How will I know EBRT has worked?

Posted by samidh @samidh, Mar 1, 2023

I'm writing to share with you my journey with Prostate Cancer. I am 73 years old, from Calcutta, India and getting treated at Tata Medical Centre. Treatment protocols could be different in India compared to the US.

I was detected with Prostate Cancer (Acinar Adenocarcinoma) Stage 3B/4A (?), with a PIRADS MRI score of 5 and Biopsy Gleason Grade 4+4.

Around seven years ago, I came down with urinary issues (including slight difficulty peeing) and I reported to my doctor who prescribed me antibiotics and Tamsulosin 0.4 mg which he said he was prescribing for prostatitis. In a month's time I was fit and these medications were not needed any more. However, what needs to be noted here is that he did not refer me to a Urologist. My world was rosy again and I continued living life to the brim, as I've always done. As the years went on and I stepped into my seventies, some common old-age issues started showing up, like more frequent urge to urinate, slight dribbling after peeing (including feeling of "I could have peed a little more"). But then, what the hell, I lulled myself with the thought that these were all part of old age and so carried on living life as before. It’s said Prostate cancer is usually a very slow-growing one and with almost no symptoms at all. Even in my case I would never have learnt that I have got Cancer, but for the fact that in mid-July last year I came down with a viral infection with fever of 102+. I went to my doctor (not the one I had been to seven years ago) and when my RT-PCR test for COVID returned negative, he put me on antibiotics for five days. The high fever went down but a low-grade fever (99.5-99.8) continued. He gave me another course of antibiotics and even then when the low-grade fever did not come down, he started investigations. Amongst several investigations, one was a simple USG whole-abdomen which revealed that my prostate was enlarged. I got a PSA test which was 2.6 (very misleading, as this result is normally considered very good at our age). But he was not happy, he insisted that I see a Urologist. I went to a Urologist who did a DRE (Digital Rectal Examination) and told me to immediately get two tests done. Firstly, a Multi Parametric MRI of the prostate (which gave a PIRADS score of 5) followed by a TRUS-guided biopsy (which gave a Gleason score of 8). Thereafter, I underwent a GA-68 PSMA PET Scan that revealed that the cancer in the prostate had metastasized to nearby lymph nodes, bladder, seminal vesicles, etc. and the doctors concluded that my case was that of an aggressive locally-advanced prostate cancer.

Surgery was ruled out and it was decided that I would undergo Radiation therapy with ADT.

I was put on Bicalutamide for 3 weeks before starting off on 3-monthly Goserelin 10.8 implants. At the same time I was started off on Abiraterone 1000 mg daily, and 14 weeks after that I was put through Radiotherapy (Tomotherapy) 60 units (3 units x 20 fractions, 5 days a week). This is where I wish to highlight the side effects of the EBRT. The first week went without any issues, but by the time I was through to the end of the 2nd week, I started having urinary issues, like urgency, incontinence, burning/paining and incomplete voiding. Two days after I finished my Tomo sessions, the side effects aggravated tremendously and as of today, 10 days after I completed Tomo sessions, I have started feeling some relief. There were some GI issues like a little mucus in stool and increase frequency, but nothing which really bothered me. What was painful was the urination part.

I will continue to remain on Goserelin and Abiraterone for 2 years.

When I asked my Radio Oncologist how do I know whether the RT had worked or not, and whether I would undergo a PET scan in the near future, he said that there was no need for any further PET Scan and that it would suffice to only monitor my PSA level 3-monthly.

My apprehension is that even before treatment my PSA was only 2.6 (now its 0.15 after 4 months of Goserelin and Abiraterone), and whether monitoring only the PSA would suffice to know the progression of cancer, and whether it has or not metastasised further. Will be grateful for inputs.

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

Thanks for sharing all of these details! Seems like we're all getting very similar but slightly different treatments in terms of meds and radiation. I wonder how our doctors decide which combination of treatments work best? Different groups of doctors within reach hospital sharing info? Or is there a bigger common resource they all refer to? We're all looking for the ultimate treatment that actually cures Stage 4. Hopefully it's not too far off. Best wishes to all!!!! Stay hopeful and positive.

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PSMA PET scan results when PSA level under 0.2 ng/ml are not always diagnostic. 20 - 30% range is my understanding. I have seen info suggesting followup w/ scans and treatment between 0.2 and 0.4/0.5 PSA.
Thinking that may be involved here? Perhaps your Dr can provide a better explanation of the monitoring process going forward.
Best wishes.

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@ringmastr1

Thanks for sharing all of these details! Seems like we're all getting very similar but slightly different treatments in terms of meds and radiation. I wonder how our doctors decide which combination of treatments work best? Different groups of doctors within reach hospital sharing info? Or is there a bigger common resource they all refer to? We're all looking for the ultimate treatment that actually cures Stage 4. Hopefully it's not too far off. Best wishes to all!!!! Stay hopeful and positive.

Jump to this post

Many dr’s follow the guidelines of https://www.nccn.org/ an organization formed to help dr’s and patients. Lots of targeted information.

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65 years, Gleason 6 Low Risk Intermediate, PSA average 10. Treated with Proton Beam SBRT Mayo Clinic Rochester. Last of 5 treatments 19 January 2023. Regarding the post Radiation urination issues, I experienced similar issues. Dr. suggested Ibuprofen as the Prostate may get inflamed from treatment, pretreatment, biopsy... has helped reduce discomfort of urination. Was getting up as often as 5 times a night for a couple of weeks after last treatment, now 6 weeks out I get up at night once or twice, similar to pretreatment rates. Have read that these issues most often spontaneously resolve after 3 months on average.

Good luck.

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@bens1

Many dr’s follow the guidelines of https://www.nccn.org/ an organization formed to help dr’s and patients. Lots of targeted information.

Jump to this post

I did log in to non.org, but I found the site is about religion. Is that correct?

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@jb2buckwater

65 years, Gleason 6 Low Risk Intermediate, PSA average 10. Treated with Proton Beam SBRT Mayo Clinic Rochester. Last of 5 treatments 19 January 2023. Regarding the post Radiation urination issues, I experienced similar issues. Dr. suggested Ibuprofen as the Prostate may get inflamed from treatment, pretreatment, biopsy... has helped reduce discomfort of urination. Was getting up as often as 5 times a night for a couple of weeks after last treatment, now 6 weeks out I get up at night once or twice, similar to pretreatment rates. Have read that these issues most often spontaneously resolve after 3 months on average.

Good luck.

Jump to this post

Thanks. Yes, it’s been 2 weeks now since I finished my Radiation and things have started easing off with my urination issues. Looks like it’ll take a couple of weeks more at least to bring it back to pre-radiation state.

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@samidh

I did log in to non.org, but I found the site is about religion. Is that correct?

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Sorry about that. i left out a c. The web site is nccn.org.

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Hi I’m Jack and just completed my radiation therapy last week. I’m 70. Had a Pirad score of 5 and a Gleason 4 +5. My cancer has spread to local lymph nodes and and sacrum spine only and is considered aggressive yet oligometastatic with a PSA of only 6.8 which jumped from 4.6 last year with an infection and bleeding which alarmed the doctors. I am on Zytiga as well at 1000mg daily as well as Lupron injections every three months. I was told the exact same thing as you. They will monitor the PSA regularly since it is more accurate than even the PSA PET CT scan. As long as it stays low the y won’t do any scans. If they see a consistent upward trend they will do the scan and do more advanced treatments. Hoping this answers your questions. By the way my frequent and painful urination was helped with both Flomax and Pyridium which totally took away the pain and burning. As for the frequency, it is already improving post radiation. Wishing everyone the best!!

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Thanks Jack for your inputs. Really helpful. I have been on Silodosin (same class as Flomax) since July last year when I was found to have an enlarged prostate. Unfortunately, I was not prescribed Pyridium (or Ibupofen) and I has a pretty tough time for a couple of weeks, things have just started to ease off a bit now. All the best and keep smiling!

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@michaelcharles

PSMA PET scan results when PSA level under 0.2 ng/ml are not always diagnostic. 20 - 30% range is my understanding. I have seen info suggesting followup w/ scans and treatment between 0.2 and 0.4/0.5 PSA.
Thinking that may be involved here? Perhaps your Dr can provide a better explanation of the monitoring process going forward.
Best wishes.

Jump to this post

I was told that Petscans cannot show anything until PSA is

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