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Appropriate standard of care or just poor treatment? What can I do?

Posted by solidwater @solidwater, Mar 6 11:41pm

I was diagnosed 23 months ago. I am confused, After the radiation was over the radiologist told me he could not finish it, that is to say his equipment was not up to the task. His final remarks" secondary treatment area covers an at risk lymph node area that cannot be encompassed by the initial treatment ports " . He asked me what kind of agent my psma pet scan was employed. I had to find this out for him. The final conversation after radiation included the question " do you believe in God " My understanding was that he never looked at the pet scan and now is deciding he could not treat it correctly. Is this the appropriate ' standard of care ?

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jimcinak | @jimcinak | Mar 18 10:49am
In reply to @solidwater "sounds good to me I did send m records to Mayo Clinic Friday, 3/15 Along with..." + (show)
@solidwater

sounds good to me I did send m records to Mayo Clinic Friday, 3/15 Along with a cover letter. I did not engage in any treatment bashing, rather take the position, ok you did your best, thank you. Now is the time for another phase of treatment. My opinion is there are whole lot of highly experienced and all I am doing is trying to move on from a small town clinic. The time is right and I have some confidence that the local establishment did their best and it is time to build on that initial plan. Coleen thanks for a very helpful outreach. I need all the help I can get . Fortunately I do have enough resources to engage with the Rochester clinic. I gather it is not a farfetched effort ! I welcome your input highly.

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Solidwater,
Sent you a private message; lets be in touch. I’ll share my experience going to Mayo Rochester and can connect you with a friend who went to Seattle Cancer Care Alliance.

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ziggypop | @ziggypop | Mar 18 11:06am

Solidwater, I've been silently following your delima. All I have to say is there are many charter flights from Alaska to Minneapolis in the summertime. That means a large drop in airfare costs. Delta had a main hub and Sun Country usually offers charter flights to MSP. Rochester is then 90 minutes south of Minneapolis and Mayo has transportation available as well as satellite clinics in the Twin Cities. Good luck and you're correct in that as humans we make mistakes. Doctors also.

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proftom2 | @proftom2 | Mar 19 3:16pm

Good idea to arrange a second consult. I've had to do this a couple times on my advanced prostate cancer journey. I request having a "my treatment plan review" one a year. Really helps my cancer education process.

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solidwater | @solidwater | Mar 19 5:30pm

thanks yes I can understand the importance of consistently refreshing the ' plan'. I trusted the first one and it did turn out to be a mistake, not because they were so negligent ,they just did what they wanted to do and no input from any other source. I am pissed and disappointed that I have to go through the process again. they may not have meant it but the treatment missed its mark. so here I am ! A little wiser

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adp3d | @adp3d | Mar 20 9:00am
In reply to @solidwater "hi My PSA has been .01 for almost 21 months . I am now starting in..." + (show)
@solidwater

hi My PSA has been .01 for almost 21 months . I am now starting in on the last 3 months of lupron. He did not offer any advice regarding the idea of out dated equipment, I can say I already know it was the wrong equipment it should have been SBRT and he used IMRT a very different approach as I am told . There was no informed consent he did not mention any of this leading to the treatment . He had my current PMSA Pet Scan to go by and from the dialogue I had with him he never looked at it. There were locations identified. There was 1 suspect lymph node. The region was mentioned in the final conclusion .

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Not only should you "fire the guy", you should look into suing him. He took money, knowing that it probably wouldn't work for you. Other potential patients need to be protected from him.

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