Biochemical Recurrence

Posted by johnny99 @johnny99, 8 hours ago

Last week, I found that my PSA rose from 0.064 to 0.327 in about 17 months. Here is my history:

Diagnosed in 2015 with prostate cancer at age 51.
Prostatectomy in September 2015.
Gleason 9 (4+5) at the time of surgery with very small (less than 1.00 mm) positive margins.
Adjuvant radiation treatment (9 weeks) in Jan/Feb 2017 because of a PSA bump.
Undetectable PSA through at least September 2024.

This PSA jump has me rattled. I know figuring things out (PSMA-Pet scan) is the first step but given my age and my Gleason score, I am, frankly, a bit scared.

Any thoughts?
Johnny99

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Sorry about the rise in PSA over the past year. I have no info to share (I am still pre-treatment).

Just want to offer my best wishes to you and your family.

REPLY

The first thing you need to get is a PSMA Pet Scan. This will tell whether or not metastasis have started to spread around, that are visible, If so, then they would want to do chemo or Pluvicto, or xofigo If the metastasis are only to the bone.

Have you had a hereditary, genetic test? You should make sure to get one to find out whether there is something in your hereditary, causing this very early onset of prostate cancer. I have BRCA2 a genetic problem that resulted in my getting prostate cancer at 62, My brother got it at 77 because he doesn’t have that genetic problem. My father died from prostate cancer, which more than double the chance we would have it, But I got it a lot earlier.

If they are planning to do Pluvicto You should make sure to get a somatic, genetic test. There are some genetic problems that don’t work well with Pluvicto, So you want to make sure you don’t have those. There are other genetic problems that actually make it work better. If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant. You could have one of these either by heredity or as a result of a somatic test that shows that your metastasis have it.

If you don’t have any metastasis in the pet scan Then they probably are going to put you on ADT and an ARPI. If you are working with the center of excellence or a Genito Urinary oncologist (The medical oncologist that specialize in prostate cancer) They almost definitely want to put you on both drugs.

They frequently want to put you on Lupron but you should ask for Orgovyx Instead, it’s a pill that you take once a day that works just as well but has fewer side effects for many people, and when you stop taking it, your testosterone comes back much quicker. Talk to your doctor about this, You need to be proactive and let them know that is what you prefer. You need to make sure your insurance will cover it. It Costs about $2500 a month but you don’t pay that with insurance.

The ARPI is the other drug they will use. Frequently they will start off with Zytiga. It has some pretty serious side effects for some people but for other people it works just great and they have no problems. It is a generic drug, now off patent, so you can get it for $25-$40 a month. There are three other drugs in this category. Apalutamide (Erleada), Enzalutamide (Xtandi) and Darolutamide(Nubeqa). If you have any metastasis or are castrate resistant then you can get Darolutamide Which has the least side effects of them all. If you do not have metastasis, and are castrate sensitive Then you probably want to start off with apalutamide. All of these pills are very expensive, $12,000 or more a month. You need to speak to your doctor about this, There are a lot of different options. Doctors will pick.

I am Just supplying all this information so you are aware of the options.

REPLY
Profile picture for charlesprestridge @charlesprestridge

Sorry about the rise in PSA over the past year. I have no info to share (I am still pre-treatment).

Just want to offer my best wishes to you and your family.

Jump to this post

Thanks, it does mean a lot. Good luck on your treatment. The best advice I can offer is that you can only fight the battle that is front of you and try not to worry about "what ifs" or "what might bes." I will be happy to share my experiences if need be.

REPLY
Profile picture for Jeff Marchi @jeffmarc

The first thing you need to get is a PSMA Pet Scan. This will tell whether or not metastasis have started to spread around, that are visible, If so, then they would want to do chemo or Pluvicto, or xofigo If the metastasis are only to the bone.

Have you had a hereditary, genetic test? You should make sure to get one to find out whether there is something in your hereditary, causing this very early onset of prostate cancer. I have BRCA2 a genetic problem that resulted in my getting prostate cancer at 62, My brother got it at 77 because he doesn’t have that genetic problem. My father died from prostate cancer, which more than double the chance we would have it, But I got it a lot earlier.

If they are planning to do Pluvicto You should make sure to get a somatic, genetic test. There are some genetic problems that don’t work well with Pluvicto, So you want to make sure you don’t have those. There are other genetic problems that actually make it work better. If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant. You could have one of these either by heredity or as a result of a somatic test that shows that your metastasis have it.

If you don’t have any metastasis in the pet scan Then they probably are going to put you on ADT and an ARPI. If you are working with the center of excellence or a Genito Urinary oncologist (The medical oncologist that specialize in prostate cancer) They almost definitely want to put you on both drugs.

They frequently want to put you on Lupron but you should ask for Orgovyx Instead, it’s a pill that you take once a day that works just as well but has fewer side effects for many people, and when you stop taking it, your testosterone comes back much quicker. Talk to your doctor about this, You need to be proactive and let them know that is what you prefer. You need to make sure your insurance will cover it. It Costs about $2500 a month but you don’t pay that with insurance.

The ARPI is the other drug they will use. Frequently they will start off with Zytiga. It has some pretty serious side effects for some people but for other people it works just great and they have no problems. It is a generic drug, now off patent, so you can get it for $25-$40 a month. There are three other drugs in this category. Apalutamide (Erleada), Enzalutamide (Xtandi) and Darolutamide(Nubeqa). If you have any metastasis or are castrate resistant then you can get Darolutamide Which has the least side effects of them all. If you do not have metastasis, and are castrate sensitive Then you probably want to start off with apalutamide. All of these pills are very expensive, $12,000 or more a month. You need to speak to your doctor about this, There are a lot of different options. Doctors will pick.

I am Just supplying all this information so you are aware of the options.

Jump to this post

Thank you so much for all of this information and thank you for your time to write all this up. I will do my research. Obviously, the PSMA Pet Scan comes first and then I know the battle that I have to fight. Luckily, I live in the part of the country where there are three top-ranked cancer treatment centers all within a manageable drive.

Take care and sending much thanks your way.

REPLY

Hi Johnny , I am so sorry to hear that you have to deal with PSA jump the third time around : (.

My husband had exact the same findings post RP (one of the margins was inconclusive) and he is probably facing salvage RT in very near future (maybe in a month or two) , so if you do not mind me asking - how did your salvage RT look like ? Did you have the whole pelvic area plus nodes done and what kind of ADT you had and for how long ? Also, if you remember total Gys administered, it would be very helpful too.

Thanks so much in advance and wishing you super successful future control of PC 🍀🍀🍀

REPLY
Profile picture for surftohealth88 @surftohealth88

Hi Johnny , I am so sorry to hear that you have to deal with PSA jump the third time around : (.

My husband had exact the same findings post RP (one of the margins was inconclusive) and he is probably facing salvage RT in very near future (maybe in a month or two) , so if you do not mind me asking - how did your salvage RT look like ? Did you have the whole pelvic area plus nodes done and what kind of ADT you had and for how long ? Also, if you remember total Gys administered, it would be very helpful too.

Thanks so much in advance and wishing you super successful future control of PC 🍀🍀🍀

Jump to this post

Hello, thanks for reaching out and here is what I remember about my SRT.
During surgery, I had 21 lymph nodes removed along with the prostate gland. I had very targeted radiation that I think was around 66 Gys. In fact, I was "tattooed" so they could line me up right for radiation. It lasted for nine weeks, five days per week.

I have never had ADT be it intermittent or systemic. However, I chose SRT as soon as my post-surgical PSA began to go up. That might have been the reason they did not couple my SRT with ADT - too many acronyms!

Other than the daily two-hour round trip drive in winter, the SRT was pretty smooth and I had no side effects other than fatigue.

I hope this helps and please let me know if I can answer any more questions. I wish you and your husband and awesome outcome through these procedures. And, thanks for the positive vibes for me in my situation. Once it is decided how to proceed it will be easier. Right now I feel like I am looking into a stew of uncertainty.

REPLY
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