One month since PSA return: A month ago... - Advanced Prostate...

Advanced Prostate Cancer

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One month since PSA return

Jvaughan0 profile image
15 Replies

A month ago my PSA returned from undetectable (G9 removal in 2014, radiation in 2017) to .2. It was an instant call to arms in my mind... see a MO at a top cancer center asap, prepare for the newly approved Ga-68 scan and return to ADT. And then the MO said... wait. Wait can be such a horrible word. His advice is to let the PSA climb to .5 or even 1 and then try to locate it with a scan and may be even treat it with Cyberknife. "What about another PSA now?" "It has only been three weeks," his reply. One of the brothers here suggested inexpensive PSA testing that I could order from home through an online company that using my regular lab. Yesterday I used that $23 peace of mind and the test returned another .2 exactly one month after the first. Though I have added 20 mg of melatonin and several daily glasses of tomato juice, and have seriously considered adding white mushrooms to the mix, I find some irony in the fact that wait is a homonym of weight.

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Jvaughan0
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15 Replies
6357axbz profile image
6357axbz

Your MO is correct about PSA needing to be from 0.5 to 1.0 for good resolution

Tall_Allen profile image
Tall_Allen

Your anxious mindset is completely understandable- 3 years you were seemingly fine, and now this.

Your situation has surprisingly little study. There are 2 patients in my PC Support Group that have had biochemical recurrences after salvage radiation that illustrate the dilemma. They were both high risk before prostatectomy:

"Ricardo" (not his real name) had a PSA of 0.2 several years after SRT. Since then he's had PSAs every 6 months. For 2 years, his PSA stayed at 0.2. Last year, his PSA rose to 0.3. And a year later to 0.4. Owing to the very slow PSADT, he has decided to do nothing until it speeds up.

"Martin" had a PSA of 0.1 within a year of SRT. He got PSAs every 3 months. It was up to 0.2 after 6 months, and 0.4 after another 3 months. Decipher (before SRT) showed "high risk." Axumin (after SRT) showed nothing. He went on a clinical trial of Firmagon+Zytiga+Erleada for a year, which brought his PSA (every 3 months)down to undetectable. He couldn't stand the side effects of Erleada and got permission to drop it, while continuing with Zytiga. After the year, he stopped all drugs. His PSA is slowly rising, not at all like before. When his PSA will hit 2.0, he will continue with hormone therapy.

So, are you more like Ricardo or Martin? The only way to know is to continue to have PSA tests every 3 months.

Jvaughan0 profile image
Jvaughan0 in reply to Tall_Allen

Part of my anxiety came from going from .05 to .26 within a month about one year after prostate removal in 2015. Firmagon followed by lupron returned it to undetectable with T=3 during IMRT 66 GY treatment.

Yeah this is the boat I am in except I have been doing upsa tests so i got snagged with a 0.07. I am meeting with a few MO’s in the next two weeks. I still have an option to radiate my nodes.

I searched every available clinical trial for prostate cancer and found 13 that applied, but most were for psma scans and all of them needed psa greater than 0.2....some needing psa’s greater than 2.0.

Here was the list of treatment related trials in the United States that seemed to apply.

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

I personally cannot stand the thought of “wait”. I mean i went from <0.02 to 0.07 in four months. Thats like a 6 week doubling time (if you can use tiny numbers to calculate doubling time).

Jvaughan0 profile image
Jvaughan0 in reply to

I think I'm going on a math vacation for a month. I need not to think about numbers and doctors and levels and treatments. I have taken reasonable steps to control an unreasonable disease. I have given PCa enough thought for a while. Apparently this unwelcome intruder is not going to leave me, but for a few weeks I'm going to leave it.

in reply to Jvaughan0

I am having a difficult time trying to do that.

Jvaughan0 profile image
Jvaughan0 in reply to

Having cancer makes us feel like we have been time stamped with an expiration date. Truisms such as "we all die" and "there is always hope" do little to calm our racing minds along what we fear is a very short and maybe rough track. Well, within this moment and probably today and tomorrow, I own time. I am not willing to make a gift of it to cancer. It has taken enough already, but it has no control over this moment.

TonyS58 profile image
TonyS58

It must be the season. For the past 20 months, Lupron plus Apalutamide have kept my PSA undetectable until 6 weeks ago when it popped up to 0.2. Yesterday, it was 0.3. Axumin PET scan showed mostly stable except for me, that means involvement in the pelvis, sacrum and half a dozen vertebrae. Add in a touch of uptake in the musculature alongside L2 and I have some decisions to make - stick with Apalutamide or switch to Zytiga plus prednisone.

Jvaughan0 profile image
Jvaughan0 in reply to TonyS58

None of these decisions are easy ones for sure. There is an art to blending known science and personal instincts. The two are often at odds with each other. The path behind is the only clear one, but if your thoughts are focused there, you can stump into the future.

Triplets3 profile image
Triplets3

I was on a trial study where my psa went to undetectable. 2 years later I’m up to 43 but all scans are still clean. I did decide to start hormone therapy in 2 weeks though. I kinda gave up on all the numbers as it seems every case is different. Good luck!!

teacherdude70 profile image
teacherdude70

I understand the peace of mind feelings. I get my psa test monthly for $10 copay. MO suggests quarterly but she understands my need. Aggressive pca has returned after 4 yrs, now into my 6th yr and on Lupron. Psa had tripled in about 4 months to 2.18 after a 6 month Eligard failed. While all this was starting my MO suggested quarterly instead of monthly psa testing. Well that wouldn't have caught my psa at 2.18 it would have been higher.She also has suggested I will be going on to Apalutamide, Erleada, if numbers warrant. I am well and QOL is great.

My point is very low numbers, less than 1.00 are not scary. Often I read that MO´s look for 2 above NADR or doubling time. The latter is the one I think is the best measure.

All this said we are ALL different and statistics are a measure that just might not apply to any one individual specifically. There are always outliers.

Be strong, be positive, and celebrate living life!

in reply to teacherdude70

Mine was out of the prostate at psa of 4.2. Probably way before that so 2 can be high for some.

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

Though I have added 20 mg of melatonin and several daily glasses of tomato juice, and have seriously considered adding white mushrooms to the mix, I find some irony in the fact that wait is a homonym of weight.

No one promised you a rose garden.... if your psa rose a bit...........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/05/2021 7:29 PM DST - Cinco de Mayo

Jvaughan0 profile image
Jvaughan0 in reply to j-o-h-n

Tomato juice and mushrooms make a fine snack. ...and as far as roses. The thorns make you pay attention to the flowers.

j-o-h-n profile image
j-o-h-n in reply to Jvaughan0

You have a point there pointing that out......

Good Luck,Good Health and Good Humor.

j-o-h-n Wednesday 05/05/2021 8:09 PM DST - Cinco de Mayo

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