PSMA scan results at PSA 0.12

[jjpeabody]

I was originally scheduled for 3/15/21 but got on cancelation list and they called quickly to reschedule for 2/9/21. My profile has details but quickly, Gleason 4+3=7, extra-capsular ext and perineural invasion, margins nodes &vesicles negative. PSA went from .009 after RP on 2/14/19 to .041 after a year and up to 0.19 on 11/12/20 with doubling time <3 mths towards end before starting Casodex. Radiology Report "Impressions" section: "...post RP with focal intense PSMA uptake at the left/posterior aspect of the bladder in the surgical bed, concerning for local recurrence. No evidence of distant disease." I just had a physical with PCP on Mon 2/15/21 and he slapped on rubber glove and I told him I had a little chronic discomfort about 7 o'clock but not sharp pain until he said I feel a nodule and I think he pressed it to see how hard it was and I had sharp type pain for a couple days there. It is settling back down to discomfort level. I hope he didn't launch microcancer cells into the blood stream. As for treatment plan, I meet with radiologist at Mayo AZ Monday and plan on starting back on Casodex with tamoxifen and about 2 weeks later follow with Lupron. I would also like to add zytiga or Nubeqa in there for 12-18 months to address micro disease after IMRT/IGRT. Any thoughts re treatment plan. Thanks as always (at 1-2 pads still fear incontinence but this sounds like possible cure?? Odds 50/50?). Jim

[Tall_Allen]

SRT to prostate bed with simultaneous integrated boost to site on bladder. No systemic therapy is needed at your low PSA. But you may want to go on ADT for 7 months before SRT to give your incontinence more time to heal. Cancer doesn't spread by physically loosening some cells - no need to worry about that.

[jjpeabody in reply to Tall_Allen]

Is SRT the new normal over IMRT/IGRT in my situation, and will it cover enough area to get micro disease? How many treatments might that be? I'm all in for ADT with radiation, 12 months ok with me unless side effects are not worth it. Are we sure incontinence is not riskier wih SRT. I had talked with Dr. Kresl, Cyberknife Phoenix...impressive, and he said they use a "truebeam STx" system. Assume that's different from Cyberknife? I am working with Mayo at the moment...of course want best equipment for result. Wonder if Mayo is state of the art? Finally, would insurance cover Zytiga with lupron and casodex? We're almost there! What do you think. Thanks, Jim

[Tall_Allen in reply to jjpeabody]

SRT=Salvage Radiation Therapy (it's what it's always been called)

You are confusing it with SBRT.

[jjpeabody in reply to Tall_Allen]

Ok, thanks for your input, I need to catch up and do my homework for my treatment planning appointment at Mayo next Monday. Thanks again.

[jjpeabody in reply to Tall_Allen]

Actually I mean thanks for your support, it means more than input, this board provides support.

[rscic]

Negative Seminal Vesicles is good as this is thought to be a common route to get into the bloodstream. I got adjuvant RT which is RT before evidence of spread (I had pos Surgical Margins & Extra Capsular Extension). My RO (Radiation Oncologist) told me he would like me to have good bladder control before RT because once you get RT you are usually stuck with whatever bladder control you start with ..... it often does not get better after RT. I was able to start RT 90 days after Surgery ....... your experience may differ.

This was my experience.

GOOD LUCK

[jjpeabody in reply to rscic]

Thanks for sharing your experience rscic, yes I am concerned re incontinence after 2 years since RP. Also it looks like my longevity for 10 years is around 50%, with only about 17% chance of dying from PCa, hard to believe that one. Would lean toward ADT etc without SRT but not sure of side effects or efficacy after reading some posts here. Thanks again, Jim

[tarhoosier in reply to jjpeabody]

Believe it.

[rscic in reply to jjpeabody]

PRIORITIES:----Focus on the BIG PICTURE ----living, even with some discomfort, is the most important thing .....

----side effects are called this for a reason .... they are minor vs the benefit provided by the treatment. Know the side effects & work to eliminate/minimize them but realize their rank in the grand scheme of things.

----make choices based on data & possible benefits. Fear of possible downsides/side effects is secondary ..... side effects are most often less than the benefits otherwise the treatment would not be approved.

----Have a goal --- many feel those who have a goal, something they are working on & want to get done, do better in most treatment scenarios.

IMO the benefits of SRT usually far outweigh the possible side effects ..... but each situation is unique & you have to consult with your Doctors & decide ..... go with the best odds.

Incontinence after 2 years ...... consult with your Doctors if this is likely to get better ..... if not, then starting SRT could be done sooner rather than later.

Just some thoughts .....

[jjpeabody in reply to rscic]

Very good things to consider, in the fatigue and stress of considering all these options,posts, doctors opinions etc your post is welcomed. Jim

[rscic in reply to jjpeabody]

It is easy to get lost in all the information ..... one problem with this information overload is sometimes benefits & side effects seem to have equal weight ..... they do NOT otherwise the treatment would not be approved.

[Kcski]

My father did chemo before Zytiga and it has been the right decision. The chemo seriously knocked down the cancer.

[jjpeabody in reply to Kcski]

Thank you for your post. I will bring up these advanced options when meet with doctor. Since he is a radiation oncologist may have to meet with my medical oncologist too. Not sure what all options are covered by insurance for my level of cancer. Thanks again, Jim

[j-o-h-n]

It's all a crap shoot...........So don't worry about the crap just shoot those little bastards.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 12:36 PM EST

[jjpeabody in reply to j-o-h-n]

Yes sir, the gun fight at the OK Carrol is soon coming. Hopefully it will turn out like in the beginning of the Magnificent Seven as Yul Brynner and Steve McQueen headed up to boot hill and the bad guys appeared at the top of the ridge and said "turn that rig around and get it down the hill" and one lifted his rifle and Yul shot him in the hand before you could blink. McQueen had a shot gun (ADT), Yul had a colt 45 (SRT), I just got to choose my weapon. Thanks for having my back. Booyeah!

[j-o-h-n]

Let's hope and pray you end up okay in the "OKAY" corral...

BTW Just to let you know I am the "Eighth"......👀

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 2:25 PM EST

[MateoBeach in reply to j-o-h-n]

Even the Seven Samurai did not hesitate to fight with fire.

[ron_bucher]

Local salvage radiation after RP gave me 7.5 years of undetectable PSA. I didn't hesitate to get the radiation when my PSA reached 0.20. Best to follow nurses' directions on diet during radiation.

[Beast1952]

I had my first Lupron shot in May of 2020 (3-month dose) then had another in August (this time a 4-month dose). I wasn't crazy about the side effects that everyone else reports: hot flashes (especially at night), weight gain (in 3 months I put back on the 20+ pounds I had lost in the previous 6 months, extreme fatigue late in the day, all kinds of aches and pains ALL day.

The Lupron started to 'wear off' by December, around the same time as I was finishing my 39 days of radiation, so we took another PSA checkpoint then. I guess the Lupron did its job, and since the results of that test ('undetectable') matched my previous 3 post-surgery test results, both my oncologist and urologist agreed with my suggestion that we could get by with just monitoring my condition with regular PSA tests and suspend additional Lupron shots unless my numbers began to creep upwards.

Two months now since I stopped and while I still don't feel great (especially at night), the effects have started to been reduced noticeably. I have my fingers crossed for my next PSA test in late March.

[jjpeabody in reply to Beast1952]

Thanks for sharing Beast. Yes, the real unknowns of treatment are longevity/efficacy and side effects and differ from person to person. However I do need to make a decision soon and taking this all in for my appointment Monday. Your experience is appreciated, Best of Luck. Jim

[Chazem]

In respone to tour incontinence issue consider this. It worked well for me.

Get a Physical Therapy referral for "Incontinence, evaluate and treat".

Ask the PT office if they use a biofeedback technique where they apply electrodes to your inner thighs. (no nothing is going to shock you). With the electrodes and a computer the PT can help you train how to engage your pelvic floor muscles.

Kegles sound easy but to be effective is what this PT method helps you learn. It is very subtle.

5-6 sessions should do it (3-4 weeks) Expect to go back in 6 months for a few sessions as a refresher.

Google a list for urgency trigger foods and beverages. Not attending to this is a set up for failure.

Cut the trigger foods and beverages out for 2 weeks and then start adding them back slowly. See which ones are the worst and add them last.

Also, learn to hydrate steadily over the day so that you pee 5-6 times over 24 hours. That alone will help because it keeps the urine from getting concentrated (yellow); that is a big trigger too.

Been there, glad my Urologist suggested PT; I am a much happier man and get better sleep too.

[jjpeabody in reply to Chazem]

Thanks for sharing, especially "referral ". Going to see radiologist this morning and was going to bring up kegels and getting help. Jim