Gleason 9 and cancer-free 1.5 years post-surgery

Hi everyone. I'm sorry I haven't posted for a while. I had a pretty bad prostate cancer diagnosis back in September 2018. At 48 years old I was Gleason 9 with a PSA of 10.1. I posted about it here: https://www.healingwell.com/community/default.aspx?f=35&m=4066847 .

I'm happy to report that so far, everything has gone just about as good as possible. I am very, very lucky.

Back in the fall of 2018 I struggled with what was the right treatment approach at first. I moved to University of Washington Medical Center in Seattle where I ultimately decided on a combination of a PARP inhibitor drug called Olaparib (trade name Lynparza) for 90 days and then robotic prostatectomy. I had also considered radiation plus hormone therapy as well.

The Olaparib drug was a trial that I was eligible for because UW did genetic testing on me that confirmed I had a BRCA2 genetic cancer mutation. The hope was that the drug could kill any cancer microscopically outside of the prostate. Previous studies showed high success rates with Olaparib in PCa men with the BRCA2. My understanding is that while having the BRCA2 mutation puts you at greater risk for certain cancers, it also offers a flaw the Olaparib can exploit. While Olaparib is actually a type of chemotherapy, I just took pills and there were almost no side effects except for feeling a little lethargic at times.

A day after the Olaparib trial ended, on 2-25-19, I had my robotic prostatectomy at UW with Dr William Ellis. Everything about the surgery seemed to go well. Like most people the initial recovery until I got the catheter out was not a fun period. I mostly tried to sleep my way through it.

A couple of key things about the surgery. One major bummer is that because there was prostate cancer on the left side in the vicinity of the left nerve, we decided to remove the left nerve. So we increased the chance of not leaving any cancer behind but added to the erectile dysfunction risk. Also because I was Gleason 9, they took more lymph nodes than usual out of me (30) due to the increased risk of spread.

Here is a timeline of what has happened from diagnosis to now:

7-20-16: 3.28 PSA
7-31-18: 8.6
9-5-18: 10.1
9-17-18: Biospy and diagnosed with Gleason 9 prostate cancer. Two Gleason 9 cores and three Gleason 7 (4+3)
11-30-18: 11.58
12-1-18: Start Olaparib drug for 90 days leading up to prostatectomy
12-28-18: 13.47
1-25-19: 11.58
2-22-19: 9.89
2-25-19: Prostatectomy
3-29-19: 0.03
4-26-19: <0.03 (lowest UW machine can go)
8-27-19: <0.03
1-6-20: <0.03
6-11-20: <0.03

So as you can see, I am almost 1.5 years post surgery and at <0.03 PSA which is considered cancer free. So far, this is incredible! I am realistic though, knowing that because of the Gleason 9 diagnosis, there is still a good chance the cancer returns. The UW docs told me if I get to 2 years of PSA zero, that is a big milestone because it then signifies a 50% lower chance the cancer will return. And 5 years would be the point to consider the cancer gone for good.

Then there is the erectile and continence considerations. On the erectile front, given that my left nerve was removed, the results have really exceeded my expectations. In the first year, I was able to have very good sex about 90% of the time with the help of viagra. Now to my surprise I am having full erections almost every time with no viagra used any more. I definitely did not expect it to be this good!

Regarding continence, I am a little more disappointed here but it's not terrible. I was down to 1 pad a day and trying to phase it out altogether. Unfortunately I can still be a little leaky so I'm still stuck with the 1 pad and occassionally even 2. I should add that I am a little inconsistent in doing my kegels so that probably is not helping the cause.

Overall though the results have really exceeded my expectations given the initial dreadful diagnosis. Possibly also helping is the fact that I am very physically active and eat a large of vegetables including a lot of cruciferous. I am really grateful to the folks at University of Washington who may have extended my life quite a bit. I know there is a decent chance it could come back but for now I'm feeling good, living good, thinking positive and being healthy. If anyone has any questions, I am happy to answer them and share what I have learned in this process.

Hi Bob! All told, very good! Your treatment decisions seem wise in light of the genetic cards you were dealt. Do continue your Kegels! I've seen several studies documenting that continence can continue to improve well into the 2nd and 3rd year post-op. My uro confirmed this for his patients.

Can you tell us your RP path specifics? Final G score, pT staging, and any adverse findings. We're all your nodes negative?

As for "gone for good," I'm not sure that's ever known for sure. Just as there have been studies where the author concluded you can stop PSA testing after X or Y years, you also see men whose PCa comes back after decades. NED (No Evidence of Disease) is still pretty good! When I asked my uro/surgeon when we could stop testing, he said "Never."

Thanks,

Djin

That s all fantastic...I was treated at Udub myself with open surgery by Bruce Dalkin I stayed in the U District and had a mystical experience while there...good on ya...thanks for stopping by

That's a pretty good report for a G9 (4+5). The only adverse finding was EPE, which was limited to one small spot. The only thing I'm not seeing is an estimate of the percentage of prostate volume occupied by the cancer.

Here's to a lifetime of continued great PSA readings!

Djin

You're having a very promising outcome. Good luck ahead!

Good for you, may it continue for many, many years! Wow, I can't believe it, good sex after RP! Well, they did leave you one nerve, so that is better than me(also a G9), and just shows that some guys can pull it off! Congrats!

Excellent report, Bob. It cheered my day enormously to read your success story. Take care.

Boom. So great to read this and so glad you entered a clinical trial.

Hi Bob,
May I ask why you had the gene testing? I too have considered this since I was young and it was aggressive. I had zero family history

Thanks for the reply Bob. I would be getting tested for the benefit of my kids since I have 2 daughters and it's a nasty gene for women. Any history of breast, ovarian or prostate in your family? I may be incorrectly assuming I don't have the gene as there is no history

Congrats on the wonderful news! I was originally a G9 and then downgraded to an 8 after surgery, but I was still terrified of BCR. My post-RP indicated they got all the cancer, but just months later my PSA returned and I had radiation. Like you, it’s been 18 months of undetectable and I feel blessed, given my G8 prognosis. I do realize it can come back, but I am hopeful all will be OK. Wishing you many, many more undetectable results!