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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My husband's GP made his diagnosis almost a month ago (metastatic prostate cancer, spread to local lymph nodes and spine) sound like a death sentence, too. After appointments with the urologist and oncologist, we feel hopeful that while there isn't a cure, there are viable treatment options which they have already started.
I hope the specialists can get a good treatment plan for your husband too.

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Profile picture for jeff Marchi @jeffmarc

@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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@jeffmarc Precisely some of the things I want to know, especially extra-capsular extensions. MRI was suspicious of extra-capsular involvement. Urologist never mentioned it - and we had s phone call, not an in-person meeting which I found rather detached. My hysband is not one to either ask questions or seek second opinions.

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A Grade Group 5 is a Gleason 9 (4+5) or (5+4) or a Gleason 10 (5+5).
> The NCCN guidelines have recommendations for treating these very high risk prostate cancers. (See attached.)

The PSMA PET scan will result in a SUVmax score. (Make sure you get the score(s).

For now the best course of action is to wait, study, and get up to speed on the nuances of prostate cancer, diagnostics, and treatments.

As for a death sentence, prostate cancer has one of the lowest mortality rates of all cancers. (Not that it’s any real solace, but he’s more likely to die from something else than from prostate cancer.)

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Hi there. I too am a wife whose husband has prostate cancer, aggressive and in numerous lymph nodes. You may find that as you learn more and a treatment plan is put into place your anxiety relaxes a bit. I was right where you are one year ago. The beginning is full of scans and tests and it is scary and confusing. Waiting times between all the procedures can be excruciating. Prostate cancer is not a death sentence. It is a new way of living. My husband and are closer now than we have ever been. The treatments nowadays are amazing. Wishing both of you every success!

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Profile picture for canadaanne @canadaanne

My husband's GP made his diagnosis almost a month ago (metastatic prostate cancer, spread to local lymph nodes and spine) sound like a death sentence, too. After appointments with the urologist and oncologist, we feel hopeful that while there isn't a cure, there are viable treatment options which they have already started.
I hope the specialists can get a good treatment plan for your husband too.

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@canadaanne Thanks so much for this encouraging message. Lack of information from urologist and a 3 week wait for PET scan are distressing. I was diagnosed with lung cancer 3 years ago. Have been cancer free thanks to targeted oral medication. My entire team was so communicative and so helpful.

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Profile picture for ucla2025 @ucla2025

Hi there. I too am a wife whose husband has prostate cancer, aggressive and in numerous lymph nodes. You may find that as you learn more and a treatment plan is put into place your anxiety relaxes a bit. I was right where you are one year ago. The beginning is full of scans and tests and it is scary and confusing. Waiting times between all the procedures can be excruciating. Prostate cancer is not a death sentence. It is a new way of living. My husband and are closer now than we have ever been. The treatments nowadays are amazing. Wishing both of you every success!

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@ucla2025 Thanks for your positive and encouraging response. Very comforting.

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Profile picture for brianjarvis @brianjarvis

A Grade Group 5 is a Gleason 9 (4+5) or (5+4) or a Gleason 10 (5+5).
> The NCCN guidelines have recommendations for treating these very high risk prostate cancers. (See attached.)

The PSMA PET scan will result in a SUVmax score. (Make sure you get the score(s).

For now the best course of action is to wait, study, and get up to speed on the nuances of prostate cancer, diagnostics, and treatments.

As for a death sentence, prostate cancer has one of the lowest mortality rates of all cancers. (Not that it’s any real solace, but he’s more likely to die from something else than from prostate cancer.)

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@brianjarvis Thanks so much, Brian. Very encouraging. I know so much about my own EGFR lung cancer and virtually nothing about prostate cancer. I will get up to speed.

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Profile picture for brianjarvis @brianjarvis

A Grade Group 5 is a Gleason 9 (4+5) or (5+4) or a Gleason 10 (5+5).
> The NCCN guidelines have recommendations for treating these very high risk prostate cancers. (See attached.)

The PSMA PET scan will result in a SUVmax score. (Make sure you get the score(s).

For now the best course of action is to wait, study, and get up to speed on the nuances of prostate cancer, diagnostics, and treatments.

As for a death sentence, prostate cancer has one of the lowest mortality rates of all cancers. (Not that it’s any real solace, but he’s more likely to die from something else than from prostate cancer.)

Jump to this post

@brianjarvis
What she wrote is a little confusing. She specifically said the MRI showed a grade 5 tumor that’s PIRADS 5 not grade group 5.

I think we’re still not sure what the Gleason score is.

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"He said my husband’s age precluded surgery. My husband is a very healthy 83. We don’t know where to turn next. "

Don't accept that. Most people your husband's age are dead. He isn't.

That's what my surgeon told me (at age 75), & recommended radiation. I was having none of that, & he did the robotic laparoscopic radical prostatectomy. No pain, no side effects (I did opt for non-nerve sparing, but that's a different issue), & I resumed normal activities the day after hospital release. Five tiny slits in my belt line which have long since disappeared.

Find a surgeon who has confidence in his skills.

Same thing when my mother broke her arm at age 95. "We don't set arms that old." She was still walking at 100 & lived to be 103.

Modern geriatric medicine needs to catch up with modern life expectancy.

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Profile picture for Read & learn & live! @readandlearn

"He said my husband’s age precluded surgery. My husband is a very healthy 83. We don’t know where to turn next. "

Don't accept that. Most people your husband's age are dead. He isn't.

That's what my surgeon told me (at age 75), & recommended radiation. I was having none of that, & he did the robotic laparoscopic radical prostatectomy. No pain, no side effects (I did opt for non-nerve sparing, but that's a different issue), & I resumed normal activities the day after hospital release. Five tiny slits in my belt line which have long since disappeared.

Find a surgeon who has confidence in his skills.

Same thing when my mother broke her arm at age 95. "We don't set arms that old." She was still walking at 100 & lived to be 103.

Modern geriatric medicine needs to catch up with modern life expectancy.

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@readandlearn Thanks so much.

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