3C, PPC 8/12, highest GG5; T1c N0 M0 - 5 SBRT sessions to Prostate?

Posted by scary1 @scary1, 4 days ago

Hi everyone,
Thank you for all the valuable information.
My husband has been staged as 3c because of the aggressive, cribriform patterned cells found in 8 of the 12 biopsy samples (high risk, PPC 8/12, highest GG5, pre-treatment PSA 13 Stage: T1c N0 M0).
While the cancer is prevalent in the prostate, the PET scan shows no spread. Nothing lights up – not even the lymph nodes. The oncologists want to treat his cancer as if it has metastasized and treat him with Orgovyx and Nubeqa for two years. The Nubeqa was not approved by the insurance based on his lack of metastasis, but if anyone is familiar with the Stampede trial, this is the reason behind this approach - we are in appeal. Two to three months into the ADT, the radiation oncologist suggests 5 fraction SBRT. He thinks that any stray microscopic cancer cells that have migrated beyond the prostate will be eradicated by the two-year double ADT treatment. I thought these drugs cripple and paralyze prostate cancer cells but do not reliably kill them off. When I questioned the approach, he said we could opt for the 20 session radiation and hit the nodes and pelvis. My husband prefers the five sessions, but I worry about a recurrence; the oncologists at Duke Cancer Center say they are going for a cure rather than just treatment, and the chances of the cancer returning are about 25% with this treatment. They said surgery would put him at about 60% chance of a recurrence. Do you think 5 SBRT treatments is the smart approach?
Thanks for any insight! Sarah

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

With so much cribriform Radiation does make a lot of sense, I guess your question is, which radiation is better?

The PSMA PET scan can only see metastasis that are 2.5 mm or larger. One of the UCSF radiation oncologist said that even 5 mm is hard to see. This means the cancer could have spread anywhere in your body, but can’t be seen by a scan.

Where are you going for treatment?? Is it a center of excellence?. He has a very serious case of prostate cancer and need the top people working to treat you. You really should go to a center of excellence and get a second opinion, Even if you are at one, a second opinion would be useful in this case since it is a very serious case with all that cribriform.

I would also try to get a Genito urinary oncologist to work with you. They specialize in prostate cancer, unlike medical oncologist who treat everything. They can direct you to the best treatment.

Before having radiation, it might make sense to get a Prostox Test to see if radiation is a problem with your husband’s body. Some people have very serious problems due to radiation. That test can let you Know if there is a problem.

Have you had a decipher test? That can tell whether or not reoccurrence will occur soon sooner or later. If you have a very high decipher score, then ADT is almost essential. Along with radiation ADT can kill off most of the prostate cancer cells, though some can become hormone resistant and can not be killed. It’s also possible that even before the cancer was detected dormant cell can proliferate, Here is some information on that

Researchers have found that dormant cells leave the primary tumour early in a cancer’s progression, often before the disease has been diagnosed6. How and why these cells break away isn’t entirely clear, but after spending just minutes in circulation, they exit the bloodstream and concentrate in certain parts of the body, such as the bone marrow and lymph nodes. Even in these niches, dormant cells are extremely rare, amounting to just a handful among millions of healthy cells, he says. Their state of suspended animation shields them from conventional treatments, such as chemotherapy, that target rapidly dividing cells.

This is why Is Seldom possible to have a cure, more likely longer-term remission will happen.

REPLY

Jeff,
Thank you for all the information; it's very helpful. My husband is being treated at Duke Cancer Center in Durham, NC, and the radiation oncologist is very nice, but young! He finished his residency in 2024, and after our consult with him, I wondered if he made the decision to only radiate the prostate with 5 fraction SBRT, or did he discuss the treatment with a tumor board or fellow radiation docs. As you wrote, I must assume cancer cells have gone rogue and left the prostate, but the radiation treatment plan will not hit any areas other than prostate. Can patients get a second radiology opinion at the same cancer center; do I ask the radiation doctor to confer with more seasoned doctors, or do we go elsewhere for another opinion?
My husband intends to take Orgovyx and Nubeqa for two years; I just don't know if the 5 fraction SBRT only to the prostate is smart in my husband's case.
I plan to request the Decipher test - thanks for this suggestion.
The doctors have implied this can be "cured" rather than treated and subdued. This may not happen, but I'd like to give it the best shot. My husband will follow (without question) everything the doctors say, but I prefer doing my research.
With gratitude,
Sarah

REPLY

There is no redo on radiation since there is a lifetime radiation limit. SBRT is typically 5 sessions. There is also IMRT/IGRT either hypo-fractionated at 20 to 28 fractions or traditional at 35+ fractions. As you noted this can treat the area around the prostate. The more fractions the lower the dose per fraction and usually milder side effects. Also, no RP surgery after radiation so this is an important decision. If young (< 60) might want to start with surgery even though that has a high percentage of reoccurrence.

REPLY
Profile picture for scary1 @scary1

Jeff,
Thank you for all the information; it's very helpful. My husband is being treated at Duke Cancer Center in Durham, NC, and the radiation oncologist is very nice, but young! He finished his residency in 2024, and after our consult with him, I wondered if he made the decision to only radiate the prostate with 5 fraction SBRT, or did he discuss the treatment with a tumor board or fellow radiation docs. As you wrote, I must assume cancer cells have gone rogue and left the prostate, but the radiation treatment plan will not hit any areas other than prostate. Can patients get a second radiology opinion at the same cancer center; do I ask the radiation doctor to confer with more seasoned doctors, or do we go elsewhere for another opinion?
My husband intends to take Orgovyx and Nubeqa for two years; I just don't know if the 5 fraction SBRT only to the prostate is smart in my husband's case.
I plan to request the Decipher test - thanks for this suggestion.
The doctors have implied this can be "cured" rather than treated and subdued. This may not happen, but I'd like to give it the best shot. My husband will follow (without question) everything the doctors say, but I prefer doing my research.
With gratitude,
Sarah

Jump to this post

@scary1
I would definitely want to get a second opinion on this. IMRT radiation may make more sense based on the problems your husband has. Cribriform is Probably going to make it so that his cancer will come back if he has not treated To the prostate and the prostate bed and lymph nodes in that area.

That is a very young RO you are working with you really need to speak to someone else that has a lot more experience with what’s going on. If you can’t get that answer at Duke, you need to go somewhere else. Here is the name of a top notch Oncologist that is not far from you. It will be worth going the couple hundred miles to see this doctor and get an Opinion from an expert.

Bethesda Maryland
Sibley memorial hospital
Johns Hopkins, school of medicine
GU Oncologist
Dr. Channing Palmer

With all the cribriform Your husband has a Gleason nine you need more choices. They say T1c But the cribriform Makes it much more aggressive.

Were any of these things found in the biopsy intraductal, ductal,, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive. You need to take a close look at the biopsy and see if any of these are found.

Orgovyx and Nubeqa Are a good choice with the serious case he has. I’ve had prostate cancer for 16 years had surgery and radiation and three more reoccurrences after that. I’ve been on a few different drugs and then now on Orgovyx and Nubeqa And that has kept my PSA undetectable for the last 28 months. I do have a genetic problem, BRCA2, Which keeps my cancer coming back. If you can’t get Nubeqa (Darolutamide) Approved apalutamide Would be another good choice and would definitely be approved. It has more side effects, but works very well for most people.

Has your husband had a hereditary genetic test? Is there a breast cancer, Prostate cancer, or Pancreatic cancer in his family. Those can be the cause of genetic problems. You don’t mention his age and that is a definite factor in treatment. Genetic problems can lead to early reoccurrence.

REPLY

@scary1

Centers of excellence are usually set up for a computer telehealth so you might want to try and find a center of excellence that can set something up quickly for you. Many times, they will make arrangements to have the records and imaging accessible to them. One suggestion is Dr. Himanshu Nagar at Memorial Sloan Kettering.
https://www.mskcc.org/cancer-care/doctors/himanshu-nagar. They also have a SBRT radiation machine, among others, with a built in MRI, the Elekta Unity.

REPLY
Profile picture for scary1 @scary1

Jeff,
Thank you for all the information; it's very helpful. My husband is being treated at Duke Cancer Center in Durham, NC, and the radiation oncologist is very nice, but young! He finished his residency in 2024, and after our consult with him, I wondered if he made the decision to only radiate the prostate with 5 fraction SBRT, or did he discuss the treatment with a tumor board or fellow radiation docs. As you wrote, I must assume cancer cells have gone rogue and left the prostate, but the radiation treatment plan will not hit any areas other than prostate. Can patients get a second radiology opinion at the same cancer center; do I ask the radiation doctor to confer with more seasoned doctors, or do we go elsewhere for another opinion?
My husband intends to take Orgovyx and Nubeqa for two years; I just don't know if the 5 fraction SBRT only to the prostate is smart in my husband's case.
I plan to request the Decipher test - thanks for this suggestion.
The doctors have implied this can be "cured" rather than treated and subdued. This may not happen, but I'd like to give it the best shot. My husband will follow (without question) everything the doctors say, but I prefer doing my research.
With gratitude,
Sarah

Jump to this post

@scary1 I would agree with others that IMRT might be the better option; by telling you that 2 years of ADT are necessary, the RO is intimating that the cancer could be in the nodes and surrounding area already even if scans are negative.
Yet, he is only targeting the gland?? Doesn’t make sense.
Your husband should probably go on Orgovyx right away to arrest any growth/spread while you get a second opinion.
Remember, all radiation is cumulative; it all adds up no matter what! Laymen think that 5 huge blasts are really more powerful; but 25 or more, in smaller doses, add up to the same killing effect.
Five sessions of ‘X’ amount of radiation is equal to 25 lesser sessions of the same total amount.
But it’s where that dose goes that really matters.
You need the nodes treated as well, IMO.
Phil

REPLY
Profile picture for jim18 @jim18

There is no redo on radiation since there is a lifetime radiation limit. SBRT is typically 5 sessions. There is also IMRT/IGRT either hypo-fractionated at 20 to 28 fractions or traditional at 35+ fractions. As you noted this can treat the area around the prostate. The more fractions the lower the dose per fraction and usually milder side effects. Also, no RP surgery after radiation so this is an important decision. If young (< 60) might want to start with surgery even though that has a high percentage of reoccurrence.

Jump to this post

@jim18 Thank you for your reply. We plan to get a second opinion just to weigh options.

REPLY
Profile picture for jeff Marchi @jeffmarc

@scary1
I would definitely want to get a second opinion on this. IMRT radiation may make more sense based on the problems your husband has. Cribriform is Probably going to make it so that his cancer will come back if he has not treated To the prostate and the prostate bed and lymph nodes in that area.

That is a very young RO you are working with you really need to speak to someone else that has a lot more experience with what’s going on. If you can’t get that answer at Duke, you need to go somewhere else. Here is the name of a top notch Oncologist that is not far from you. It will be worth going the couple hundred miles to see this doctor and get an Opinion from an expert.

Bethesda Maryland
Sibley memorial hospital
Johns Hopkins, school of medicine
GU Oncologist
Dr. Channing Palmer

With all the cribriform Your husband has a Gleason nine you need more choices. They say T1c But the cribriform Makes it much more aggressive.

Were any of these things found in the biopsy intraductal, ductal,, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive. You need to take a close look at the biopsy and see if any of these are found.

Orgovyx and Nubeqa Are a good choice with the serious case he has. I’ve had prostate cancer for 16 years had surgery and radiation and three more reoccurrences after that. I’ve been on a few different drugs and then now on Orgovyx and Nubeqa And that has kept my PSA undetectable for the last 28 months. I do have a genetic problem, BRCA2, Which keeps my cancer coming back. If you can’t get Nubeqa (Darolutamide) Approved apalutamide Would be another good choice and would definitely be approved. It has more side effects, but works very well for most people.

Has your husband had a hereditary genetic test? Is there a breast cancer, Prostate cancer, or Pancreatic cancer in his family. Those can be the cause of genetic problems. You don’t mention his age and that is a definite factor in treatment. Genetic problems can lead to early reoccurrence.

Jump to this post

@jeffmarc
Thanks again, for another thoughtful response. My husband is 61, and we are awaiting his genetic testing results. His mother did have breast cancer, so we will see. I agree that the RO is very young, so we plan to get a second RO opinion based on the feedback from this forum.

Luckily, he only had perineural invasion on the biopsy and MRI reports - no intraductal, ductal, Seminal vesicle invasion, EPE or ECE was found. The doctors keep saying he's an odd case with how aggressive the cancer is; he has no symptoms at all and his prostate feels normal (DRE).
His Orgovyx arrives in the mail tomorrow, so he'll start that while waiting for Nubeqa approval. In the meantime, we will get a second opinion.

REPLY
Profile picture for bens1 @bens1

@scary1

Centers of excellence are usually set up for a computer telehealth so you might want to try and find a center of excellence that can set something up quickly for you. Many times, they will make arrangements to have the records and imaging accessible to them. One suggestion is Dr. Himanshu Nagar at Memorial Sloan Kettering.
https://www.mskcc.org/cancer-care/doctors/himanshu-nagar. They also have a SBRT radiation machine, among others, with a built in MRI, the Elekta Unity.

Jump to this post

@bens1
Thanks for the Memorial Sloan Kettering recommendation. I plan to call tomorrow and try for a telehealth meeting.

REPLY
Profile picture for heavyphil @heavyphil

@scary1 I would agree with others that IMRT might be the better option; by telling you that 2 years of ADT are necessary, the RO is intimating that the cancer could be in the nodes and surrounding area already even if scans are negative.
Yet, he is only targeting the gland?? Doesn’t make sense.
Your husband should probably go on Orgovyx right away to arrest any growth/spread while you get a second opinion.
Remember, all radiation is cumulative; it all adds up no matter what! Laymen think that 5 huge blasts are really more powerful; but 25 or more, in smaller doses, add up to the same killing effect.
Five sessions of ‘X’ amount of radiation is equal to 25 lesser sessions of the same total amount.
But it’s where that dose goes that really matters.
You need the nodes treated as well, IMO.
Phil

Jump to this post

@heavyphil
Everything you wrote makes perfect sense - 5 blasts to only the prostate doesn't make sense to me either. I read your post to my husband, who was adamant he wanted only the 5-blasts, and he agreed a second opinion is vital. Truly, if doctors told my husband he needed his toes amputated to remove the prostate cancer, he might go along with it. He really doesn't want to engage with his situation.

Orgovyz arrives in the mail tomorrow, so he'll begin that while waiting on Nubeqa approval (which was denied since the scan shows no metastasis).
Thanks for your valuable input.

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