PSA falling, Prostate Cancer increasing. Very Confused.

[abmicro]

I have had many many treatments over the past 17 years starting with surgery for Gleason 8 prostate cancer. Started with surgery at a PSA of 5, appeared to be contained in the prostate. PSA fell to 0 after surgery. Thought I was cured, but PSA came back a year later furiously. I followed up with many many therapies over the years to knock it down to zero several times, had good remissions, but kept coming back later.

Recently had Chemo and want opinions from the group. Completed 7 rounds of chemo and ran a victory lap because I was pain free almost the entire time I was getting Chemo, and PSA fell from 22 to 1.7.

Restarted XTANDI 1 month after completion of all Chemo to see if the cancer could be held in check by that drug. It is an XTANDI "re-challenge" since that drug failed a year ago.

Follow-up MRIs 2 months after completion of chemo showed NEW progressions in pelvis and lower spine (compared to MRIs taken a year ago). Pain is also creeping back and is increasing in the same pelvic areas where I had pain before and also in 1 rib where I had pain before. Very confused and disappointed. I thought Chemo knocked out most of that cancer.

Red blood counts also falling a little. Before Chemo Red count was 4.41 and within the 4.XX range before each infusion. Two months after completion of Chemo, measured 3.92. Confused. I thought red counts should get better 2 months after stopping chemo, but that is not happening.

I dont have an opinion from my primary oncologist at UC Davis because my appointment is not until December 7. I decided to run over to Stanford for an early "2nd" opinion.

My Stanford radiation oncologist said to not take either a PSA or MRI as gospel truth. She said to weigh both of them together. She said she will go through the images herself and do her own compares and advise me later. She also took an x-ray where I was having the most pain to check for a fracture. She said to wait another 2 months and do all my blood tests again.

Questions:

1. Can the effects of Chemo still be working 2 months after I stopped it as indicated by a falling PSA, or is the PSA a lie as indicated by my MRIs and the return of pain?

2. How will I know if XTANDI is working?

I am waiting, disappointed, and confused. My appointment in December with Oncology may offer some clarity, but would like to get other comments from the group.

[gusgold]

MRI is the gold standard...progression is all that matters...many times PCa doesn't produce a lot of PSA....wait until Dec 7 and ask these questions from your MO...make a list of all your concerns before your appt. The guys up here are not Docs but sometimes you can get a valid answer from Nalakrats if he happens to be sober at the time. Below find the most recent pic of Nalakrats so take this into consideration in case he responds to your post

Gus

thumbs.dreamstime.com/z/cra...

[redbank in reply to gusgold]

lol

[Fairwind]

Don't become a PSA slave..As your cancer progresses, the PSA test becomes unreliable as the cancer mutates into forms little related to Prostate Cancer..And yes, chemo keeps working (producing a response) for a considerable time after treatment stops..If bone pain is a problem, keep in touch with your RO as she can spot-treat that problem effectively with SBRT (Cyberknife)

[Tall_Allen]

it may be that your PC is morphing into a type that puts out little PSA. You should also be looking at bone alkaline phosphatase. You should also have a bone scan, not just an MRI. You will know if the Xtandi is working the same way - blood biomarkers and bone scan. If the cancer has become resistant to Taxotere, you can try Jevtana.

[Hidden]

Sounds like it might be a good time to do genetic testing to see what's going on with your cancer and help you come up with a plan of attack. They could check to see if there is any neuroendocrine differentiation which would explain the low PSA. I agree with above comments not being a slave to PSA. You want to treat the cancer, not the PSA. If you are having pain symptoms and radiographic progression that's more significant than PSA. Also as TA suggested, watch the ALK PHOS and see what that's doing.

[leach234]

Could you clarify in more detail what you said about your PSA coming back furiously after I Year. I am also a Gleason 8 (Ductal) with a PSA of 5 and small <2mm focal margin on pathology. I am 7 months out with <0.02 PSA.

[abmicro in reply to leach234]

PSA doubled every 7 weeks.

[leach234 in reply to abmicro]

What was your PSA after surgery and what was your PSA when you decided to have salvage radiation?

[abmicro in reply to leach234]

PSA after surgery was undetectable. I did not do salvage radiation.

[leach234 in reply to abmicro]

What do you consider undetectable? 0.01, 0.02, 0.05, <0.1?

What was your PSA when you decided to do additional treatment and what did you do?

[abmicro in reply to leach234]

Initially at Kaiser <0.1 because they did not offer a super sensitive test. Later I relied on the super sensitive for <0.02

[abmicro in reply to leach234]

I waited until psa reached 10 before starting hormone therapy.

[leach234 in reply to abmicro]

What was your reasoning for waiting until your PSA reached 10 before seeking treatment? Why not start radiation when PSA hit 0.2?

[abmicro in reply to leach234]

I did not do salvage radiation. I did hormone therapy, no radiation.

[leach234 in reply to abmicro]

I know but WHY didn't you do salvage radiation when PSA was 0.2. When you still had a chance for a cure?

[leach234 in reply to abmicro]

Hormones do not cure but radiation could have. What was your reasoning?

[abmicro in reply to leach234]

If you read about why I waited, it is because the cancer was no longer in the prostate area. It was up higher near a pubic bone. Salvage radiation would have dropped my blood counts, caused burns on the bladder area, and cured nothing. An opinion from UCLA said dont do salvage. Cancer is probably somewhere else.

[abmicro in reply to leach234]

Also regarding waiting, there were 2 schools of opinions 18 years ago in the Prostate Cancer world back in those days: 1) Start Hormone therapy immediately, OR 2) wait until you have symptoms of pain. I picked a middle of the road and waited for a PSA of 10 which took about 10 months to reach. While PSA was going up, I slipped in a clinical trial of a drug nobody heard of, but it didnt work. I exited the trial when PSA hit 9 and started Lupron a few weeks later at PSA 10.

I was also hoping that a PSA of 10 would help me find see my cancer on a scan, so I could radiate it, rather than blindly radiating the prostate area hoping to get the cancer.

Even at PSA 10, could not locate a tumor after running many types of scans. It was well hidden somewhere. Looking back, it turns out years later, my cancer showed up near an upper area of the front pubic bone on one side. Salvage radiation would have missed it completely so I made the right decision. When it showed up years later after many hormone therapies, I did radiation to that bone and the area around it and got a few years of remission at PSA <0.02.

Waiting for my PSA to go up to 10 also helped me build up my bone density because I had full osteoporosis with rib fractures. The fractures were NOT from cancer. Fractures and osteoporosis were from low Vit D along with use of daily Gaviscon tablets for 10 years under a high stress job. I got 10 months of Fossamax completed and improved bone density a lot before starting Lupron. If I started Lupron immediately having osteoporosis, it would have been more difficult to get my bone density up. I also had a Dr opinion that low bone density is a higher risk of faster spreading of cancer to the bone. Waiting was also a quality of life issue because I was a very active young man athletically and wanted to stay active without a lot of bone fractures.

That was 18 years ago, and we are all smarter today and know that early treatment is better, and nobody decides to wait until you have pain symptoms before starting hormone therapy.

[abmicro]

Thanks for your comments. Just got my final opinion from Stanford. There is a 1.3 cm lesion inside a bone, left femur near hip that is concerning because I have a risk of fracture. I will probably need to radiate that tumor to prevent a fracture. If it fractures, I will need surgery with a rod in my bone along with radiation anyway after that. The other spots I can leave alone and try to get into the LU177 trial at UCLA.

[j-o-h-n]

Applauding you!!! I still don't agree what they wrote about you on the ladies room walls, I still think you're an Ace.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/30/2018 9:18 PM EST

[leach234]

But looking back if you HAD done radiation when your PSA was 0.2 could you have got it all?

[abmicro in reply to leach234]

Salvage radiation would have missed the cancer completely because it would have radiated the prostate and an area slightly greater than the prostate area. There was no cancer there. Even if there was possibly some microscopic cancer there, it was already forming in other distant locations. I would have ended up with all the side effects of radiation of that area including bleeding of the rectum, lowered blood counts, fatigue, and more.

UCLA opinion was that the cancer had already spread before surgery to multiple locations based on the rapid recurrence of my PSA after surgery and my PSA doubling time. This was confirmed years later when scans showed the upper pubic bone area, and ribs lighting up, but no cancer lighting up at all in the prostate area.

From what I read, when your PSA is doubling very fast, every 7 weeks in my case, it indicates multiple tumors spreading everywhere. Salvage radiation is recommended when your PSA stays completely undetectable for a long time after surgery and then slowly starts going up again.