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Looking for advices for rising PSA

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Posted 2/16/2022 6:44 PM (GMT -5)
My PSA was stable for about 5 years after extended total prostectomy and Radiation and Two dose of Lupron injections in 2015-2016. I had very bad side effects with Lupron. ADH was stopped after 2 Lupron injections. After the treatments my psa was stable and in a range of 0.03-0.04 from 2016-2020. I was not testing PSA for a couple of months in 2021 because of covid issues. Then I tested Aug 2021 at 0.09, Nov 2021 0.13, Jan 2022 at 0.15, and Feb 2022 at 0.17. I am a bit neurous now. I would like to ask if anybody knows.
1. What is my PSA doubling time?
2. What is the next step I should looking for?
Any advices and suggestions would be highly appreciated.
Thanks a lot.
Posted 2/16/2022 8:20 PM (GMT -5)
Hello, sorry you are back.

Your current doubling time is < 1 year (8mos?) but it is hard to estimate with any confidence based on a few monthly tests with small numbers that all can be ±0.01.

It seems that there would be two choices at this point 1) go on a different ADT drug (lots of them now) which should immediately knock your PSA down or 2) let PSA rise to the point where one of the new PSMA scans might locate the PSA source(s) for possible treatment. I see no negative in letting it rise to minimum detectable limits (0.30-0.50) given your long history.

Obviously, getting with a good prostate oncologist at this point is warranted to develop a plan after analysis of your history and recent events. I suspect they would push for the PSMA scan after watching your PSA for a while. All I can think of right now.... Hang in there.
Posted 2/23/2022 12:38 PM (GMT -5)
Thank you so much Mumbo.

Your sugestion is so helpful and I think your knowledge is even much more than most of medical professionals. I only have a urologist to follow my PSA. I asked him to refer me to a medical oncologist as urologist is major in surgery but medical oncologist is major in the use of drugs. My urologist said only if I am castration-resistant, he will refer me to a medical oncologist. At my stage, urologist can use ADT drugs if needed.

At this time, I would wait like you said to see my PSA level changes every 3 months. Is there any way to try to slow down the PSA increase? How about take some Asprin or melatonin? How about to stop eat meat, milk, eggs? any successful stories? Thanks.
Posted 2/23/2022 1:27 PM (GMT -5)

andyatli said...
My urologist said only if I am castration-resistant, he will refer me to a medical oncologist. At my stage, urologist can use ADT drugs if needed.
.

That sounds like outrageous arrogance to me. I suspect your case is beyond the expertise of a urologist at this point. My advice is similar to Mumbo's, i.e. seek out a good medical oncologist with excellent experience in prostate cancer treatment. Even if your urologist refuses to refer you you can find someone.

If it was me I would be consulting with Dr. Scholz' practice at this point even if remotely.

Jim
Posted 2/23/2022 3:20 PM (GMT -5)
I agree that it is time to see a good prostate specialist medical oncologist. And you mention that all the oncologist does is drugs and that is correct. You have already had surgery and radiation and they weren’t successful.

The oncologist is the drug specialist but will also use imaging to see whether and tumors have developed and could bring back the radiation oncologist for some treatment.

Search for one and clearly don’t depend on the urologist for any assistance. It is easy to find a medical oncologist.
Posted 2/23/2022 6:03 PM (GMT -5)
Do you live in US or elsewhere? There are a lot of variations with medical insurance and health care systems. My Medicare plan does not require referrals. If it did, my principle care provider would provide the referral if asked, not an urologist. No specialty controls prostate cancer treatment here but the urologist usually discovers it as the first referral.
Posted 2/24/2022 11:53 AM (GMT -5)
Thank you all, peers. I am in BC, Canada. I believe here in Canada, the medical system is significantly different than in the USA. The medical professionals here are outrageous arroganent as they are in shortage. I should try to find a good medical onologist. I will try.
Posted 2/24/2022 12:40 PM (GMT -5)
Don’t know you get in to the link below but some others have been there and have reported good things.

https://www.prostatecentre.com/

Your situation warrants that type of advice.
Posted 2/25/2022 12:31 AM (GMT -5)
Thank you so much Mumbo, I checked the website you mentioned. I will try to be referral to there. I find Dr.Kim Chi seems an experience doctor over there. Is there anyone who has seen Dr. Chi? What is your experience？
Posted 2/25/2022 10:36 AM (GMT -5)
Can’t help with specifics but I would just call the Centre and ask them what the procedure is for your situation. They may be able to suggest the easiest or most fool proof way of getting evaluated by them or they may be able to initiate things on their end. I wish you luck beating the system and getting the attention you deserve, don’t give up at any point.
Posted 2/25/2022 11:43 AM (GMT -5)
Your Urologists treatment plan for you is palliative therapy and has zero chance of cure. I realize Canada medical is different, but I would stay off ADT, wait for a PSA increase and get a PET scan even if you have to go out of pocket.

Post Edited (Duck2) : 2/25/2022 9:46:02 AM (GMT-7)

Posted 2/25/2022 11:55 PM (GMT -5)
Thank you Mumbo and Duck2. Your advice is very helpful for me to make the decision. Yes, I would wait 3 months to see the next psa result.
Posted 2/26/2022 9:41 AM (GMT -5)

Meanwhile, you have everything to gain by booking an appointment with a pn expert ONCOLOGIST --- who can lead you forward. Some get booked up in advance, so factor that into your planning, as you look ahead.

In my case, adding an oncologist opened a great number of doors, where my original urologist had only seen brick walls. It was an impactful and beneficial decision.

Since this subject was broached above --- LUPRON did not work for me, as it didn't fully suppress testosterone, leading to "spikes and flares" in PSA. We tried FIRMAGON next --- same result.

Last of all, I tried ZOLADEX --- and it leveled off my testosterone and helped control my PSA.

It was not an issue to transition from one form of ADT to another. I was on LUPRON and FIRMAGON for months --- but ZOLADEX worked best for me, and I have remained in it for years.

For your case, it's good to know there are options out there. An oncologist can lead you forward. Get out your calendar, and get an appointment scheduled.

You have everything to gain by adding a consultation with an oncologist to your calendar.

I sense it's already weighing on your mind, from your post, so you'll have no regrets getting something booked. A proactive approach!

Keep us posted --- there's a lot of support here! Let us know how you're faring!

Sending my best wishes your way, from across the miles!

With my best ~
CYCLONE - # Iowa State University
Posted 3/1/2022 11:00 AM (GMT -5)
Thank you very much Cyclone. Your experience is helpful for me. I should find a medical oncologist first to get some advice. I would wait until PSA reaches 0,4 and at that psa level, my doctor will do a pet scan to see where are the new growth located. Thank you all for your suggestions. Best wishes for all of you!
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