask where you live? Unfortunately, my tumors are very rapid growing. I don’t know if that’s true for you as well, but it just adds to the stress.

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@debschmalbach I'm very happy to hear you can go to Denver. I hope it works well for you. I live in Santa Fe. Yes, the stress of illness and of finding medical care can be huge! Right now I'm stable medically. I hope you have some good personal support--I'm lucky to have my family and my beat friend all here. Will be thinking of you.

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ctflyr | @ctflyr | Feb 12 1:07pm
In reply to @debschmalbach "@ctflyr yes Nexus is what I was thinking of. My oncologist basically told me she would..." + (show)
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@ctflyr yes Nexus is what I was thinking of. My oncologist basically told me she would not make a recommendation to another facility. That I would need to work with that particular facility. Mayor will follow me for check ups, but that seems to be it.

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@debschmalbach
Hi....sorry that Mayo seems to be distancing itself from your care process. I'm not sure how Christus Cancer Center would approach your treatment, and how that would compare to your other experiences. Given what's been recommended for your care going forward, it would be advisable to be affiliated with a strong, nationally recognized sarcoma center, possibly in Denver, which may be closer for you than Houston.

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debschmalbach | @debschmalbach | Feb 12 11:06pm
In reply to @ctflyr "@debschmalbach Hi....sorry that Mayo seems to be distancing itself from your care process. I'm not sure..." + (show)
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@debschmalbach
Hi....sorry that Mayo seems to be distancing itself from your care process. I'm not sure how Christus Cancer Center would approach your treatment, and how that would compare to your other experiences. Given what's been recommended for your care going forward, it would be advisable to be affiliated with a strong, nationally recognized sarcoma center, possibly in Denver, which may be closer for you than Houston.

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@ctflyr
Yes it has been very confusing but my oncology said this is just the way she does things. So there you have it. I think I will end up in Denver. The next two weeks will tell. Thank you for your input.

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debschmalbach | @debschmalbach | Feb 12 11:08pm
In reply to @mir123 "@debschmalbach I'm very happy to hear you can go to Denver. I hope it works well..." + (show)
Profile picture for Miriam, Volunteer Mentor @mir123

@debschmalbach I'm very happy to hear you can go to Denver. I hope it works well for you. I live in Santa Fe. Yes, the stress of illness and of finding medical care can be huge! Right now I'm stable medically. I hope you have some good personal support--I'm lucky to have my family and my beat friend all here. Will be thinking of you.

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@mir123
Thank you very much. I do have a great support network. I feel very lucky that way. Glad you do too. It means a lot. I am so glad you are stable medically. That is really wonderful.

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