1. < Prostate Cancer

Urologist not wanting to see you if you seek different provider

Posted by jc76 @jc76, Jul 21, 2023

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.

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

jc76 | @jc76 | Dec 19, 2023
In reply to @jamesharrison "jc76: Sorry to hear of your disconcerting and anxiety producing experience with your original urologist at..." + (show)
@jamesharrison

jc76:

Sorry to hear of your disconcerting and anxiety producing experience with your original urologist at the photon facility.

And I appreciate the excellent posts in response to your original story.

Some (or many) of our negative experiences with healthcare in the US is as a result of the lack of a truly national healthcare system. Providers, perhaps including that urologist, are under constant pressure from administrators to bring in the money. It’s also more money in the doctor’s pocket in lots of cases. That’s one reason that brachytherapy is more and more used in Canada and around the world than it is here, because it is very cost-effective.

On the other hand, use of brachytherapy has sharply declined in the US because of that very cost effectiveness! The financial incentives can be very perverse.

The profit motive reigns supreme in so many U.S. medical institutions and doctors— and as a result, medical schools are teaching it less, creating a downward spiral.

If I’m not mistaken, brachytherapy produces a profit to the doctor and/or facility of about $400, compared to something like $2,400 for external radiation.

I feel fortunate to live in SE Minnesota, only an hour’s drive from Mayo in Rochester, where they have several skilled radiation oncologists experienced with brachytherapy. They also have the equipment to offer proton therapy as well. The doctors at Mayo are salaried, so they have no financial incentive to pile up the charges for a patient. That’s one of the best things that Mayo, and it should be that way everywhere in the U.S., in my opinion.

Thanks again, jc76, for your story. I’m glad you were assertive in your determination to find the best therapy for yourself. Each of us,
along with our spouse or another close friend or relative, need to be our own best advocates!

—Jim (jamesharrison)

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Thanks as always Jim!

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jc76 | @jc76 | Dec 19, 2023
In reply to @zenmasterchip "When diagnosed, I started reading everything I could on the disease, including white papers. I asked..." + (show)
@zenmasterchip

When diagnosed, I started reading everything I could on the disease, including white papers. I asked my Urologist so many questions he couldn't answer that he sent me to an oncologist for answers. The oncologist he sent me to also couldn't answer my questions satisfactorily, and he sent me to an oncologist who was a leading local prostate cancer researcher. I attribute my excellent support to my unending list of complicated questions and positing questions they could not answer. (If they would have answered me, I would have been happy.) After discovering they couldn't answer my questions, I asked them if they knew someone who I could talk to for answers. Being good doctors, they felt obligated to send me to someone who could help. It was my intention, and I expected them to refer me to someone. I don't know if this was needed, but it was how it turned out for me. I wasn't going to settle for not getting the answers I needed.

I don't know if this is the formula for getting your advice, but it worked for me. I felt that asking them to recommend someone was the key to getting what I needed.

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@zenmasterchip, You are right on in being proactive and involved in your diagnosis and treatments. You will read almost all of us say asked questions, do research, get second opinions.

At least your doctors referred you to those who they thought could answer your questions. I do not know your provider but again at least they did not make an issue of seeing someone else.

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1 reply
kujhawk1978 | @kujhawk1978 | Dec 20, 2023

Violates rules three and four if rules for my medical team...

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 standard of care.

I have fired two of my urologists along the way. One was the Director of Urology at a NCCN Center, the other in a local practice.

In both cases, I was right. The one refused to consider triplet therapy and the other was upset because while he was away on vacation in Europe and I set in motion a treatment plan with my radiologist and oncologist outside the practice he could not support me.

In the first case he was not an active listener, was welded to the SOC. In the latter , his ego was bruised (and his wallet. .)
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zenmasterchip | @zenmasterchip | Dec 20, 2023
In reply to @jc76 "@zenmasterchip, You are right on in being proactive and involved in your diagnosis and treatments. You..." + (show)
@jc76

@zenmasterchip, You are right on in being proactive and involved in your diagnosis and treatments. You will read almost all of us say asked questions, do research, get second opinions.

At least your doctors referred you to those who they thought could answer your questions. I do not know your provider but again at least they did not make an issue of seeing someone else.

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Thank you. I did not even realize that providers would make an issue of seeing someone else regarding something as critical as cancer treatment. I'm sure my insurance required my GP to recommend the initial specialist. My general practitioner (GP) recommended my Urologist, who recommended my Oncologist. and my Oncologist recommended the Prostate Cancer research doctor. I didn't realize how fortunate I was that I was able to request and get that support. However, if *that* doctor hadn't done it, I would have asked my GP to send me to someone. But I would have had to research that myself before asking. Fortunately, I didn't need to do that. The thought that the system is flawed and that others experience issues horrifies me!

I've moved around a lot with my jobs (before I retired), and I always ensured I found the correct general practitioner (GP) for me when I moved into a new area. In my opinion, the rapport between a GP and their patient is the most important relationship one can establish. My GP would do anything I asked for, including things I did not ask for, while simultaneously questioning my requests and explaining their recommendations and logic to ensure they understood what I was asking them to do or what they were asking me to do and why.

This conversation has caused me to reflect on my history with GPs. I recall dropping one when I was young when we didn't see eye to eye. With my current GP, we joke about being friends who cannot socialize because rules forbid it. I often threaten to find another GP so we can socialize. 😉 I know it's a tough decision, but if I had a problem with my GP or Specialist, I would get another doctor.

Your GP is your first line of defense and represents you to your insurance company. One who listens to the patient and takes the patient's health as seriously as the patient is priceless. The specialist you are directed or redirected to is only as good as the one who recommended them. Usually, that's your GP, or the specialist the GP sent you to.

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jeh56 | @jeh56 | Dec 20, 2023
In reply to @web265 "I have not run into something like this and was all over the chart (pun intended)..." + (show)
@web265

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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it all about the money

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1 reply
michaelcharles | @michaelcharles | Dec 21, 2023
In reply to @jeh56 "it all about the money" + (show)
@jeh56

it all about the money

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Just a comment; it also can be about patient care, consistency and communication.
Not saying that I agree, but I can understand in some circumstances.

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1 reply
jc76 | @jc76 | Dec 22, 2023
In reply to @michaelcharles "Just a comment; it also can be about patient care, consistency and communication. Not saying that..." + (show)
@michaelcharles

Just a comment; it also can be about patient care, consistency and communication.
Not saying that I agree, but I can understand in some circumstances.

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In my case I was told initially told because of the volume of patients. Meaning they had too many patients. When I challenge that through patient advocacy it was if your are treated locally elsewhere would not see me.

I was advised to see the urologist where I got proton treatment. I responded I did not see a urologist at the treatment facility. I saw a oncologist/radiologist who used YOUR medical diagnosis, your DME, your MRI with contrast, your biopsies done by MRI/Fusion and the bone scan. I had all my medical records send to the proton radiation provider. The oncologist/radiologist along with their physics department used my medical information to give me a second opinion and treatment options. The only additional test ordered was a PSMA.

At my ongoing provider since 2006, one doctor said, "I would see someone else." Another said this is not the care team approach we have here and sorry you had to go through that.

I would have had NO problem with being told by this urologist when I saw him if he needed to refer me back to the provider who did treatments if it was appropriate for why I was seeing him. I was asking for routine urology visits and then got another excuse we are a surgical unit.

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