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PSA 5000+

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User
Posted 04 Oct 2022 at 23:56

Not sure if it is helpful but I was diagnosed with stage 4 prostate cancer Aug 2016 with a PSA Reading of 5000+ subsequent scans showed that the cancer had spread to ribs, lungs, shoulders, and a lot of places in between.  Had Chemo and then on 3monthly Prostap injections.

I am OK. Can do 5 to 8 km walking max. Frustrating as I was a Party Leader in Mountain Rescue and easily did 30km with heavy loads up until a few months before I was diagnosed.  

My GP is somewhat amazed, I guess I am a bit of an outlier as far as the survival stats go.  Always been fit and never over weight so I guess that helped.

Now 6+ years since diagnosed after being rushed into hospital with really bad pain in spine and shoulder.   Vertebrae are a bit beaten up by the cancer but OK otherwise. Deep hot bath is magic, oromorph if that doesn't work. 

Fed up with hot flushes. Have to wear cardigans or jackets and not pullovers. Luckily not getting boobs but male pattern baldness in advance stage is showing signs of defeat.

No one would tell me at the start how long I had. But consultant winched when I asked if worth getting a 5 Yr diary!   So spent first year getting all my things sorted. Put together handbooks for everything in our lives as in house, pension, finances, etc for my wife.  The resultant organisation impressed the hell out of me and managed to keep it going. Moved to a flat next to the sea. Any closer and it would be called a boat (10m from high tide line and 20m above) 

No idea how long I have. PSA Tests every 4 months now and still undetectable.

Anyhow I thought it worth mentioning that even if you have a psa >5000 and your consultant has gone pale and polite it might not be all that bad

Ian

 

User
Posted 04 Oct 2022 at 23:56

Not sure if it is helpful but I was diagnosed with stage 4 prostate cancer Aug 2016 with a PSA Reading of 5000+ subsequent scans showed that the cancer had spread to ribs, lungs, shoulders, and a lot of places in between.  Had Chemo and then on 3monthly Prostap injections.

I am OK. Can do 5 to 8 km walking max. Frustrating as I was a Party Leader in Mountain Rescue and easily did 30km with heavy loads up until a few months before I was diagnosed.  

My GP is somewhat amazed, I guess I am a bit of an outlier as far as the survival stats go.  Always been fit and never over weight so I guess that helped.

Now 6+ years since diagnosed after being rushed into hospital with really bad pain in spine and shoulder.   Vertebrae are a bit beaten up by the cancer but OK otherwise. Deep hot bath is magic, oromorph if that doesn't work. 

Fed up with hot flushes. Have to wear cardigans or jackets and not pullovers. Luckily not getting boobs but male pattern baldness in advance stage is showing signs of defeat.

No one would tell me at the start how long I had. But consultant winched when I asked if worth getting a 5 Yr diary!   So spent first year getting all my things sorted. Put together handbooks for everything in our lives as in house, pension, finances, etc for my wife.  The resultant organisation impressed the hell out of me and managed to keep it going. Moved to a flat next to the sea. Any closer and it would be called a boat (10m from high tide line and 20m above) 

No idea how long I have. PSA Tests every 4 months now and still undetectable.

Anyhow I thought it worth mentioning that even if you have a psa >5000 and your consultant has gone pale and polite it might not be all that bad

Ian

 

User
Posted 05 Oct 2022 at 05:30
Good news story thanks! So the cancer is still in remission and the hospital admission was unrelated? Just old damage?
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User
Posted 05 Oct 2022 at 05:30
Good news story thanks! So the cancer is still in remission and the hospital admission was unrelated? Just old damage?
User
Posted 05 Oct 2022 at 06:11

Fantastic post long may it continue good luck gaz 👍

User
Posted 05 Oct 2022 at 10:21

The hospital admission was because of the cancer and the damage it had done.  I originally thought that I had pulled a muscle in my shoulder so for 8 months was rabbiting on to my GP and Physio about "pulling a muscle".  I didnt think about mechanism of injury and so we all went up the wrong garden path.  With hindsight having physio on damaged vertebrae is not the best idea going which explained why I always came away feeling worse than when I went in.   I had none of the other typical symptoms.  Plenty of times I have stood at a public urinal reading the public information notice about prostate cancer in front of me!  Just what turned out to be referred pain in my shoulder which I decided was due to either carrying stretchers off a mountain or climbing ropes with a load.

 

User
Posted 05 Oct 2022 at 10:36

Flippantly:

Wow Ian, you've been lurking on the forum for six years, and now your first post casually reveals you have found the elixir of life. Moving that close to the sea gives you a chance to worry about rising sea levels, not many cancer patients need worry about that.

Seriously:

That is one of the best posts I have read on this forum. We know the treatments will have impacted your quality of life, and your future is as uncertain as anyone's, but to have survived this long after being given a death sentence is inspiring.

 

Dave

User
Posted 05 Oct 2022 at 14:07

Great post, thanks for sharing.

Ido4

User
Posted 05 Oct 2022 at 14:33
6 years with that diagnosis. You're a walking miracle, well done you.

Do you manage to get holiday insurance, I'm still drawing blanks unless I'm prepared to pay four figures which is against my religion.

Keep going fella.

User
Posted 05 Oct 2022 at 16:51

Jasper - the site will not let me reply as I haven't posted enough.  But yes I have been on Prostap for most of the 6 years.  I only get a sore arm from it. In fact I had a 3 monthly jab this morning.  Havent spoken to my Consultant for 5 years, I just speak with the Specialist Nurse who has changed the regular consultation to 4 monthly which I have tomorrow.  Of course having now posted after 6 years that 5000+ isnt the end of the world I am pushing my luck with what the Nurse says tomorrow about my PSA test.  Its been undetectable from about 6 months after chemo so it would be my luck for them to find some.

Havent travelled overseas since getting the cancer so dont know about travel insurance.  Luckily my wife and I had travelled a lot before and I had been to 70+ countries on holiday and work. I am in my 70's. Yikes that sounds old when written down.  Anyhow we had done most of the big treks and I had done a 8000m mountain plus some 6K and 7K ones so we didnt really miss not travelling because of my cancer.

I really miss not being able to go out onto the mountains.  But I leave that up to my friends to tell me about.

 

 

User
Posted 05 Oct 2022 at 18:40
Great news story ,that’s the second one I’ve heard in the last couple of days ! Here’s hoping the treatment continues to keep it at bay .

Best wishes

Debby

User
Posted 07 Oct 2022 at 08:40

Ian, wow! what a great post to read, gives us all hope. Thank you for taking the time out to share your story. Best wishes x

User
Posted 07 Oct 2022 at 09:40

Brilliant post with an equally brilliant attitude to life. Inspiring stuff Ian. Keep going mate.

Warm wishes

Jamie

 

 

User
Posted 07 Oct 2022 at 17:39

Wow its great to read such a positive outcome from your treatment

For me next month will be 10 years since my dx. PSA slowly creeping up now and incurable but no further treatment required yet

Bri

Edited by member 07 Oct 2022 at 17:40  | Reason: Not specified

User
Posted 07 Oct 2022 at 20:01
Hi Ian,

Unbelievable and wishing that your PSA readings continue to be negligible for a long time yet. Let us know what the latest reading is when you get it.

I'm waiting for my latest reading end of next week but my PSA appears to have got stuck in early 40's after nearly 2 years treatment. I'm still managing reasonably well at present and similarly have a nice cardigan now rather than pullovers - so much easier to get on and off with the frequent hot flushes. I also struggle to stay awake in the afternoons but still manage to get out chasing our 3 year old grandson a few days a week.

Most postings appear to be from members whose PSA has got down to single figures and often negligible. Do not find many references where the PSA reduces drastically but stays quite high.

Take care

Bernard

Bernard

Hope for the best but expect the worst.

User
Posted 07 Oct 2022 at 21:30

Well that teaches me to open my mouth after 6 years silence. PSA is 0.1 instead of undetectable. Specialist nurse is not worried. Nor would I be if it wasn't my PSA.  Anyhow not to worry (apparently) it did that in 2017 (apparently) then went undetectable.  But checkup in 3 months now not 4 months.

Funny, I was starting to get suspicious since I found I needed to shave every day, my younger daughter said I wasn't as bald, she lives overseas so hadn't been back for a year, and i started to have randy thoughts.  For someone with typical male pattern baldness there was an up side to chemo that I didn't have to shave much and even after nearly 6 years I used to be able to get away with every other day.   

I told my wife it was only because I had the blood test the day before my Prostap jab so the last dose would have been used up so its just timing and nothing significant.  It sounded believable.  Hopefully.  I am a pretty optimistic person, I don't worry about things I can do nothing about.   So this doesn't really bother me.  But I am going to be seriously  ...... off if I die with a full head of hair. 

User
Posted 07 Oct 2022 at 22:18

Thanks for posting it's what we want to read.  What is undetectable for you, is it <0.1?  You're fortunate to not worry about what you can't control.   I hope it stabilises.   All the best Peter

User
Posted 08 Oct 2022 at 08:07

Still sounds undetectable to me. I would expect the specialists to say it was within the margin of error for the tests. That is why they always look for a continuing rise in PSA over at least 3 readings.

If I were getting that reading I certainly wouldn't think anything until it got nearer 2 and was still rising. Then I would start to think about what I would do for the next stage 

Good luck and enjoy not shaving every day. I find  that on the 3rd day I need to shave but I've not had any chemo yet, Xtandi instead.

Bernard

Bernard

Hope for the best but expect the worst.

User
Posted 14 Oct 2022 at 17:45

Wow Ian what a story and your attitude to your diagnosis is truly inspirational. My husbadn ( Mike) was diagnosed early this year with stage 4 ( advanced metatastic prostate cancer) with a Gleason score of 10. So you can imagine how devastated we were. Actually I was more upset, Mike is an extremely positive guy, very fit and healthy and sporty. Since his 4th chemotherapy session last week his PSA is down to 0.02 and Alkaline PHosphatase also done from 212Ul to 60. The nurses told us this was really good and of course I am so pleased and proud of Mike. He continues to play tennis three times a week and badminton once a week. Interestingly in the first month of his diagnosis he was convinced he didnt have long left so like you he put his house in order and was going at such a pace I had to slow him down. All is stable now and I do share these  positive stories from such inspirtaional men and women.  So thank you for sharing your story. It gives us all hope although I am aware every one reacts differently to treatments. Maud.

User
Posted 14 Oct 2022 at 21:22

Incredible story Ian. So wonderful of you to post too and provide hope to many men and families who come on this site. 

Long may this continue for you, wishing you the very best.

 
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