Being treated for Gleason 9

@carbcounter the nearest PET scan is 800KM in Winnipeg, in our local General hospital CT scan is the only available option, and I am worried for going 3rd time in less than a year.

@khabib Have a great trip!

@khabib wherever you are traveling for four weeks - would they have a PET scanner there!?!?!

Clearly the PET scan is the answer everybody knows is appropriate and I fully understand and agree with your concerns about the x-ray - though on second thought some of the newer digital x-ray machines are MUCH lower dose than older ones. It's mostly that high dose or low they aren't going to do the job. Don't know what else I can say that isn't just berating the obvious. Maybe get an appointment with a doctor in Winnipeg who can recommend the PET scanner next door without violating his local rules.

@northoftheborder
This is encouraging.
When Hubby’s GP gave us the news that he has prostate cancer, it felt like a death sentence and that there was nothing much could be done.

Once the oncologist and urologist became involved, there were options. They didn’t sugar coat things, but provided facts and knowledge.
He is so far responding well to treatment. Only just over a month in, but we have hope for duration and quality of life.

Treatment and outcomes have come a long way - something the GP seemed uninformed of.

@canadaanne It’s important to realize that of all cancers men might be diagnosed with, prostate cancer has one of the lowest mortality rates - a very low risk of dying from it. (See attached chart.) Urologist’s are terrible at delivering the news.

(Data are from the American Cancer Society, 2024: https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21820)

(I started getting PSA tests in 2000, was diagnosed with PCa in 2012, was treated in 2021, and now just get PSA tests every 6 months.)

@brianjarvis Thanks!
The urologist was great (as is the oncologist and all the staff at the cancer clinic). It's the GP that we really don't care for (that's an understatement).

@mjp0512 Is your PSA undetectable on the doublet therapy? If so, how will they know where to radiate? I’m asking because my husband is on the same meds as you, his PSA is now .04 and the doc says he doesn’t think any significant lesions will show up if we do a scan. Whereas six months ago four “index lesions” were seen in the lymph nodes.

@brianjarvis Thanks for sharing that. It's very true that when you look at _all_ prostate cancer cases together, most are mild and the mortality rate is low.

However, it's worth noting that until a very few years ago, stage-4 prostate cancer was a different kettle of fish: once you were diagnosed with that — as both I and @canadaanne 's husband have been — you had at most 3–5 years to live (often fewer, rarely, a couple more).

There have been *dramatic* changes in treatment, though, and now many of us have a reasonable hope of living much longer, perhaps even as long as we would have without cancer.

These developments are so recent that not all urologists and oncologists are on board yet, so it's (sadly) unsurprising that a family doctor wouldn't know about them, and would still have "the talk" with someone newly-diagnosed with stage-4 PCa. 😕

@northoftheborder Yes, there has been much advancement in medicine such that Stage 4 prostate cancer may sometimes now be a disease that can be managed rather than a death sentence.

I wouldn’t expect my family doctor to know much about this. My family doctor is a general practitioner; she knows enough about a lot of things, but probably not an expert in one specific field (except for family practice). (I’ve never had “the talk” about this with her. I’ve kept her up-to-date on my status, but she’s not the one that I go to when I have questions on this topic.)

And even with urologists and oncologists - I wouldn’t expect these specialists to be up to speed on the latest of everything. No differently than you or I who were both (probably) very good in our respective career fields, we couldn’t possibly have known everything. (Just like you and me, they have lives to live, spouses, families. and vacations to take, student loans to pay off, and on and on and on……they only know as much as they’ve learned and experienced.)

For me, that’s where this and other support group forums (the 3 virtual support group I attend each week and the 2 in-person support groups I attend each month) come into the picture. I gain insight into what a hundred other guy’s urologists, radiation oncologists, and medical oncologists have told them, and if I hear something that might apply to me that my medical oncologist hasn’t brought up, then I research it and can bring it to her attention.

And yet, even with the great medical advances, it’s still mostly about early and annual screening and early detection. Men still haven’t yet learned that…..

@ucla2025 Not undetectable yet but hopefully soon. Last PSA jumped a little after IMRT, but the sample was taken only 5 weeks after completing radiation. Dr thought the jump was insignificant and possibly due to aggravation by radiation or just standard lab variance. Next test is in about 3 weeks so hopefully down to the magic undetectable by then. We'll see.

PSA is a pretty strong indicator of recurrence. Doc said that they won't scan again until/unless PSA rises a significant amount. In my case, that means a meaningful jump after the next test or a full point or 2 above 0.19 if that turns out to be nadir. Next PSA is significant because it is treatment start plus 9 months. GUO is looking for a new low number (nadir). Fingers crossed.

Ah...Spring. Used to be flowers and nature's rejuvenation. Now in means blood tests. bone scans, and Dr's visits, and back on the edge for watching numbers. So it goes in the PCa world...🤣🤣🤣