For the Newly Diagnosed: If I Were to Start Over

Very helpful post! Thank you and God bless !

Well said!

Good summary!

From my slightly different view, my doctor’s responsibility was to successfully treat my disease. Prostate cancer being one of self-advocacy and shared decision-making, it was my responsibility to bring to the table my goals, my priorities, and my (informed) opinions as to whether the treatment path they were recommending was in-line with that.

There were at least a half-dozen decision points where we weren’t in agreement on the treatment path. When their argument was stronger than mine, we went with their recommendation; when mine was stronger than theirs, we went with my recommendation.

I appreciated them being up-front with me by putting all their “treatment” cards on the table. That allowed me to put all my “goals and priorities” and other cards on the table, analyze the situation, and determine if, when, and how we should proceed with my treatments.

Each person is different. It’s my nature to be assertive (without being overbearing). Being a retired computer scientist, it’s also my nature to be analytical and methodical (sometimes to a fault).

As for your radiation oncologist’s statement to “hit this cancer so hard that it will never come back,” I recall a quote (paraphrased) in Shakespeare’s King Henry 4th, Part 1 - “Discretion is the better part of valor.” (Caution is preferable to rash bravery.)

Your radiation and ADT dosages should simply have been in line with your diagnosis. There should have been no need to argue up or argue down.
> what was your diagnosis (PSA, Gleason, etc.);
> what type and how much radiation did you get?
> was 18 months of hormone therapy the appropriate amount? (Undertreatment can be just as problematic as overtreatment.)

The radiation proctitis is a similar issue. We spent much time (many months) discussing how we would minimize the risk of radiation-induced adverse side-effects. As a result, I only had 1 day of radiation-induced adversed side-effects during treatment (something that neither of us foresaw); we treated it immediately and then continued on.

We also took early steps to minimize the adverse side-effects of the hormone therapy (Eligard). We tracked my testosterone level closely, and once it began returning, the few hormone therapy side-effects I did experience subsided.

As for dying from the disease (i.e., “to live seven more years without dying from prostate cancer”) —> Of all cancers that a man might get, prostate cancer has one of the lowest mortality rates. Dying from this disease has never seriously crossed my mind. (Here I am now 14+ years later; life goes on.)

Hopefully others will benefit from your lessons learned. To add to those:
> start PSA testing early (~45y/o) and annually;
> if diagnosed with prostate cancer, don’t panic; relax, breathe, get informed.

Then they’ll have the mindset and information to choose the right Center, treatment, specialists, etc.

@brianjarvis I think the primary issue was naively choosing a generic oncology practice, treating perhaps 20 different cancers. There's no way for the oncologists to stay current on the best treatment protocols or standard of care. I went for a second opinion, but only after all my radiation and a year of ADT when I was arguing with my MO for a change in treatment. I had to press my PCP to include annual PSA testing due to my age ("stop testing at age 70"), and I would have been better served to be referred to an urologist a year earlier. While prostate cancer can seem rather "benign," it's still second only to lung cancer in killing men each year. Because mine was beginning to spread, there was additional concern. I try to keep in mind that it's my health, not the specialists', and they keep practicing regardless my outcomes. Thanks for commenting and congratulations on your ongoing health successes!

Excellent points.

I was nearly 20 years younger than you when I had a de-novo diagnosis of metastatic prostate cancer, so there was a lot of remaining life left at stake, and maximising treatment was obviously the right choice for me (it's worth putting up with a lot to win back ~30 years I thought I'd lost).

But when you're older and your natural, non-cancer life expectancy would have been much smaller anyway, it makes sense to balance other things, like maximising the quality of your remaining years.

The challenge, as @jeffmarc has pointed out, is that untreated or undertreated cancer doesn't necessarily let you slip away peacefully. It can cause you to spend your last months or years in agony and/or constantly drugged up. So there's a lot to balance.

Good points from all. I think the most important thing any man can do that is diagnosed with PC is slow down. Don't be rushed into either surgery or radiation. Educate yourself (knowledge is power). And most important is to get 2nd & 3rd opinions preferably from a cancer center of excellence. Even if this means traveling to a bigger city where most are located. Your life depends on it!

@jime51 Those issues certainly do create challenges for a new patient having to jump through all the hoops.

I started getting PSA tests when I was 45y and was diagnosed 12 years later. In my case, after spending years (on active surveillance) studying and evaluating various treatment options, I selected proton radiation for treatments. I searched for a center that had expertise and success in treating any solid tumor cancers (including prostate) with proton radiation; and it needed to be a teaching hospital and a research hospital. (As well as within a reasonable distance and also covered by my medical insurance.)

I then searched for a radiation oncologist (RO) within that system who I could work with, and then a medical oncologist (MO) to manage my hormone therapy. (As it turned out, the RO and the MO were in different hospitals.) Basically, I assembled my own team.

If I hadn’t agreed to a treatment protocol pre-treatment, we never would’ve started and I would’ve sought out another provider. Once started, everything was already settled and agreed to. (I was 65y when treatments started; I’m 71y now.)

I sought out 2nd opinions for both my initial and my final biopsies.

It’s true that there’s no way for the oncologists to stay current on all the best treatment protocols or standard of care. That’s the value of doing personal research and learning from groups such as this one.

“Stop testing at 70” is a recommendation, not a hard and fast rule (https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening). Simply having PSA added to the other blood assays being tested annually isn’t significant.

Prostate cancer is second to lung cancer in the number of men dying each year only because of the large number diagnosed - not because of the chance of dying from it. Once diagnosed, the risk of dying from prostate cancer is only about 12% - and that’s heavily weighted to those with late-stage disease. (When my brother was diagnosed with pancreatic cancer in August 2024, he had an 80% chance of dying from it; he died in October 2024.) So, from a public policy point of view, prostate cancer has much greater impact due to the numbers. But from an individual point of view, I’d choose a diagnosis of prostate cancer over one of pancreatic cancer any day of the week. One is almost always a death sentence; the other isn’t. (Note that cardiovascular disease kills 10x more men annually than does prostate cancer.)

It’s always a good thing to catch prostate cancer well before it begins to spread. Otherwise, the %s change.

@brianjarvis I think I jumped too fast into treatment. There’s so much more to life than longevity, but I am sorry for your brother‘s loss. I‘ll misquote this, but “it’s not just the number of breaths in life but rather the life in each breath.”

The center of excellence advise seems good but we also need to cut ourselves some slack. Unless you are doctor that specializes in prostate cancer it is rare, if not impossible, to get up to speed enough to fully comprehend the risks and select treatment. I was dx about 13 months ago and have no where near the knowledge of some on this board but more importantly the standard of care has shifted somewhat regarding ADT and new alternatives are being studied even in that short time period. I went with prostatectomy and then had recurrence within months and now just finished radiation and am on ADT. Would I do things differently if I knew that in advance? Probably. But I could not know that in advance and we make the best decisions we can with the information we have at the time. I am so thankful for a place like this where can share our victories and losses. And Jime, doctors at Centers of Excellence can be a mixed bag at communication also.

@dhasper
You are right just because you go to quote a “center of excellence “ does not mean that is the answer. It has to be a physician of cancer dealing with specifically prostate cancer and not a general oncologist dealing with cancer.