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18 months on and PSA anxiety

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User
Posted 13 Jun 2020 at 23:55

It is now 18 months since my RARP and my PSA is still undetectable. To date I appear to have come out of this ordeal  relatively unscathed. My continence is back, unless I am very tired in which case the odd drip might escape. So far as ED goes, I am no where near to  my pre op position, but with a bit of effort and 100mg of Viagra I can get there. My biggest issue at the moment is the anxiety which accompanies the 3 monthly PSA checks. Before I was discharged to specialist nurse care the surgeon assured me that the chance of a reoccurrence was very low and the prospect of me dying from prostate cancer in the next 15 years was minuscule. He advised me to stop worrying and get on with life- which is easier said than done. I feel as if the impact of the diagnosis is only just hitting me now. The PSA anxiety is a burden which I think could blight whatever prostate cancer free time that I may have. My wife and family are realistic but remain optimistic in view of the results so far and the surgeons positive comments. Does the PSA worry ever go away ?

User
Posted 14 Jun 2020 at 13:51

We saw Consultant last wk, who ran through the Nonograms.  There was an 80% chance post surgery of remaining cancer free at 15 years.  Naturally, given his young age having it now, we were worried about being in the 20%.  He reassured us that even if the cancer recurs it can still be treated.

I appreciate everyone would rather remain cancer free but I think it helps to focus on the positives, and focus on the things you can influence like lifestyle.  The anxiety isn’t going to go away ever, I can’t imagine.  Will no doubt find ways to live with it, eventually. 

Mel

User
Posted 14 Jun 2020 at 09:02
No unfortunately you just learn to manage it.

User
Posted 14 Jun 2020 at 09:27

Zebulon

I am six years post surgery,  try and analyze the situation. 18 months ago you had a raised PSA and took action to do something about it. 

Can you actually do anything now to prevent a rise in the PSA, if yes then do it and be content that you are doing all you can. If you cannot do anything to prevent a rise don't waste energy worrying about it. 

Thanks Chris

 

User
Posted 15 Jun 2020 at 17:40
When I went to see an oncologist post-op, he keyed some figures into his computer and turned the screen towards me to show me the results.

I turned my iPad to him to show him the exact same Nomogram prognostication from the Sloane Kettering Memorial Hospital in the States. As I go longer cancer-free, in idle moments I put revised dates post-op into that Nomogram to see how the forecast has changed. It’s sort of OK for five years, not so much for seven, and I think it’s 70% chance of recurrence in fifteen years, by which time I might be dead of something else.

If it does come back at some point, no doubt I will become acquainted with the delights of chemical castration and radiotherapy, as often chronicled here.

So, no I do not have any pre-PSA test anxiety, and I have extended my testing regime to every six months and am getting on with life, as long as it may be.

Best of luck.

Cheers, John.

User
Posted 16 Jun 2020 at 11:44

You're anxiety will I expect lessen with time but not go away completely.

All being good, your three monthly PSA test will reduce to 6 monthly and then annually - for the rest of your days.

This can increase anxiety to start with, it did with me, but as those "undetectable"  results come through - you'll hopefully become less anxious between checkups.

As others have said, which I find also helps, is that if your PSA ever does start to rise, there are likely to be many many options / strategies on the table - and more are undoubtedly coming through the pipeline as I write. 

Flexi

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User
Posted 14 Jun 2020 at 09:02
No unfortunately you just learn to manage it.

User
Posted 14 Jun 2020 at 09:27

Zebulon

I am six years post surgery,  try and analyze the situation. 18 months ago you had a raised PSA and took action to do something about it. 

Can you actually do anything now to prevent a rise in the PSA, if yes then do it and be content that you are doing all you can. If you cannot do anything to prevent a rise don't waste energy worrying about it. 

Thanks Chris

 

User
Posted 14 Jun 2020 at 13:51

We saw Consultant last wk, who ran through the Nonograms.  There was an 80% chance post surgery of remaining cancer free at 15 years.  Naturally, given his young age having it now, we were worried about being in the 20%.  He reassured us that even if the cancer recurs it can still be treated.

I appreciate everyone would rather remain cancer free but I think it helps to focus on the positives, and focus on the things you can influence like lifestyle.  The anxiety isn’t going to go away ever, I can’t imagine.  Will no doubt find ways to live with it, eventually. 

Mel

User
Posted 15 Jun 2020 at 17:40
When I went to see an oncologist post-op, he keyed some figures into his computer and turned the screen towards me to show me the results.

I turned my iPad to him to show him the exact same Nomogram prognostication from the Sloane Kettering Memorial Hospital in the States. As I go longer cancer-free, in idle moments I put revised dates post-op into that Nomogram to see how the forecast has changed. It’s sort of OK for five years, not so much for seven, and I think it’s 70% chance of recurrence in fifteen years, by which time I might be dead of something else.

If it does come back at some point, no doubt I will become acquainted with the delights of chemical castration and radiotherapy, as often chronicled here.

So, no I do not have any pre-PSA test anxiety, and I have extended my testing regime to every six months and am getting on with life, as long as it may be.

Best of luck.

Cheers, John.

User
Posted 16 Jun 2020 at 11:44

You're anxiety will I expect lessen with time but not go away completely.

All being good, your three monthly PSA test will reduce to 6 monthly and then annually - for the rest of your days.

This can increase anxiety to start with, it did with me, but as those "undetectable"  results come through - you'll hopefully become less anxious between checkups.

As others have said, which I find also helps, is that if your PSA ever does start to rise, there are likely to be many many options / strategies on the table - and more are undoubtedly coming through the pipeline as I write. 

Flexi

 
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