Thoughts on vacation and PSA - Advanced Prostate...

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Thoughts on vacation and PSA

PGDuan profile image
35 Replies

Hi all,

Bit of a complicated question, but I'll ask since I'm scheduled to start an "ADT vacation" next month. Is an increase in PSA from <0.01 to <0.014 significant?

Sorry in advance if I'm worrying about nothing and to all those here dealing with harder fights.

So here's my deal. Today's PSA was <0.014, up slightly from <0.01 for the last year. I am grateful the result is very low, but it is up unless there is random noise in the tests. Is the small increase meaningful? I should add that a recent PSMA PET was all-clear.

As context, I'm just finishing 12 months ADT+Nubeqa and last fall I finished 6 months docetaxel and SBRT to a suspect vertebrae and rib. PSA was 0.8 with 4-month doubling at BCR when I started all the above.

Meeting my primary oncologist to confirm plans, and then I have a followup with Dr Sholtz at PCRI. Planning to ask both about the "vacation", what to do if/when PSA rises further, and what's new for consideration (BAT, Xofigo, etc) presuming the fight is still far from over.

I know time and more tests will tell, but as always I welcome any input. Thanks all.

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PGDuan
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35 Replies
Brysonal profile image
Brysonal

was one rounded to two digits and one to three digits?

I thought the ‘less than’ sign translated to undetectable on that machine so am reading both as same number

I am not an expert at all!

PGDuan profile image
PGDuan in reply to Brysonal

ya, this what I’m hoping as well. Thanks

Tall_Allen profile image
Tall_Allen

It is not an increase. The "<" means less than, so they may both be the same number.

PGDuan profile image
PGDuan in reply to Tall_Allen

Thank you - yes, this is true and makes sense.

It was undetectable. The only difference was the lab equipment they used.

PGDuan profile image
PGDuan in reply to

Thanks - different equipment would explain it.

treedown profile image
treedown

I know where your coming from but I knowing what I know now I would not be worried by that. A jump to .028. thank .060 and then to .12 might get me to the start thinking about it but even then there isn't much to do but wait until it shows on a scan or start back on ADT right then. If you going on a vacation at what point will you want to restart ADT. That's the question you need to answer in my opinion.

PGDuan profile image
PGDuan in reply to treedown

thanks - guessing that I over reacted and I’ll chalk it up to PSA test anxiety.

Like you say, probably not much to do at this stage anyway but hope for the best and see what happens over the coming months.

treedown profile image
treedown in reply to PGDuan

The more things change the more they stay the same :0)

addicted2cycling profile image
addicted2cycling in reply to treedown

IS follows WAS

WILL BE follows IS

forget WAS, live IS, WILL BE might not

treedown profile image
treedown in reply to addicted2cycling

Thanks Yoda :0)

tad4 profile image
tad4

Ok, read my biography and you will have an idea. With my Gleason scale of 9,there is a likelihood that my PSA will rise from the current .008 because I have now begun a vacation from ADT. My last implant was Feb 2023, so I don't expect any change for at least 6 months. Monitor your PSA and if and when it gets to 0.35, then get a PSMA PET-CT scan. Getting the scan earlier with a lower PSA will most likely reveal nothing. My Urologist believes 0.3 to 0.35 is the threshold for the scan. The unknown is when your PSA is going to rise. With GS of 7, you might be ok for yrs. My thoughts only based on my team.

PGDuan profile image
PGDuan in reply to tad4

Good target of around .3. I started as GS 7 so hoping for a good break. Thanks

NecessarilySo profile image
NecessarilySo

For years I was on what they call "intermittent" hormone therapy. I had 3 shots in 90 days, 30 days apart, then waited for PSA rise before continuing. My RO waited for the PSA to rise to 4 before scheduling another series. Twice, the "vacation" lasted about a year after the previous shot. I then vacationed for four years, during which my PSA rose to 35. I resumed hormone therapy and PSA returned to <0.1 for the past three years.

PGDuan profile image
PGDuan in reply to NecessarilySo

thanks for sharing- helpful to hear. Hope things continue well for you!

EdBar profile image
EdBar

For me, I was undetectable for 6 years despite being diagnosed Stage 4 with a Gleason of 9. I had the opportunity to take a vacation but all my doctors said if it’s working don’t fix it, I listened to them and felt it made sense, why gamble with the reprieve I was given? I decided to keep my foot on its throat and continue ADT. That’s my experience, just sharing.

Ed

PGDuan profile image
PGDuan in reply to EdBar

Thanks EdBar. Keep up the good fight! Glad it’s working for you.

Jp2sea profile image
Jp2sea

Although a vacation sounds nice, I'm afraid that the disease won't take any time off and will have a chance to spread. Unfortunately, I think that there are no breaks on our train ride, so personally, I'd stay the course and would find other ways to enjoy the ride. I'm sure you want the adventure of life to last as long as possible. Best

PGDuan profile image
PGDuan in reply to Jp2sea

yes- tough trade offs and I do want longevity- with good QOL. Thanks for the input.

dadsdrdawn profile image
dadsdrdawn

That sounds like good news to me. And, as the daughter of a father that is 16+ years at 87 with cancer...and on the SPLASH trial...here is what I can tell you that i have learned from my father, and from Dr. Geo Espinosa.

(I urge ALL men and caregivers in this group to check him out. He's a caring human/MD/Holistic practitioner for male health issues/and writes a VERY optimistic blog and has a podcast about dealing with PSA #'s, stress, living etc...)

"A chronic state of stress and worry will harm you, and debilitate you faster than a slight raise in a PSA" - Dr.Geo

My dad does not spend much time talking about his cancer. He DOES talk about what he looks forward to doing the next day or week, or year.

On days that he is nauseas and "can't do much" he draws, builds lego, and watches golf or nature shows".

On days that he feels good , or "OK" which is more days than not( between bouts of gagging and slight vomiting in the morning) - he focuses on his NEW JOB.

He's a retired architect that has designed major retail malls in the US...and has been HIRED to draw up the plans and meet with the new architects at his firm that he retired from over 12 years ago. JPRA (my dad is James Patrick Ryan (associates) ... has done malls that maybe you have been to??

Mall at MIllenia - Orlando, FL

Somerset Collection in Troy, Michigan - the one he is doing the plans for the renovation

The Shops at Waterside - Naples, FL

The Gardens - Jupiter, FL

If you get a chance to ever go to these beautifully designed places, you'll feel a calm and see the beauty that is associated with everything my father has designed in the US. (more in other countries)

I pray that all of you here, caretakers and patients, find something to focus on - that brings you joy...and manifest more of that in your life.

Sending you prayers of healing and many happy moments,

Dawn

PGDuan profile image
PGDuan in reply to dadsdrdawn

Thanks Dawn. That’s good advice - thinking about Pca too much USD exhausting and stressful. Your dad is pretty special and lucky to have you.

pe43 profile image
pe43

I've watched some of Dr. Scholz's videos, and I suspect he'll say that any PSA value below 0.1 is fine.

VLBIV profile image
VLBIV

I have only been a part of this community for about a year, but what I have learned throughout this ordeal is to focus on trends, not absolute numbers. Numbers will fluctuate and you will have stress over those numbers, but try to stay calm and focused on the big picture (PSA doubling time, etc.) and not on one number. A positive attitude is much healthier than the worry resulting from one data point. I wish you the best!

SteveTheJ profile image
SteveTheJ

My impression is you don't take a vacation unless the side effects are so onerous it makes daily life difficult. I think your PSA is too low to worry about.

Hailwood profile image
Hailwood

I hope the vacation works for you. My choice has been to remain with the "hot goalie" (ice hockey reference), and ride the horse until I need another one. I like seeing T less than 0.5 and PSA less than 0.02 every 3 months, but I see a lot of people considering a holiday from meds. I hope it works.

First, you are undetectable with first and second line ADT and spot Radiation after a Prostatectomy in 2018. Undetectable is anything <0.1. Ultra-sensitive testing will not lead to any treatment choices.

Second, you have systemic disease. I do not know anything about second and third line ADT. Back in 2004, systemic treatment meant chemotherapy to tackle the unseen and undetected micro-metastasis traveling in the vascular and lymphatic system looking for a place to land and multiple. That’s why whack a mole radiation to prevent spread is doomed to fail. Granted one can continue with this method for years until the tumor burden become to invasive. However, this is a valid personal decision. I just disagree with the methodology.

Third, and again this is a personal decision, I do not believe in vacations. In my mind all it does is give the cancer a chance to continue its growth.

I am not in the medical profession; just a guy who reads and listens to the pros; one who was metastatic in April 2004 and micro-metastatic in March/April 2003 on original diagnosis of Prostate Cancer. We all make varying decisions on how to fight this bastard. Best Wishes...... GD

PGDuan profile image
PGDuan in reply to

thank you- really appreciate the perspective. you’ve been on quite the journey with this beast.

Bill2005 profile image
Bill2005

I've had stage 4 metastatic prostate cancer for almost 14 years and have enjoyed 5 or 6 vacations that the shortest one was 10 months and longest was 30 months. Felt so much better during those vacations. I usually go back on hormone treatment when psa gets up to 1 or at most 2. I've gone to Dr. Sholz and Dr Lam (prefer Lam) for 10 years. The studies concerning taking vacations or not only showed a couple month difference in life span. Even though testosterone may not get back to previous levels not having the side effects from hormone block is great.

PGDuan profile image
PGDuan in reply to Bill2005

thanks for sharing- sounds like the same studies I’ve been considering.

timotur profile image
timotur

Looks like the tests were done at different labs. Both PSA readings were below the testing limits of the testor, so it's really an inconclusive result as to whether there is an increase or not.

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

Duan, my favorite time of the day. Waking up with that wonderful wife beside me in a cozy bed.... it's such a joy and brings tears to my eyes when I realize I fell asleep in my girl friend's apartment........so now what do I tell my wife?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/26/2023 10:48 PM DST

PGDuan profile image
PGDuan in reply to j-o-h-n

l-o-v-e it!! Enjoy.

Hobierat profile image
Hobierat in reply to j-o-h-n

Hey J-o-h-n, I occasionally have that same dream . JJ

j-o-h-n profile image
j-o-h-n in reply to Hobierat

I'll trade you your dream for a dream of my ex-wife....and I'll even throw in her broom.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/26/2023 5:18 PM DST

Nfler profile image
Nfler

imo go for it, there are major advancements coming in the near future that will hopefully stop this horrible disease dead in its tracks n you can always go back on adt with any kind of significant rise in psa…😁

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