Post RT 6 years after RP with Rising PSA now at .28.

Posted by cemezzina47 @cemezzina47, 3 days ago

In 2018 I was diagnosed with PC with Gleason of 7 with no spread outside of prostate gland. Post RP PSA < .01. In 2024 levels rose from .08 to .67 and immediately had 39 sessions of RT which sent PSA down to .07. Now rising again 18 months after RT at .28. My oncologist at MSK suggesting waiting until levels get to to .8 or 1 before further intervention. I feel something needs to be done now or am I jumping the gun?

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3 1/2 years after my RP my PSA started rising and at .2 I had salvage radiation. 2 1/2 years later, my PSA started rising, and I was put on Lupron. I was a Gleason seven also.

There’s no reason she should wait to .8, Sounds like you need to find another doctor. MSK There’s a good place to get treated. Maybe you need to see a different doctor there.

My urologist put me on Lupron when my PSA started rising after salvage radiation. At that point, I was assigned a Genito Urinary Oncologist to handle my case from that on.

That’s the right way to do this, not waiting till you hit .8. Your PSA is going to continue to rise because your cancer has reoccurred..

Have you had genetic testing? Your cancer may be coming back because of a genetic problem. Your doctor at MSK should allow you to get a genetic test to see if there’s a problem. I have BRCA2 that’s why mine keeps coming back

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Profile picture for smoore4 @smoore4

@smoore4
Thanks very much but since I am new at this I realized I omitted an important fact. Prior to initiating RT they found a very small lesion in prostate bed that tested positive for PC. So I did have more than a chemical recurrence. Sorry for the omission.

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Profile picture for cemezzina47 @cemezzina47

@smoore4
Thanks very much but since I am new at this I realized I omitted an important fact. Prior to initiating RT they found a very small lesion in prostate bed that tested positive for PC. So I did have more than a chemical recurrence. Sorry for the omission.

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@cemezzina47

Sorry, I meant, "No, you are not jumping the gun." I agree with everything that @jeffmarc said. Steve

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Profile picture for jeff Marchi @jeffmarc

3 1/2 years after my RP my PSA started rising and at .2 I had salvage radiation. 2 1/2 years later, my PSA started rising, and I was put on Lupron. I was a Gleason seven also.

There’s no reason she should wait to .8, Sounds like you need to find another doctor. MSK There’s a good place to get treated. Maybe you need to see a different doctor there.

My urologist put me on Lupron when my PSA started rising after salvage radiation. At that point, I was assigned a Genito Urinary Oncologist to handle my case from that on.

That’s the right way to do this, not waiting till you hit .8. Your PSA is going to continue to rise because your cancer has reoccurred..

Have you had genetic testing? Your cancer may be coming back because of a genetic problem. Your doctor at MSK should allow you to get a genetic test to see if there’s a problem. I have BRCA2 that’s why mine keeps coming back

Jump to this post

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Many thanks. I was just referred to this Doctor from my radiation oncologist. This doctor is a Genito Urinary Oncologist and I was not particularly pleased with his advice on my first visit. FYI , the MRI and PSMA were both negative for malignincy anywhere in my body but I know that means nothing at this juncture. I will be changing course and move to a more aggressive treatment and doctor.
I don’t like waiting around for something bad to happen.
How did you fare with Lupron?

Many thanks for you note. Very helpful.

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Profile picture for smoore4 @smoore4

@cemezzina47

Sorry, I meant, "No, you are not jumping the gun." I agree with everything that @jeffmarc said. Steve

Jump to this post

@smoore4 thank you Steve. Also very helpful.

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Profile picture for cemezzina47 @cemezzina47

Many thanks. I was just referred to this Doctor from my radiation oncologist. This doctor is a Genito Urinary Oncologist and I was not particularly pleased with his advice on my first visit. FYI , the MRI and PSMA were both negative for malignincy anywhere in my body but I know that means nothing at this juncture. I will be changing course and move to a more aggressive treatment and doctor.
I don’t like waiting around for something bad to happen.
How did you fare with Lupron?

Many thanks for you note. Very helpful.

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@cemezzina47
Did they use SBRT radiation to zap that tumor they found? I suspect they did. The thing is, your cancer has escaped the prostate and is almost definitely in your bloodstream. That doesn’t mean it will come back right away, but it can come back in bone or other organs. Doctors almost always prescribe ADT to prevent that from happening. There are other doctors in New York and it might be time to get a second opinion from one of them. Good options are Mount Sinai Health System and the Langone medical center

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Profile picture for cemezzina47 @cemezzina47

Many thanks. I was just referred to this Doctor from my radiation oncologist. This doctor is a Genito Urinary Oncologist and I was not particularly pleased with his advice on my first visit. FYI , the MRI and PSMA were both negative for malignincy anywhere in my body but I know that means nothing at this juncture. I will be changing course and move to a more aggressive treatment and doctor.
I don’t like waiting around for something bad to happen.
How did you fare with Lupron?

Many thanks for you note. Very helpful.

Jump to this post

@cemezzina47

I was on Lupron for seven years. After that I went on Orgovyx just another ADT. Most of us can get adjusted to ADT, Some gets severe Fatigue But that is not the norm. Exercise can offset the fatigue brought on by low testosterone caused by Lupron and similar drugs.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a bone doctor that spoke to a webinar, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times.

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Many thanks for that update. Very helpful!

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