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Urologist not wanting to see you if you seek different provider
I have excellent care at my provider. However when diagnosed with prostrate cancer they did not offer proton radiation therapy that my primary doctor said I should consider.
So I went through consultation with photon oconcolgy and proton oncology. Both agreed the cure rate was identical.
However at Proton consultation I was shown research and computer diagrams showing less radiation damage going in, surrounding, pencil beam ability, and virtually no radiation damage to tissues, organs, body going out as it does not go past the prostrate. Photon radiation entering, at prostrate and continues out through body.
It seemed to me that if one treatment could lesson radiation damage to healthy tissue and possible lesson secondary cancer it would be a good choice. I was not pressured at all at Proton Facility just showne a lot of research and given medical sites to do research on differences so I could make an informed decision. This was not the case at the photon facility.
So my primary care doctor (who was with photon care hospital/clinic) and I decided on proton treatment at a different provider.
I then ran into my original urologist (who was at institude that has only photon radiation ) saying would not see me after treatments of proton were done due to volume of paitents and would only see those who had radiation treatment at their facility.
I was not seeking treatment just consultation and advice after treatments over and follow ups done. Thought I could get second opinion on ongoing care, treatments and anything new.
I was not under the care of a urologist at proton facility just oncology/radiology. They used the original urologist (who refused to see me again) MRI and biopsies to set up treatment at proton. The only additional test done at proton was Pet Scan. At this proton insitute they only do proton radiation and are not a medical facility like where my urologist was at. If I needed to see a urologist at proton institute during treatment, after treatment they would do a referral.
Anyone run into this? It is just not something I needed after the anxiety over having prostrate cancer and expecting a "what can we do to help" attitude as have been an the original urologist institute for almost 20 years.
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I have not run into something like this and was all over the chart (pun intended) when I started treatment. Myself, I'd say "C-ya" to the urologist if I was doing the treatment outside of this practice/partner practices. What's possible is that he's not really familiar with the treatment and doesn't want to be trying to answer questions about it nor treat anything it causes because of this. (that's the good possibility)
The other possibility is he doesn't want to spend the consult/exam time with someone he isn't making treatment cash off of.
My advice would be to ignore him in your decision process, if you like him and decide to go with what his practice can do, stay.
If you are leaning toward the other treatment seek another primary urologist or perhaps a center of excellence which will bring the different disciplines together to add to your opinions and knowledge to help you decide what is right for you.
Either way, I'd likely remove his influence from my decision. Knowing what I know now, (two years in) I'd go somewhere that the most modern treatments are available and the medical professionals work as a team.
Best of Luck to you!
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4 ReactionsThanks web265. Excellent advice.
I finished my proton radiation treatment on July 5th. I went there based on what was latest and safest treatment available in my area. I think your comments on why this particular urologist did not want to see me anymore was right on.
I just had not run into this "can't see me you had a procedure done at a different provider" by any other care giver at the clinic I was going to. It was opposite of all other providers I was seeing. Their feedback was, "let us know what we can do to help." And they did.
I should like you suggested just remove him from my decision making on after care and second opinions. He did mention volume of patients.
It is just hard to deal with cancer and all the pre testing and procedures, then treatments, then side affects to run into a care giver that could have done so much more to help verus what was told to me. Could have seen me and given advice and second opinion which is what I was asking for.
I think sometimes they forget the anxiety and worry you are under and certainly don't want things like this. I was even told we are surgical unit so I guess that means don't want to do consultations or second opinons.
Want to thank you for your excellent advice.
On this go around, my urologist too affront to me seeing a radiologist and oncologist outside his practice group and said he could not "help" me because the two systems, aka, health portals...did not talk to each other...I looked in the eye and said:
OK, your ego is hurt because I was proactive and sought and obtained care elsewhere.
The correct response based on your hippocratic oath should have been - let me know how I can help...
So, this relationship doesn't work for me, while you are in affect "firing" me, likewise, I am doing the same.
Oh yeah, when asked by fellow travellers in this journey about you, I will not be recommending you...
I was already beginning to tire of him, my visits were perfunctory, he spent more time"charting" than he did looking me in the eye and talking during our consultations, their portal sucked as did his notes from our visits and the final straw was when a critical PSA test took over a week to get the results. I found out they misrepresented their lab, implying that they could do my labs vice having them done outside the practice. When I finally tracked down the results, they had sent the vials to Quest, who had sent them to the west coast (keep in mind, I'm in Kansas City).
Looking back, he was not the type I wanted on my medical team based on "my rules"...
1. Please know your stuff. As a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack.
2. Please do your homework. I expect you to have reviewed my medical records prior to my appointment. You have looked at my x-rays; you have my pathology report; you know how many children I have. In the world of cancer care, every scrap of data must be scrutinized for its significance.
3. Respect my point. of view. Leaders listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I am sure you can help me to feel confident about the plan you have shaped for me.
4. Be curious. Do not close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Please rid yourself of the temptation to make your day easier by delivering perfunctory care.
5. When it’s decision time, decide! If you think treating my cancer is not worth it; if you think I am at the point where I should stop chemotherapy; if I have veered off the path you have cleared for me—then speak up! Care for me with a dogged determination to get me healthy and do not keep any secrets that might lead to regret. I want an oncologist who knows what is best for me and doesn’t chicken out in difficult times.
6. Be responsible. Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.
7. Talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions? Leaders welcome scrutiny of their communication skills. No one cares if a flunky is curt.
He's not the first I've fired, a Director of Urology at a NCCN Center and a major North American Urological Association did not actively listen to me and wanted to deliver standard of care vice specific treatment , I told his PA when I left, I won't be back.
So, right now you need a radiologist and oncologist, you have time to find another urologist that meets your rules for being a member of your medical team, not the other way around!
Kevin
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10 ReactionsIt’s an EGO issue. When I was diagnosed my best friend, who is a doctor, and my wife, wanted me to get a second opinion. Before I got it, I spoke to my urologist and let him know that I did not need a second opinion and that I did not want to lose him. He told me: “ I do not have that personality. Who do you want to see?”. I told him to choose a doctor for me to see. I still see him, trust him and I am planning to stay with him. He has been great. Outstanding physician without an EGO. That’s him.
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1 ReactionThanks I thought I was the only one who had to deal with this and was not common. The urologist was what I described but ran into the oncologist/radiologist at same provider telling me no additional benefit to proton versus photon radiation treatment. I knew the cure rates were same but many medical professionals, hospitals, clinics all promoted proton radiation as it had less radiation going in, stop at prostrate and did not go through body past prostrate like photon did. Thus the benefit was less radiation damage to healthy tissue and organs as well as ability to do pencil beam.
So I did chose the proton institute that was honest and provided pros and cons of each and provided tons of research and web sites to retrieve information so I COULD make an informed decision and chose what was best for me based on research, information, etc. I like the professional attitude and had my treatment done there.
I think your rules are outstanding. It is sad that some medical professionals do not have nor continue with the rule you mentioned about "what can I do to help."
Thanks and best of luch to you also!
Personally, after a lifetime of being seen by urologists, I find 90% of them to be ... not good people.
Frankly, I just threw the 90% out there, but I’ve never actually met a competent one.
But I read things that show that there are a few smart ones with morals out there.
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2 ReactionsBravo Kevin! Well said. Thanks for posting.
Excellent, very helpful post. Sad to see it seems to be more common than you would think, If you don't mind me asking, what proton institute did you choose and were are they located?
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1 ReactionI waited until I had healed from my surgery to tell my sister about my cancer. Told her also of my BCR risk factors and that I could need salvage radiation someday. She told me to talk to her friend who is a retired radiation oncologist with 45 years experience. With my risk of BCR his advice was simple: "stay on top of your scheduled PSA testing and consult with an RO. You are done with your surgeon as the next PC treatment I might need would be radiation." I consulted an RO at Huntsman Cancer Institute and they took over my PSA testing. Later I was diagnosed with very low testosterone and saw my original Uro to discuss treatment. He needed my current PSA results and was angry when he learned I had gone to a different doctor. He said "I see you're going to Huntsman, explain that to me! We took out your prostate, is there a problem? " I told him about my sister's friend's advice and he said " I guess it's OK since a family friend told you to do that. " I haven't been back to see him since. I will seek medical treatment wherever I desire.
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