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 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

Hello Raymond,

A couple of questions if I may. You say the pet scan revealed 4 nodes but you did not say where the 4 nodes were. The pet scan would have also indicated avidity for each node. So we need to know where and how active the nodes are.

With 4 active nodes you are nearing the upper limit for stereotactic radiation (SABA) treatment of five. Why consider SABA with your IBS? Because once the precise node target is defined, the likelihood of damage to other structures is minute. Plus each effective treatment (normally five doses of 5gy) will prolong your lifespan by a year to even two, may be repeated in future, and the need for ADT may not be required.

Stereotactic Radiation for PCa mets is commonplace in Australia and has greatly improved the quality of life for men with stage 4 PCa.

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

Am I being unduly optimistic? I would suggest yes, but tempered with it being totally your call, coupled with the expert advice you are receiving. Whilst the circulating micro mets will eventually take root in other nodes, bones, and even visera (organs) as the disease reaches it's inevitable pathway, the micro met spread has been going on prior to your RP, hence the BCR developing somewhat early. But despite the active nodes that you now have, your immune system, assisted by ADT, has done a sterling job in mitigating PCa systemic progression thus far. Research and accepted clinical practice standards (I can only speak for Australia) tell's us that treating the active nodes will, reduce PCa spread, and promote longevity. Other factors of course, which are unique to each of us, also play a part in the decision making process. It all depends on your comfort zone perception. But we all know that time is not our friend and inevitability is beckoning.

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