Grade 5 prostate Cancer: Is this a death sentence?

Posted by franciekid @franciekid, Jan 31 8:04am

My 83 year old husband was just diagnosed with Grade 5 prostate cancer. Doctor gave no details - no Gleason scores - just that of several tumors in the prostate at different grades, one is Grade 5. A PET scan is scheduled for 3 weeks from now - an agonizing wait. Urologist is recommending radiation. He said my husband’s age precluded surgery. My husband is a very healthy 83. We don’t know where to turn next. We’re at Northwestern which is a Center of Excellence. My husband feels he’s been given a death sentence. Does anyone have a similar experience? Thanks.

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no its not death sentence by any means.

.. however, I would tell docs you want to get him on Orgovyx quickly...radiation will follow in about 3 months..but at his age, I think he could easily tolerate 6 mos of ADT and prob 20 radiation sessions which would prob suppress the PC for a good while ( years) ... then you can sort thru longer term options..

His good health is a strong positive prognostic indicator...this will be a bit of an ordeal but 6 mos of ADT will prob be worth the inconvenience. and then, as I said, other options if necessary, farther down the road.

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I was diagnosed with Grade 5 last May. Still alive and kickin with no intention of stopping anytime soon. You may be at a Center of Excellence but this "no details" thing would piss me off. I assume the diagnosis came from biopsy? You have a right to COMPLETE copies of ALL test results. Demand them. They have information that folks here can help with and that you'll need anyway should you choose to get a 2nd opinion. You said a PET scan is scheduled. I assume that is a PSMA PET and is the next logical step after biopsy to determine how/where to treat.

Tell Hubby to keep living...it ain't over yet. Just a little bump.👍👍👍

On a separate note, hope you are kickin it with your battle as well !!!

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You must have a biopsy to get a Gleason score. It sounds like all your husband has had is an MRI.

Getting a PET scan can show whether or not the cancer has spread outside the prostate. If it has then radiation is even more often used, even with younger people.

My brother at 77 had 5 sessions of SBRT radiation And he’s doing great at 80. It works quite well for many people I know.

Your husband should be getting a biopsy. That would let you know what the Gleason score is, which would tell you how aggressive the cancer is. If your doctor doesn’t recommend a biopsy It would make sense to get a second opinion from Dr. David Vanderweele who is a really great doctor at Northwestern? He specializes in prostate cancer and is one of the best oncologist in the country.

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Profile picture for mjp0512 @mjp0512

I was diagnosed with Grade 5 last May. Still alive and kickin with no intention of stopping anytime soon. You may be at a Center of Excellence but this "no details" thing would piss me off. I assume the diagnosis came from biopsy? You have a right to COMPLETE copies of ALL test results. Demand them. They have information that folks here can help with and that you'll need anyway should you choose to get a 2nd opinion. You said a PET scan is scheduled. I assume that is a PSMA PET and is the next logical step after biopsy to determine how/where to treat.

Tell Hubby to keep living...it ain't over yet. Just a little bump.👍👍👍

On a separate note, hope you are kickin it with your battle as well !!!

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@mjp0512 Thank you so much. My oncology team was so responsive, this is frustrating. And my husband doesn’t want to see anything as he trusts the doctor!!

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Profile picture for jeff Marchi @jeffmarc

You must have a biopsy to get a Gleason score. It sounds like all your husband has had is an MRI.

Getting a PET scan can show whether or not the cancer has spread outside the prostate. If it has then radiation is even more often used, even with younger people.

My brother at 77 had 5 sessions of SBRT radiation And he’s doing great at 80. It works quite well for many people I know.

Your husband should be getting a biopsy. That would let you know what the Gleason score is, which would tell you how aggressive the cancer is. If your doctor doesn’t recommend a biopsy It would make sense to get a second opinion from Dr. David Vanderweele who is a really great doctor at Northwestern? He specializes in prostate cancer and is one of the best oncologist in the country.

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@jeffmarc He’s had a biopsy. Several tumors in the prostate at different grades. One is Grade 5. The doc didn’t give us Gleason scores. I will definitely look at the doc you recommended. Thank you.

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Profile picture for mjp0512 @mjp0512

I was diagnosed with Grade 5 last May. Still alive and kickin with no intention of stopping anytime soon. You may be at a Center of Excellence but this "no details" thing would piss me off. I assume the diagnosis came from biopsy? You have a right to COMPLETE copies of ALL test results. Demand them. They have information that folks here can help with and that you'll need anyway should you choose to get a 2nd opinion. You said a PET scan is scheduled. I assume that is a PSMA PET and is the next logical step after biopsy to determine how/where to treat.

Tell Hubby to keep living...it ain't over yet. Just a little bump.👍👍👍

On a separate note, hope you are kickin it with your battle as well !!!

Jump to this post

@mjp0512 Yes, PSMA PET scan.

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Profile picture for mjp0512 @mjp0512

I was diagnosed with Grade 5 last May. Still alive and kickin with no intention of stopping anytime soon. You may be at a Center of Excellence but this "no details" thing would piss me off. I assume the diagnosis came from biopsy? You have a right to COMPLETE copies of ALL test results. Demand them. They have information that folks here can help with and that you'll need anyway should you choose to get a 2nd opinion. You said a PET scan is scheduled. I assume that is a PSMA PET and is the next logical step after biopsy to determine how/where to treat.

Tell Hubby to keep living...it ain't over yet. Just a little bump.👍👍👍

On a separate note, hope you are kickin it with your battle as well !!!

Jump to this post

@mjp0512 I worry that the cancer was described as aggressive and has a high probability of metastates and everything is taking so long. It was 6 weeks from the MRI to the biopsy. Now it’s 3 more weeks from biopsy to PET scan.

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Profile picture for franciekid @franciekid

@mjp0512 I worry that the cancer was described as aggressive and has a high probability of metastates and everything is taking so long. It was 6 weeks from the MRI to the biopsy. Now it’s 3 more weeks from biopsy to PET scan.

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@franciekid You are correct that Grade Group 5 is an aggressive cancer, no doubt. I would not be surprised that the Gleason score is 9 (possibly 10 but that's pretty rare). The PSMA PET scan, as Jeff said, will determine if metastases exist outside of the prostate. In my case, Gleason 9, grade group 5, with lymph mets pretty much from pelvis to neck, and bone mets on vertebrae, my biopsy was on 5/8, my PSMA PET scan was on 6/6. I really wouldn't worry about the timing so much. I started ADT/ARSI treatment one day later on 6/7. They won't start treatment earlier because it'll screw up the test results. ADT ran for a few months before radiation. This is pretty normal.

And, as I said above, life goes on. The exception to normal now is that my calendar is determined by Dr's schedules instead of my own. Hang in there. You guys got this 👌

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Profile picture for franciekid @franciekid

@jeffmarc He’s had a biopsy. Several tumors in the prostate at different grades. One is Grade 5. The doc didn’t give us Gleason scores. I will definitely look at the doc you recommended. Thank you.

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@franciekid
You should be told what the biopsy results were. The Gleason score is essential to know you should ask the doctor what it is right away. I’m sure you can contact him via the internal email, and that is a question you should ask. The highest Gleeson score number is the Gleeson score. Don’t be too involved in the amount of multiple different numbers the highest one is what the doctors count on..

You also want to ask if any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

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Profile picture for mjp0512 @mjp0512

@franciekid You are correct that Grade Group 5 is an aggressive cancer, no doubt. I would not be surprised that the Gleason score is 9 (possibly 10 but that's pretty rare). The PSMA PET scan, as Jeff said, will determine if metastases exist outside of the prostate. In my case, Gleason 9, grade group 5, with lymph mets pretty much from pelvis to neck, and bone mets on vertebrae, my biopsy was on 5/8, my PSMA PET scan was on 6/6. I really wouldn't worry about the timing so much. I started ADT/ARSI treatment one day later on 6/7. They won't start treatment earlier because it'll screw up the test results. ADT ran for a few months before radiation. This is pretty normal.

And, as I said above, life goes on. The exception to normal now is that my calendar is determined by Dr's schedules instead of my own. Hang in there. You guys got this 👌

Jump to this post

@mjp0512 Thank you so much for the encouragement. Really helps.

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