Husband newly diagnosed

Mumbo said...
My experience
https://youtu.be/llceupig8re

That got a nervous laugh out of him!

I'm sure you've been informed about lifting restrictions. 3.5 months after surgery I was moving things around in my garage and injured myself at my incision site (on the inside) Didn't lift anything heavy, just a lot of repetition. Mild pain went away after 2 days but a reminder the healing process takes a while. Best wishes on the pathology report!

Looks like you guys got a downgrade to G7 after surgery, which is certainly a positive. Positive PNI is very common, not sure if it means much, i think it means more on biopsy than surgical patholgy.
I think it would be useful to do genomic testing now, so that if PSA is undetectable, you've got one more, very important datapoint to inform your ART decision

A downgrade from G8 (4+4) to G7 (4+3) is both common and good, as were the findings of no positive nodes among those examined, and no seminal vesicle invasion. However the 75% pattern 4 is still fairly large and the EPE is an adverse feature that figures into the prognostication of the likelihood of a rise in PSA and the possible need for further treatment.

The first PSA test is usually done with the standard PSA test for men with prostates. So if it comes back as <0.1, that's a very good beginning. If possible, I would try to have his subsequent tests done with an ultrasensitive PSA test (one that yields 2 or 3 digits after the decimal place). These are much better tests for men with one or more adverse findings after surgery: (1) one's PSA nadir (which usually occurs in the first 6 months) can be a statistical prognosticator of BCR risk; (2) these test afford more lead time before treatment when tracking a rise; (3) they allow fine-tuning for deciding how early one wants to have early salvage treatment.

Regarding a genomic test such as Decipher, you can certainly wait a bit. However, assuming his PSA is first PSA is <0.1, there is something to be said for genomic testing sooner and keeping it your back pocket rather than waiting until it becomes necessary. It could be years (and hopefully never) before your husband's PSA rises to a level where salvage treatment needs to be discussed, and, as you correctly pointed out, knowing one's risk for mets within 5 years (low, average, or high) can play a role in deciding how early to start early salvage therapy. The Decipher test could certain wait until the PSA starts to rise, but (1) even though U.S. institutions keep tissue 10 years (or longer in some states), specimens can be misplaced or get lost, and (2) knowing the met risk up front may be psychologically preferable for some folks. Knowing this risk can perhaps also guide you as to how long you want to keep testing PSA at 3-month intervals.

Just some thoughts -- we're all different. As my dad used to say, That's why they make chocolate and vanilla. I certainly hope you can both put prostate cancer in the rear mirror now!

Djin

Post Edited (DjinTonic) : 5/7/2021 7:31:57 PM (GMT-6)

Since I went down a similar road, this seems obvious to me now: 1) get a Decipher genomic test done on a sample of the cancer tissue and 2) Get a second opinion on the prostate pathology from Dr. Epstein’s group at J Hopkins or similar. My urologist suggested genomic testing and I suggested the second opinion which we had to discuss at our 3 month meeting

These higher risk situations seem to end up where the doctors say you have adverse findings such as EPE, etc so you may want to consider adjuvant radiation or wait for salvage radiation at a later time if his PSA becomes detectable. My URO and RO both said it was my decision and I needed something too push me one way or the other. Well, my Decipher score was low intermediate and Epstein’s group found more Grade 5 than hospital pathologist such that my Gleason went up and my decision become more clear for adjuvant radiation 5 months after surgery. That and Dr. Epstein saying he would probably go for ART if it was him with my pathology helped also.

The real key is the 12 week PSA which hopefully is undetectable. If not, it becomes clear that something needs to be done after a couple of verification tests. If it is undetectable, then you sit there wondering what you should do next. Information is all you can rely on at that point so get what you can now so you can be better informed in a month or so from now. Results tend to be better with early treatment so there is some incentive to considering adjuvant radiation when risk is higher.

ps: Medicare covered my Decipher test and I have heard Decipher will work with patients who’s insurance will not cover the cost so you need to resolve this part early on as it can be expensive. The second opinion by J. Hopkins is around $300 so very reasonable if insurance doesn’t cover.

Your husband is tough but that is the 49 year old talking. He is expecting an awful lot after a couple of weeks.

Surgery shocks the urinary system pretty good so his expectations should understand that everything does not snap back right away which is no long term predictor of anything. The nerves are abused in the process and have to recover which is different than continence. I cannot imagine even thinking about sex after the catheter was removed so hard to understand the rush at my older age. Easy way to get a hernia or something similar if one pushes too hard in that first month.

Things will never be the same but that happens with cancer treatments. Not being treated has the ultimate side effect so he should be careful what he wishes for. Continence is the bigger problem and he seems to have survived that in short order as I did. The rest becomes a work in progress and the pace is unpredictable.

B--

The risk of a hernia or similar is very real--so taking it easy for the first month or 6 weeks is mandatory! I was about 2-3 weeks after surgery before I had my first night erection, I remember it distinctly because I was wearing a thick pad, and I woke up in pain because things were jammed.

When he does start to get twinges in that way--I can think of a number of things a loving wife can do to "encourage" things along--I'm sure you can think of them as well. Just be careful to minimize the physical effort he has to make, cuz an injury down there after the surgical violation he's been through would not be good at all.

A good continence response this early is GREAT, and it bodes well for other things healing up nicely as well.

Thanks for your replies. I know in his heart he doesn't really wish he'd kept the cancer. He's got a lot of processing feelings & physical recovery to go. Thankfully it's not just my support that he'll receive. The rest of our family & friends are here to help as well.