Hi everyone, my husband was diagnosed last week - I’m still in shock and feeling overwhelmed with all the information that’s out there. We’re hoping to discuss his treatment plan tomorrow with his team - we’re in the UK, he’s 60 next month, has no symptoms, T3b and G(4+5)9. My question is what advice would you give to someone just starting out on this very scary journey. I think we’ll be steered down the surgery and hormone route because it’s so aggressive but should we consider other less invasive options? What has been your experience? What would you do differently with hindsight? TIA
Wife of recently diagnosed Advanced PC - Advanced Prostate...
Wife of recently diagnosed Advanced PC
In the UK radiation is performed more often than surgery. I think radiation will be recommended. You did not mention the PSA value nor the result of a CT and bone scan. If not done yet, a CT and bone scan will be done to see to what extend the tumor has spead. The doctors will probably recommend hormone therapy. You husband may enroll in the STAMPEDE trial für high-risk patients. Many patients do that.
PSA is 8.3, not had CT scan, not spread into bones. How can he get enrolled on Stampede trial please?
Many UK hospitals enroll patients in the STAMPEDE trial. Here are the locations:
The Stampede trial looks good . Am curious of anybodys experience with hormone patches. I chose radiation in large part due to the encouragement and infromation found on this site.Good luck to the 2 of you. I am sure you will navigate yourway through all of this.
The first step is to make sure the cancer has not spread outside of the prostate. He should have a bone scan/CT and a PSMA PET scan/CT.
The best cure rates are for whole pelvic radiation, not surgery. Several recent clinical trials have had excellent cure rates:
prostatecancer.news/2021/06...
One of the STAMPEDE trials in the UK recently showed that superior results occurred when high-risk patients were also given 2 years of abiraterone and ADT:
I had something similar. Age 61 and fit. Gleason 9 but no indication of spread and below 10 psa. The percent of prostate impacted was low (5%). So what to do - a small amount of high risk cancer. SOC leans towards significant radiation (sbrt + brachy) plus at least 18 months ADT for Gleason 9. But that seemed overkill with long term side effects since amount was small. Surgery was an option since I was relatively young and fit, but with Gleason 9 I felt I needed something systemic in case there were micro cancer cells that escaped.
After a lot of research and consultations with 4 docs, I chose an Inbetween treatment. A trial at NIH with 6 months of “intensive” ADT to kill off any escaped micro cancer cells followed by robotic nerve sparing surgery to get rid of the motherload. Very happy with the result. After 2 years, cancer undetectable, few side effects. If your on the east coast, ucsd has a similar trial. One note of caution - adt has to be intensive (adt plus). Past studies have shown that 6 months of regular adt doesn’t add enough systemic value to improve surgery outcomes.
A bit older than your husband with 3+ years of advance start. Otherwise copy/paste cases. Check my bio to learn how I have dealt with it.
All the above is great advice. Be calm you have plenty of time to make educated decisions.