PSA Undetectable, but for how long?

Hi Jnc - I can't comment on the PSA remaining low - however as I understand it on HT/RT after the RT has finishes your PSA should go down and you reach your nadir after 18 months. This reading then becomes your benchmark and should the PSA rise a whole 2 points above the benchmark reading then you need an examination and possibly further treatment.

I am sure someone will be along soon with confirmation of a long period being undetectable.

I hope this helps a little.

Best wishes - Brian.

Hi Jnc,

I can totally understand your fears as it must be extremely worrying to have an undetectable PSA.Im sorry I have no concise answers for you either, hopefully someone will share their story if it’s similar. I was wondering why you are not offered a scan after so many months as an alternative to check the situation as the consultant must have a rough idea of timelines? Like you  I’m trying to find answers all the time about this terrible cancer and I find myself repeatedly going round in circles trying to pinpoint when is it likely to come back and how can we prepare for it. I just don’t have that knowledge that I need, but I think in your situation I would be asking the consultant for more, what can they do as an alternative, can he have the appropriate scans to see how things are because you are in the dark and you need reassurance.
I hope you get some helpful answers as it’s a great question. 

Best wishes L

Hi Jnc.

In July 2020 my husband has a similar diagnosis to your husband except that he doesn't have bone metastases but does have a distant mass behind the pancreas with lymph node involvement. His is non secreting but is also classified as very rare and aggressive. There had been no sign of the masses 6months previous when he had his routine check up so they were very fast growing. His journey was slightly different in that he had gone down hill so fast that he was not well enough for chemotherapy initially but is in the middle of it now. He has been told that he will be on the Leuprorelin implants for life. Initial HT with Bicalutamide was quickly followed by 33 sessions of EBRT to the prostate and surrounding lymph nodes and all was well for 18 months, during which time he had 3 monthly MRIs. The radiotherapy worked well and so far has done it's job in that area. After 18 months the PSA started to rise from it's nadir and the MRI showed that the distant metastasis was growing so he was switched on to Enzalutamide. 3 monthly MRIs continued and showed that this treatment was effective at reducing the distant mets to a fibrous state. An MRI in May this year indicated increased distant lymph nodes and the PSA was beginning to go up. A PSMA PET scan indicated the 3 node involvement that we knew about but also micromets in additional lymph nodes. Everything else was clear. In July he started 6 rounds of docetaxel with the 5th round due next week. A CT and MRI after 3 sessions showed a 15 - 60% reduction in lymph node size, so it's working. He is continuing on Enzalutamide because this is still suppressing the distant met behind the pancreas. A debate is going on between the medical oncologist and the radio oncologist as to whether SBRT may be suitable to try and deal with the distant mets but we have been told that the decision will be made next Spring as he is responding so well to chemo at the moment.

As the cancer is non secreting we are relying on velocity of PSA increase rather than the normal waiting until a set number is reached as well as regular 3 monthly MRI scans. At the moment my husband is feeling better than he has for a long time and is looking forward to the end of the chemotherapy. I can empathize with you as there is always the lurking fear at each MRI and PSA test but have learnt to live each day as it comes. The reassurance is that emphasis is put on QOL and that our medical team is rooting for us on this journey. We have discussed that further treatment will be probable in the future. Rate of progression of this disease is individual. There are so many variables such as your husband's response to each form of treatment but also how he is handling it both physically and mentally. A positive attitude is essential as this enhances the bodies healing mechanism. Diet and exercise also work.

I hope that this gives you some insight and reassurance that treatment is possible and some QOL can be maintained, albeit in a different way from what we had originally planned. Please come back if you have any questions or you can private message me if you would prefer.

Hi Alwayshope ,

Wow ! What s journey and a fantastic amount of info. Keep strong, you are amazing! 
L

Thanks Barry W. That is just the summary of what we have been through. I have put a more comprehensive summary on my profile.

What I forgot to say to Jnc is that my husband's situation is the extreme. For many a recurrence can take a long time. Being T4 the treatment tends to be more comprehensive from the start. The question posed was how do you know this is happening when your cancer is PSA non secreting. In our case it is looking at the velocity of the rise in the PSA and the results of scans. Our oncologist prefers MRI's as they are more detailed.

thank you for your reply.  I guess the hope is the PSA stays as low, just such a worry as it was only 3 on diagnosis 

very best wishes  x

Thank you for replying, 

it is so worrying that they rely on PSA when it isn’t a great indicator in so many people.  I have questioned the oncologist many times on how they can rely on this when apparently my husband is non secreting, the reply always the same, because it’s reduced since treatment.  I did ask about scans after both chemo and radiotherapy and her response was it would be pointless at this stage as he’s had all the treatment he can have for now, along with the fact he felt less pain and has responded well to treatment.  they plan on seeing him 6 monthly but that his psa would be tested every 3 months and if he feels any pain or change in his body then they would do scans.  

we have been told it’s not curable and that had he not responded well to treatment he would have had 18 months, they now say 50/50 for 5 years, how they can say this without looking at scans is beyond me, but I read of other guys on here and it gives me a lot of hope for many more years.
I guess it is just the not knowing what’s going on in his body, he feels ok, apart from  bowel problems, for which he’s been referred in case of damage, he is keeping active and we are enjoying life as much as we can but I know it’s on his mind, 

Very best wishes to you both x

Thank you so much for your reply.

I'm so pleased to hear treatment is helping, Chemo ended December for my husband and radio March. Chemo certainly took it out him but he definitely feels a lot better than he did before treatment so hopefully it will be the same for your husband and you can get back to some kind of normality.  

the oncologist did say that if the PSA went up even a tad then he would be scanned but it just seems odd that no scans have been done once treatments have been completed, I have read that there isn’t much point to scanning for a few months after radiotherapy as the zapped areas would be mushed and wouldn’t settle for several months. 

Thankfully we are very positive people with lots of plans but obviously it would have been good to see the impact treatment has had on the tumours, regardless of how he feels health wise. 

very best wishes to you both x

Hi J

I know that PSa doesn't always mean that much but I think in this case it does.

As long as it doesn't start an upward trend I think everything ok.

I don't think that scans would show that much right now.

Fingers crossed HT will hold it down for some considerable time.

Don't forget there's always other HT treatments and new ones coming on stream

Best wishes

Steve 

Once again I think this demonstrates different attitudes by the oncologist. Because we are dealing with a T4 cancer that has gone walkabout our oncologist wants to check regularly with MRI and CT scans whether there is any new developments in other parts of the body as well as monitoring known treated areas. By being proactive he feels they can be dealt with when they are still small. He also reacts very quickly when there is a slight increase in the PSA.