Connect
The waiting is terrible
My husband just got diagnosed with stage 4 prostate cancer.
This is how it started.... He's 55 and in good shape/ works out and eats right etc. The last year or so he's had urinary problems or frequencies and ED, but all of last year was super stressful, he lost his job and his parents passed away after he/we were taking care of them (in their 90s) He finally went to the doctor and thought he just had enlarge prostate etc and wanted it checked out. PSA was 251!! Then that triggered him getting a CT scan two days later and that showed cancer and in the lymph nodes (googled it and it shows stage 4 or 3), met with a urologist a few days later and he confirmed LATE stage prostate cancer (stage 4) but want to do a biopsy, which he got gone a week or so later and Gleason scores were mostly 8 and 9s and groups were 4 and 5s....referral to oncologist still, then in the meantime the PSMA PET scan two days ago and at night the results showed heavily in the lungs, lymph nodes, bones, skeleton, pelvic area etc...(again we google stuff and knew it was bad) we can't see the oncologist until 10 days from now! the waiting is terrible!!
We don't even know if they can do anything!!
The only symptoms are frequent peeing (or at least trying) about every hour and ever since this started I noticed a slight cough, nothing major but I immediately thought LUNGS (and was sadly right)
Just really sad....
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Thanks for this. I'm in tears reading all this...
My husband's fear is being a burden, I tell him he will never be that, we're married, I've seen him naked plenty of times and will help with whatever.
My gosh this is a good timeline of events.
-
Like -
Helpful -
Hug
2 ReactionsI understand that. I was worried about being a burden too — I had always seen myself as the one helping other people, not the one being helped. But even when I couldn't get out of the hospital bed, I found that I was still helping people by listening to them, giving advice (when asked), and so on, and I also learned that it was OK to be the one who needs help sometimes.
Realising that people love me just because they love me, and not because of what I can do for them, is one of the biggest gifts that cancer gave me. It's a hard lesson for many men to learn: I hope your husband discovers it as well.
-
Like -
Helpful -
Hug
2 ReactionsWanted to add one more comment, be careful of Doctor Google. I found out the hard way a lot of the info is years old. The hard way being it shook me up some. I found this site and there are so many sharing the same boat. This site has been a blessing for me, so much compassion and support to us all. Ask any question and someone will relay their story to help as best they can. I wish the best to your family on this journey. Best to all.
-
Like -
Helpful -
Hug
6 ReactionsSo sorry to hear about your husband’s stage 4 prostate cancer. (I was diagnosed with low-grade, localized prostate cancer at 56y; had been getting PSA tests since I was 45y.)
Regarding his difficulty urinating - have they prescribed him either Tamsulosin (Flomax) or Finasteride?
With the PSMA PET scan results, what were the SUVmax scores assigned to each of those suspicious areas? Knowing that, you won’t have to wait 10 days to ask the oncologist what’s going on.
These days there are always treatments available for most any stage of prostate cancer. Use this time to get up-to-speed on his diagnosis, any other tests that might be useful, as well as treatment options.
Prostate cancer diagnoses and treatment is one of self-advocacy and shared decision-making. The more informed you are, the more specific questions you’ll ask, the better treatment options he’ll have as a result, and (hopefully) the outcome will be better.
It’s easy to get overwhelmed; don’t let it happen. Stay focused on the ultimate goal.
===========
His situation can be a lesson-learned for others, his siblings, as well as for any children (males or females) you and he have:
> being in good shape, working out, and eating well can be helpful at minimizing the occurrence of prostate cancer, but not significantly.
> early PSA screening and early detection is critical. (When did he start getting annual PSA tests?)
> prostate cancer usually has few if any symptoms when detected early, and depending where the lesions are, may not be significant at all. (It’s never a good thing to let new symptoms drive testing. By then, things may have gone too far.)
Good luck.
-
Like -
Helpful -
Hug
2 ReactionsJust to build on what Steve wrote, even a recent study might be based on much-older data, and a lit review, even more so. So if you see a publication date like 2020, don't assume that they're actually talking about what the situation was like just 5 years ago; they might be reporting on a trial that started in 2008, or (if a lit review) analysing secondary data in other papers that are themselves 10+ years old, based on data collected 20+ years ago.
So much has changed in prostate-cancer treatment recently that any research paper based on observations collected before (say) 2018–20 has little to do with our survival prospects now, even if it was just published and is helpful for researchers and practitioners in other ways.
-
Like -
Helpful -
Hug
2 ReactionsMy heat goes out to you both and so young
-
Like -
Helpful -
Hug
1 ReactionI suggest to read Dr Walsh's book. I ordered a copy, it arrived this past Friday.
-
Like -
Helpful -
Hug
1 ReactionYeah he's taking flomax and it's not doing anything. He's always exercised and eats right, now he's more strict with his diet and supplements. We're researching as much as we can so we can at least somewhat be prepared for the oncologist appointment.
I got the latest edition copyright 2023. The co-authors were top oncologists @ John Hopkins. The third co-author has been writing about prostate cancer for 30 years.
-
Like -
Helpful -
Hug
1 Reactionsomeone might have already suggested this, however, I recommend to also use perplexity.ai. it costs $20 a month to use pro version. it is helpful by providing links to research papers (pud med articles) among other stuff. you can also copy paste test results and ask it to explain in lay man's terms. i found it very helpful.