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Dad diagnosed with Gleason 9

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User
Posted 12 Apr 2024 at 04:46

Hi there,

I am a very worried daughter with a father that has just been diagnosed with Gleason 9 Prostate Cancer. 

I am wondering if anyone can shed any light on the below information, please excuse my ignorance. I have been trawling the internet for days and haven't been able to really eat or sleep with worry.

My dad is 73 years of age. Over the last few weeks we have gone from a raised PSA level 8.7 (up from 6 in 2022 and 2021, 5.1 in 2020), Negative DRE, to an MRI (PIRADS 5, SAG T2) to a positive biopsy (10 cores taken, 9 positive, overall score G9) and now we are scheduled for a PSMA PET Scan on Wednesday.

I understand that G9 is a very aggressive cancer and I am petrified of loosing my dad. I am sick with worry that we will find that the cancer has already spread after the PSMA PET scan and I am preparing myself to support my father through what comes next.

Can anyone shed any light on what the above could mean, what treatment options may be available to him? Is G9 curable or are we just looking at managing cancer long term.

Thank you and I apologise in advance if anything is unclear or has already been addressed in other threads.

User
Posted 12 Apr 2024 at 23:10
G9 doesn't tell you anything about what stage the cancer is, it is a description of the actual cancer cells. The staging (whether or not it has spread) will come from the scan results once that has been done.

In relation to prostate cancer diagnosis, 'very aggressive' doesn't mean what it sounds like - it sounds like the cancer is galloping all over his body but 'very aggressive' just means that the Gleason is a score 8 or above (so 3+5, 5+3, 4+4, 4+5, 5+4 or 5+5) and / or the PSA is over 20 or the staging is T3 or T4. Based on what you know so far, your dad only has one of the three risk factors and will hopefully be around to see his mid-80s!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Apr 2024 at 03:29
I agree with Lyn, staging is the most important factor because it's easier to treat if confined to the prostate and even a few pelvic Lymph Nodes that can be removed or radiated.generally. If it has spread further afield and become more extensive, it can mean treating systemically with Hormone, drugs or chemo. The PSMA test works for about the 92% of men that express suffucient PSA to show where any spots of cancer may be, it being a full body scan. Where it proves not to work for the 8 or so % of men, thay may be given another type of advanced scan. So when a full body is assessed, which shows possible spots of cancer in bone and soft tissue, the MDT (Multi Discinaplary Team), will consider this and other tests and advise what treatment options are open to Dad. Best not to speculate but know that treatments have greatly improved over recent years.
Barry
User
Posted 12 Apr 2024 at 19:49

Hi miss me 2024 I was diagnosed Gleason 9 with psa 24.9.    4 year's ago  after 37 sessions off radiotherapy and 2 year's off hormone therapy 4 year's on my psa is now 0.02 and things are more or less back to normal there is light at the end of the tunnel good look with your dad's treatment gaz 👍

Edited by member 12 Apr 2024 at 19:49  | Reason: Mistake

User
Posted 12 Apr 2024 at 20:37

Originally Posted by: Online Community Member
 Is G9 curable or are we just looking at managing cancer long term.

Hi Mel.

I'm sorry you've had to join the club but welcome. Its lovely that you care enough about your dad to find us.

Yes, Gleason 9 is more aggressive. I hope it's curable, because it's what I had 🙂

Is your dad's 9 (4+5) or (5+4)?

The consultants will assess your dad's scans and results and inform you of your treatment options.

Best of luck to you both.

Edited by member 12 Apr 2024 at 23:22  | Reason: Not specified

User
Posted 15 Apr 2024 at 00:54

Thank you all for taking the time to respond to me. It is very overwhelming when you only have parts of the information and you are trying to infer what is happening and going to the worst possible outcome. 

I am unsure if the diagnosis is a 5+4 or a 4+5 as the urologist just said Gleason 9 and then he would look at the outcome of the scan to design the next steps.

We are praying that the cancer is localised and has not spread further than the pelvic area at least which would I think put him on a curative pathway. I will revert back to the forums after the PET scan, thank you so much for your time.

User
Posted 17 Apr 2024 at 23:41

The thread below is not an identical situation to your dad but probably comparable. I commented about eight posts down and would say the same for your father.

https://community.prostatecanceruk.org/posts/t30500-Psa-1500#post294849

 

Edited by member 17 Apr 2024 at 23:41  | Reason: Not specified

Dave

User
Posted 18 Apr 2024 at 08:32

Hi Mel, 

I'm so sorry that the news wasn't what you wanted. I'm not knowledgeable enough to pass any likely treatment options. However Dave who's commented above is very good and  undoubtedly others on here with a similar diagnosis to your dads will be along to assist.

All I can do is offer my support.

Edited by member 18 Apr 2024 at 08:33  | Reason: Additional text

User
Posted 18 Apr 2024 at 12:08
Hi Mel

Sorry to hear your dad has advanced prostate cancer. Remembering back to my diagnosis back in 2018 you feel like your whole existence has come to a shuddering halt.

Once they get him on his treatment path he'll be back on an even keel.

6 years ago it was lifetime HT, docetaxel chemo and radiotherapy. Things have moved on since then, sure one of the other kind souls who post on this forum will advise you what the upto date treatment is that your dad can expect.

User
Posted 19 Apr 2024 at 00:18
Google Kevin Webber who is a member of this forum but also marathon runner / author / decorated by HM the Queen. Since being diagnosed with metastatic PCa, he has completed countless extreme marathons and other challenges around the world, raised in excess of £500k and then written a book about it all. When diagnosed, he was given 2 years to live - I think that was about 7 years ago.

We also have lots of other members who are living almost normal lives 5 / 10 / 15 years after a metastatic diagnosis. It all comes down to the individual response - they will put your dad on hormone treatment and if his PSA drops quickly and then stays low, he could be around for a long time. If he doesn't respond well to the HT, they will look at adding other hormones to the mix and, as someone else has suggested, he may also be offered chemo. You aren't going to lose him any time soon unless he has an exceptionally rare type (and they would have told you that when they gave you the results of all the tests).

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2024 at 21:32
Hi ,my OH is one of the 50% ! PSA 23 Gleason 4+5 . Spread to para aorta nodes , early chemo then onto Abi and Enzo combo with prosap injection once12 weekly. Still working and enjoying life 8.5 yrs later . Thankfully he has responded well to treatment . His PSA has been undetectable for 8 yrs due to his treatment. Yes our lives have changed but we try to take each day as it comes .

Best wishes

Debby

Show Most Thanked Posts
User
Posted 12 Apr 2024 at 19:49

Hi miss me 2024 I was diagnosed Gleason 9 with psa 24.9.    4 year's ago  after 37 sessions off radiotherapy and 2 year's off hormone therapy 4 year's on my psa is now 0.02 and things are more or less back to normal there is light at the end of the tunnel good look with your dad's treatment gaz 👍

Edited by member 12 Apr 2024 at 19:49  | Reason: Mistake

User
Posted 12 Apr 2024 at 20:37

Originally Posted by: Online Community Member
 Is G9 curable or are we just looking at managing cancer long term.

Hi Mel.

I'm sorry you've had to join the club but welcome. Its lovely that you care enough about your dad to find us.

Yes, Gleason 9 is more aggressive. I hope it's curable, because it's what I had 🙂

Is your dad's 9 (4+5) or (5+4)?

The consultants will assess your dad's scans and results and inform you of your treatment options.

Best of luck to you both.

Edited by member 12 Apr 2024 at 23:22  | Reason: Not specified

User
Posted 12 Apr 2024 at 23:10
G9 doesn't tell you anything about what stage the cancer is, it is a description of the actual cancer cells. The staging (whether or not it has spread) will come from the scan results once that has been done.

In relation to prostate cancer diagnosis, 'very aggressive' doesn't mean what it sounds like - it sounds like the cancer is galloping all over his body but 'very aggressive' just means that the Gleason is a score 8 or above (so 3+5, 5+3, 4+4, 4+5, 5+4 or 5+5) and / or the PSA is over 20 or the staging is T3 or T4. Based on what you know so far, your dad only has one of the three risk factors and will hopefully be around to see his mid-80s!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Apr 2024 at 03:29
I agree with Lyn, staging is the most important factor because it's easier to treat if confined to the prostate and even a few pelvic Lymph Nodes that can be removed or radiated.generally. If it has spread further afield and become more extensive, it can mean treating systemically with Hormone, drugs or chemo. The PSMA test works for about the 92% of men that express suffucient PSA to show where any spots of cancer may be, it being a full body scan. Where it proves not to work for the 8 or so % of men, thay may be given another type of advanced scan. So when a full body is assessed, which shows possible spots of cancer in bone and soft tissue, the MDT (Multi Discinaplary Team), will consider this and other tests and advise what treatment options are open to Dad. Best not to speculate but know that treatments have greatly improved over recent years.
Barry
User
Posted 15 Apr 2024 at 00:54

Thank you all for taking the time to respond to me. It is very overwhelming when you only have parts of the information and you are trying to infer what is happening and going to the worst possible outcome. 

I am unsure if the diagnosis is a 5+4 or a 4+5 as the urologist just said Gleason 9 and then he would look at the outcome of the scan to design the next steps.

We are praying that the cancer is localised and has not spread further than the pelvic area at least which would I think put him on a curative pathway. I will revert back to the forums after the PET scan, thank you so much for your time.

User
Posted 17 Apr 2024 at 22:12

Well an update for you all, yesterday we received the news that dads cancer was advanced metastatic disease. I think on the whole it was probably the worst day of my life so far. I should advise that we are in Australia, but now we are looking for what comes next. Can anyone provide any assistance or hope? Thank you

User
Posted 17 Apr 2024 at 23:41

The thread below is not an identical situation to your dad but probably comparable. I commented about eight posts down and would say the same for your father.

https://community.prostatecanceruk.org/posts/t30500-Psa-1500#post294849

 

Edited by member 17 Apr 2024 at 23:41  | Reason: Not specified

Dave

User
Posted 18 Apr 2024 at 08:32

Hi Mel, 

I'm so sorry that the news wasn't what you wanted. I'm not knowledgeable enough to pass any likely treatment options. However Dave who's commented above is very good and  undoubtedly others on here with a similar diagnosis to your dads will be along to assist.

All I can do is offer my support.

Edited by member 18 Apr 2024 at 08:33  | Reason: Additional text

User
Posted 18 Apr 2024 at 12:08
Hi Mel

Sorry to hear your dad has advanced prostate cancer. Remembering back to my diagnosis back in 2018 you feel like your whole existence has come to a shuddering halt.

Once they get him on his treatment path he'll be back on an even keel.

6 years ago it was lifetime HT, docetaxel chemo and radiotherapy. Things have moved on since then, sure one of the other kind souls who post on this forum will advise you what the upto date treatment is that your dad can expect.

User
Posted 19 Apr 2024 at 00:18
Google Kevin Webber who is a member of this forum but also marathon runner / author / decorated by HM the Queen. Since being diagnosed with metastatic PCa, he has completed countless extreme marathons and other challenges around the world, raised in excess of £500k and then written a book about it all. When diagnosed, he was given 2 years to live - I think that was about 7 years ago.

We also have lots of other members who are living almost normal lives 5 / 10 / 15 years after a metastatic diagnosis. It all comes down to the individual response - they will put your dad on hormone treatment and if his PSA drops quickly and then stays low, he could be around for a long time. If he doesn't respond well to the HT, they will look at adding other hormones to the mix and, as someone else has suggested, he may also be offered chemo. You aren't going to lose him any time soon unless he has an exceptionally rare type (and they would have told you that when they gave you the results of all the tests).

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2024 at 01:49

Originally Posted by: Online Community Member
Google Kevin Webber who is a member of this forum but also marathon runner / author / decorated by HM the Queen. Since being diagnosed with metastatic PCa, he has completed countless extreme marathons and other challenges around the world, raised in excess of £500k and then written a book about it all. When diagnosed, he was given 2 years to live - I think that was about 7 years ago.

We also have lots of other members who are living almost normal lives 5 / 10 / 15 years after a metastatic diagnosis.

Morning Lyn,

Kevin is an exceptional man, and I think it would be fair to say, his recovery is also very exceptional.

It appears, in relation to metastatic prostate cancer, our site uses these survival rates.

Around 50 out of every 100 men (around 50%) will survive their cancer for 5 years or more after they are diagnosed.

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/survival

I suggest that most stage 4 survivors, far from being able to run marathons, find the disease  severely impacts their physical and mental health and only a minority will be able to live almost normal lives. 

 

 

Edited by member 23 Apr 2024 at 07:47  | Reason: Additional text

User
Posted 19 Apr 2024 at 21:32
Hi ,my OH is one of the 50% ! PSA 23 Gleason 4+5 . Spread to para aorta nodes , early chemo then onto Abi and Enzo combo with prosap injection once12 weekly. Still working and enjoying life 8.5 yrs later . Thankfully he has responded well to treatment . His PSA has been undetectable for 8 yrs due to his treatment. Yes our lives have changed but we try to take each day as it comes .

Best wishes

Debby

User
Posted 23 Apr 2024 at 07:01

Thank you everyone for your responses. It has been a very hard time for our family with a lot of tears. Although my dad is 73 he is a very young 73, full of life, incredibly intelligent and I was hoping we would have a lot longer together. He is in all honesty my best friend.

We meet with the radiologist tomorrow and then the MDT on the 2nd May. I have been researching all possible treatments, and I am finding it all very confusing, but trying to educate myself so I can be his advocate.

His PET scan suggests the disease is extensive, but I dont really understand it myself. Can anyone provide any insight/questions to ask the radiologist and follow up for the first meeting with the MDT.

PSMA PET Scan Output

At the apex of the prostate gland in the midline and to the left of the midline there is a linear region of markedly increased tracer uptake. SUV = 26.6 – in this location this focal abnormality extend beyond the gland. Slighlt more superiorly there is similar uptake in the midline and to the right of the midline and SUV =17.7 consistent with the disease in both lobes. In the mid zones bilaterally there is peripheral uptake consistent with disease involvement and there is also abnormal tracer uptake at the base of the gland in both lobes extending into both seminal vesicles. There is a very small 2mm lymph node in the pelvic mesentery anterolateral to the bladder which is markedly tracer avid consistent with nodal involvement and there are multiple separate abnormalitites in lateral pelvic, right internal iliac, right common iliac, posterior pelvic mesenteric nodes and nodes on either side of the aortic bifurication in the lower abdomen consistent with regional nodal disease.

Thank you so much

User
Posted 23 Apr 2024 at 08:28

Originally Posted by: Online Community Member
His PET scan suggests the disease is extensive, but I dont really understand it myself. Can anyone provide any insight/questions to ask the radiologist and follow up for the first meeting with the MDT.

Morning Mel.

Unfortunately, I am nowhere as knowlegeable as some folk on here. However, during my cancer journey, I've become quite good at searching for reputable cancer information. I've Googled interpreting PMSA PET scan results and found a couple of reputable sources, but without a scientific/medical background it's pointless sending a link. Perhaps others on here may consider themselves competent enough to comment on your dad's results and suggest  what questions you could ask the clinicians.

All I can do is offer my support. Your comment 'In all honestly he is my best friend' and your love, care, and respect for him is heart warming. I wish you both, and the rest of your family, the very best.

 

 

 

Edited by member 23 Apr 2024 at 09:01  | Reason: Typo

 
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