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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....
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Flomax (Tamsulosin) is used to treat specific urinary issues (by relaxing muscles); Finasteride is used to treat different urinary issues (by shrinking the prostate). Does he have BPH?
Good morning. I just read your post and the comments. My heart goes out to you and your husband. I fully understand the grief and the difficulty in waiting. We have all experienced it.
I was diagnosed with G9 prostate (aggressive) cancer at age 68 and had a single met to my spine and spread to a lymph node in my pelvis. I underwent radiation to the spine met (killed it) and pelvis (after triple therapy) and had my prostate removed. I then had triple therapy (Lupron/ADT, Chemo/Docetaxel and Darolutamide). My treating Medical Oncologist at Johns Hopkins is much more aggressive than some that stick to standard of care. Hit the cancer fast and hard. My PSA has been undetectable for a two and a half years and I am off all medications except testosterone replacement.
A few words of encouragement. In doing a Google search and reading older literature you are getting a bleaker picture than what current treatments protocols can achieve. There has been tremendous advancement in prostate cancer treatment the last 5+ years. With the newer aggressive treatments the doctors don't yet know the increased survival attained from these treatments because enough time has not yet elapsed. Your husband may well be one of the "responders' to whatever treatment he is going to receive.
If you are seeing a GU Oncologist at UNC it sounds like you are in good hands. I agree with other posters that you need to see a subspecialist treating prostate cancer, not a general MO.
Your husband will almost certainly be put on ADT. This drops the testosterone to near zero within a few weeks. Testosterone feeds the cancer. His PSA will likely quickly drop quickly. The usual side effects from ADT are fatigue, loss of libido, hot flashes. There are some longer term side effects that can be mitigated by exercise-loss of muscle and bone density. Exercise helps the fatigue as well.
My treating doctors didn't discuss the "sex part" with me much at all. Most of us find out as we go along. ADT can unfortunately result in loss of erections. A lot of urologists recommend starting Cialis (or generic) 5mg daily to increase blood supply to the penis. Getting a vacuum pump to stretch the penis helps as well. With lack of use the penile tissue can atrophy; he needs to be proactive. There is a lot of information available on the Internet. Sex is certainly possible even while on ADT. I know you have a lot on your plate and I hesitated to even bring this up. But with the treatments ahead your doctors may not discuss this much. Sex is more important to some than others.
Good luck to you and your husband. This forum can be helpful for support and finding answers to questions or just learning more about prostate cancer and its treatment. Hang in there.
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3 ReactionsI'd like to re-emphasize Steve's warning about Doctor Google. There is so much garbage out there on the internet that it's really easy to get led astray.
For years now, I've tried to convince my wife (who has multiple health issues) to be more discerning in where she gets her online information. "Look at Mayo, look at Hopkins, look at Cleveland Clinic, look at Harvard Med ..."
She has a heart procedure coming up in a couple of weeks, and I was so pleased to hear her tell me this morning, "I was looking at information about the procedure at the Johns Hopkins website, and I have some questions for the doctor."
Tons of "information" out there, but you need to be selective.
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3 ReactionsThe statistics you see on the web about survival rates and durations ate related to cases that often were diagnosed a decade ago or more. Treatments are much more efficacious now than they were then. Your husband (and your whole family) have been dealt a very tough hand. But there is more hope than the statistics show. Look around this forum. There are many examples of people beating the old odds because of new treatments. I’m stage 3 with Gleason 8. Treatment has not been pleasant but neither has it been that awful. Push hard and advocate for yourselves. I wish you the best of luck.
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