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Hubby Gleason 4+4, PSA 34, terrified

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User
Posted 27 Jun 2023 at 16:55

Hubby is 69, PSA 34, MRI and biopsies show Gleason 4+4 Stage 3b, one lymph affected. We're waiting for the psma scan to see if it's in the bones already. No treatment had been offered yet. Nobody seems to be able to give us any clue about whether this is curable, able to be put in to remission, or......I'm doing as much research as I can but looking for support/advice/a virtual shoulder to cry on.....

User
Posted 27 Jun 2023 at 18:06

This is an excellent site for "shoulder to cry on", and sometimes we can answer questions.

You are at the worst point in this disease right now. The problem is that you or the doctors don't yet have enough information to know what is going on. For a lot of people they then start assuming the worst.

From the limited information you have posted it has a reasonable chance of being curable, and if not curable a high chance of being put into remission for about a decade.

If there was no lymph node involvement it would have been better, but with only one lymph node it is still ok. If you get a clear bone scan that would be good.

If you like putting numbers on things then I can give you two numbers for his chance of reaching the age of 80 years old:

If he was completely cancer free, he would have an 80% chance of reaching 80 years old, that is to say 20 out of 100 men will get hit by a bus or have an heart attack before they reach 80 years old.

Because of what you have posted, we can now say he has only a 75% chance of reaching 80 years old. Which is only a little bit worse than 80%. To put it another way he is four times more likely to die of something other than prostate cancer.

As you get more information, and we know what treatment he will have these percentages will change, but at the moment we just have to go with the limited information we know.

 

Dave

User
Posted 27 Jun 2023 at 18:17

Hi Su2108,

Please try and not panic…..I know it’s difficult but until you have all the information I would try and (both) keep as busy and active as possible. And please don’t use Doctor Google…..as far as I am concerned this is the ONLY place I look online. If you want more support, both of you go along to your local Maggies Centre who will help you all the way through this. I thought Maggies wasn’t for me but went eventually and they really helped me come to terms with this as well as being a great place for information. Or call the wonderful specialists on PCUK.

My PSA was 36, type T3b so spread to Seminal Vesicles, if it’s spread to the lymph nodes I would have thought it was T3c? I was 4+3 Gleason so a slightly lower score but not much . Because of the spread Surgery was ruled out(in Scotland) so I went down the HT and RT route. Mine is curable and your hubby’s may well be curable.

This is definitely the worst stage of the ‘journey’…the not knowing! Once you have the full diagnosis, treatment options will be given you and YOU make the choice(if there is one). Once you’ve made that choice things will get better for both of you.

Good luck to both of you and the help you’ll get on here from members who have SO much more knowledge than me is invaluable.

 

Derek

Edited by member 27 Jun 2023 at 18:18  | Reason: Not specified

User
Posted 01 Aug 2023 at 00:08
Dave you are so depressing, get with the times! Thanks to the wonders of PSMA imaging it sounds like there is still a chance of a long remission.

SU2108. You need to understand what your other half is having, why he is having it and when. Do not rely on the NHS you must be an informed patient and you need make sure the system works for you.

I would insist (yes that is the correct phrase) on answers from the medical team. You need to know:

What medical treatment he is having and what the intention of the treatment is.

Make sure the radiotherapy is treating the prostate AND the other identified hotspots.

User
Posted 01 Aug 2023 at 19:12
Hi ,my OH Gary stats were PSA 23 spread to lymph nodes 4+5 N1M1 . 55 at diagnosis .

He had early chemo (6) 3 weeks apart as well as prosap infection every 12 weeks .He was lucky enough to be offered a trial of Abi and Enzo combo .The chemo was straight forward even managing to continue working throughout.His psa came down pretty quickly to be undetectable and it’s stayed there ever since .

It will be 8 yrs since diagnosis in December,he’s still working in construction just in a less physical way .

I hope all goes well ,keep asking questions and someone will come along to give some insight into their own journey.

Best wishes Debby

User
Posted 11 Aug 2023 at 07:41
Hi again ! My hubby was on the stampede trial (arm j) involving both these drugs ,his results were fantastic but he lost all strength and was tired . Last October he was asked to stop the abi after being on it for 6.5 years as data had shown there was not much difference to just having one or the other but the toxicity of both was causing the side effects.Since stopping Abi he has regained some of his strength and also generally feels more alert .His PSA has still continued to be undetected.

Hope this helps

Debby

User
Posted 27 Jun 2023 at 18:53

Hey Su,

Just my thoughts, As our Dave, has, as ever, brilliantly put, You're caught up in the infancy of something thats going to take over for the next wee while. The absolute worst part. What comes across though, Is your determination to help him get to the next chapter. 

Virtual shoulders? Here a plenty.

You've got this Mrs.

Stay strong.

Jamie.

User
Posted 27 Jun 2023 at 20:32
All good info above , just stay on this site and nhs site . You got to remember this cancer is so so common , it does help if you personally know someone who as been on the journey , it helped me and Macmillan was very supportive , let me assure it’s not the end of the world
User
Posted 31 Jul 2023 at 23:25

Don't blame yourself for not writing something down. You are new to this and there is a lot to take in. Consider asking to record the next meeting it may help in future.

I don't know anything about chemotherapy, I didn't think it was available as tablets. I do know that during the pandemic, enzalutamide or abiterone were given as hormone blockers, instead of chemotherapy and are very effective. these are both tablets. Because these two drugs were used on people who were originally scheduled for chemotherapy they are occasionally incorrectly thought of as chemotherapy drugs.

With the M1 in the diagnosis a cure is looking less likely, management of the disease is more realistic. In a previous post I was suggesting he had a 75% chance of reaching 80 years old, I think now that chance is about 50%. The only slight silver lining is the bad news is now all out there.

 

 

Dave

User
Posted 01 Aug 2023 at 00:46

Sorry you are here SU2108, but glad you now have your full diagnosis and can move forward with treatment.

My husband was originally diagnosed with a bone met in his pelvis so I was trying to research as much as possible. I came across YouTube videos with Dr Eugene Kwon and they really did provide me with a lot of hope. Oncology offered my husband HT and then either chemo or enzalutimide.

Things turned out slightly different as a 2nd opinion disagreed with the M1b and PSMA confirmed it wasn’t cancer. He had the op and they removed the prostate and 14 lymph nodes. 18 months post op he will be having RT as PSA has started to rise. 

If you think you have missed out on any important info from the appointment then maybe try to email and hopefully they can fill any gaps. 

 

User
Posted 01 Aug 2023 at 06:30

Hi there - i think I have a very similar diagnosis to your husband, slightly lower PSA and slightly higher Gleason. My PSMA scan revealed some distant lymph node involvement so I  am not curable. I am on a zoladex injection once every three months (started at every month) and Appalutamide daily. I had a course of something for a month or so, just to avoid tumour flare before I started with the zoladex. From what I can gather, both Appalutamide and zoladex are fairly interchangeable with a 2 or 3 other drugs that do similar things. I am nearly a year in and lucky enough not to be suffering too severely with side effects - life is pretty much carrying on as normal. This period you are going through at the start is awful, but things are a lot better than they would have been a few years ago, and new treatments are getting developed  all the time. As mentioned above, 10 decent years is not an unrealistic hope. Wishing you all the best through this. Things will settle down.  

User
Posted 01 Aug 2023 at 22:48

After my prostatectomy I had persistent PSA.  So they did a PSMA scan and identified two pelvic lymph nodes and one hilar lymph node (sternum area).

Because the hilar node would mean my cancer would be incurable my oncologist arranged a biopsy.   Fortunately the biopsy came up negative so I stayed N1M0.  I was very lucky that the hilar node was accessible for biopsy.

Just letting you know this in case a biopsy is an option in you husband case to confirm the sternum node.

 

User
Posted 02 Aug 2023 at 10:12
Jeez, it isn't great when you come on here looking for help because you are confused and then people confuse things even more!

If they are going straight to a hormone injection this Thursday I assume he will be having Degarelix (Firmagon) which stops testosterone production immediately. Most commonly, a man is given bicalutimide tablets to take for a couple of weeks before he starts having hormone injections - something like Prostap or Zoladex.

The chemo-like tablets mentioned by the doctor will be something like darolutimide. All the trials suggest that giving two or three different treatments right at the start is more effective than what they used to do, which was to add a new treatment each time the previous one failed.

There is no justification for asking the doctors to do further biopsies or double-check the nodes / mets based on comments made here - you would sound foolish because I think other posters have misunderstood your diagnosis.

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

User
Posted 02 Aug 2023 at 10:45

Looking at both ours (my husbands) and Jellies experiences it would seem sometimes you are best to get these things double checked. It’s not a perfect science and different opinions can bring different outcomes and different treatments.

I’m extremely grateful that Rob is only just starting HT longer term now instead of two years ago and is still on a curative pathway, even with us being back with the original team.

As we know every situation is different and we can only let others know of what we have experienced and see if it can help them in any way. 

 

User
Posted 02 Aug 2023 at 11:18

Sorry I got confused and deleted my original post.  Must be all the drugs.   Thats is my main point Elaine.  I also had a sternum region lymph node identified by PSMA scan and when they biopsied it, it turned out to be negative.

Whether or not they can conduct a biopsy depends on the location of the node.  But my oncologist had no hesitation organising ot because he understood the implications for me of being N1 or M1.

Anyway I am done with this forum.  Best wishes to all patients.

 

User
Posted 08 Aug 2023 at 21:49

Elaine,

Thanks for the clarification. Cheers!

User
Posted 10 Aug 2023 at 22:15

Hi all thanks again for your continued support...it really is appreciated.

We actually live in the Netherlands but are English, we're being looked after by two hospitals, one of which is a university hospital with specialist prostate department. 

Since my last post, hubby has been given a zoladex implant, tomorrow we're off to the radiology team and next week we're doing the oncologist. I think I confused myself with regards to the tablets they have suggested...I thought they were chemo type tablets but it looks like they will be a combination of enzalutamide and abiraterone. Following the Stampede protocol which I think was a clinical trial. Then radiotherapy. 

About the sternum, I believe they said it was in the bone of the sternum but I'll ask them to clarify that when we see them next week. 

That's the update so far, thanks again, Su xx

Show Most Thanked Posts
User
Posted 27 Jun 2023 at 18:06

This is an excellent site for "shoulder to cry on", and sometimes we can answer questions.

You are at the worst point in this disease right now. The problem is that you or the doctors don't yet have enough information to know what is going on. For a lot of people they then start assuming the worst.

From the limited information you have posted it has a reasonable chance of being curable, and if not curable a high chance of being put into remission for about a decade.

If there was no lymph node involvement it would have been better, but with only one lymph node it is still ok. If you get a clear bone scan that would be good.

If you like putting numbers on things then I can give you two numbers for his chance of reaching the age of 80 years old:

If he was completely cancer free, he would have an 80% chance of reaching 80 years old, that is to say 20 out of 100 men will get hit by a bus or have an heart attack before they reach 80 years old.

Because of what you have posted, we can now say he has only a 75% chance of reaching 80 years old. Which is only a little bit worse than 80%. To put it another way he is four times more likely to die of something other than prostate cancer.

As you get more information, and we know what treatment he will have these percentages will change, but at the moment we just have to go with the limited information we know.

 

Dave

User
Posted 27 Jun 2023 at 18:17

Hi Su2108,

Please try and not panic…..I know it’s difficult but until you have all the information I would try and (both) keep as busy and active as possible. And please don’t use Doctor Google…..as far as I am concerned this is the ONLY place I look online. If you want more support, both of you go along to your local Maggies Centre who will help you all the way through this. I thought Maggies wasn’t for me but went eventually and they really helped me come to terms with this as well as being a great place for information. Or call the wonderful specialists on PCUK.

My PSA was 36, type T3b so spread to Seminal Vesicles, if it’s spread to the lymph nodes I would have thought it was T3c? I was 4+3 Gleason so a slightly lower score but not much . Because of the spread Surgery was ruled out(in Scotland) so I went down the HT and RT route. Mine is curable and your hubby’s may well be curable.

This is definitely the worst stage of the ‘journey’…the not knowing! Once you have the full diagnosis, treatment options will be given you and YOU make the choice(if there is one). Once you’ve made that choice things will get better for both of you.

Good luck to both of you and the help you’ll get on here from members who have SO much more knowledge than me is invaluable.

 

Derek

Edited by member 27 Jun 2023 at 18:18  | Reason: Not specified

User
Posted 27 Jun 2023 at 18:53

Hey Su,

Just my thoughts, As our Dave, has, as ever, brilliantly put, You're caught up in the infancy of something thats going to take over for the next wee while. The absolute worst part. What comes across though, Is your determination to help him get to the next chapter. 

Virtual shoulders? Here a plenty.

You've got this Mrs.

Stay strong.

Jamie.

User
Posted 27 Jun 2023 at 20:32
All good info above , just stay on this site and nhs site . You got to remember this cancer is so so common , it does help if you personally know someone who as been on the journey , it helped me and Macmillan was very supportive , let me assure it’s not the end of the world
User
Posted 31 Jul 2023 at 16:13
Hi All, many thanks again for your support. We are now a few weeks further along and we've had the results of the PSMA scan. The cancer is in the prostate, seminal tubes, 2 lymphnodes in the pelvic area and in one node in the sternum. So Hubby has now received the label T3bN1M1.

Thursday he will receive his first hormone injection and from then on we're a bit confused. We think the consultant said that they would be giving him a chemo-type tablet to have in conjunction with the hormones and then the radiology department will contact us about radiotherapy. But we havent heard anything since about the tablets? do we need to wait til our next oncology visit mid August? Confusion.I think a call to the urologist will be in order just to clarify this. We were in so much of a tizz last week when we were there, we promptly forgot something so important. And me being me...didnt write it down.

Anyway thats the update here so far. Look forward to your feedback ;-)

User
Posted 31 Jul 2023 at 16:36
https://community.prostatecanceruk.org/resource.ashx?url=%2fimages%2fAvatars%2fCommon%2fImage_8.png&width=180&height=180&upd=638264145498852731

Su2108

Posted 31 Jul 2023 at 16:13

 

Hi All, many thanks again for your support. We are now a few weeks further along and we've had the results of the PSMA scan. The cancer is in the prostate, seminal tubes, 2 lymphnodes in the pelvic area and in one node in the sternum. So Hubby has now received the label T3bN1M1.

Thursday he will receive his first hormone injection and from then on we're a bit confused. We think the consultant said that they would be giving him a chemo-type tablet to have in conjunction with the hormones and then the radiology department will contact us about radiotherapy. But we havent heard anything since about the tablets? do we need to wait til our next oncology visit mid August? Confusion.I think a call to the urologist will be in order just to clarify this. We were in so much of a tizz last week when we were there, we promptly forgot something so important. And me being me...didnt write it down.

Anyway thats the update here so far. Look forward to your feedback ;-)

User
Posted 31 Jul 2023 at 23:25

Don't blame yourself for not writing something down. You are new to this and there is a lot to take in. Consider asking to record the next meeting it may help in future.

I don't know anything about chemotherapy, I didn't think it was available as tablets. I do know that during the pandemic, enzalutamide or abiterone were given as hormone blockers, instead of chemotherapy and are very effective. these are both tablets. Because these two drugs were used on people who were originally scheduled for chemotherapy they are occasionally incorrectly thought of as chemotherapy drugs.

With the M1 in the diagnosis a cure is looking less likely, management of the disease is more realistic. In a previous post I was suggesting he had a 75% chance of reaching 80 years old, I think now that chance is about 50%. The only slight silver lining is the bad news is now all out there.

 

 

Dave

User
Posted 01 Aug 2023 at 00:08
Dave you are so depressing, get with the times! Thanks to the wonders of PSMA imaging it sounds like there is still a chance of a long remission.

SU2108. You need to understand what your other half is having, why he is having it and when. Do not rely on the NHS you must be an informed patient and you need make sure the system works for you.

I would insist (yes that is the correct phrase) on answers from the medical team. You need to know:

What medical treatment he is having and what the intention of the treatment is.

Make sure the radiotherapy is treating the prostate AND the other identified hotspots.

User
Posted 01 Aug 2023 at 00:46

Sorry you are here SU2108, but glad you now have your full diagnosis and can move forward with treatment.

My husband was originally diagnosed with a bone met in his pelvis so I was trying to research as much as possible. I came across YouTube videos with Dr Eugene Kwon and they really did provide me with a lot of hope. Oncology offered my husband HT and then either chemo or enzalutimide.

Things turned out slightly different as a 2nd opinion disagreed with the M1b and PSMA confirmed it wasn’t cancer. He had the op and they removed the prostate and 14 lymph nodes. 18 months post op he will be having RT as PSA has started to rise. 

If you think you have missed out on any important info from the appointment then maybe try to email and hopefully they can fill any gaps. 

 

User
Posted 01 Aug 2023 at 06:30

Hi there - i think I have a very similar diagnosis to your husband, slightly lower PSA and slightly higher Gleason. My PSMA scan revealed some distant lymph node involvement so I  am not curable. I am on a zoladex injection once every three months (started at every month) and Appalutamide daily. I had a course of something for a month or so, just to avoid tumour flare before I started with the zoladex. From what I can gather, both Appalutamide and zoladex are fairly interchangeable with a 2 or 3 other drugs that do similar things. I am nearly a year in and lucky enough not to be suffering too severely with side effects - life is pretty much carrying on as normal. This period you are going through at the start is awful, but things are a lot better than they would have been a few years ago, and new treatments are getting developed  all the time. As mentioned above, 10 decent years is not an unrealistic hope. Wishing you all the best through this. Things will settle down.  

User
Posted 01 Aug 2023 at 19:12
Hi ,my OH Gary stats were PSA 23 spread to lymph nodes 4+5 N1M1 . 55 at diagnosis .

He had early chemo (6) 3 weeks apart as well as prosap infection every 12 weeks .He was lucky enough to be offered a trial of Abi and Enzo combo .The chemo was straight forward even managing to continue working throughout.His psa came down pretty quickly to be undetectable and it’s stayed there ever since .

It will be 8 yrs since diagnosis in December,he’s still working in construction just in a less physical way .

I hope all goes well ,keep asking questions and someone will come along to give some insight into their own journey.

Best wishes Debby

User
Posted 01 Aug 2023 at 22:48

After my prostatectomy I had persistent PSA.  So they did a PSMA scan and identified two pelvic lymph nodes and one hilar lymph node (sternum area).

Because the hilar node would mean my cancer would be incurable my oncologist arranged a biopsy.   Fortunately the biopsy came up negative so I stayed N1M0.  I was very lucky that the hilar node was accessible for biopsy.

Just letting you know this in case a biopsy is an option in you husband case to confirm the sternum node.

 

User
Posted 02 Aug 2023 at 00:50

Really sorry think I misunderstood your post and thought something had shown up in the sternum….not a lymph node in that area. My previous response will probably seem confusing 🤦🏻‍♀️

User
Posted 02 Aug 2023 at 10:12
Jeez, it isn't great when you come on here looking for help because you are confused and then people confuse things even more!

If they are going straight to a hormone injection this Thursday I assume he will be having Degarelix (Firmagon) which stops testosterone production immediately. Most commonly, a man is given bicalutimide tablets to take for a couple of weeks before he starts having hormone injections - something like Prostap or Zoladex.

The chemo-like tablets mentioned by the doctor will be something like darolutimide. All the trials suggest that giving two or three different treatments right at the start is more effective than what they used to do, which was to add a new treatment each time the previous one failed.

There is no justification for asking the doctors to do further biopsies or double-check the nodes / mets based on comments made here - you would sound foolish because I think other posters have misunderstood your diagnosis.

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

User
Posted 02 Aug 2023 at 10:45

Looking at both ours (my husbands) and Jellies experiences it would seem sometimes you are best to get these things double checked. It’s not a perfect science and different opinions can bring different outcomes and different treatments.

I’m extremely grateful that Rob is only just starting HT longer term now instead of two years ago and is still on a curative pathway, even with us being back with the original team.

As we know every situation is different and we can only let others know of what we have experienced and see if it can help them in any way. 

 

User
Posted 02 Aug 2023 at 11:18

Sorry I got confused and deleted my original post.  Must be all the drugs.   Thats is my main point Elaine.  I also had a sternum region lymph node identified by PSMA scan and when they biopsied it, it turned out to be negative.

Whether or not they can conduct a biopsy depends on the location of the node.  But my oncologist had no hesitation organising ot because he understood the implications for me of being N1 or M1.

Anyway I am done with this forum.  Best wishes to all patients.

 

User
Posted 06 Aug 2023 at 19:27

Hi. Do you mind telling me where he was treated, as in hospital? Thank you.

User
Posted 07 Aug 2023 at 01:29

Originally Posted by: Online Community Member

Hi. Do you mind telling me where he was treated, as in hospital? Thank you.

 

Hi, just wanted to check who this question was for? When you click reply it just replies on the thread and not to individual posts. I had to click on ‘quote’ to show I was responding to you here.

 

User
Posted 07 Aug 2023 at 03:47

Hi Elaine. Should I use the name I’m replying to, like I just did? I realized after I sent the question that I’m in the U.S. so I’m sure their hospital is in the UK.   Thank you.

User
Posted 07 Aug 2023 at 22:48

Originally Posted by: Online Community Member

Hi Elaine. Should I use the name I’m replying to, like I just did? I realized after I sent the question that I’m in the U.S. so I’m sure their hospital is in the UK.   Thank you.

 

Yes that definitely makes it easier to understand who you are responding to as I don’t think the reply button works as it should.

To be honest I always assume everyone is in the UK but there are actually many members from all over the world. If you click on the persons profile it will often tell you the country they are from 👍

User
Posted 08 Aug 2023 at 21:49

Elaine,

Thanks for the clarification. Cheers!

User
Posted 10 Aug 2023 at 22:15

Hi all thanks again for your continued support...it really is appreciated.

We actually live in the Netherlands but are English, we're being looked after by two hospitals, one of which is a university hospital with specialist prostate department. 

Since my last post, hubby has been given a zoladex implant, tomorrow we're off to the radiology team and next week we're doing the oncologist. I think I confused myself with regards to the tablets they have suggested...I thought they were chemo type tablets but it looks like they will be a combination of enzalutamide and abiraterone. Following the Stampede protocol which I think was a clinical trial. Then radiotherapy. 

About the sternum, I believe they said it was in the bone of the sternum but I'll ask them to clarify that when we see them next week. 

That's the update so far, thanks again, Su xx

User
Posted 11 Aug 2023 at 07:41
Hi again ! My hubby was on the stampede trial (arm j) involving both these drugs ,his results were fantastic but he lost all strength and was tired . Last October he was asked to stop the abi after being on it for 6.5 years as data had shown there was not much difference to just having one or the other but the toxicity of both was causing the side effects.Since stopping Abi he has regained some of his strength and also generally feels more alert .His PSA has still continued to be undetected.

Hope this helps

Debby

 
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