Physicians with Prostate Cancer

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.

@maga

My urologist told me next to nothing unless I asked a very specific question. I was ignorant and did not know if my cancer was aggressive or not. Once I did a little research, I was able to ask meaningful questions but by then most of my treatment was over. When I complained about my awful side effects, he did agree to stop ADT but warned me that he absolutely would not consider testosterone replacement or any other treatment other than what he considered standard. My oncologist was much better but said that my urologist was the boss.

@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.

@handera
I believe you are absolutely right. I am a radiologist who was diagnosed with G9 prostate cancer at age 68. Ended up with limited / oligometastatic disease. Underwent RP, triple therapy and pelvic radiation. I knew about diagnosis /MRI/ CT of prostate cancer since I routinely read those imaging modalities. As an Interventional Radiologist I even biopsied the prostate in the 1990s before the urologists began doing it themselves.

I had a fair amount of knowledge about the disease. So, when I initially heard "G9" and met to T8, I knew what that meant. Like most men on this forum, I went through the usual stages. But I knew who to contact. I had multiple friends who were Radiation Oncologists, Urologists and Medical Oncologists. I quickly got up to speed on treatment options. I was quickly able to get multiple appointments / consultations. My colleagues gave their opinions about who were some of the best in the field. Because of my medical background, I was able to read and understand peer reviewed literature.

I knew it was important to become informed and be my own advocate. Physicians are busy, the healthcare system is large and complex and it is easy to get lost in it. Skill and knowledge among physicians varies widely, no different than the skill of a mechanic, violinist or baseball player. There is a spectrum. Some are brilliant, kind and informed. Some are a little duller, lazy and dismissive. Of course, most are somewhere in the middle.

I have enjoyed reading the opinions, comments and experiences of those on this forum and others. But I don't take medical advice from laymen or even physicians that don't know my history and aren't an expert in the field. I can almost guarantee you that the vast majority of GPs, Internists and Family Practice docs don't have up to date and significant knowledge regarding treatment of prostate cancer. There are a lot of guys on this forum that know a lot more about the disease and its treatment than most physicians. Specialists in other fields like Orthopedic surgery, Pediatrics, etc are virtually clueless. This isn't a criticism; there is too much information is our own fields to keep up on. Doctors don't try to stay current in other fields of medicine because they can't.

Ultimately, I found my MO through reading the literature and then having a Zoom call. He is a very experienced Professor at Johns Hopkins who is extensively involved with prostate cancer research. He only treats men with a certain stage of prostate cancer. I have complete faith in both him and his NP. Although I do ask some questions I do exactly as he advises. There is zero chance I could know / learn as much about this disease and its treatment as he does. He understands I want a certain QOL, my risk tolerance and that I want to live as long as possible. IMHO, if men have to research and direct their own treatment or tell their doctor about new therapies, they need to find a new doctor!

Long winded discussion. But your third to the last paragraph rings true. The major advantage of physicians is understanding / navigating the healthcare system and having insider knowledge of who and where to go to.

I wish everyone the best in fighting this disease. Of all the cancers and diseases I know of, the treatments of prostate cancer can sometimes be as bad as the disease itself.

@retireddoc

Thanks so much for your helpful comments and excellent insights!

We live in a time when knowledge is going exponential in virtually every area of science and technology. Even the specialist must work hard to stay at the cutting edge of their own field.

Every man is able to advocate for himself, a tough enough assignment...but the average layman, diagnosed with PCa, does not have multiple medical contacts or the ability to find, read and understand the pertinent literature to determine (and then obtain access) to the best physicians for their particular stage of PCa.

This is where folks like yourself, and other regular contributors in this forum, are so helpful by providing knowledge and experience.

Thanks again for an excellent contribution to this thread!

BTW: Your last sentence was/is the primary driver of my "proactive surveillance" approach, along with the fact that I have not found that "very experienced Professor". I know my standards are enormously high, but I think I will find the right physician if/when it becomes necessary...

Some of the docs in the video are using estradiol in place of traditional ADT. Just sayin'....