Physicians with Prostate Cancer

Dr. Paul Schellhammer Who is in this video comes to almost all of the weekly online Ancan.Org Advanced prostate cancer meetings. He answers questions a lot of the time when issues come up that a doctor can help with. A good source of information in the meetings.

What surprised me was that they seemed to react to their diagnoses no differently than any random guy on the street would.

I went into that presentation thinking that each of them would have a logical, practical, data-driven approach to dealing with their diagnostics, and treatments. But no, they each reacted across the same broad spectrum as anyone else after hearing the “PCa” word. (Was a little disappointed, to tell you the truth.)

@brianjarvis They're really no different than the rest of us. Same feelings. Probably thought they were bullet proof when they were young too. I would say their reactions are very human as they understand the potential of the struggle that lays ahead of them.

This was a great session. Thank you guys.

@brianjarvis

Understand your comment.

I’m sure all these physicians, before their diagnosis, generally knew more about the prostate than the “random guy on the street”.

However, all except the retired urologist, were quite unfamiliar with what some of the more seasoned members of this forum know, regarding PCa screening, mpMRI test methods, the nuance of various treatment options and evidence based active surveillance interventions.

This has been my experience with the GP’s I’ve talked with, since my PCa diagnosis.

It’s not all that surprising when one considers the absolute enormity of all generated medical information regarding each part of the human body.

The major advantage all these physicians seem to have was their ability to quickly determine who, where and how to obtain the care that best aligned with their own goals and risk tolerances.

My main takeaways were that “one must advocate for himself” and the best physician is one who fits PCa disease care to the patient and not visa versa.

IMHO my last takeaway is the most difficult task a man will encounter when beginning his own PCa journey; therefore it’s even more critical to be your own advocate.

I have found my urologist to be rather stoic and aloof, as well as not really open to “other” options. For instance, he said the decipher test was useless. Under my post on orgovyx, I quoted him and I felt he was somewhat dismissive of my asking/complaining about hot flashes. It is what it is I guess.

@brianjarvis
At the weekly online ancan.org advanced prostate cancer meetings, one of the doctors that shows up at almost every meeting is now in his 80s and has had a very serious case of prostate cancer years ago. His physician looked at his PSA test and as it was rising, told him everything was OK, never recommended he see a urologist to be tested until it went up considerably. He ended up with a Gleason nine and a very serious case. He was not a urologist and had no real knowledge about prostate cancer.

My wife’s best friend‘s husband is a OB/GYN. 25 years ago, he came up with a Gleason six and he searched all over the country for a doctor that would do nerve sparing, which had just Begun being done. He didn’t realize that he should not have done anything at the time. The doctor that operated on him, Welch, Didn’t do the nerve sparing and did a half page write up on what was done during the surgery. My friend was used to seeing 10 page writeups about what was done during OB/GYN surgery. After the surgery, his biopsy of the prostate showed that he was really a 3+2, it was so minor he just didn’t need the surgery at all. To say he is angry is to put it mildly. He flew across the country to get the best doctor only to find out. He had average treatment that wasn’t even necessary. Another doctor one would think should have known better, but didn’t really have any knowledge about prostate cancer.

@handera

Most urologists will go with the standard 20-year-old treatments because if they deviate to something new, they open themselves to lawsuits that could destroy their careers. The latest and best treatments have an uphill battle before they become standard treatments. In the meantime, men suffer and die while something new is better and available.

@pesquallie

Understand where you’re coming from, especially for physicians who are only willing to fit their patients to their own view of PCa care (which may well be only a strict subset of standard of care protocol).

A believe a good physician makes a determination of their patient’s level of anxiety and risk tolerance and fits their PCa care to their patient’s bent.

In my case, I was immediately upfront with my first urologist…I was much more concerned with the short term risk of negative treatment side effects than the longer term risk of untreated low risk PCa.

I also fully understand that others may completely disagree with my POV, which is absolutely fine with me.

If I was concerned about what may even be the “majority consensus”, I would have never been involved with making 30 patents.

I also fully understand the person who simply can’t live with a cancer that may be growing within them and whose only question is what treatment to choose and can I get it done next week.

I think the thoughtful physician can accommodate the entire spectrum of folks…from those with a hard core AS mindset to the man who wants every reasonable treatment implemented immediately.

The patient, whether consciously or unconsciously, determines the approach the thoughtful physician will recommend or mutually agree to employ.

The real question is where to find such a thoughtful physician, who’s fully in tune with your particular bent.

I had a worst experience with my urologist. He did not divulge anything after I had a biopsy. He just came into the room, looked at the report and started to walk out the door. I said I have some questions. I asked him if I had metastatic prostate cancer. He said yes! I then asked him two more questions. He became very angry and said" I DON'T HAVE TIME TO SPEND AN HOUR ANSWERING YOUR QUESTIONS! I fired him and got another urologist.