Next Steps and possible life expectancy?

[JPnSD]

Having GL 9 biopsy at age 66, RP 8/2019 (clear margins and sem. ves., but micro PC in 1 lymph node) and PSA of .01 at 10 weeks...and .05/Jan, .04/Feb, .05/April and now .08/June. My URO and MO sit and wait to prescribe next steps up until now ...URO on vacation until end of June...so no feedback on latest PSA and its meaning (recurrence?). I don't feel like I have a real handle on where I am...and what life expectancy and what the quality of life going forward might be. I have just recovered from incontin. (except stress) and ED improving and thought there was some glimmer of light at the end of the tunnel. ADT and EBRT seem to be what everyone is recommending. Where will that leave me...and is it the BEST next step? Thank you all. Wishing us all peace on our journeys.

[Tall_Allen]

You may still be curable with salvage radiation and long-term (2-3 years) of ADT. The radiation should include the entire pelvic lymph node area. ROs are now recommending that during COVID-19 the salvage radiation should be hypofractionated (more intense treatment regimen of only 20 treatments instead of 40)

[Magnus1964]

These are some very small PSA readings. Remember, small changes in PSA could be due to irritations or inflammations in the prostate bed. When you get 3 significant rises, then it's time for some action, i.e. radiation, or an ADT drug.

In the meantime you still have a low PSA reading, enjoy.

[Fairwind]

With advanced prostate cancer, mortality is almost impossible to predict..It just varies so much..Some guys are gone in 2 years and some are still doing well at 12 years..I'm a G-9 and was diagnosed 13 years ago..But it's been a constant battle..

[Hidden in reply to Fairwind]

Way to go Fairwind!

[milto27xabc]

I was diagnosed 2005 with 3.5 psa and gleason 6 . lymph node in 2007 . interrmittent lupron for years, added casodex. ,continuous lupron for five years then zitiga and prednisone for last 3 years, PSA and testosterone 0.014 & <0.4. should have had radiation to lymph node in 2007. Feel very luck

y to have hit 88---good luck

[jfoesq]

I was dx 8 yrs ago at age 54 with PSA of mid 40s, Gleason 9 and about 4 Mets. I didn’t expect to still be around. Have used Lupron, usually with Zytiga, and had 3 vacations, but don’t expect to have any more vacations in the future. My largest met, in acetablum was radiated once, and I also “elected” to have my Prostate removed, at which time they also removed 30+ lymph nodes (only 1 was dirty). Fortunately, I recovered well from that surgery and am still kicking around

[j-o-h-n]

Forget about life expentancy..... Just live your life.... and since you're living in San Diego then that's called living.............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/06/20202 6:24 PM DST

[Patrick-Turner]

In late Dec 2009, at age 62, and Psa at 6, I was diagnosed with a Gleason 9 score, all biopsy samples were positive, and an open RP was arranged asap which was attempted on April 4 2010, Psa was 8. I had had regular Psa tests for 10 years but docs don't act unless Psa is 5 or over, and I had a lot of Pca with a low Psa, so in effect I was diagnosed about 4 years TOO LATE, even though I expected to get Pca after seeing so many men get it, and my family history of cancer. So the medical system failed me.

In attempted RP, docs found Pca all around PG capsule and decided any attempt to remove PG would have helped spread Pca and damage me badly, so I was assigned to having 2 years of ADT with 70 Grey EBRT over 35 days 8 months after the attempted surgery. The ADT shrunk the size of swollen PG allowing small beam width to be used to cause less damage to bowels. At that time I was brilliantly healthy, cycling 200km a week, averaging 30kph on some 100km rides which included some at half my age.

At EBRT, Psa was about 2, and after 18 months it went to nadir of 0.08.

I was continent, and had no ED, but average bike speed went down 5kph.

At end of 2 years, I quit the ADT to see if treatment that one doc said "would definitely cure me" actually would cure me and I thought he was a real Richard Cranium ( dick head ) because I'd read in so stories by men in chat groups that it was 99% unlikely to ever get a cure, and an ongoing fight for years would happen.

My testosterone levels returned to 20, and within normal range of 8 to 38 units.

Bike speed went up 5kph. But 6 months after quitting ADT, Psa was back to 8.8.

So I asked to see an oncologist since the treatment so far by urologist had been a complete failure.

In 2013 The onco put me straight back on ADT and I've had that ever since. Within months Psa went to nadir of 0.2, and average bike speed went down 5kph, I was continent, but by 2015 Rodger became a drain pipe only, and hardons made it look like a brass garden tap pointed down and no pleasure was possible, and basically ADT deformed me, and exterminated all sexual ability and any form of pleasure.

I didn't care that such horrid side effects happened because I saw I had no chance whatsoever of having any kind of relationship with any woman expect the very nice nurses at hospitals who I saw regularly to have ongoing talks to oncologist.

I had additional 31Grey SBRT in 2016 which seemed to do nothing when ADT had begun to fail with rising Psa at 6.

I took casodex, but had nadir of 0.4, and it lasted 6 months. Then I had Zytiga, nadir of 2, and it lasted 8 months, and More PsMa Ga68 scans showed more and more mets and then I had chemo which increased Psa from 12 to 50 so I quit chemo, and booked in for Lu177, and after a month Psa was 25, and I had 4 shots of Lu177, and Psa went to 1.6, but enzalutamide was added after 3rd Lu177 shot, and docs think that's why Psa went to 0.32 a year after first Lu177 shot.

Without enzalutamide, I doubt the large drop in Psa would have occurred, maybe to 1.0.

Followup PsMa scan report said no soft tissue mets could be seen, but slight image at PG, and bone mets all healing.

But last Psa 2 weeks ago gave Psa at 10, so I am back to square one yet again and may have to get more Lu177, which will depend on what PsMa scan shows next week. My story is not unusual.

But I have no symptoms of Pca, and am still cycling 200km a week regularly at age nearly 72, but at reduced average speed of 24kph is max possible. Chemo side effects of dull leg and foot action continue. During early 2017, I also had both knee joints replaced because I'd been suffering bad knees since I was 55. I hated walking, but I could cycle OK.

But all these many treatments have given me the total effect of slowing my athletic abilities which were never outstanding enough to be an elite sportsman, but did allow me to enjoy exercise. I have a bad ankle joint from a motorcycle prang at 19, and that stops much walking which I used to like. But I can still cycle, BMI =22.5, waist = 92cm, resting HR = 48.

I have ZERO co-morbidities and Pca probably will kill me when no treatment can be found to keep it under control. Pca for me has been a chronic disease, and I had to learn to live with it.

I read on a website of St Vincents Hospital in Sydney in about 2011 that men with Gleason 9 who have EBRT and ADT will have a failure rate of 95%. And with bone mets have 95% of dying within 5 years after bone mets first seen in CT scans. But that info has gone from the website, because other treatments have become possible. So any mans overall survival time after diagnosis can vary between 2 and 20 years, and I am just over 10 years.

I live in complete uncertainty.

So what?

I've had three rises of Psa which have been dangerously fast, and its time to act.

Later, when our winter weather warms up a bit, I will try a nice little 70 km cycle ride to bring up my week total to 200km+. I see my onco on 18th this month and see where I go from here.

Always look on the bright side,

Patrick Turner.

[immunity1]

I was very similar to you 10y ago. IMO 2 options:

1. Assuming there is PC in a Lymph node, take salvage radiation (my previous path).

2. If I was to do it again I would have a PET/CT PSMA scan and follow it up with Lu177 PSMA treatmnet. Unfortunatly the latter may mean you have to go overseas (Australia, Germany etc) difficult at this time.