My latest appointments(s)

I am so sorry to hear that.

If you feel like sharing the details (and fully understandable if you don't), you might find others here with similar diagnoses who heard the same thing at first and then had it retracted.

I don't want to hold out false hope, especially because I don't know your details and am not a medical professional in any case — there are definitely still situations when it's time to start making your peace — but "5–7 years" seems to be the standard thing they tell all of us for any stage 4 metastatic prostate cancer diagnosis (that's what they initially told me in 2021, with progression to chemo etc expected within 18–24 months).

But for *some* advanced prostate-cancer situations, things have changed dramatically in the past 5 years or so, with new treatment strategies (including treating stage 4 aggressively with so-called 'curative' rather than palliative intent), the recognition of "oligometastatic " as a separate category, and new miracle drugs like the -lutamides (Apalutamide, Enzalutamide, etc). Not every clinician is up to date on these, so try to get to a multidisciplinary research clinic like an American "Centre of Excellence" or a Canadian "Cancer Centre."

In my case, they're talking about *maybe* 10+ years before progression now, and by then there will probably be even more miracle drugs treatments. I was diagnosed at age 56 and told it was unlikely I'd see 65; now I'm 60 and still in full remission (with the help of cancer drugs), so I'm back to retirement planning, and have a not-entirely-unreasonable hope of dying of old age some day instead of prostate cancer.

YMMV. DM me if you'd like my email or phone to talk more. It's a dark time for you right now, and many of us here have also been through it.

They are making good progress with new treatments for PC and you, like me and many others on this page are waiting and hoping for new treatments to prolong our time. 40 months ago I was told that I had 4-5 years. I am hopeful for more than that and I presently feel good!

I know people that were given five years and are still around more than 10 years later. I’m wondering if you asked enough questions.

Where are you being treated? Is it a center of excellence? I know people who are stage five prostate cancer and they are getting chemo regularly They didn’t say you should have chemo. Is there no chance that Pluvicto might help? I’ve seen x-rays of people that have shown metastasis all over their body and after having even one Plavicto treatment almost all of the metastasis were gone. It doesn’t work for everybody, but it does work that well for some.

It sounds like you don’t have neuroendocrine cancer or they would’ve given you one year. Did they tell you that your cancer does not produce PSMA so they can’t see it on a pet scan?

Did they tell you what your Gleason score was? It’s a 10. It’s very aggressive, but not untreatable.

To give you 5 to 7 years means there’s something there that’s not going to get you right away. Prostate cancer is very slow growing, but that time frame makes me really wonder what they are seeing.

Can you provide us some more information about what their diagnosis was?

Hello and thank you for your sympathy!
I have started feeling discomfort on the edge of being painful in my stomach and groin areas. Also, I have been getting tired a lot more. I had a short stint of about a month where I felt pretty much like I had recovered. That quickly changed to starting to feel minor discomforts mostly in my groin area and that quickly spread to the stomach area. They said the lymph nodes are pretty much completely covered with cancer, they said.
I am very glad to hear you are in remission and hopefully feeling a lot better. I will message you as it might be easier and quicker to talk on the phone.
Tom

@thomaspmccoy I saw from your past comments that you had a gleason 7: 3+4. I am so sorry that you had that kind of news. If it were me, I would get another opinion outside of the institution you just worked with, like Mayo. Even if it is Mayo, you might want another center of excellence opinion via telehealth to get a feel for types of radiation that may help and types of treatment that may be suitable for you so you can make some level of comparison between treatments and side effects.