Decision time (again)

We're back into decision mode. Since path report from surgery shows EPE, RO wants to start ART. Husband is scheduled for planning CT on December 2nd.

But urologist that did the surgery is urging wait/monitor PSA. He thinks he may never need radiation at all.

I've read many, many posts on here with others facing same decision. And many, many study results examining ART versus SRT. Just doesn't seem to be a clear answer....not yet, anyway.

My husband is suffering from some nasty side effects from radiation he had for a different cancer 10 years ago, so that is making him reluctant to go through possibly unnecessary radiation again. But with EPE, maybe the best bet is ART.

Appreciate any input. Maybe suggestions of where to get a 3rd opinion?

Hi acsd,

Your husband's path report is not so bad. I think it's too early to consider ART. With clear margins, no SVI and no LN involvement, I would wait to see if PSA rises. By the way, you will never get a clear answer if ART is superior to SRT or not.

All the best,

acsd said...
... suggestions of where to get a 3rd opinion?

Acsd,

Bluebird's suggestion that you talk to a medical oncologist who specializes in PCa sounds good. Perhaps if you could remind us which part of the world you are in someone could give a more specific recommendation.

I think the six month figure is for when they want the radiation to finish -- or at least mine finished up right at six months post-op after the RO waited as long as he could for me to recover continence. So you have to figure the start date seven or eight weeks back from the six-month anniversary date. Hopefully someone can give you some pointers for MOs in your area.

In all likely hood, it the epe is prognostically invasive, the psa will rise. Most of the studies include men that have had radiation when they never needed it but like you are worried and give in to that fear. Nothing really wrong with that, but when a person is never going to have a recurrenece any way, it definitely skews any results when he does not recure after having ART/SRT. HE NEVER WAS GOING TO.
I have a son who has a doctorate in epidemiology{ do not think epidermis}, think of those at CDC who go into action to figger it out when any disease breakout. Any way He told me a mantra of epidemiology is "All studies are wrong" He gave a detailed explanation, of which, I internally summed up as, if part of it is wrong, the butterfly effect takes over and destroys the promise of the results. I meant to say premise, but will leave spellcheck to enhance my thought. Do what you think you should do!

ACSD,

Dr King's analysis showed that SRT can be equivalent to ART if it is started before the PSA reaches .2. Given your path report of Gleason 3+4, it doesn't seem that risky to me to wait, but that is a decision you have to make with an oncologist. I'm sorry I don't know any oncologists in CO, but you might be able to consult with Dr. Scholz or Dr. Agus in LA.

- Allen

Lapilot
I don't know where " below .06" comes from. That's crazy. The accepted threshold for thinking about RT After RP is .2!
Bob

Seems to be a fairly common pattern - the RO wants ART, the surgeon or urologist/surgeon says wait and watch PSA.

Wonder how the surgeon decides how many lymph nodes to remove. My husband only had 7 removed. yk had 29. The surgeon told us ahead of time that he wouldn't proceed with surgery if they found cancer in the lymph nodes.

Thanks for all the feedback.

Hi acsd,

I am on a similar boat, due to a positive margin at the bladder neck with G 6 at the margin.

So I will add what actions I have taken so far regarding ART versus SRT at BCR, with the hope that it will be helpful to you.

I had surgery at Hopkins. My surgeon recommended active surveillance and RT if I have BCR. My Hopkins RO recommended ART between the 4th and 5th month after surgery. I got very confused. So I started to read research articles to see what they said about ART versus SRT after BCR, but I also I took my medical records and further consulted a surgeon and an RO at Sloan-Kettering. Again, the surgeon recommended active surveillance and the RO recommended ART. So it seems that surgeons would recommend active surveillance if the post-op pathology does not look too bad, and ROs would recommend ART whenever the pathology report is not completely clean.

I do not think that anyone knows for sure if there is a major advantage of having ART versus SRT upon BCR for Gleason 6 and 7 without SVI and without LNI. My own situation lead me to Dr. D'Amico at Dana-Farber, who has written a research article on the issue of ART versus SRT for Gleason 6 and 7 patients. I had a consultation with him in person, as he does not do phone consultations. He and his team were by far the most thorough of all the doctors that I have met so far. He has not made a final recommendation yet, because he requested a complete review of my post-op pathology, which he deemed incomplete and "not of the usual Hopkins caliber".

Because of the positive margin, I had an early PSA test that
was undetectable, and I will have another one (12 weeks post-op) in a couple of weeks. I will factor this result into my decision as well.

I will also consult a medical oncologist to hear an opinion that I hope will be less biased. With all this input at hand, in the coming weeks, I will make a decision and stick with it.

All the best,

Joe.

acsd,

Have you considered the University of Colorado Hospital? I know of a couple of guys who went there for second opinions and follow up treatment and they really liked them.

Have you considered TUCC for a third opinion?

I had my surgery with Kaiser, but after going on Medicare I switched to TUCC for my PCa. I have no complaints, but all they have been doing for me is PSAs but the doctor I am seeing seems to know what he is doing.

Acsd, another wife chiming in here...one with a husband who was also a Gleason 3+4 with a single foci of EPE. While your husband's tumor burden was greater than my husband's was, I personally wouldn't be too quick to pull the trigger on ART. Your husband's surgery was in September - 2 months ago - and I would vote for waiting to see what his PSA test shows.

BTW: my husband's surgery was over 5 years ago and he's pulled undetectable PSAs without any further treatment.

Tough decision. I would lean into the camp of waiting for a few months and see what the PSA is doing. i have heard from many, that while their first test showed positive for PSA it did decline over the months. since I am not a doctor I really can't tell you what is best. I do know, that I just completed eight weeks o radiation this month and it really has wiped me out of energy.

Good luck to you in making this decision.