PSA after 20 Proton treatments

Posted by brentbackus @brentbackus, Jul 27, 2023

My PSA has now dropped to 1.99 after my 20 proton treatments which ended in May 2023. At the highest PSA was 10. I was diagnosed with PC back in March of 2022 with a Gleason score of 3 +4. Was it only the proton treatments or the use of my repurposed drugs and the proton treatments that dropped my PSA?

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@jc76

Could I asked what is SBRT proton beam? I had pencil beam proton therapy at UFPTI as Jacksonville Mayo did not have proton. Mayo did MRI and biopsies. There was a scatter beam that could have been done but I have a pacemaker/ICD and physic department wanted to limit the radiation. I think the SBRT means scatter beam radiation treatment but thought I would asked. What is difference if you know.

I also did not do hormone even though first diagnosed with intermediate 3+4=7. But was changed to low risk from Decipher test and no hormone treatment recommended.

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Hi.
SBRT (Stereotactic Body Radiation Therapy) is a directed beam of protons similar to your therapy, I expect. I had a PSApet scan that detected no metastasis. At Mayo, SBRT is done with a directed beam and the depth radiation is controlled by an overlaid 3D-MRI taken before the therapy begins and "followed" by the radiation beam. The biggest difference in my therapy is that it was done in five sessions over two weeks rather than forty sessions. Outcomes, at least in my research before the event, are virtually the same.

With your Gleason scores it seems the lesions were confined to the prostate and at least with my therapy the entire prostate gland, bed and in my case a couple of spots just outside the prostate with mild intrusion were targeted. Radiation was confined to the prostate. The two therapies sound very similar to me.

At Mayo, six months of ADT are also part of the standard of care. But, I elected to pass on it. I have a history of heart disease and am 74 years old. After months of research, and except for information from an unpublished, ongoing study at Mayo Phoenix, I could find no definitive studies that compared proton beam with and without ADT. After 10 years, Phoenix has found the difference in outcomes with proton beam + ADT and with proton beam alone to be insignificant. I hope that helps ...

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Thanks for the information and yes it did help. Did you have yours at Phoenix Mayo? Can I asked what your after care and follow ups are?

Mayo Jacksonville does not have proton. They are building a cancer institute which will have proton therapy but it is years away. My primary care doctor said for me to consider proton treatments and consider UFPTI after I did research and consultations.

After consultations and research I went to UFPTI which has been doing proton radiation since 2006. According to their web site the have done over 10,000 treatments and patients from almost all states and 34 countries. They were one of the few proton institutes back in 2006. They have upgraded their equipment and quite a star wars experience. The Space/Oar and markers were the only discomfort I had for the entire experience.

Over the 7 weeks of treatment one of the things I saw was all the children coming there. It was sad to see. But I can see why as research showed proton treatments lessons the amount of radiation damage using pencil beam. The children have many decades to live and a lot of children are referred there to reduce the secondary cancers and more precise treatment of their cancer. UFPTI has a great children area, treatment rooms, etc. I still have images of walking past all those pre and post treatment rooms for the children.

I am 76 have heart failure with a ICD/pacemaker. So surgery was not an option and I would have not chose it anyway. Hormone treatment ruled out due to heart failure. But then the results of DECIPHER test came back contradicting the biopsy (intermediate) to low risk and then hormone treatments not be recommended with low risk.

UFPTI physics department recommended pencil beam treatments. They offer proton scatter but their physic department wanted pencil beam to stay as far away from ICD/Pacemaker as possible. The DECIPHER is expensive test (over 5K) but my insurance covered it. I don't see much mention of it on Mayo Clinic Connect.

I wish I lived around Phoenix or Rochester. You only had to go 5 times over two weeks. My therapy was 30 treatments that went over 7 weeks due to holidays. You really get to know your tech team. UFPTI has 5 gantry treatment rooms identified by color and number. You are assigned a permanent team, gantry.

I have nothing negative to say about UFPTI. Overall very good care and the techs were outstanding. However I am a long time Mayo patient (almost 20 years) so all my other care is at Mayo Clinic and would have been good if could have had my proton treatment at Mayo Clinic (is where my MRI, biopsy, and DECIPHER test done).

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@jc76

I was told at my first consultation that the hormone treatment basically stops the growth as the cancer cells feed off testosterone. I was told about the side affects and they are not good. I did a Decipher test and it came back a lower risk than my biopsies (intermediate) to low risk of metastasizing.

I did 30 proton treatments for prostrate and margins. I did not have an spread to bones (bone scan) nor surrounding organs tissues (PET scan).

From what I read the hormone treatments affect the testosterone and why it is such a shock to a man's system. You basically stop the production. What I was told was the radiation does not kill the cancer cells is damages it. Thus it cannot reproduce and eventually dies. This differs from the other prostrate cells and organs as they are damaged too but are capable of repairing themselves and growing back.

I follow up with a lot of research and found this information recurrent philosophy of radiation treatment. I am glad I did not have hormone treatment or the need to have it. A low risk diagnosis, and confined to prostrate does not have (at least in my case) a recommendation for hormone treatment.

I wish you good luck. From my information the hormone treatments help stop the growth of the cancer as you stop feeding it (needs testosterone to grow) and the radiation damages the cells not allowing it to repair and replace the cancer cells.

Do you have a good urologist and oncologist. These are questions for them. I would not stop at one consultation and get second and third opinions. Remember every case and person is different and that is important to understand and what happens with one person may not happen to you.

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My oncologist is retired and was a no show at half of my appointments. I live in a semi rural area and my local treatment options are limited. I just changed Urologists to a doctor in NH about 60 miles away.
The Luminal sucked the life out of me and it probably took me two years to get it back. Testosterone gets a bad rap, while it is is part of the chemical process it and I do not agree with the phrase that it is jet fuel for PC. I find it interesting that high doses of T kill androgen resistant PC cells.
I am in good shape today and wish I had known 1/2 as much about PC before I was treated.

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@stebro

Hi.
SBRT (Stereotactic Body Radiation Therapy) is a directed beam of protons similar to your therapy, I expect. I had a PSApet scan that detected no metastasis. At Mayo, SBRT is done with a directed beam and the depth radiation is controlled by an overlaid 3D-MRI taken before the therapy begins and "followed" by the radiation beam. The biggest difference in my therapy is that it was done in five sessions over two weeks rather than forty sessions. Outcomes, at least in my research before the event, are virtually the same.

With your Gleason scores it seems the lesions were confined to the prostate and at least with my therapy the entire prostate gland, bed and in my case a couple of spots just outside the prostate with mild intrusion were targeted. Radiation was confined to the prostate. The two therapies sound very similar to me.

At Mayo, six months of ADT are also part of the standard of care. But, I elected to pass on it. I have a history of heart disease and am 74 years old. After months of research, and except for information from an unpublished, ongoing study at Mayo Phoenix, I could find no definitive studies that compared proton beam with and without ADT. After 10 years, Phoenix has found the difference in outcomes with proton beam + ADT and with proton beam alone to be insignificant. I hope that helps ...

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Thank you for your reply. I used to live in Waddell, AZ. Sure miss it , but not the heat. Yup...so far no ADT for me.

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@jc76

Thanks for the information and yes it did help. Did you have yours at Phoenix Mayo? Can I asked what your after care and follow ups are?

Mayo Jacksonville does not have proton. They are building a cancer institute which will have proton therapy but it is years away. My primary care doctor said for me to consider proton treatments and consider UFPTI after I did research and consultations.

After consultations and research I went to UFPTI which has been doing proton radiation since 2006. According to their web site the have done over 10,000 treatments and patients from almost all states and 34 countries. They were one of the few proton institutes back in 2006. They have upgraded their equipment and quite a star wars experience. The Space/Oar and markers were the only discomfort I had for the entire experience.

Over the 7 weeks of treatment one of the things I saw was all the children coming there. It was sad to see. But I can see why as research showed proton treatments lessons the amount of radiation damage using pencil beam. The children have many decades to live and a lot of children are referred there to reduce the secondary cancers and more precise treatment of their cancer. UFPTI has a great children area, treatment rooms, etc. I still have images of walking past all those pre and post treatment rooms for the children.

I am 76 have heart failure with a ICD/pacemaker. So surgery was not an option and I would have not chose it anyway. Hormone treatment ruled out due to heart failure. But then the results of DECIPHER test came back contradicting the biopsy (intermediate) to low risk and then hormone treatments not be recommended with low risk.

UFPTI physics department recommended pencil beam treatments. They offer proton scatter but their physic department wanted pencil beam to stay as far away from ICD/Pacemaker as possible. The DECIPHER is expensive test (over 5K) but my insurance covered it. I don't see much mention of it on Mayo Clinic Connect.

I wish I lived around Phoenix or Rochester. You only had to go 5 times over two weeks. My therapy was 30 treatments that went over 7 weeks due to holidays. You really get to know your tech team. UFPTI has 5 gantry treatment rooms identified by color and number. You are assigned a permanent team, gantry.

I have nothing negative to say about UFPTI. Overall very good care and the techs were outstanding. However I am a long time Mayo patient (almost 20 years) so all my other care is at Mayo Clinic and would have been good if could have had my proton treatment at Mayo Clinic (is where my MRI, biopsy, and DECIPHER test done).

Jump to this post

Mt proton treatments were at the Stephenson Cancer Center at the Univ. of OK May of this year.
Then Space OAR placement failed last year. Then issues. Wait time and then proton treatment without the gel. 20 treatments. Decipher test not done . Did Medicare cover it? Urologists seemed I did not need it. Hormone treatment not an option at this time. I go back in October to test PSA. I will continue my repurposed drugs and go back to my antioxidants starting tomorrow.
Stay well my friend...God bless...

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@jc76

Thanks for the information and yes it did help. Did you have yours at Phoenix Mayo? Can I asked what your after care and follow ups are?

Mayo Jacksonville does not have proton. They are building a cancer institute which will have proton therapy but it is years away. My primary care doctor said for me to consider proton treatments and consider UFPTI after I did research and consultations.

After consultations and research I went to UFPTI which has been doing proton radiation since 2006. According to their web site the have done over 10,000 treatments and patients from almost all states and 34 countries. They were one of the few proton institutes back in 2006. They have upgraded their equipment and quite a star wars experience. The Space/Oar and markers were the only discomfort I had for the entire experience.

Over the 7 weeks of treatment one of the things I saw was all the children coming there. It was sad to see. But I can see why as research showed proton treatments lessons the amount of radiation damage using pencil beam. The children have many decades to live and a lot of children are referred there to reduce the secondary cancers and more precise treatment of their cancer. UFPTI has a great children area, treatment rooms, etc. I still have images of walking past all those pre and post treatment rooms for the children.

I am 76 have heart failure with a ICD/pacemaker. So surgery was not an option and I would have not chose it anyway. Hormone treatment ruled out due to heart failure. But then the results of DECIPHER test came back contradicting the biopsy (intermediate) to low risk and then hormone treatments not be recommended with low risk.

UFPTI physics department recommended pencil beam treatments. They offer proton scatter but their physic department wanted pencil beam to stay as far away from ICD/Pacemaker as possible. The DECIPHER is expensive test (over 5K) but my insurance covered it. I don't see much mention of it on Mayo Clinic Connect.

I wish I lived around Phoenix or Rochester. You only had to go 5 times over two weeks. My therapy was 30 treatments that went over 7 weeks due to holidays. You really get to know your tech team. UFPTI has 5 gantry treatment rooms identified by color and number. You are assigned a permanent team, gantry.

I have nothing negative to say about UFPTI. Overall very good care and the techs were outstanding. However I am a long time Mayo patient (almost 20 years) so all my other care is at Mayo Clinic and would have been good if could have had my proton treatment at Mayo Clinic (is where my MRI, biopsy, and DECIPHER test done).

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It sounds to me like you have had good treatment. My treatment was at Mayo Rochester. DECIPHER is a relatively new treatment and does not appear to be routinely used by Mayo. I haven't researched the test since my understanding is that it is used primarily to diagnose less advanced cases which is very important, particularly with younger patients. Thus the high proportion of children you have observed.

I have read that it is important in avoiding over-treatment in marginal cases where the decision is between treatment and observation. The combination of 3D MRI, high-quality biopsy interpretation and, in my case, PSApet scanning is a very good indicator of existential metastasis rather than the probability of developing metastatic PC down the road.

Your case, where you must avoid full body radiation would make you an exception and perhaps a better candidate for DECIPHER. Intermediate stage PC diagnosis is particularly difficult to diagnose and the trend is toward breaking it down into more refined sub-categories. But there is no general agreement on how to do that. I'm sure genomic testing of many kinds will be of greater use in the future as more scientific data becomes available.

I took two weeks off and travelled to Rochester over the Christmas holidays in order to shorten the treatment schedule to two weeks. Pre-treatment my PSA was 13.85. I had PSA tests at three weeks post-treatment (6.7), and another six months after that (2.7). I've had no post-treatment care other than observation at six-month intervals. I had two tumours, one on each side of the prostate. Now we are watching the downward trend in PSA, alert for any changes in trend. It will reach its nadir at some point where, one hopes, it will remain until it no longer matters.

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@melcanada

Get on Xtandi no issues And Xgeva if in bones I get Zolodex 3 mos injections
At 78 I feel great Stage 4 under control thanks to Jesus and the meds he directs in my path

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Fortunately right now I have stable PSA of.14. I had ADT therapy before treatment and it sucked the life out of me. For me there has to be some balance of quality of life and years lived.

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@narus

Fortunately right now I have stable PSA of.14. I had ADT therapy before treatment and it sucked the life out of me. For me there has to be some balance of quality of life and years lived.

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What ADT ?
I was on and still am on Zolodex with no issues In Jan 23 added Xtandi no issues PSA 1.7 Xgeva for bones as L1 radiated but returned in L2 in Jan

Had prostate radiated in 2017 40 days Zolodex for a year No issues

78 feel great

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@brentbackus

Mt proton treatments were at the Stephenson Cancer Center at the Univ. of OK May of this year.
Then Space OAR placement failed last year. Then issues. Wait time and then proton treatment without the gel. 20 treatments. Decipher test not done . Did Medicare cover it? Urologists seemed I did not need it. Hormone treatment not an option at this time. I go back in October to test PSA. I will continue my repurposed drugs and go back to my antioxidants starting tomorrow.
Stay well my friend...God bless...

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I was treated at Rutland Regional medical center which is close to me. I recently switched Urologists and am now seeing someone at Dartmouth Hitchcock. My main complaint with where I was treated is they had little concern if my bladder was full and now I have urinary complications. I still had Blue Cross when I was treated and they paid for just about everything.
This Decipher test sounds interesting.

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@melcanada

What ADT ?
I was on and still am on Zolodex with no issues In Jan 23 added Xtandi no issues PSA 1.7 Xgeva for bones as L1 radiated but returned in L2 in Jan

Had prostate radiated in 2017 40 days Zolodex for a year No issues

78 feel great

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Right now I am pretty stable with a .14 PSA but am still young 66. I had a bone scan but no PET scan. I am probably ok for a couple of years and only doing active surveillance by PSA test

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