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User
Posted 06 Oct 2023 at 17:06

Hi , recently diagnosed with PSA level of 72.4 and grading of T4 N1 M1 , however doctors have stated “it’s very very treatable with a 5 year Survival rate of 100%” so feeling optimistic of making the 5 and positive about a further 5 after that, taking me to 79 years of age, probably a good chance of making it into my eighties so getting on with things the best I can and mindful that a lot of you got this disease at a much younger age than mine so grateful for the 69 years and those that will follow.

Side effects of Hormone treatment are the Hot flushes as often as every 40 minutes they only last for less than a minute so pretty much I stop what I was doing and wait for the flush to pass.

Ive also got the joint pain and fatigue, but to be honest a lot of that is probably age related and not as a result of my cancer.

cancer has spread to my pelvis area (bones) and a local lymph node.

Trying to be cheerful ,particularly as I’ve family that are at least affected by it as much as I am, I’ve got round to telling most of my friends now, but generally  due to the upset it causes them ,I’m either not telling them or playing it down.

Would love to chat and share experiences with those of you in a similar position , and hopefully cheer any of you up that are struggling to cope, I’m getting my biopsy results next week , (12th October) hard to see what new news that will bring, given that it’s already confirmed as T4 , doctor after taking the biopsy hinted that treatment would remain as Hormone therapy with no additional chemotherapy, I’m guessing that’s because their plan is to control it rather than eradicate it?

Edited by member 06 Oct 2023 at 21:32  | Reason: Spelling mistakes

User
Posted 06 Oct 2023 at 17:06

Hi , recently diagnosed with PSA level of 72.4 and grading of T4 N1 M1 , however doctors have stated “it’s very very treatable with a 5 year Survival rate of 100%” so feeling optimistic of making the 5 and positive about a further 5 after that, taking me to 79 years of age, probably a good chance of making it into my eighties so getting on with things the best I can and mindful that a lot of you got this disease at a much younger age than mine so grateful for the 69 years and those that will follow.

Side effects of Hormone treatment are the Hot flushes as often as every 40 minutes they only last for less than a minute so pretty much I stop what I was doing and wait for the flush to pass.

Ive also got the joint pain and fatigue, but to be honest a lot of that is probably age related and not as a result of my cancer.

cancer has spread to my pelvis area (bones) and a local lymph node.

Trying to be cheerful ,particularly as I’ve family that are at least affected by it as much as I am, I’ve got round to telling most of my friends now, but generally  due to the upset it causes them ,I’m either not telling them or playing it down.

Would love to chat and share experiences with those of you in a similar position , and hopefully cheer any of you up that are struggling to cope, I’m getting my biopsy results next week , (12th October) hard to see what new news that will bring, given that it’s already confirmed as T4 , doctor after taking the biopsy hinted that treatment would remain as Hormone therapy with no additional chemotherapy, I’m guessing that’s because their plan is to control it rather than eradicate it?

Edited by member 06 Oct 2023 at 21:32  | Reason: Spelling mistakes

User
Posted 06 Oct 2023 at 18:01
Hi Bob, welcome to the forum. With the spread like me your cancer is treatable but not curable so you will probably be on HT for life to keep the disease under control.

Your positivity does you proud, that's half the battle dealing with this. Pretty impressive prognosis as well, I was given 2 years which at the time was a tremendous shock but you just keep going.

My treatment was HT, Chemo and Radiotherapy, Oncologists vary in treatment paths.

Good luck with your ongoing treatment.

User
Posted 07 Oct 2023 at 15:32

Wiosal

Second guessing the consultants is always a difficult one , it’s not personal to them and by the very nature of their jobs they are serious folk , we really have no choice but to trust their judgement and try not to read to much into the whys and where for’s of their actions , T4 is incurable but still treatable , obviously they adopt a different approach and for my part I think (don’t know) that my treatment is possibly less severe given that they are not looking at a cure but instead containment , I wish you well , given the T4 the nodes may be irrelevant? (Again guess work on my part )  and consultant is just looking at prolonging life 

User
Posted 12 Oct 2023 at 20:18

Hi , bit of an update had a review today to discuss recent biopsy results were Gleason level of 7 (4+3) but a Cambridge score of 5 , it’s seems cancer is widespread throughout bones , pelvis,spine , ribs, neck , nasty scan showing black dots everywhere , outlook described as 49% 5 year survival ,so all a bit of a shock given that last month they were talking about 5 year survival 100%. , I’m trying to understand results as whilst it’s widespread it’s only in bones so not sure that deserves a Cambridge score of 5 which is the one that drops my mortality down to 49% , any thoughts from the community ? Obviously my aim is to be in the 49% that survives 

User
Posted 12 Oct 2023 at 21:26

Derek 

hi thanks for the vitamin E recommendation , the joint pain seems to of gone , I mentioned it to todays doctors and he was dismissive of it and has instead prescribed me vitamin D and something else the name of which I didn’t catch , he did say the vitamin E wouldn’t hurt but I should eat cabbage (ugh) and pomegranate , plus lose weigh , I probably shouldn’t of but I patted him on his ample belly when he said that. The cancer research society website says the Cambridge scale doesn’t apply if the cancer has already spread , I think the thing to do is get the PSA level down and I’ll be ok , I hope you are ok and dealing with your own issues 

User
Posted 20 Oct 2023 at 13:27

Hi all , I hope you are all progressing well with your treatment ? I just wanted to share some positive good news.

I had my 3 monthly PSA blood test yesterday and my results have come back as 0.51 (down from 74.2) 

im very pleased with this latest news I’ve an appointment on the 7th November to discuss on-going treatment 

User
Posted 20 Oct 2023 at 13:50

Originally Posted by: Online Community Member

I’ve an outside light that show how is now hanging from the wall by its wires and needs my attention 

Hi Bob.

You're obviously a very capable DIYer.  I'm useless, even pricked my finger injecting Invicorp. Ended up aimlessly pointing for two hours. 😉

Joking apart, I'm thrilled you've got good news.

Best of luck mate.

Edited by member 20 Oct 2023 at 14:20  | Reason: Not specified

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User
Posted 06 Oct 2023 at 18:01
Hi Bob, welcome to the forum. With the spread like me your cancer is treatable but not curable so you will probably be on HT for life to keep the disease under control.

Your positivity does you proud, that's half the battle dealing with this. Pretty impressive prognosis as well, I was given 2 years which at the time was a tremendous shock but you just keep going.

My treatment was HT, Chemo and Radiotherapy, Oncologists vary in treatment paths.

Good luck with your ongoing treatment.

User
Posted 06 Oct 2023 at 18:08

Hi Bob,

I’m T3BN0M0 with PSA 36 so not as severe as you. I’d be interested to know how long you've been on HT and did the joint pain start after taking it? As for the hot flushes, I found that taking Vitamin E really helped with them…I was recommended it for ED and Peyronie’s disease side effects but it has certainly helped with my flushes.

Ive found it best to be open about it, mind you I only became like this after joining a Maggies support group. You’ll probably get the ‘But you’re looking so well’ and ‘I know someone who’s had it and they’re fine now’ from people but you learn just to accept that and smile.

Good luck with your journey, this is a great place to be for info and support.

Derek

User
Posted 06 Oct 2023 at 20:03

Jasper

Wow… 2 years that would be tough to handle my “promised” 5 years does at least allow me to put the dark thoughts on the back burner , Yes I realise it’s treatment for life but it’s a lot better than the alternative , best of luck with your on-going treatment hopefully now you are past your initial 2 years your outlook has improved

Bob 

User
Posted 06 Oct 2023 at 20:08

Derek

They started me on HT on the day of my diagnosis so 25/7/23 , Hot Flushes started that evening , The joint pains a tough one , I’ve replumbed my shower , a lot of work in the loft , plus I’m nursing my wife following her hip operation so joint pain could be related to that , whilst I’m caring for my wife it’s going to be difficult to get any respite but hopefully the joint pain will be manageable. 

thanks for the advice regarding vitamin E I’ll get some tomorrow.

I'm lucky enough to have some really good friends some of whom do say you’ll be fine , my mate had it and he’s ok , when I’m feeling low I just remember the doctors words “very very treatable 5 years 100%” so I’ll run with that 

Bob 

Edited by member 06 Oct 2023 at 20:20  | Reason: Missed full scope

User
Posted 07 Oct 2023 at 07:39

Great attitude Bob, it’s so important to stay positive!
Let me know how you get on with vitamin E as I’m desperate to know whether it was just chance with me. It might be better to check with your CNS if it’s ok for you to take Vitamin  E as at is suppose to improve blood flow, which is why it was given to me for my ED and Peyronie’s.

Derek

User
Posted 07 Oct 2023 at 10:32

I am reading these posts with interest. I am finding dh’s consultant quite unhelpful. He just plays it all down. In brief dh had brachytherapy 9 years ago (Gleason 6 psa 3.7) after a year or so psa was 0.01 where it stayed 4 years. Then started to increase. Consultant said we had to wait until it was 2.1 Even the jump from 1.6 up to 2.0 he still said wait. 3 months later psa 2.9 so mri done. Nothing showed. Next a Psma scan done, this showed no cancer in the prostate. But it is in nodes high up in his tummy. PSA now 4.9. All the consultant said, via a telephone consultation, was that dh to go on zoladex (plus casodex 4 weeks) He asked how old dh’s parents were when they died and said “oh, you’ll be around for years yet” he hasn’t told us any long term plan. The letter he wrote to the gp didn’t say anything other than “due to psa doubling time of 3 months please give 3 monthly injections ongoing” The gp knew nothing of it being in the nodes. 
Everything I have read says once in the nodes it’s stage 4 and untreatable. Dh says I must be wrong as the consultant would have said more. So I feel a bit confused really. How did it get into his nodes if it isn’t in the prostate? It apparently wasn’t in the nodes when he had brachy. I understand it can be missed in the nodes, but why was his psa 0.01 for 4 years if it were in the nodes? 
DH doesn’t think he’s on hormone therapy for long. But I am assuming as no other treatment offered, he is on them until they stop working. DH is fit and well. No symptoms apart from a bad back, which he’s had many years. He was convinced they’d find cancer in his back, but if it is then it wasn’t on the scan. He retired from farming a few years ago, we have 3 children, with the youngest being 14. We haven’t told them the news yet. Next telephone consultation is in November I have so many questions to ask. Whether or not I’ll be able to, I don’t know. Dh says the last consultation was rushed through. No time for questions. 

The comment about dh’s parents was a silly one. Dh’s father was almost 30 years older than dh is now. I can’t see with this diagnosis he’ll make that age! 

User
Posted 07 Oct 2023 at 15:23

Derek

 

Hi , Ive started vitamin E today , I’m seeing consultant on Thursday so will mention to him what I’m doing , I’ll update you in a week or so and let you know if I’ve noticed any improvement. 

User
Posted 07 Oct 2023 at 15:32

Wiosal

Second guessing the consultants is always a difficult one , it’s not personal to them and by the very nature of their jobs they are serious folk , we really have no choice but to trust their judgement and try not to read to much into the whys and where for’s of their actions , T4 is incurable but still treatable , obviously they adopt a different approach and for my part I think (don’t know) that my treatment is possibly less severe given that they are not looking at a cure but instead containment , I wish you well , given the T4 the nodes may be irrelevant? (Again guess work on my part )  and consultant is just looking at prolonging life 

User
Posted 12 Oct 2023 at 20:18

Hi , bit of an update had a review today to discuss recent biopsy results were Gleason level of 7 (4+3) but a Cambridge score of 5 , it’s seems cancer is widespread throughout bones , pelvis,spine , ribs, neck , nasty scan showing black dots everywhere , outlook described as 49% 5 year survival ,so all a bit of a shock given that last month they were talking about 5 year survival 100%. , I’m trying to understand results as whilst it’s widespread it’s only in bones so not sure that deserves a Cambridge score of 5 which is the one that drops my mortality down to 49% , any thoughts from the community ? Obviously my aim is to be in the 49% that survives 

User
Posted 12 Oct 2023 at 20:43

Hi bob 475,

I'm sorry to hear your bad news.  Unfortunately, I can't answer your specific questions, but I'm sure some other contributors will be able to help.

Best wishes going forward.

JedSee.

User
Posted 12 Oct 2023 at 20:51

Thanks Jed , I’ve seen other comments on this site where different consultants have different views so hopefully todays one was just over pessimistic 

User
Posted 12 Oct 2023 at 20:53

Hi Bob,

Im so sorry to hear your news Bob, it must have come as a real shock. However you sound like a strong and positive guy and I think that is so important in getting through this.

Hopefully the Vitamin E will help with your flushes.

all the best,

Derek

User
Posted 12 Oct 2023 at 21:26

Derek 

hi thanks for the vitamin E recommendation , the joint pain seems to of gone , I mentioned it to todays doctors and he was dismissive of it and has instead prescribed me vitamin D and something else the name of which I didn’t catch , he did say the vitamin E wouldn’t hurt but I should eat cabbage (ugh) and pomegranate , plus lose weigh , I probably shouldn’t of but I patted him on his ample belly when he said that. The cancer research society website says the Cambridge scale doesn’t apply if the cancer has already spread , I think the thing to do is get the PSA level down and I’ll be ok , I hope you are ok and dealing with your own issues 

User
Posted 13 Oct 2023 at 14:06
Hi again Bob. Really sorry to read your latest update. I've been taking Vitamin D tablets and Pomi T for about 3 years now following advice on here.

My Onco said the Pomi T is akin to closing the stable door after the horse has bolted but it's become a superstitious habit.

Was it John Lennon who sang "whatever gets you through the night, it's alright, it's alright."

I had a bit of joint pain particularly in my fingers in the early days of HT , the turmeric in the Pomi T seemed to sort that out.

Good luck with your treatment path.

User
Posted 13 Oct 2023 at 14:50

Thanks again Jasper for taking the time to reply a fair bit of pain from pelvis today so taking it easy , hopefully back to some activity tomorrow, I’ve an outside light that show how is now hanging from the wall by its wires and needs my attention , trying to stay focused, I’ve still a few years even in worse case so best to enjoy them .  I hope your own journey is going as well as you can hope for and you are in relative health

User
Posted 20 Oct 2023 at 13:27

Hi all , I hope you are all progressing well with your treatment ? I just wanted to share some positive good news.

I had my 3 monthly PSA blood test yesterday and my results have come back as 0.51 (down from 74.2) 

im very pleased with this latest news I’ve an appointment on the 7th November to discuss on-going treatment 

User
Posted 20 Oct 2023 at 13:50

Originally Posted by: Online Community Member

I’ve an outside light that show how is now hanging from the wall by its wires and needs my attention 

Hi Bob.

You're obviously a very capable DIYer.  I'm useless, even pricked my finger injecting Invicorp. Ended up aimlessly pointing for two hours. 😉

Joking apart, I'm thrilled you've got good news.

Best of luck mate.

Edited by member 20 Oct 2023 at 14:20  | Reason: Not specified

 
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