I had my RP last January but the cancers had sneaked out to my lymph node already (no other met) so my PSA was always detectable. I started hormonal therapy last April and my PSA went down right away. It had been that way till this week ( PSA was up and down, the lowest was 0.02, usually was 0.05.). Today's reading is 0.285 that worries me. I phoned my doctor to see if I should be on Zytiga or so to control my PSA ( I receive shot of Diphereline monthly and on Casodex daily) but he said it is still all right. I remember I read somewhere saying if PSA goes up to 0.2.., its time to do something. Can some one share your understanding and experience to see what should I do ?I am 81. I am not ready to die yet. Thank you.
PSA at 0.285: I had my RP last January... - Advanced Prostate...
PSA at 0.285
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Formosan
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Re-test to be certain. "Measure twice, cut once", useful advice not limited to carpenters only.
Thank you, Justfor. I will ask my doctor to order a re-test if he will. Often doctors are not that sensitive to human suffering either psychological or physical. Actually, i phoned him for that and he said the insurance may not cover that. I wonder if PSA will go up and down from time to time.
I take monthly PSA tests. The public healthcare system here prescribes up to one every 3 months. But, the cost is low, i.e. 14 Euros or about 15 USD, so no problem paying out of pocket for the remaining 8 per year. As you may understand with more than 60 test undertaken, two of which proved erroneous on retest, I have developed some personal assessment "guidelines":
a) Any test deviating more that +/- 30% from my projected estimate needs to be retested next day with a different lab.
b) Less than 20% variance between the same or even different labs is considered as normal.
" Any test deviating more that +/- 30% from my projected estimate needs to be retested next day with a different lab. " ----- this makes sense to me. I am with you. Justfor, Thanks.
Do you suggest different % variables depending on PSA range? As I correlate PSA value to cancer volume, seems to me a 30% deviation in 0.03X range is a different consideration than say 30% at PSA value of 50. When I experienced a variant such as 0.033 to 0.045 then 0.031, (actual monthly results of mine), I do not think retest, possible lab error, I think changes in cancer volume. IMO if we commonly face risks of lab errors how do we know which lab result is correct? Might the correct result be the one we think is wrong?
No, I am talking unexpected PSA values well above the rounding error. In your example 0.03 is bellow the rounding error, so it will take a higher margin to justify a retest. For example, I had 0.05 for a couple of months from lab A and then 0.03x from lab B. Didn't retest but following month tested with lab A that returned 0.03.
Although ultrasensitive testing is dismissed by some (or more), I rely on testing to thousands and focus more on trends over months than a single notable variation. In your example, I would take note of variation from .039 to 0.050 differently than 0.030 to .059. Again, more than differences in labs, hydration and even effects of say biotin, I think of changes in cancer volume occurring.
My problem is that the 2 labs I routinely use report to different decimal depths. One to the hundreds the other to the thousands. A third one that I once used as an arbitrator, also reports to the hundreds. As you correctly stated it is the trend that finally matters. Precision is enhanced by oversampling, i.e. monthly vs quarterly. But, information theory knowledge is beyond the pay grade of the average doc.
(oh it is astounding that patients can educate docs). IMO, often what is thought of as lab error is a lack of knowledge as to what value a lab will report; lack of knowledge of docs, lab staff, patients.
A few years back a new to me lab gave me a shocking result - one many would call an error. That was in France. After multiple communication attempts came to realize the lab simply chose to not report lower than the reported value, and chose to not use the < symbol.
As advised by all those who responded to me, I went to see the urologist who did the surgery for me last week for a re-test and the result came out today. My PSA is <0.06. I think I can relax myself a little bit. Thank you all for sharing your experience and knowlege with me. I am still wondering, however, which testing method, EIA or RIA is a better way to follow?
Excellent news! Don't know what EIA or RIA stands for, but the reported PSA values differ by the analyzer that was used. Highest count by Roche Eclia, followed by Abbott Alinity, Siemens and finally Beckman Coulter. I use two labs that are equipped one with Roche the other with Abbott.
Geez, we thought it was "Measure once, cut twice".............................. HEY ANA........ do I have exciting news to tell you..........
Good Luck, Good Health and Good Humor.
j-o-h-n
I had an RP in January 2022. The cancer had spread to 1 lymph node. I was put on Eligard in April 2022 and abiraterone (zytiga) in June 2022. I stayed on both drugs for 24 months. I also had 32 sessions of radiation to the prostate bed and the pelvic lymph nodes. I think that treatment is pretty standard for when PSA persists after an RP
I did not have radiation because of the serious incontinence after the RP. I still have leakage when walking. I wish I could go through the standard treatment if I could. Thank you Alturia for sharing your experience.
I know what you mean. I was incontinent for about 8 months after the RP and was ecstatic when I finally got continent. Then about 3 or 4 months after the radiation the incontinence was back with a vengeance. Urologist and physical therapist have told me that the only solution is an AUS but I'm not ready for more surgery so I have learned to live with pass
it appears we are almost identical in our treatment except I had radiation the first go round. Then found the one lymph node.. did 24 months of ADT. I am 66.
Almost the exact same timing. Keep me posted on your treatments etc. i will do the same!!
icanwintwcie, yes, I will update my condition to keep you in loop. Did you have RP ? I thought there are differences in those who go through RP and those who choose radiation. Most of the people I know who suffer from this same illness chose radiation ( 40 times-- 5 days a week) and their PSA drop only gradually. can we compare these two groups of patients to come up with a similar prognosis? I like to know if anyone has some knowledge of it please.
Why didn't you get salvage radiation?
I always appreciate your response. Do you think at my age I can still risk the possible side effects of salvage radiation such as urination bleeding and colon damaging especially I still have some leakage issues ? I will discuss with my doctor about it.If he can arrange it perhaps I should try. Another question I have is in regard to Gleason score. Mine is 10. Does that mean the metastasis is more likely making the prognosis gloomier?
"... Do you think at my age I can still risk the possible side effects of salvage radiation such as urination bleeding and colon damaging...?"
I think that would be from poorly-done radiation, and much less common now than in years past. The equipment and ROs are better.
At age 78 I had 20 IMRT without spacer for the prostate, and at age 80 I had 30 IMRT for pelvic nodes. I had no discomfort, and now at age 81, no side effects from those radiations.
Like Vintage at 78 it was a walk in the park. Age should not limit your options.
I only had radiation to prostate and pelvic area at the same time no RP. Took about 4 to 6 months and I am better than new.
I had space oar for radiation, after chemo, no surgery. I've had no symptoms after treatment.
What is space oar? I heard I must drink a lot of water to full my bladder and empty my bowel before the radiation.. But I am incontinent..
Of course, you can still have whole pelvic salvage radiation. The urinary side effects may get worse, so that is something you'll have to weigh against a possible cure. Your high Gleason score increases your risk of metastases, which you already had - in your lymph nodes. So you have already experienced your "gloomy prognosis" by not taking action before it metastasized to your lymph nodes.
Restest PSA
Thanks. I will and hope it will be lower. if not, my goodness, if I can take it...
I thought the trigger level for concern about PSA rising after treatment was 2 points above nadir, not 0.2.
Hi, I too have the cancer in the lymph node, I started on casodex and lupron, but for about 5 of the total 11 years 9 months I have been on Zytiga 500mg, Lupron, 3 monthly and prednisone 5mg. My PSA like yours wouldn't stay low and continued to rise, but it had fallen steadily and remains indectable.
If I was you I would get another blood test done and if the PSA is still rising, insist on Zytiga.
I wish you well.
Thank you, Lettuce. I heard Zytiga or Xstandi is really effective. My doctor won't prescribe it to me saying that my health insurance does not cover it.
I'm sorry to hear that, what a dilemma 😕
I'm in the USA and Zytiga is pretty affordable without insurance through Marc Cuban's pharmacy...I think it is less than $150/month. Xtandi is quite expensive, about $4000/month if you order through a Canadian pharmacy.
hi
My husband was in the same situation like you. He has got salvage radiation afterwards. His treatment finished in 2018. His psa is 0.005 now
My poorly suggestion is:
Always get tested in the same place if possible. Get tested again. Talk to your doctor about radiotheraphy if psa is getting higher.
Good luck
Thank you for your suggestion. I will talk to my doctor about it. I wonder if I am too late for the radiation now since my RP took place 17 months ago. I am happy for you that you have solved the problem.
PSA can be affected by your activities; having sex, riding a bike, exercise, etc. I've heard it also varies by the time of day. I definitely would test again. It's still very low!
zytiga is now available cheap on costplusdrugs.com
A great news. I will try to log in to see I can order but I am in Asia that may be a problem.
Salavage Radiation of prostate bed and pelvic lymph nodes beoiuggt my PSA to <0.01.
Thank you for sharing this experience. I will talk to my doctor about it. But I am afraid it may have negative impact on my bladder and colon as I have news how people suffer because of it. At my age, perhaps I only have very limited year left. Should or I should I not?
My understanding and experience is to not give this beast time and obscurity. After my unsuccessful RP I set 0.1 as value to take next actions. After my unsuccessful salvage RT I set 0.05 (edited typo) as value to take next actions. I do frequent PSA testing and graph results which clearly shows tread line.
Indeed, I should try to eliminate this beast. Hope new treatment can be found to get rid of this evil. What do you mean that your RP is not successful and what actions do you take to salvage?
My RP did not get all the cancer as it had spread beyond the surgical field - IMO not successful. So I tried salvage RT to prostate bed, hoping all my remaining cancer was still within the RT field - it was not - it had again spread further than hoped/thought. So then after imaging I did salvage lymph node surgery.
At 0.5 you may as well get a Pylarify scan. That’s the lowest PSA value to give significant results.
What is Pylar scan? Is it same as PSMA? I asked my docyor about PSMA and he said it is very expensive not covered by my insurance. If my PSA reaches the level that PSMA can show the met, i surely will ask for it.
Check again, if need be fry the bed. For me 39 sessions of frying were a walk in the park but a couple of years later they discovered my left urinary tract was partially prolapsed and I needed an in and out stent every 3 months for a few years. The in and out stents also were a walk in the park and eventually not needed, except now 15% urine is from my left kidney and 85% from my right one - which is a noburger burger. The frying of the bed was when I was 69 years old.
Get a GOOD R.O. if you're going to fry the bed.
Good Luck, Good Health and Good Humor.
j-o-h-n
Yes, I will ask my doctor about it or see a MO. I like your humor -- Good Luck...Good Humor. But with this beast, how can I be? How do you have that positive attitude? From my memory, you are older than me and have a good experience dealing with this evil. Do you receive your optimistic outlook from faith or what?
Hello Formosan,
When I was first diagnosed and had my RPD in 2002 I was a walking mummy. I was that way for a couple of years and thenl I realized I would eventually be a dead mummy. So I thought I've rather live till I die rather than die till I die. So that's when I decided "fuck that shit"and I started to use my so called humor to make me happy and to put all this Pca shit on the back burner. I soon found out that if I make someone laugh that it makes me laugh too. Therefore it's a twofer. I tell people to laugh cause it's much better than crying and to remember "the more you cry, the less you pee". I know it's difficult but being sad does not help your morbidity so you might as well be happy. That's it!!!
BTW I am 87 and have been fighting the fucking beast for 22 years.
Keep well and BTW I remember when Formosa was called Taiwan.....
Good Luck, Good Health and Good Humor.
j-o-h-n
I had RP surgery too. Same situation. Lymph nodes. Tripplet therapy worked fine for me.Many of my responses to others deal at great length about my diagnosis and my experience with triplet therapy.... Have a look.
Briefly, I started it with a PSA of 0.29 it has returned me to <0.1 I have stayed there during and after completing my 6 Taxotere treatments.
I liken Chemotherapy as ROUNDUP for the body. It circulates and kills those little bastards wherever they are hiding.
The trick is to be stronger than the treatment.
In my case, I was...
Best wishes
Ron
Formosan• in reply to
I thought chemotherapy is one of the last choices. Do you have it? Doesn't it come with many side effects?
• in reply toFormosan
Post RP surgery and subsequent spread, tripplet therapy was my first line of defense.
Oncology recommended hitting it hard upfront!
Lupron shot upfront. Casodex to control the initial testosterone flare, then stopped. Low dose Effexor daily to reduce hot flashes, still on. Six rounds of Taxotere given in three week increments. Pre and post medication given to handle the Taxotere "juicing". Continued quarterly Lupron injections. Transitioned onto 1000 mgs of Aberiterone Acetate and 5 mgs prednisone twice daily post Taxotere treatments.
Thus far, consistent < 0.1 PSA results.
Side effects, for me, minimal compared to what can happen. Hair fell out. It's back.
Diarrhea, now gone. and "chemo dips" a tiredness that did not resolve with rest for a day or two between 'juicings.
Each three week cycle was about the same. For me, there was no worsening, cumulative effect building upon the previous treatment.
I weathered it rather well, considering I have other medical conditions that could have made matters worse. I was at the tail end of
Age 68 during my chemo experience. I turned 69 in March..
Best wishes,
Ron
I am in Ontario Canada. I have been on Lupron more than 10 years. PSA is currently 0.48. My oncologist told me earlier he would not adding any meds until PSA reached 2.0. I am 79.
Gee, wait till 2.0 .... Is it the normal procedure? How are coping with this disease? I was in Saskatoon for many years but now I moved and have no family doctor to refer to me to see specialist. The Canadian medical system is to wait and wait till too late sometime...
It is normal procedure in the cancer centre near Toronto where I am have been treated since 2010. I am coping well dealing with the fatigue (worst issue) and hot flashes. I had kidney cancer in 1989 but had a family doctor for both cancers and got quick referrals to specialists. Can't doctors at walk-in clinics not refer you to a specialist if needed.
Salvage Radiation is best choice. Don't wait any longer!
This is me writing to all who responded to me.
I saw my urologist yesterday and discussed about my option, here is my report plus a question. I first asked him for a radation to my prostate bed. His answer was since my met is to the lymph nodes, we are not sure where the cancerous cells travel to, the radiation would seem like hitting the bird in forests without having a target. I asked for PSMA or PET scan but my PSA may be not high enought to show the whole picture and the test is not covered by my insurance and the radiation may has no result except causing unnecessray harm to the body such as damaging the bladder...etc. He said If i wanted to have the radiation, surely I could see a RO but he said he is my colleague speaking honestly out of his conscience. He suggesteds to have a re-test in a month time and if my PSA rises again, he may prescribe Xtandi instead of using first line treatment. I asked another friend, a physiican suffering the similar situation as me who said ADT is preferreable then radiation . I am in a puzzle. I perhpas will wait for another test to see what next step I should take. If I were in my 60's I perhaps would go ahead for radiation but as an old man of 80, well, I wonder...
Another question is -- can we understand the issues of those who have RP and those who don't? whether or not there are different approaches to those who have RP and those who don't ? From reading other postings i often am confused if the person who posted had RP or still having their prostates in them? Can we deal with the questions/problems the same to those who had RP and those who don't?
IMO, your logic is flawed-inversed. Radiation shows it's ugly teeth 10 to 15 years down the road. An 80+ y.o. man has limited chances to make it that long. A 60 y.o. one, will almost certainly do. I am 75 and pushing RT as far as possible for the afore mentioned reason. I see RT as my last resort, but the audience you are addressing here just treat RT as a walk in the park. But, if you read carefully, the posters are a few months to a few years from irradiation.
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