The long middle stretch

WOW this gives us all hope WTG.

I'm really glad for you. You've been super helpful to me and many others here and it is much appreciated. Wishing you the best.

Thank you, everyone. Your posts and stories have been important to me, too.

One of the worst things about cancer is how cut-off it can make you feel from everyone else. For a couple of years I was able to get together with my childhood friend who was diagnosed with lymphoma at the same time, and we'd talk about cancer, joke around, have a pizza lunch with a bit too much wine, etc.

Unfortunately, his treatment options weren't as good as ours are with prostate cancer: the cancer moved to his pancreas, the last "Hail Mary pass" with CAR-T didn't succeed, and we lost him last year at age 61.

I have a good support circle of family and friends, but there are somethings that only other people with cancer really understand. So I'm glad I found this forum, and thanks to all of you. ♥️

"Would you please consider providing some details about your current diagnosis."

Certainly. I was diagnosed stage 4 oligometastatic with a spinal lesion at T3 in 2021 (PSA 67). MRI, CT, and a bone scan showed no other metastases. The lesion rapidly compressed my spine until I was paraplegic, and it was 9 months before I could use a walker for short distances, and a year and a half before I could walk without a cane.

I had emergency debulking surgery on my spine to decompress it, 20 gy of post-op SBRT radiation therapy to the spine 4 weeks later, and 60 gy of SBRT to my prostate 6 months later (which caused some mild radiation proctitis and cystitis).

I started on Degarelix (Firmagon) and Apalutamide (Erleada) 2 or 3 weeks after I was diagnosed, while I was still in critical careb(I switched from Firmagon to Orgovyx six months ago). I think they recommended Erleada partly because it doesn't give an initial testosterone surge (which was important in my precarious situation at the time). With the surgery, initial radiation, and medication PSA fell rapidly to 19 in a month and undectectable (< 0.01) in less than three months, where it has remained for nearly 3 years — this happed before I had the radiation to the prostate itself, which was just for extra safety.

Nobody can say for sure what my long-term prognosis is, because my treatment is too new to have long-term data. The TITAN study for Apalutamide and ADT didn't reach median overall survival after 4½ years, and that included much-more advanced cases that mine, so that's a good sign. My previous radiation oncologist said other patients who've responded as well as I have to treatment (in general) have sometimes gone 10 years or more with progression to things like chemo.

Initially they had told me to expect to live about 5 years (7 at the outside), with progression in 18–24 months. Now, obviously, they've modified that considerably, and they no longer even try to give me an exact number; just "lots of years."

I hope that's helpful. I can't give you any more-precise info because prostate-cancer treatment is advancing faster than they can collect data on it.

"Lots of years" is good, and your post gives me lots of hope, too. So, maybe I shouldn't blow all my retirement savings on a summer home and a new car... at least not yet.

Yeah. I did one upgraded flight to Europe, but it's back to economy class from now on — I have to make my savings last after all. 😉

Here's to "long stretch of indeterminate length" , for you and all of us. 🥃

Absolutely! This article last spring in Scientific American — shared multiple times in the forum already — suggests that if advanced prostate cancer hasn't already shifted to being a chronic disease (one that can be managed indefinitely, like HiV/AIDS), it's getting very close:
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/
Obviously it's just a magazine article, but I'm getting the same vibe from my medical team. They don't want to make promises yet — data is always backward-looking, and it will take years to collect enough to be sure — but there's a new confidence underlying the way they talk about our disease.

The biggest issue is that the new best practices and treatments we get at U.S. Centers of Excellence or Canadian multidisciplinary Cancer Centres haven't disseminated everywhere yet, so you might be getting old information and old treatments from some doctors at your local hospital (or not, depending on whether each individual has kept up).

Again, no promises, but it's *definitely* worth getting a second opinion from a multidisciplinary cancer research centre if your local urologist tells you you have terminal prostate cancer. The landscape has changed drastically since the 2010s.

Bob here, question your gleason mines 9 5+4 ,did you have surgery? I've only had 6 chemo and was put on ADT.
Thanks good thoughts too all

I had radiation instead of surgery (I understand that surgery is rare when the cancer has already spread).

Radiation itself isn't automatic for stage 4 — the old-school thinking was that stage 4 was "terminal", so the focus should just be on keeping us comfortable for our remaining years instead of subjecting us to procedures with negative side effects — but since my cancer was oligometastatic (just one metastasis) and my cancer team was up on the latest research and best practices, we decided that radiation to the prostate was worthwhile to help head off future metastases, so I got the full 60 gy (a "curative" rather than "palliative" dose). I have not had chemo, but it might be in my future if the cancer becomes castrate-resistant some day and new metastases pop up.