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resurgent cancer

User
Posted 25 Mar 2026 at 16:48

Hello, I am revisiting this group after about 15 years.
Diagnosed January 2009 Stage 2 PSA 7, Gleeson 3 + 4. Told I would live a decade without treatment but that soon it would be incurable. RLP Operation May 2009. PSA now 0.04. August 2010: Still using incontinence pads. August 2011. PSA 0.04. Told I am considered cured. Still using incontinence pads. 4 years after op, PSA started slowly rising with a doubling time of 3 to 4 years. On reaching 2.4, this year 2026, I was PET scanned. I have cancer in 4 lymph nodes, and this is stage 4 metastases, but not as bad as visible spread beyond lymph nodes. So I will need lifelong hormone treatment but I have been told I will not die prostate cancer. A big shock as I thought I would be ok without treatment for a few years. Also the possible side effects are a big shock, as I had really only been aware of loss of body hair and breast growth, which both seemed a small price to pay for a life saver.
So despite doing a lot of reading and research on the internet I feel a bit naive.

I am not downhearted (yet). Hiking and real ale are my main hobbies and if I can keep them up I will be happy enough, although I know I may need to cut back a bit on the ale.

I had no idea that spread could occur at a PSA of 2, I thought it would need to be10 upwards before I needed treatment.

I have been on hormone for a week and few side effects. I am a keen hiker, and I walk about 40 miles a week. I have started Nordic walking to try maintain upper body muscle mass which helps with bone strength. 

I would be interested to hear comments from people in a similar position.

User
Posted 25 Mar 2026 at 16:48

Hello, I am revisiting this group after about 15 years.
Diagnosed January 2009 Stage 2 PSA 7, Gleeson 3 + 4. Told I would live a decade without treatment but that soon it would be incurable. RLP Operation May 2009. PSA now 0.04. August 2010: Still using incontinence pads. August 2011. PSA 0.04. Told I am considered cured. Still using incontinence pads. 4 years after op, PSA started slowly rising with a doubling time of 3 to 4 years. On reaching 2.4, this year 2026, I was PET scanned. I have cancer in 4 lymph nodes, and this is stage 4 metastases, but not as bad as visible spread beyond lymph nodes. So I will need lifelong hormone treatment but I have been told I will not die prostate cancer. A big shock as I thought I would be ok without treatment for a few years. Also the possible side effects are a big shock, as I had really only been aware of loss of body hair and breast growth, which both seemed a small price to pay for a life saver.
So despite doing a lot of reading and research on the internet I feel a bit naive.

I am not downhearted (yet). Hiking and real ale are my main hobbies and if I can keep them up I will be happy enough, although I know I may need to cut back a bit on the ale.

I had no idea that spread could occur at a PSA of 2, I thought it would need to be10 upwards before I needed treatment.

I have been on hormone for a week and few side effects. I am a keen hiker, and I walk about 40 miles a week. I have started Nordic walking to try maintain upper body muscle mass which helps with bone strength. 

I would be interested to hear comments from people in a similar position.

User
Posted 20 Jul 2026 at 23:43

As regards your PCa spread, it seems this is presently being restrained by HT and if needed at some time there are other systemic options you might consider. So it seems PCa might not kill you for years yet, if at all. Nevertheless, continue with the monitoring as PCa can surge at any point. It is unpredictable and sometimes this can be many years on, as in your case. As this happens, the PSA usually rises but in a small number of cases the rise does not reflect spread. Doctor Eugene Kwon of Mayo Clinic in the USA, showed slides of some men who had recurrance after primary treatment but had a zero PSA. -his brilliant Lecture here after the first introductory remarks, https://www.youtube.com/watch?v=60P98QLWf70.

I also have IBS. Most of the time stools are normal but sometimes they can be very hard and difficult to pass. In my case this happens randomly but probably averages out at about once a month, although can spread over one to three days. GP says it's at least partly due to the fact I don't drink enough water. Then I sometimes get diarrhea very badly so have to make many visits to the bathroom. I probably drink less than I should because I have to empty my bladder frequently and often urgently, so I am not incontinent. As regards passing compacted stools, I have found a Japanese type Bidet/Toilet helps greatly. The heated seat coupled with heated water sprayed on the rectum expands the organ and lubcricates thereby helping the stool pass out. Over two years, this has worked nearly always first time but on about five occasions I have needed to repeat the cycle again and on two occasions a further cycle. I have the all in one unit which is not cheap but because I have IBS, there was no VAT. A total flush (which is pumped), uses only between two and two and a half litres of water and less toilet paper is needed. So would also help people who suffer from constipation.

Finally, on the subject of Plantar Fasciitis, I suffered very badly with this many years ago. It took ages to get back to normal wearing orthotics and having painful cortisone injections into my heels. I had a recurrence about four years ago, had pain killers, antiinflamitaries, rested but did exercises one can find on Google. This second time it only lasted for about three months.

Hope at least some of this is of interest to you.

Edited by member 20 Jul 2026 at 23:46  | Reason: to highlight link

Barry
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User
Posted 25 Mar 2026 at 23:06
Hi Raymond, sorry to be welcoming you back to this site but I think you will get a lot of helpful advice here. Some of the gents on here were able to SABR to irradiate up to four lymph nodes. Can you speak with your physicians about that? My husband was on HT for a couple of years and he was and is still walking >40 miles/week. Not all at once, but split into the mornings and evenings. It's more than he was walking before the diagnosis. Hope that provides some encouragement. All the best.
User
Posted 26 Mar 2026 at 10:16
Why were you not picked up at 0.2 as a recurrence? It seems strange it was left until 2 to do anything? This assumes you had a prostatectomy rather than radiotherapy as your bio is not clear.
User
Posted 08 Apr 2026 at 20:34
Thanks all

Francij1: Yes, I had a prostatectomy. I was picked up at 0.08 after 3 years and radiation was suggested. As I had IBS and bad incontinence I decided, after speaking to radiation specialist, that I would wait and see. I did not want to be demobilised by a worsneing of the 2 conditions.

The PSA rose very slowly, 4 year doubling time, and I expected to need treatment at about PSA 10 plus, which would have been a few years from now. I did not realise it could go pear shaped at only 2.0,

Still I have had 14 years hormone free life and they think I will be OK for quite a few years, probably dying of something else.

User
Posted 08 Apr 2026 at 23:45

 

 

 

Edited by member 09 Jul 2026 at 04:18  | Reason: Not specified

User
Posted 09 Apr 2026 at 20:52
In my UK hospital area they treat up to 3 nodes. My affected nodes are external iliac and inguinal nodes. 2 strongly affected and 2 affected. They say this shows cells will be around my body so they say radiation would not help.

Nothing in prostate bed which I find odd.

As my doubling time is around 4 years and PSA 2, I do not feel unduly threatened and I am hoping for a treatment holiday within a couple of years. I am 79 and in good health but I expect to die of something else before the prostate cancer is untreatable.

But it is all guesswork

Am I being unduly optimistic ?

User
Posted 10 Apr 2026 at 03:10

 

 

 

Edited by member 09 Jul 2026 at 04:17  | Reason: Not specified

User
Posted 20 Jul 2026 at 19:43

an update. After treatment started my PSA fell from 2.24 to 0.03 very quickly and within 3 months is 0.02. I am coping with to flushes and fatigue and go my blood pressure back under control

I am  a very keen hiker but I now have plantar fasciitis and can hardly walk. But androgen deprivation can make it worse and difficult to treat. I cannot blame it all on the treatment, but it seems it might be a factor

Has anyone had this problem? was it sorted?

User
Posted 20 Jul 2026 at 23:43

As regards your PCa spread, it seems this is presently being restrained by HT and if needed at some time there are other systemic options you might consider. So it seems PCa might not kill you for years yet, if at all. Nevertheless, continue with the monitoring as PCa can surge at any point. It is unpredictable and sometimes this can be many years on, as in your case. As this happens, the PSA usually rises but in a small number of cases the rise does not reflect spread. Doctor Eugene Kwon of Mayo Clinic in the USA, showed slides of some men who had recurrance after primary treatment but had a zero PSA. -his brilliant Lecture here after the first introductory remarks, https://www.youtube.com/watch?v=60P98QLWf70.

I also have IBS. Most of the time stools are normal but sometimes they can be very hard and difficult to pass. In my case this happens randomly but probably averages out at about once a month, although can spread over one to three days. GP says it's at least partly due to the fact I don't drink enough water. Then I sometimes get diarrhea very badly so have to make many visits to the bathroom. I probably drink less than I should because I have to empty my bladder frequently and often urgently, so I am not incontinent. As regards passing compacted stools, I have found a Japanese type Bidet/Toilet helps greatly. The heated seat coupled with heated water sprayed on the rectum expands the organ and lubcricates thereby helping the stool pass out. Over two years, this has worked nearly always first time but on about five occasions I have needed to repeat the cycle again and on two occasions a further cycle. I have the all in one unit which is not cheap but because I have IBS, there was no VAT. A total flush (which is pumped), uses only between two and two and a half litres of water and less toilet paper is needed. So would also help people who suffer from constipation.

Finally, on the subject of Plantar Fasciitis, I suffered very badly with this many years ago. It took ages to get back to normal wearing orthotics and having painful cortisone injections into my heels. I had a recurrence about four years ago, had pain killers, antiinflamitaries, rested but did exercises one can find on Google. This second time it only lasted for about three months.

Hope at least some of this is of interest to you.

Edited by member 20 Jul 2026 at 23:46  | Reason: to highlight link

Barry
User
Posted 25 Jul 2026 at 22:11

My husband died despite low PSA levels. It had gone to his liver. Get scans not PSA tests

User
Posted 26 Jul 2026 at 03:46

I’m on my 30th cumulative month of ADT; total elapsed time since diagnosis 50-51 months 

I’m 15-20% overweight. ADT is probably worth half of that. Tonight I walked 7.5 miles and it’s not like the old days. Overweight and losing muscle. 

As for plantar fasciitis - I had it in 2014 and it was a bear to shake. Ironically lots of walking helped. The DIY treatment that really made a difference was filling a 20 oz soda bottle with water and freezing it - then rolling my bad foot forward and backward over the frozen bottle. 

But the BEST acquisition I made was a plantar fasciitis night brace. A Velcro gadget that keeps your foot and a 90 degree angle at night. So ice, brace, and walking were the big 3 fixes. 

Gentle toe stretches also helped. 

I said it took a year but that was for pain to completely go away. I was much better 2-3  months after onset with pain isolated to mornings when I’d have forgotten to wear the brace overnight. After 2-3 months it was rare for me to wince or limp when walking but I knew I wasn’t out of the woods. 

User
Posted 26 Jul 2026 at 07:42

My husband died despite low PSA levels. It had gone to his liver. Get scans not PSA tests

My condolences for your loss ...

I do not know the details of your case but you make an important point -  PSMA-PET scans should be used to monitor the situation as well as PSA readings ...

Courage

Crispin

 
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