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How Long might we have?

User
Posted 23 Oct 2020 at 17:48

I am three years post diagnosis with metastatic PCa in my lymph nodes in my pelvic region.  I actually had a Robotic Radical Prostatectomy and that was followed by 6 monthly Decapeptyl and an initial course of Doxetaxel - the usual combination.  My PSA has remained undetectable at < 0.05.  I was not on Stampede but I follow contributors who were/are such as Merrivale and Healey.  It is good to read about these people who are now over 5 years since diagnosis and still enjoying life.


I have recently read some posts by people who have just been diagnosed and their despair is palpable and brings back my memories of my own initial shock following my 'incurable' diagnosis.  Despite the published "5 year survival rates" I read that some manage more than that and, indeed, there are examples of people surviving 10 years or more with metastatic disease.


Most contributors to this Forum  who have metastatic disease are less than 5 years post diagnosis and I wondered whether there were members who are over 5 years since diagnosis out there who might post about their experience - which may reassure newbies that they might have rather more time than they initially thought.  As I say,  I take heart from some of the Stampede guys even though I am not (yet) on either of the two 'wonder drugs' abi or ensue.

User
Posted 24 Oct 2020 at 20:38
Passed the 5 year mark last month.

Onwards

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 23 Oct 2020 at 17:48

I am three years post diagnosis with metastatic PCa in my lymph nodes in my pelvic region.  I actually had a Robotic Radical Prostatectomy and that was followed by 6 monthly Decapeptyl and an initial course of Doxetaxel - the usual combination.  My PSA has remained undetectable at < 0.05.  I was not on Stampede but I follow contributors who were/are such as Merrivale and Healey.  It is good to read about these people who are now over 5 years since diagnosis and still enjoying life.


I have recently read some posts by people who have just been diagnosed and their despair is palpable and brings back my memories of my own initial shock following my 'incurable' diagnosis.  Despite the published "5 year survival rates" I read that some manage more than that and, indeed, there are examples of people surviving 10 years or more with metastatic disease.


Most contributors to this Forum  who have metastatic disease are less than 5 years post diagnosis and I wondered whether there were members who are over 5 years since diagnosis out there who might post about their experience - which may reassure newbies that they might have rather more time than they initially thought.  As I say,  I take heart from some of the Stampede guys even though I am not (yet) on either of the two 'wonder drugs' abi or ensue.

User
Posted 23 Oct 2020 at 21:06

Click my picture and read my profile Nevis. I am 5 yrs and 4 months post surgery. I’m 53 now and have had no further treatment at all. Ok I’m not going to make 10 yrs but I’ve had full QOL for as long as possible. The swine about this disease is that I’ve never felt ill once really since diagnosis. The only thing that has made me ill is all the interactions and tests and scans and surgery. At surgery I was T4G9N1MxR1. So I guess in respect of that I’m extremely lucky to be this far down the road.
Best of luck

Edited by member 23 Oct 2020 at 21:56  | Reason: Not specified


If life gives you lemons , then make lemonade
User
Posted 23 Oct 2020 at 21:22

Thank you Chris.  I have just read about your brave treatment decisions.  As for me, I am currently finding that the HT is quite tolerable, with no side effects that are debilitating.  At nearly 75 I am trying to maintain my fitness by 30 minutes daily 'brisk walking' (as defined by the NHA App) and longer hikes a couple of times a week.  I eat sensibly and the rest is in the hands of the gods.  I am pleased to see you have made >5 Years, which puts you in the select group I am hoping to join!  Thanks.  


Alan

User
Posted 23 Oct 2020 at 21:46

Hi , I am 6 years post diagnosis on 6/11/2020. My bio says what matters, PSA 0.12 for the last year, still running every day , today day 305. Believe , never give up and make the most of every day .

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 23 Oct 2020 at 23:24

George was given 2-3 years in 2005 and is still going strong https://community.prostatecanceruk.org/default.aspx?g=profile&u=1195 


Top Gun was metastatic and gave it a good 14 year run https://community.prostatecanceruk.org/default.aspx?g=profile&u=3252


Devonmaid's husband John was diagnosed with a G10 with mets and most of his 10 years were good


Exbus - diagnosed in 2005, metastatic in 2006, chemo in 2007 and has made good use of IHT since - still with us 


Alathays - diagnosed in 2008 with extensive bone mets, given 5 years at most, lived life to the full and took every trial drug going - died in 2016 https://community.prostatecanceruk.org/default.aspx?g=profile&u=2673 

Edited by member 23 Oct 2020 at 23:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Oct 2020 at 15:21
You guys who survive more than 5 years with metastatic cancer are an inspiration to the rest of us fellow sufferers.
I remember the day my Oncologist told me I had about 2 years, real bolt from the blue, I was stunned. You just shake yourself down and get on with it.
Every day, week, month and year now are a bonus. Next milestone picking up my OAP in January.
George H is a walking miracle.

Keep on trucking fellas.

J x
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User
Posted 23 Oct 2020 at 21:06

Click my picture and read my profile Nevis. I am 5 yrs and 4 months post surgery. I’m 53 now and have had no further treatment at all. Ok I’m not going to make 10 yrs but I’ve had full QOL for as long as possible. The swine about this disease is that I’ve never felt ill once really since diagnosis. The only thing that has made me ill is all the interactions and tests and scans and surgery. At surgery I was T4G9N1MxR1. So I guess in respect of that I’m extremely lucky to be this far down the road.
Best of luck

Edited by member 23 Oct 2020 at 21:56  | Reason: Not specified


If life gives you lemons , then make lemonade
User
Posted 23 Oct 2020 at 21:22

Thank you Chris.  I have just read about your brave treatment decisions.  As for me, I am currently finding that the HT is quite tolerable, with no side effects that are debilitating.  At nearly 75 I am trying to maintain my fitness by 30 minutes daily 'brisk walking' (as defined by the NHA App) and longer hikes a couple of times a week.  I eat sensibly and the rest is in the hands of the gods.  I am pleased to see you have made >5 Years, which puts you in the select group I am hoping to join!  Thanks.  


Alan

User
Posted 23 Oct 2020 at 21:46

Hi , I am 6 years post diagnosis on 6/11/2020. My bio says what matters, PSA 0.12 for the last year, still running every day , today day 305. Believe , never give up and make the most of every day .

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 23 Oct 2020 at 22:06

I guess you have to look at your life as a whole , including age and general fitness. I admire Irun so much , but after 30 yrs of well paid but manual labour I can’t even run over the road. My knees are shot to pieces. If I went on HT I wouldn’t be able to exercise and hate swimming. Also with respect there is a great difference between being in your 50’s and 70’s. At the end of the day it comes down to the person and actually psa can mean nothing. One mans 1000 can be equal to another’s 10. I wish you luck and a good many more years

Edited by member 23 Oct 2020 at 22:09  | Reason: Not specified


If life gives you lemons , then make lemonade
User
Posted 23 Oct 2020 at 22:10
And you’ve had all the treatments and a really low psa. You’re good for 10 yrs :-))

If life gives you lemons , then make lemonade
User
Posted 23 Oct 2020 at 22:48

I do hope you are right about the ten years but my consultant oncologist is staying schtum on the matter!  I live in 3 monthly segments and am currently feeling relaxed because my next PSA Test is 7 December!  I take your point about being nearly 75 but honestly I don't feel any older than I did when I was in my 50s.  Like you, I admire Irun immensely but I never ever had that level of fitness and what you never had you don't miss, I guess!!  I did sedentary work and continued, part time until I was diagnosed and then called it a day at 71.  In fact despite the effects of the HT, I am probably fitter( although weaker) than I was when I was working 80 hour weeks and doing little exercise, just sailing on the weekends in the summer.

User
Posted 23 Oct 2020 at 23:24

George was given 2-3 years in 2005 and is still going strong https://community.prostatecanceruk.org/default.aspx?g=profile&u=1195 


Top Gun was metastatic and gave it a good 14 year run https://community.prostatecanceruk.org/default.aspx?g=profile&u=3252


Devonmaid's husband John was diagnosed with a G10 with mets and most of his 10 years were good


Exbus - diagnosed in 2005, metastatic in 2006, chemo in 2007 and has made good use of IHT since - still with us 


Alathays - diagnosed in 2008 with extensive bone mets, given 5 years at most, lived life to the full and took every trial drug going - died in 2016 https://community.prostatecanceruk.org/default.aspx?g=profile&u=2673 

Edited by member 23 Oct 2020 at 23:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Oct 2020 at 23:30

Thanks Kev! I will try to emulate your example , I really will.


Alan

User
Posted 24 Oct 2020 at 15:21
You guys who survive more than 5 years with metastatic cancer are an inspiration to the rest of us fellow sufferers.
I remember the day my Oncologist told me I had about 2 years, real bolt from the blue, I was stunned. You just shake yourself down and get on with it.
Every day, week, month and year now are a bonus. Next milestone picking up my OAP in January.
George H is a walking miracle.

Keep on trucking fellas.

J x
User
Posted 24 Oct 2020 at 16:17

My husband nearly made it to 10 years - he had 9.75 years. The last 4 months weren't good but up to March this year he was doing really well

User
Posted 24 Oct 2020 at 16:36

Thank you Gillyflower


Inspirational!  A sad outcome for you but one that reminds me that it is not particularly death that I fear but leaving my wife alone after 50+ years of marriage.  Her reaction is that is no big deal since she had always imagined she would go last on the basis of our different family medical histories - she has nobody in recent memory on either side of her family who died younger than 90 whereas I have nobody who has managed 80!  A very practical lady!  And she refuses to look at this Forum or learn complicated internet banking procedures on the grounds that there will be plenty of time for that!!  I hope she is right but thank you for your story.


Alan

User
Posted 24 Oct 2020 at 16:41

Thank you Lyn


 


Just sat down under a tree and read the various stories you highlighted.  I hope they help others as well as me.


Alan

User
Posted 24 Oct 2020 at 18:08
My mate Denty aged 83 was given six to twelve months to live with his advanced kidney cancer about a month ago.

We went to his wake this week.

If I was not an atheist I would say it’s in the lap of the gods, or inshallah.

Best of luck.

Cheers, John.
User
Posted 24 Oct 2020 at 20:38
Passed the 5 year mark last month.

Onwards

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 24 Oct 2020 at 21:18

Thanks Dave! Yes, I have been following your progress for a couple of years. I was nearly as disappointed as you probably were that your latest lutetium try wasn’t effective for a little longer! 

User
Posted 25 Oct 2020 at 06:24

Tony was 61 on diagnosis, he will be 76 next month, was told between 5 to 10 years at diagnosis.


 


barbara x


 

Edited by member 25 Oct 2020 at 11:32  | Reason: wrong age for diagnosis

User
Posted 25 Oct 2020 at 13:41
Hi Nevis , Gary is 5 years next month.similar diagnosis as you with lymph node involvement but went straight on to chemo .It’s such a scary time at the beginning,we’ve never asked about a time scale and don’t want to know ,I remember at the beginning being told that Gary qualified for free prescriptions,and when the exemption card came I cried because it was valid for five years and I thought he would be dead in a couple. But here we are 5 years later still a great quality of life and working full time .Don’t get me wrong life has changed but it’s our new norm .In that time we’ve welcomed 5 new grandchildren which breathes new life into you.
Gary’s still on stampede trial with bloods every 6 weeks and phone consultations every 3 months ,PSA 0.01 .
All the best for the future,just enjoy every moment .
Debby
User
Posted 25 Oct 2020 at 20:13

Thank you Barbara (aka Essex babe!!).  I was very heartened to read Tony's story so far!  May it long continue.  


I am delighted that my initial post has elicited so many 'good new stories' for guys, who may be in despair following a recent metastatic diagnosis, to read all in one place.  I know all our journeys are different and we can never tell how individuals will react to the different treatment options.  As financial advisers say, "Past share price performance is not a guide to future performance", these contributions have certainly given me more hope of having a little while longer.


 


Thank you.


Alan

User
Posted 25 Oct 2020 at 20:26

Hi Debby


Thank you.  Yes, I have been following your posts about Gary for some time, realising that the two of us are in a very similar boat - good nautical analogy since you live in Portsmouth and we live in Cowes!  


My PSMA PET CT scan (October 2017) showed multiple small bilateral common iliac and aorta cable and paraaortic lymph nodes extending proximally to the L3 level so RT was a non starter. Although not on Stampede, I am on a similar treatment path to Gary's . Following (unsuccessful) surgery, I was given an initial course of doxetaxel alongside HT, which continues.  Like you, we are also continuing to live a full and enjoyable life despite, morning noon and night, never actually being able to forget I have this damn disease and absolutely hating the three monthly blood tests!  


I am rooting for you!


Alan

User
Posted 26 Oct 2020 at 06:28
Alan ,I love the IOW . Gary often works in Cowes and other parts of the island as he is a barge master and drives piles and constructs pontoons and marinas around the country ,mainly the south coast now .
Keep a positive mind set which I think helps and keep active .
Best wishes
Debby
User
Posted 26 Oct 2020 at 13:59

Hi, I have the same ongoing question in my mind too. My husband diagnosed 16 months ago with advanced PCa spread to  local and distant lymph nodes.


He is 66 and to echo what Jasper said, wow, what a bolt from the blue!


We have settled from the shock now but are living in these 3 monthly segments, same as you. 


Glad you asked the questions as Lyn has given us some real life hope. And look at irun! 

Edited by member 26 Oct 2020 at 16:38  | Reason: Not specified

Mrs MAS

User
Posted 26 Oct 2020 at 17:44

Thank you Mrs MAS. Of course, I don’t want to know exactly ‘how long I’ve got’ but I, too, am heartened to hear from members of the “over 5 years and so going” club! Best wishes!

User
Posted 27 Oct 2020 at 21:26

Thanks Debby.  Well, I have obviously had good reason to thank Gary over many years as I have parked my boat in marinas in Cowes and elsewhere on the Island, not to mention all along the South coast, including in Gosport!   I will continue to follow your posts and Gary's experiences and treatments.  I pressed my consultant last year on 'next steps' when this current treatment fails and he said, "Probably abiraterone".  I thought knowing what comes next may help with the three monthly anxiety....but it doesn't!!

 
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