The continuing saga of Scout and Coco... - Advanced Prostate...

Advanced Prostate Cancer

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The continuing saga of Scout and Coco, Not all change is welcome.

Scout4answers profile image
37 Replies

It is with sadness that I report that My "vacation" may come to an abrupt end . After cruising along with an Undetectable PSA for a little over 2+ years, my recent test results indicate a PSA of 0.03 and my Testosterone jumped from <7 to 13.

The good news is my T is coming back but it looks like my PCa may be reawaking as well. I recognize that small movements of PSA at this low level do not mean much but I would be happier to see <0.01

I did 30 months of ADT using Lupron and Zytiga + prednisone and with Oligometastatic diagnosis my MO and RO both gave me a 40% of a "cure". I chose not to stop ADT even though both my MO and RO said I could stop at 24 months. With a Gleason 9 Dx, I wanted to keep the pressure on the cancer as long as I could stand it. Unfortunately my lack of T was causing some emotional swings that threatened to destroy my beautiful relationship with Coco, something I found unacceptable.

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Scout4answers
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37 Replies
KocoPr profile image
KocoPr

no need to worry yet. You measure every month so just stay the course and see what next test says.

Justfor_ profile image
Justfor_

Time to consider my ARSI maneuvers. I know - I know - I know (thrice), 1st gen Bicalutamide is too passé for people at the other side of the pond, but you have a selection of three 2nd gen that are trending currently.

Fiddler2004 profile image
Fiddler2004

Happy 76th !🙏

Scout4answers profile image
Scout4answers in reply to Fiddler2004

thanks

dockam profile image
dockam

Ya got this, no biggie for now and

youtu.be/vbJNjRoaIws?si=p6f...

QoL on

Dance on

Steel67 profile image
Steel67

best wishes!

Yadifan profile image
Yadifan

Happy birthday Scott! What a cute couple you are! And what doc said...you got this.

Scout4answers profile image
Scout4answers in reply to Yadifan

Thanks

Huzzah1 profile image
Huzzah1

Happy Birthday! I have the same Dx, G-9 and 3 small lymph node mets. In 2 weeks I will be at 2 years ADT - Abi - P. Also had 44 IMRT. My local MO and MO at MD Anderson say I can stop. I'm going to go as I can't stand the way I feel. Since treatment started, my blood work has always been reported as <.1 and has been referred to as undetectable by my MO.

Scout4answers profile image
Scout4answers in reply to Huzzah1

Great results Hang tough

Ramp7 profile image
Ramp7

It's a long dance.

PSAed profile image
PSAed

Hopefully you are a little premature with the "end of vacation" suggestion. I would think a rise in Psa is to be expected with a corresponding rise in Testosterone .

In my case I've had three consecutive PSA increases since finishing 2 years Adt (June 2022) plus EBRT , although I'm discounting the first increase due to a T increase also. However, with the other 2 increases there was no further T increase .

I realise I'm probably clutching straws regarding my situation , but hopefully you are still in the game with a shot at a cure. Best of luck.

Scout4answers profile image
Scout4answers in reply to PSAed

Good info, what is your PSA and what was the progression of the 3 increases? What is your T

PSAed profile image
PSAed in reply to Scout4answers

Dx 2020, Gl 4+3 T3b N1 M0. PSA on Dx 17 or 19 can’t recall exactly and no record

EBRT + 2 years Lupron ( Had Bicalutimide for a few weeks) last Lupron injection June 2022

3rd Oct. 2022- PSA <0.01 T= 0.05 nmol/ L

27 March 2023- PSA <0.01. T = 8.8 nmol/ L

04 September 2023 PSA 0.08 T = 18 nmol/ L

14 March 2024 PSA 0.12 T = 0.18 nmol/ L

27 May 2024 PSA 0.22 no testosterone test as i organized the PSA test myself

Concerned-wife profile image
Concerned-wife

what my husband was told is “ after radiation, because you still have a prostate, your PSA will rise from Undectable when you go off the meds.”

What we haven’t read is how much without it meaning probable cancer recurrence. Have you heard or read any guidance on this?

The speciality center which my husband consults says to wait to 2.0 before scanning ( on his ADT, Abi holiday) We plan to check back sooner.

You have probably seen this article about NCI using .5 in a trial about recurrence. urotoday.com/video-lectures...

Scout4answers profile image
Scout4answers in reply to Concerned-wife

how much without it meaning probable cancer recurrence.

No but that is the kind of info I am seeking.

My MO says he can use a PSMA pet scan at 0.5, but I was under the impression that they were not reliable under 2.0

Mascouche profile image
Mascouche in reply to Scout4answers

I think psma is not reliable under 0.2.After a curative intent, if you still have a prostate they say that recurrence is confirmed once the psa rises to 2.0 but I think that when it reaches 2.0 it is because you already have Mets. I has a metastasis that was visible on a bone scan with a psa of 1.67. It might be prudent to get a scan as soon as you reach 1.0

Cancer2x profile image
Cancer2x in reply to Mascouche

Agree. PSMA Pet scan found two highly avid abdominal lymph nodes for me at a PSA level of 1.4. Treated with High Dose SBRT, 5 days to each node. PSA then dropped to 0.4. Next PSA test in Sept will be telling.

Good luck to you!

Pax

Scout4answers profile image
Scout4answers in reply to Mascouche

Thanks point well taken

Concerned-wife profile image
Concerned-wife in reply to Scout4answers

I have a note “ .1 to.3 Psa due to still having Prostate alone with T return. “ From PCRI but we are packing for a family trip to Kenya and i cant find exact quote right now. UroToday has charts on accuracy of PSMA scans at various PSA levels. Please let me know what you find.

Huzzah1 profile image
Huzzah1 in reply to Scout4answers

At the time of my Dx, my PSA was 3.5. I was given my first ADT shot. By the time my PSMA scan got approved, 4 weeks, my PSA was 1.0. I to had read that 2.0 was the ideal number for very good results of the PSMA. During my visit to MD Anderson, I asked if the scan would have shown everything as my PSA 1.0. Both of my MO's said they were not concerned.

Scout4answers profile image
Scout4answers in reply to Huzzah1

thanks

Dadofmany profile image
Dadofmany in reply to Concerned-wife

What we haven’t read is how much without it meaning probable cancer recurrence.

I am on my second mo and both have told me that the presence of PSA is not cause for worry in and of itself. We should start being concerned when my PSA doubles in 3 months.

I was on ADT (Lupron) for 2 years and PSA was undetectable. Took a vacation starting July ‘23, when PSA was <.02. PSA went from .03 in October to .23 in Jan ‘24. Lovely small numbers, but more than doubling in 3 months. So I started Lupron again. In May PSA was .76, more than doubling. I started Xtandi in mid June to augment the Lupron.

My mo said that we could wait 3 more months without worrying, but I want to be aggressive and he is willing to be as aggressive as I want to be.

LongevityAT profile image
LongevityAT

Thank you for your heart felt update. We don't go through this journey alone and sometimes it is a rough ride for those we love as well. In the end, love is stronger than the cancer and always prevails. Sending positive energy your way!

Scout4answers profile image
Scout4answers in reply to LongevityAT

Thanks, I need all the positive energy I can get right now.

Maxone73 profile image
Maxone73

I cite from the institute of pet imaging of south florida and urologytimes.com

"Generally speaking, PSMA PET Scans using PSMA (18F-DCFPyL) have been shown to be effective at PSA levels above 0.2ng/mL. Also generally speaking, the higher the PSA level (when restaging patients), the more likely a PSMA PET Scan is to detect and identify recurrent prostate cancer."

"And also, the other major point to just have in mind is in terms of the overall nature of the fluorine-18 and the fact that it may have some higher background bone uptake in some cases, and also the pitfalls. We need to consider that the fluorine 18–labeled compounds may show some more benign findings to have uptake."

I had a pet scan last week with psa between 0.05 and 0.06, it still showed the main metastasis, probably it missed the smallest ones but it would also mean that they are not as active as they were before (hopefully!), but I think 0.5 would be accurate enough

Scout4answers profile image
Scout4answers in reply to Maxone73

Thanks for the up to date info.

Maxone73 profile image
Maxone73 in reply to Scout4answers

fight on!!!! 💪💪

WhatHump profile image
WhatHump in reply to Scout4answers

That seems like a convoluted way of saying “The higher your PSA, the more likely there is metastasis, so the scan is more likely to find something.”. No?

Happy Birthday. Wishing you many more.

Scout4answers profile image
Scout4answers in reply to WhatHump

Thanks Hump, hope all is well with you.

MateoBeach profile image
MateoBeach

Happy Birthday Scout. Protecting and enhancing relationship with Coco is of utmost importance, as you know.

Scout4answers profile image
Scout4answers

I do know that , thank you. How is your recovery coming?

Haa2020 profile image
Haa2020

Happy birthday to you, Elder. Wishing you more fruitful years. Enjoy

Scout4answers profile image
Scout4answers

thank you

j-o-h-n profile image
j-o-h-n

Regarding Females and Love issues............ Remember from experience, "you should never put all your eggs in one basket".......

A happy (and I do mean happy) and a free as a bird birthday to you....

Good Luck, Good Health and Good Humor.

j-o-h-n

MoonRocket profile image
MoonRocket

If you do need to restart treatment, discuss mono enzalutimide with your MO. I've been on it now for 6 months and I have to say, other than mild fatigue, I feel really good. I'm pretty active and I still work full time without any cognitive issues.I highly recommend getting the breast radiation as it does seem to be working for me.

Your T has a way to go since you're still in the castrate range... let's see what the next 3 months brings.

Still_in_shock profile image
Still_in_shock

You still have a prostate? And worries about .03 PSA??

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