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Just diagnosed.., need advice and support

User
Posted 02 Mar 2024 at 20:04

Hi, 

I’m new here, and I’m not really sure what to say or where to start! 
My husband is 51. He went for a PSA test in January purely because he kept seeing it on tv.., spotted a mobile testing unit was coming to the rugby ground near us, so thought ‘why not’! 

No symptoms. But PSA came back 239.  

He’s had MRI followed by biopsy. He’s been told he has high grade, aggressive prostate cancer, Gleason 9.

He’s just had PSMA PET scan, which has shown nothing in bone, but it is in seminal vessel.

We’re waiting for appointment to see oncologist, but consultant seems totally against surgery saying it won’t offer cure as he firmly believes there must be bone mets, even if just microscopic at the moment, due to high PSA.., although scans don’t show any bone mets.., and he feels H/T and R/T best treatment option. 
But my husband adamant he wants surgery to get it out of his body!

Has anyone else had similar journey? Or similar PSA level / Gleason score on diagnosis?

Any advice on what we’re best to do? Surgery or H/T & R/T?

Thanks 

User
Posted 03 Mar 2024 at 07:55

Hi, please take a look at my profile, I was diagnosed at 50 (over 3 years ago) with Gleason 9 and a PSA of 213 T3b and a bone metastasis in the right hip.  Seminal vesicle and lymph nodes affected at time of diagnosis.  I have documented my journey in detail.  Hope it helps.

User
Posted 03 Mar 2024 at 09:36

Hello....I had the radical prostectomy 14 months ago but lower grade T3 ish....went well and my 1st operation (was discharged next morning) recovery was straight forward. My specialist wanted to watch and wait ....I was "get the thing out".....so ended up going private to get a 2nd opinion and he agreed with me and calmed my wife down as she was worried.  My psa now 0.06 up from 0.04 after operation but if need radiotherapy in bed bring it on....its not going to get me without fight 🤣🤣......round 2 if needed 

Keep strong and go with your husbands thoughts ....2nd opinion everytime 👍

User
Posted 03 Mar 2024 at 10:11

Hi Lola,

I'm very sorry, that you've had to find us but glad you have. There are many knowledgeable, kind and supportive folk who'll be able to help you on your journey.

I was Gleason 9 (5+4), yet had a low PSA level. The cancer had breached the prostate capsule T3a. I had robotic surgery and my seminal vesicles and some lymph nodes were removed.

I presume your hubby is T3b, unfortunately although he wants surgery, this is not always possible.

I'm pretty sure there will be others, like JayKay, that have had a similar diagnosis to yours, who'll be able to better guide you.

I wish you both the very best.

Late edit. Fabulous avatar! 👍

 

Edited by member 03 Mar 2024 at 12:59  | Reason: Late edit

User
Posted 03 Mar 2024 at 11:05

I presume his cancer is sensitive to the PSMA scan, i.e. it did show up the cancer in the prostate? (Some prostate cancers don't register on PSMA scans at all.)

Your husband is young, and that changes things in my view, because you are looking for a long time in remission. I think a prostatectomy is unlikely to be curative, but it may push the can further down the road before another treatment is required, and even if it doesn't do that, it may make another treatment more effective. So while I wouldn't normally recommend prostatectomy for a G9 T3b, I think it might be worth discussing due to his age. It's a bit unusual, but I might even ask about prostatectomy + 2-3 years of hormone therapy, as if there are any remaining micro mets too small to show on scans, the combination of loss of the mothership tumour (prostate) combined with hormone therapy may have a good chance of killing them.

In the case of hormone therapy, you probably wouldn't know until about a year after finishing the hormone therapy when his Testosterone has recovered and his PSA will be indicative of any remaining cancer, if the treatment worked or not. If it didn't and his PSA is rising, then another PSMA PET scan would be useful to try and find where to target radiotherapy. There might even be some newer treatment options by then, but prostate bed radiotherapy plus aiming at any mets found would be an option (providing only a small number of mets found - this doesn't work for more than 3 mets).

The impact of this treatment on erectile function may be significant (nerve sparing might not be available with G9 T3b, but it depends on his specific case), and many men will seriously struggle with that long term, even if it doesn't seem important at the moment of a cancer diagnosis. Skipping the prostatectomy and going straight for radiotherapy might have a higher chance of preserving erectile function, but there are no guarantees either way. Being younger will help. I skipped a prostatectomy because it would not have been nerve sparing and probably not curative when I was diagnosed 5 years older than your husband, and I went straight for radiotherapy which was the right choice for me.

If he does go for radiotherapy first, I would ask about having HDR Boost (a combination of external beam to cover prostate, seminal vesicles, and pelvic lymph nodes), and a high dose rate brachytherapy boost to the prostate and seminal vesicles, where the known disease is, plus hormone therapy of course. This gets a high dose into the cancer, and a lower dose spread outside where it's likely to go next, and should mop up any micro-mets which are already there. Only specialist centres can do this treatment, so that may mean being referred somewhere else, at least for an opinion on if it's a good match for his diagnosis. Don't feel constrained to just the treatments available at your local hospital, but bare in mind the clinicians at your local hospital are unlikely be able to give accurate advice on treatments they don't do, so you would need to push for a referral for any treatment options they don't do which you are interested in.

User
Posted 03 Mar 2024 at 13:29
Often, when a man is convinced he wants surgery even though the surgeon is saying surgery is pointless, it is a panic response. In our heads, it makes sense that the cancer needs to be cut out and we hear so much about people having an op to remove their breast, prostate, ovaries, a lung, etc., so it seems obvious that this is what we need. In fact, there are many cancers that are not removed surgically and that is particularly true when the cancer has spread.

Your husband cannot insist on the surgeon doing the op - he would need to seek a different urologist who is willing to give it a go and that might mean paying privately. With your husband's stats, the op is likely to be non nerve-sparing which means he will not be able to have natural erections afterwards and there is a high risk of permanent incontinence as well. At 51 years old, he potentially has many years ahead of him and quality of life is important. Why push for a treatment that is going to have life-changing side effects if you are going to have to have the other treatment anyway because the op hasn't been successful?

Hopefully, he will feel more positive about RT / HT once he has seen the oncologist (and, if he was my husband, we would definitely be asking about brachytherapy boost) but there is no harm in seeking a second opinion from another urologist who specialises in complex RPs.

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

User
Posted 03 Mar 2024 at 13:45
Hi Lola ,my OH was lower PSA 23 but Gleason 4+5 at the age of 55.His had spread to lymph nodes so no point in operation.

He had early chemo (6) HT and then on to a trial of enzolutamine and abi combo .his PSA came down to undetectable quite quickly and has stayed there for over 8 yrs .

Hope this helps .

Debby

User
Posted 02 Mar 2024 at 20:04

Hi, 

I’m new here, and I’m not really sure what to say or where to start! 
My husband is 51. He went for a PSA test in January purely because he kept seeing it on tv.., spotted a mobile testing unit was coming to the rugby ground near us, so thought ‘why not’! 

No symptoms. But PSA came back 239.  

He’s had MRI followed by biopsy. He’s been told he has high grade, aggressive prostate cancer, Gleason 9.

He’s just had PSMA PET scan, which has shown nothing in bone, but it is in seminal vessel.

We’re waiting for appointment to see oncologist, but consultant seems totally against surgery saying it won’t offer cure as he firmly believes there must be bone mets, even if just microscopic at the moment, due to high PSA.., although scans don’t show any bone mets.., and he feels H/T and R/T best treatment option. 
But my husband adamant he wants surgery to get it out of his body!

Has anyone else had similar journey? Or similar PSA level / Gleason score on diagnosis?

Any advice on what we’re best to do? Surgery or H/T & R/T?

Thanks 

User
Posted 03 Mar 2024 at 07:02

I was Gleason 9 but with a psa off 24.9 had 18 months off hormone therapy and 37 fractions off radiotherapy in 2020 nearly 4 year's on psa now 0.01 and things are ok working all the way through treatment as I love my job and turned down a retirement package good luck with your treatment gaz 👍

User
Posted 03 Mar 2024 at 08:13

Thank you Gaz. 

It’s lovely to hear you’re doing well. It’s just very scary and stressful for us at the moment, especially due to his PSA level. We just feel a bit helpless at the moment. But he’s just started Biclutamide 3 days ago so we’re hoping this will bring his PSA level down rapidly! 🙏🏻 

User
Posted 03 Mar 2024 at 08:25

Thank you JayKay. I’ve just read your bio and you’ve been going through a lot! I’ve started to follow you, I hope that’s okay? 

Where you started sounds very similar to where we are now. Although they haven’t found anything in his nodes or bones, as of yet! We’re just terrified about his PSA level, but he’s just started HT a few days ago so hopefully that will bring it down 🙏🏻  and although absolutely terrifying, it’s good to hear from someone who has had a similar start to their journey because it’s given an indication of what’s going to happen next and prepare us for what’s to come! 

I wish you the very best of luck with your ongoing treatment. Please keep updating your bio, you’ve no idea how much you have helped us today. 

User
Posted 03 Mar 2024 at 12:00

Be positive Lola there is light at the end of the tunnel. treatment options have improved immensely in recent years keep in touch gaz 👍

User
Posted 03 Mar 2024 at 13:14

Hi Andy, thank you so much for your reply, this is really helpful.

The PSMA PET scan showed cancer throughout his prostate and in his seminal vessel. But didn’t pick up anything anywhere else. The guy who did the scan told my husband it was very sensitive to prostate cells, so would pick them up wherever they are!
So we feel slightly relieved it didn’t find anything in lymph nodes or bones. We just don’t understand how his PSA level can be so high when he has no symptoms at all! 

It just feels like a terrifying minefield and a journey we just don’t want to be on! :(

User
Posted 03 Mar 2024 at 16:57

Originally Posted by: Online Community Member
Hi Lola ,my OH was lower PSA 23 but Gleason 4+5 at the age of 55.His had spread to lymph nodes so no point in operation.
He had early chemo (6) HT and then on to a trial of enzolutamine and abi combo .his PSA came down to undetectable quite quickly and has stayed there for over 8 yrs .
Hope this helps .
Debby

 

I have just read your bio. Your dh sounds a similar diagnosis to mine. I’m glad to read he’s still doing well after 8 years. DH wasn’t given a great prognosis, though his was treated 9 years ago but recently found it it’s now in para aortic nodes, plus nodes in pelvis. Hopefully he will do well too, currently on zoladex and enza (I do have my own thread, I don’t want to hijack this one!) 

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User
Posted 03 Mar 2024 at 07:02

I was Gleason 9 but with a psa off 24.9 had 18 months off hormone therapy and 37 fractions off radiotherapy in 2020 nearly 4 year's on psa now 0.01 and things are ok working all the way through treatment as I love my job and turned down a retirement package good luck with your treatment gaz 👍

User
Posted 03 Mar 2024 at 07:55

Hi, please take a look at my profile, I was diagnosed at 50 (over 3 years ago) with Gleason 9 and a PSA of 213 T3b and a bone metastasis in the right hip.  Seminal vesicle and lymph nodes affected at time of diagnosis.  I have documented my journey in detail.  Hope it helps.

User
Posted 03 Mar 2024 at 08:13

Thank you Gaz. 

It’s lovely to hear you’re doing well. It’s just very scary and stressful for us at the moment, especially due to his PSA level. We just feel a bit helpless at the moment. But he’s just started Biclutamide 3 days ago so we’re hoping this will bring his PSA level down rapidly! 🙏🏻 

User
Posted 03 Mar 2024 at 08:25

Thank you JayKay. I’ve just read your bio and you’ve been going through a lot! I’ve started to follow you, I hope that’s okay? 

Where you started sounds very similar to where we are now. Although they haven’t found anything in his nodes or bones, as of yet! We’re just terrified about his PSA level, but he’s just started HT a few days ago so hopefully that will bring it down 🙏🏻  and although absolutely terrifying, it’s good to hear from someone who has had a similar start to their journey because it’s given an indication of what’s going to happen next and prepare us for what’s to come! 

I wish you the very best of luck with your ongoing treatment. Please keep updating your bio, you’ve no idea how much you have helped us today. 

User
Posted 03 Mar 2024 at 09:36

Hello....I had the radical prostectomy 14 months ago but lower grade T3 ish....went well and my 1st operation (was discharged next morning) recovery was straight forward. My specialist wanted to watch and wait ....I was "get the thing out".....so ended up going private to get a 2nd opinion and he agreed with me and calmed my wife down as she was worried.  My psa now 0.06 up from 0.04 after operation but if need radiotherapy in bed bring it on....its not going to get me without fight 🤣🤣......round 2 if needed 

Keep strong and go with your husbands thoughts ....2nd opinion everytime 👍

User
Posted 03 Mar 2024 at 10:11

Hi Lola,

I'm very sorry, that you've had to find us but glad you have. There are many knowledgeable, kind and supportive folk who'll be able to help you on your journey.

I was Gleason 9 (5+4), yet had a low PSA level. The cancer had breached the prostate capsule T3a. I had robotic surgery and my seminal vesicles and some lymph nodes were removed.

I presume your hubby is T3b, unfortunately although he wants surgery, this is not always possible.

I'm pretty sure there will be others, like JayKay, that have had a similar diagnosis to yours, who'll be able to better guide you.

I wish you both the very best.

Late edit. Fabulous avatar! 👍

 

Edited by member 03 Mar 2024 at 12:59  | Reason: Late edit

User
Posted 03 Mar 2024 at 11:05

I presume his cancer is sensitive to the PSMA scan, i.e. it did show up the cancer in the prostate? (Some prostate cancers don't register on PSMA scans at all.)

Your husband is young, and that changes things in my view, because you are looking for a long time in remission. I think a prostatectomy is unlikely to be curative, but it may push the can further down the road before another treatment is required, and even if it doesn't do that, it may make another treatment more effective. So while I wouldn't normally recommend prostatectomy for a G9 T3b, I think it might be worth discussing due to his age. It's a bit unusual, but I might even ask about prostatectomy + 2-3 years of hormone therapy, as if there are any remaining micro mets too small to show on scans, the combination of loss of the mothership tumour (prostate) combined with hormone therapy may have a good chance of killing them.

In the case of hormone therapy, you probably wouldn't know until about a year after finishing the hormone therapy when his Testosterone has recovered and his PSA will be indicative of any remaining cancer, if the treatment worked or not. If it didn't and his PSA is rising, then another PSMA PET scan would be useful to try and find where to target radiotherapy. There might even be some newer treatment options by then, but prostate bed radiotherapy plus aiming at any mets found would be an option (providing only a small number of mets found - this doesn't work for more than 3 mets).

The impact of this treatment on erectile function may be significant (nerve sparing might not be available with G9 T3b, but it depends on his specific case), and many men will seriously struggle with that long term, even if it doesn't seem important at the moment of a cancer diagnosis. Skipping the prostatectomy and going straight for radiotherapy might have a higher chance of preserving erectile function, but there are no guarantees either way. Being younger will help. I skipped a prostatectomy because it would not have been nerve sparing and probably not curative when I was diagnosed 5 years older than your husband, and I went straight for radiotherapy which was the right choice for me.

If he does go for radiotherapy first, I would ask about having HDR Boost (a combination of external beam to cover prostate, seminal vesicles, and pelvic lymph nodes), and a high dose rate brachytherapy boost to the prostate and seminal vesicles, where the known disease is, plus hormone therapy of course. This gets a high dose into the cancer, and a lower dose spread outside where it's likely to go next, and should mop up any micro-mets which are already there. Only specialist centres can do this treatment, so that may mean being referred somewhere else, at least for an opinion on if it's a good match for his diagnosis. Don't feel constrained to just the treatments available at your local hospital, but bare in mind the clinicians at your local hospital are unlikely be able to give accurate advice on treatments they don't do, so you would need to push for a referral for any treatment options they don't do which you are interested in.

User
Posted 03 Mar 2024 at 12:00

Be positive Lola there is light at the end of the tunnel. treatment options have improved immensely in recent years keep in touch gaz 👍

User
Posted 03 Mar 2024 at 13:14

Hi Andy, thank you so much for your reply, this is really helpful.

The PSMA PET scan showed cancer throughout his prostate and in his seminal vessel. But didn’t pick up anything anywhere else. The guy who did the scan told my husband it was very sensitive to prostate cells, so would pick them up wherever they are!
So we feel slightly relieved it didn’t find anything in lymph nodes or bones. We just don’t understand how his PSA level can be so high when he has no symptoms at all! 

It just feels like a terrifying minefield and a journey we just don’t want to be on! :(

User
Posted 03 Mar 2024 at 13:29
Often, when a man is convinced he wants surgery even though the surgeon is saying surgery is pointless, it is a panic response. In our heads, it makes sense that the cancer needs to be cut out and we hear so much about people having an op to remove their breast, prostate, ovaries, a lung, etc., so it seems obvious that this is what we need. In fact, there are many cancers that are not removed surgically and that is particularly true when the cancer has spread.

Your husband cannot insist on the surgeon doing the op - he would need to seek a different urologist who is willing to give it a go and that might mean paying privately. With your husband's stats, the op is likely to be non nerve-sparing which means he will not be able to have natural erections afterwards and there is a high risk of permanent incontinence as well. At 51 years old, he potentially has many years ahead of him and quality of life is important. Why push for a treatment that is going to have life-changing side effects if you are going to have to have the other treatment anyway because the op hasn't been successful?

Hopefully, he will feel more positive about RT / HT once he has seen the oncologist (and, if he was my husband, we would definitely be asking about brachytherapy boost) but there is no harm in seeking a second opinion from another urologist who specialises in complex RPs.

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

User
Posted 03 Mar 2024 at 13:45
Hi Lola ,my OH was lower PSA 23 but Gleason 4+5 at the age of 55.His had spread to lymph nodes so no point in operation.

He had early chemo (6) HT and then on to a trial of enzolutamine and abi combo .his PSA came down to undetectable quite quickly and has stayed there for over 8 yrs .

Hope this helps .

Debby

User
Posted 03 Mar 2024 at 16:57

Originally Posted by: Online Community Member
Hi Lola ,my OH was lower PSA 23 but Gleason 4+5 at the age of 55.His had spread to lymph nodes so no point in operation.
He had early chemo (6) HT and then on to a trial of enzolutamine and abi combo .his PSA came down to undetectable quite quickly and has stayed there for over 8 yrs .
Hope this helps .
Debby

 

I have just read your bio. Your dh sounds a similar diagnosis to mine. I’m glad to read he’s still doing well after 8 years. DH wasn’t given a great prognosis, though his was treated 9 years ago but recently found it it’s now in para aortic nodes, plus nodes in pelvis. Hopefully he will do well too, currently on zoladex and enza (I do have my own thread, I don’t want to hijack this one!) 

 
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