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 ?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

If he can't get you an good explanation of the nature of those final remarks. I'd get to a well known treatment center for an evaluation of the current situation and some explanations of what your original treating doc left you with.

To my way of thinking, what he did or didn't do well at this point is secondary. Getting your health care on track and the situation clarified is the primary concern.

Hopefully your is PSA is stable and low and you can do this at your own time/schedule.

My salvage radiation was 39 shots, I forget the numbers but something like the first 29 ish were prostate bed and lymph node area that was sort of at risk. The last 10 ish were just the prostate bed. He may be saying either his equipment was not functioning as it should, or it's outdated equipment. Either way, that's something he should have told you going in.

"Is this the appropriate ' standard of care ?" I doubt it. That often hinges on "informed consent" if he didn't tell you before you were treated that he couldn't treat you effectively, informed consent wasn't really there. That's a personal opinion, I'm not a doc or a lawyer.

Was you PET negative? or were there locations identified? If suspicion was cast on the lymph nodes with that scan and he couldn't treat those and didn't tell you , yeah, that's pretty bad.

Best of Luck going forward!

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Well, my initial impression is hell no...

That being said, not sure what you mean by "after the radiation was over the radiologist told me he could not finish it..."

I've had three separate radiation treatments, while the SRT was SOC, 39 IMRT to the prostate bed, the other two were based on imagining, a C11 Choline scan and more recently a Plarify scan. In both cases, my radiologist used the imaging to build the treatment plan. That plan was submitted for peer review for approval. She used 3D software applications to build the treatment plan and then the delivery was adjusted based on real time imaging built in to the delivery machine.

As to the comment, "do you believe in God..." that's not germane to the decision making process, science is.

I'd throw the BS penalty flag on his comment "His final remarks" secondary treatment area covers an at risk lymph node area that cannot be encompassed by the initial treatment ports ." Heck, I'm not even sure what he means, today's radiation planning and delivery software and equipment is pretty sophisticated and should be more than capable of treating what imaging shows.

Is there a hospital patient advocate you can talk to?

You may want to consider legal help, perhaps a state medical practice board.

There's too many skilled radiologist to accept treatment you describe.

Kevin

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solidwater: where did you have your treatment, what was your gleason and psa and did you get more than one opinion outside that institution? It sounds as if things fell through the cracks. If you have not gone to a center of excellence, like Mayo, you may want to do so for re-imaging, diagnosis and potential additional treatment.

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Agree the treatment was in Fairbanks. Alaska . Fairbanks Memorial Hospital, . The radiologist Dr Essam D .Shihadeh . He is the only radiation oncologist and I think not honest or equipped for the task. I have gone for at least two opinions . They agree in that I have to do something . They all had a similar response, mainly that the horse is not quite out of the barn and one plan is to finish this next and last three months of lupron . Stop all cancer treatments watch the PSA. Look he knew he made a bad mistake and would rather I fall off a cliff .

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@web265

If he can't get you an good explanation of the nature of those final remarks. I'd get to a well known treatment center for an evaluation of the current situation and some explanations of what your original treating doc left you with.

To my way of thinking, what he did or didn't do well at this point is secondary. Getting your health care on track and the situation clarified is the primary concern.

Hopefully your is PSA is stable and low and you can do this at your own time/schedule.

My salvage radiation was 39 shots, I forget the numbers but something like the first 29 ish were prostate bed and lymph node area that was sort of at risk. The last 10 ish were just the prostate bed. He may be saying either his equipment was not functioning as it should, or it's outdated equipment. Either way, that's something he should have told you going in.

"Is this the appropriate ' standard of care ?" I doubt it. That often hinges on "informed consent" if he didn't tell you before you were treated that he couldn't treat you effectively, informed consent wasn't really there. That's a personal opinion, I'm not a doc or a lawyer.

Was you PET negative? or were there locations identified? If suspicion was cast on the lymph nodes with that scan and he couldn't treat those and didn't tell you , yeah, that's pretty bad.

Best of Luck going forward!

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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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@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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It sounds like you need to fire that guy and find a center of excellence with more than one radiation oncologist/radiologist who knows what he or she is doing and has done it many, many times. I realize that Fairbanks AK is a location that makes it difficult to go elsewhere. It might be worth the trouble and expense to fly to MSP and seek help at Mayo Rochester. You could send images and lab results to Mayo in advance, do some initial consults via telehealth, and then get in-person appointments in Rochester. Another option is the excellent cancer care consortium in Seattle. Good luck and don't hesitate to advocate for yourself!

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thank you I took your advice and did contact the Mayo Clinic . I will also visit the Seattle Cancer Care Center .

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@lag

It sounds like you need to fire that guy and find a center of excellence with more than one radiation oncologist/radiologist who knows what he or she is doing and has done it many, many times. I realize that Fairbanks AK is a location that makes it difficult to go elsewhere. It might be worth the trouble and expense to fly to MSP and seek help at Mayo Rochester. You could send images and lab results to Mayo in advance, do some initial consults via telehealth, and then get in-person appointments in Rochester. Another option is the excellent cancer care consortium in Seattle. Good luck and don't hesitate to advocate for yourself!

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Agree 100% with @lag. See better care and Mayo Rochester is a gold standard to go to. Decades of experience, excellent hospital, and great care. I don't think you could do any better than Mayo Rochester.
@solidwater You can set up a medical transfer of your medical records and test to Rochester and a second opinion. I would strongly suggest doing that.

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@solidwater, I'm glad that you contacted Mayo Clinic. I'd also like to bring @jimcinak and @voc into this discussion who traveled from Alaska to Mayo Clinic for prostate cancer treatment.

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@colleenyoung

@solidwater, I'm glad that you contacted Mayo Clinic. I'd also like to bring @jimcinak and @voc into this discussion who traveled from Alaska to Mayo Clinic for prostate cancer treatment.

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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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