Monitoring PSA post surgery with Gleason 9

Thanks @rocky999 !
Your post has given me a few things to think about and consider as I start this journey.
I hope you are doing well 🙂

I am a little puzzled. You are a Gleason 9 and a decipher .99, Yet you only took ADT for six months.

The NCCN, Which sets the standard of care for prostate cancer patients recommends that Gleason 9 patients stay on ADT for a 18 to 24 months. Do you know why you only had to do it for six months? That can leave you with a risk of early reoccurrence. It is good to hear you are getting undetectable results.

Did you run that 6 months limit past your other doctors?

Did the somatic test show you had BRCA1 or BRCA2? The PARP inhibitor is most effective with those genetic problems but also works with PALB2, ATM, RAD51C and RAD51D

I know ADT can be a real pain, I was on it for eight years. I stayed on because it allows me to live longer.

My healthcare provider said 18 months of ADT. Second opinion by Fred Hutch said 6 months. I asked Fred Hutch why such a divergence and confirmed their opinion that I was high risk. They said that the benefits of longterm ADT was a grey area but the systemic damage due to longterm testosterone deprivation was not a grey area. I researched the subject and found the research showed at best 8% benefit of 18 months ADT over 6 months of ADT . In addition the research says that intermittent ADT is “non inferior” to continuous ADT. Another issue, albeit also a grey area, is the high selection pressure of longterm ADT which may force castrate resistance mutation, especially with unstable cancer gene genetics like mine.
I opted to go ahead with the advice of Fred Hutch , a center of excellence and do 6 months ADT with monthly monitoring and the intention to back on ADT if my PSA started moving up.
As far as mutations and repair issues I had none in my germline genetic tests but serious ones in my somatic cancer cell testing hence the PARP Inhibitor comment from Fred Hutch.
I am not suggesting that the intermittent ADT approach is the best way forward but at 63, and a very active long distance athlete, if it’s easier on my body systemically due the “holidays” that’s my way forward. Fingers firmly crossed!

Short answer, after surgery, at least for the first year, more likely two, you and your medical team will do labs and consults every three months. If it stays undetectable, then at two years your medical team may move to every six months and at some point, if it remains undetectable, say at five years, annually.

If I understand correctly, you have not had your surgery yet. If so, that pathology report and surgeon's notes may provide an answer on the way ahead labs and consults or adjuvant therapy.

It would also be useful to know which PSA test they use, standard, to a single decimal point, or ultrasensitive, to two decimal points. If the former, your results generally come back at < .1 which is "undetectable" and when you have two consecutive increases, say .2 then .3, taken three months apart, you have BCR and go from there. With the USPSA, that definition of BCR changes and the medical community is all over the map about when to act on those results.

So, if you're comfortable with your decision on surgery, my take is needless worry until after when you have clinical data, pathology report. surgeon's notes, labs...then you can discuss with your medical team any treatment decisions.

Kevin

Thanks @kujhawk1978 !
What you posted is almost exactly what my doctor just told me. “Stop worrying about follow up when you haven’t even had surgery yet”. But that’s what I do, I worry. Hard not to when we are in this situation. Thanks again Kevin!

Gleason 9. Surgery was last September. My surgeon described/describes my cancer as high risk. Had to take one set of nerves, and it had spread to the seminal vesicles and a few lymph nodes. All PSA tests so far have come back undetectable. Saw him yesterday. He advises "watchful waiting." So does the Radiation Oncologist I was referred to. The surgeon went over the "data" with me yesterday.
Since my PSA was always low (never got past 2.08), his threshold for starting ADT/Radiation is .05. I am OK with this. I was going to start ADT/Salvage radiation no matter what, but I am going to wait. I will be 72 in August, and I think I have many years left, even with going the "watchful waiting" route.

Thanks @chipe !
That’s interesting that you can do watchful waiting even with Gleason 9. Personally I’m a 4+5 and scared to death it will metastasize all over my body in the next couple years. However, my urologist said that aggressive prostate cancer is still slow compared to other types of cancer.
I wish you good luck and many years! 🙂

Hi John,
I truly believe that our attitude is at least 80% of the cure. Since surgery, I have not perseverated about my cancer at all. Yes, at almost 72, I have aches and pains. Sometimes, I have rib pain, back pain, and lots of intestinal discomfort due to my diverticulitis and colitis. Do I ever think, "Hey, could this pain be due to metastases?" Yup, very rarely, but sometimes I do. It comes with the disease. However, most of our aches and pains are simply explained and we wouldn't have considered the worst pre-cancer.

So be your own best advocate. Treat yourself with love and kindness. And if you sometimes think "the worst," you are not alone, brother.