Starting radiation & hormone tx for recurrence: Your experience?

Posted by natem @natem, Feb 13, 2022

I have been advised to start 7.5 weeks of radiation and 6 months hormone treatment for recurrence after 8 years post prostatectomy. Had a Gleason 9 when removed, but did not spread to lymph nodes, nor semi vesicles. May annual PSA came back at .3 after having been <.1 fifteen months prior. My fear is what if I have to stay on because it spread somewhere else and the side effects of hormone. I'm 61 yo. Any thoughts, suggestions, experiences? TIA!

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@natem

Thank you for sharing that. Were they able to retreat with radiation? Best wishes to you!

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Two years after the prostatectomy in 2001, I underwent 35 radiation treatments to the prostate bed, I assume. My latest radiation treatments were to 4 lymph nodes in my pelvis, found by PSMA PET scan when my PSA had risen to 1.0. I was told that the new radiation site was mostly not covered by the first regime of radiation so I could receive more radiation. I would think that each man’s case would be unique to his case history. I feel lucky.

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@natem

Thank you for sharing that. May I ask, how long from surgery to radiation, then from radiation to Lupron?

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Two years after surgery was my first radiation. Twelve years after that I went on Lupron. Five years after starting Lupron I had the latest scan and then more radiation.

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Thanks much for sharing! That's great they found it with it being that low of a psa in the new Scan! I was lucky they recently installed one near where I live. Best wishes!

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@dpcarriere

natem, what is vital in your current situation is to find out EXACTLY where the recurring cancer lies. Where is it and to what level has it become. Find those answers and proceed from there. Our newer, state of the art proceedures should put you back on track. Let us know what your doctors tell you. I'm with you.

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They performed the newer PSMA Pet scan which helps find smaller tumors. At a .3 psa Doc advised only 40% chance of seeing/finding it. The scan came back inconclusive. There was a spot on my lymph nodes I wasn't happy about, but Radiologist Oncologist said it was a Type 3, advising that there's something standing out slightly, or zoom in a faint pinkish, supposedly inconclusive. A type 4 supposedly means they're likely cancer and type 5, is cancer. So I don't know... sounds like Hormone therapy for time left if micromatastisized : ( . I think I got it rather young at 53 and Prostatectomy , now recurrence @ .3 psa, 61 y.o. present

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IAs the attached chart shows, I had BCR though 18 months after surgery, not nine years. If you decide to do the recommended treatment, it is fairly standard treatment now, IMRT to the prostate bed and six months of ADT. Some will include the pelvic lymph nodes because of micro-metastatic PCa.

If you do the six months ADT, ask your medical team about - https://www.pcf.org/news/breaking-news-fda-approves-first-oral-hormone-therapy-for-advanced-prostate-cancer/ It's CV and metabolic SE profile are lower than Lupron, it does not have the flare Lupron does and recovery of testosterone is faster. the zeroing out of your testosterone will have SEs, you can research all the possible ones though like statistics and the bell curve, average, mean, mode...your experience may be different. For the 18 months I was on Lupron, hot flashes, genitalia shrinkage, muscle and joint stiffness, weight gain (even with exercising and watching my diet), and mild fatigue.

Two things to keep in mind, with recurrence, generally the earlier and the lower the PSA, the better the chance of either an elusive "cure" or long progression free survival. Combination therapy is generally better than monotherapy.

As you can see from my chart, I had radiation twice, the prostate bed and the PLNs. I had no SE then nor now, testimony to the technology and skill of my radiation team. If you elect to do the treatment, your radiologist should show you the treatment plan using the planning software (which is 3D). You'll be amazed. They should include boosts to any sites identified in the scan and wider margins around them.

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@kujhawk1978

IAs the attached chart shows, I had BCR though 18 months after surgery, not nine years. If you decide to do the recommended treatment, it is fairly standard treatment now, IMRT to the prostate bed and six months of ADT. Some will include the pelvic lymph nodes because of micro-metastatic PCa.

If you do the six months ADT, ask your medical team about - https://www.pcf.org/news/breaking-news-fda-approves-first-oral-hormone-therapy-for-advanced-prostate-cancer/ It's CV and metabolic SE profile are lower than Lupron, it does not have the flare Lupron does and recovery of testosterone is faster. the zeroing out of your testosterone will have SEs, you can research all the possible ones though like statistics and the bell curve, average, mean, mode...your experience may be different. For the 18 months I was on Lupron, hot flashes, genitalia shrinkage, muscle and joint stiffness, weight gain (even with exercising and watching my diet), and mild fatigue.

Two things to keep in mind, with recurrence, generally the earlier and the lower the PSA, the better the chance of either an elusive "cure" or long progression free survival. Combination therapy is generally better than monotherapy.

As you can see from my chart, I had radiation twice, the prostate bed and the PLNs. I had no SE then nor now, testimony to the technology and skill of my radiation team. If you elect to do the treatment, your radiologist should show you the treatment plan using the planning software (which is 3D). You'll be amazed. They should include boosts to any sites identified in the scan and wider margins around them.

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Thanks very much! Fortunately, that's what my Radiation Oncologist prescribed. I've had a pacemaker in since I was 45. So this having a lower cardiac profile helped it get approved. Sounded odd though, like he might have to fight my insurance company. Maybe they're not all covering it, because until I mentioned heart, I think he was going to give the injection. I'm surprised, he's at JHH , would've thought that would be the new standard of care.

A shortcoming of mine is I'm not always wanting to see the details, but he did show me the PSMA PET Scan, showing me the type 3 image at the and of the lymph nodes, further where the prostrate was, such the he bent, or drew the scan for the Versa radiation machine to include it. But, I haven't asked all the details about radiation dosage. it seems i receive two treatments that once started, only take about a minute each. The machine scans me first every time. I see you've been at NIH, I'm not more than about 45 minutes away. Thank you again for sharing that. Is there a specific need the fulfilled that may be unique and, or beneficial? It appears you have had much activity with testing, imaging and treatment. I'm 61 y.o. and self employed real estate sales, hoping I may remain active while treating, surviving,. I hadn't had any symptoms, but the .2 and .3 psa's I just started the Orgovyx about 2 or 3 weeks ago. It's fast working and I'm anticipating genital shrinking as I think it does the same thing as Lupron. So, I don't know if this will cure it even though that's the stated goal. I was hoping to put off ADT for as long as possible after completion of 6 month regimen. I'm sure that's never been said before...

Another concern is if it has micromastasticized and I need hormone therapies, I fear for when they become ineffective. I am going to ask him about boosting the site and wider margins around it. Thanks very much. My best wishes to you!

Kind regards,
Nate

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@natem

Thanks very much! Fortunately, that's what my Radiation Oncologist prescribed. I've had a pacemaker in since I was 45. So this having a lower cardiac profile helped it get approved. Sounded odd though, like he might have to fight my insurance company. Maybe they're not all covering it, because until I mentioned heart, I think he was going to give the injection. I'm surprised, he's at JHH , would've thought that would be the new standard of care.

A shortcoming of mine is I'm not always wanting to see the details, but he did show me the PSMA PET Scan, showing me the type 3 image at the and of the lymph nodes, further where the prostrate was, such the he bent, or drew the scan for the Versa radiation machine to include it. But, I haven't asked all the details about radiation dosage. it seems i receive two treatments that once started, only take about a minute each. The machine scans me first every time. I see you've been at NIH, I'm not more than about 45 minutes away. Thank you again for sharing that. Is there a specific need the fulfilled that may be unique and, or beneficial? It appears you have had much activity with testing, imaging and treatment. I'm 61 y.o. and self employed real estate sales, hoping I may remain active while treating, surviving,. I hadn't had any symptoms, but the .2 and .3 psa's I just started the Orgovyx about 2 or 3 weeks ago. It's fast working and I'm anticipating genital shrinking as I think it does the same thing as Lupron. So, I don't know if this will cure it even though that's the stated goal. I was hoping to put off ADT for as long as possible after completion of 6 month regimen. I'm sure that's never been said before...

Another concern is if it has micromastasticized and I need hormone therapies, I fear for when they become ineffective. I am going to ask him about boosting the site and wider margins around it. Thanks very much. My best wishes to you!

Kind regards,
Nate

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Nate, the NIH was a clinical trial for imaging which I volunteered for to see if it could locate the location(s) of my recurrence, it did not. So, off I went to Mayo for the C11 Choline.

Given your clinical history, the combined regimen may cure you or give you a long progression free survival. You can see from my chart that we're 3-1/2 years out from my last Lupron shot clearing my system and no treatment since.

Do some research on intermittent ADT (IADT). You certainly don't want to over treat, then again, you don't want to under treat.

Many in the PCa community are advocating bringing treatments forward in the disease and combining them to overwhelm it in a state where it is susceptible, a few sites vice many.

You can do some research, I sucked at biology and chemistry but generally I understand that ADT sensitizes the PCa cells to the radiation, making it more effective, symbiosis I recall from my high school science days...

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I had rp in 2018. Bcr in 2021. Did 3 months of orogovyx and 36 radiation treatments to Prostate bed and pln. Last psa undetectable. Orogovyx far less se than Lupron. So far so good.

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@itterac

I had rp in 2018. Bcr in 2021. Did 3 months of orogovyx and 36 radiation treatments to Prostate bed and pln. Last psa undetectable. Orogovyx far less se than Lupron. So far so good.

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Excellent news! Thanks for sharing that!

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@kujhawk1978

IAs the attached chart shows, I had BCR though 18 months after surgery, not nine years. If you decide to do the recommended treatment, it is fairly standard treatment now, IMRT to the prostate bed and six months of ADT. Some will include the pelvic lymph nodes because of micro-metastatic PCa.

If you do the six months ADT, ask your medical team about - https://www.pcf.org/news/breaking-news-fda-approves-first-oral-hormone-therapy-for-advanced-prostate-cancer/ It's CV and metabolic SE profile are lower than Lupron, it does not have the flare Lupron does and recovery of testosterone is faster. the zeroing out of your testosterone will have SEs, you can research all the possible ones though like statistics and the bell curve, average, mean, mode...your experience may be different. For the 18 months I was on Lupron, hot flashes, genitalia shrinkage, muscle and joint stiffness, weight gain (even with exercising and watching my diet), and mild fatigue.

Two things to keep in mind, with recurrence, generally the earlier and the lower the PSA, the better the chance of either an elusive "cure" or long progression free survival. Combination therapy is generally better than monotherapy.

As you can see from my chart, I had radiation twice, the prostate bed and the PLNs. I had no SE then nor now, testimony to the technology and skill of my radiation team. If you elect to do the treatment, your radiologist should show you the treatment plan using the planning software (which is 3D). You'll be amazed. They should include boosts to any sites identified in the scan and wider margins around them.

Jump to this post

May I ask, how were you able, or what brought your psa down when it rose to .29 Jan 21, 2021 and .3 on May 1, 2021? Best wishes for your continued success. Kind regards, Nate

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