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Recurring PC with bouncing PSA

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User

Posted 29 Nov 2019 at 14:49

Hello, I was first diagnosed with prostate cancer in 2003 when my PSA was 15. (Gleeson 5. T2) grade 2+3).

I had 3D Conformal Radio Therapy May/June 2004 at PRESTON ROYAL PSA went down slowly to 0.72 in 2008. Stayed below 1.27 till 2015. Rose to 4.76 in Oct 2017. 7.28 in Oct 2018. (then dropped to 5.5 in Jan 2019?) 7.24 in Oct 2019. Tested every 3 months with readings up and down. Clear MRI scan this year.

I am 70 years of age and have never had any problems except loss of libido. The specialist wants me to start Hormone treatment if my PSA goes to 10. I am wondering as it is so slow moving if that will be necessary?

User

Posted 29 Nov 2019 at 20:06

The fact that the PSA test, is not very reliable, either - which is why it is not used in mass screenings.

Too much panic might be caused.

User

Posted 29 Nov 2019 at 21:09

My dad has had a recurrenceand his onco advised that rather than set a specific point of 10, 20 or similar, he would rather watch and wait - only intervening when the PSA doubling time gets to 6 months. He predicts (using well established nomograms) that in dad’s case, that will be about 20 years from now. Dad is quite a lot older than you, so 20 years would be a major achievement though 😂

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Nov 2019 at 22:40

Hi Daveee, I was operated on at Preston and similarly live on the the Fylde Coast.

Your psa is varying quite a lot when viewed in the annual figures stated.

1.27 till 2015.
4.76 in Oct 2017
7.28 in Oct 2018
5.5 in Jan 2019
7.24 in Oct 2019

Waiting as long as possible before treatment seems a good strategy if you have the ability to put up with it as there are only so many treatments you can have.

The increases between 2015 and Oct 2018 must have been worrying but 12 months of down and up gives it a different context. If it was to double in 6 months it would be another surprise reaching up to 15. Waiting till it reaches a point where a more detailed scan type might find something could be a plan. It might be quite a long time if more recent trends persist. I wouldn't be so sure on just going on hormones with finding out all I could from scans, like perhaps a PET scan if possible. It could be that if something is seen it could be treated locally rather than systematically.

You presumably have a lot more readings so did it change gradually. Is there anything that might have affected your psa since Oct 18 it seems odd that it peaked there and then went down and back up. If it had carried on it would likely be around 12 or more now.

You must be one of the longest members of this forum. I've met 3 people from Thornton with the condition and have met very few in total. I don't know if that's coincidence, one was in the bed next to me after my op.

I'm not that knowledgeable about hormones but the above are my thoughts from what I've read.
Regards

User

Posted 30 Nov 2019 at 23:31

Peter has outlined the approach I would take in the same circumstances. It may be a PSMA scan and specifically targeted MRI might find a small tumour that could be individually treated. This could possibly obviate the need for HT or at least defer it. However. should the increased PSA trend reach a certain point (and 10 is a point used by many oncologists), there is a possibility that micromets may be thought responsible and HT should then be started.

Barry

User

Posted 17 May 2023 at 08:44

Well 4 years on and the PSA has just risen over the dreaded 10 level.

Jul 2020 7.53. Oct 2020 6.26. Jan 2021 7.13. Oct 2021 8.79. Oct 2022 11.7. Jan 2023 10.8. Latest 12.48

Big question is do I go on HT. I am a fit and active 74 year old and have read the Macmillan book on Living with HT and to be honest the potential side effects scare me to death. I have the tablets here and have yet to take them. I then have to have ongoing injections of Zoladex 3.6mg or Prostap SR 3.75mg in a fortnight.

Edited by member 17 May 2023 at 16:59 | Reason: Typo

User

Posted 17 May 2023 at 08:53

Dave, some similarities, couple of years younger and fully understand your situation. I have got the prescription but let the onco know I am not going to take the tablets. I am still going to have the radiation treatment.

Thanks Chris

User

Posted 17 May 2023 at 09:53

Thanks Chris. are the side effects really that bad? I would like to think I can outlive it without going through all that, are there any other options? I had a CT scan at Easter which showed nothing and I have never had any pains or other symptoms

User

Posted 17 May 2023 at 11:01

What seems appropriate for one person may not be right for another. After failed RT and with slowly rising PSA, a small tumour was identified and I had salvage HIFU. However, after an initial drop, PSA continued to rise so it was evident that either the HIFU had not eradicated all the cancer and I was told to go on to HT and in fact the hospital provided me with tablets and Zoladex which remains in a cupboard to this day, as I wished to avoid taking it if possible. (I did have it prior to and during RT and know how debilitating it was for me). I subsequently decided to have a PSMA scan, which I paid for myself and a small tumour was seen within the Prostate and after another MRI, the surgeon who administered the previous HIFU, agreed to do a repeat since when my PSA has remained low and stable. An MRI a year on showed no cancer and I have been told I am in remission and only need a 6 monthly PSA check. So, for me getting the second HIFU has enabled me to avoid HT which would have been the next step. The PSMA scan therefore changed my treatment plan. There is no guarantee that cancer will not come back in future but I have been able to avoid HT so far.

I accept that I have been lucky and some in my position would not be so fortunate. Before making a treatment decision, I take the view that it is worth getting as much relevant information as possible and this is something I would recommend Davee does.

Barry

User

Posted 17 May 2023 at 12:15

Originally Posted by: Online Community Member

As Barry says what happens to one, doesn't mean it happens to all. I looked into some side effects and I looked like a prime candidate for moobs, a bit of a survey revealed guys who weren't prime candidates for moobs still got them.

Good luck with your decision making.

Thanks Chris

User

Posted 17 May 2023 at 12:51

We always have the do nothing option. A few examples of brave guys on here who choose that path until symptoms become an issue.

User

Posted 17 May 2023 at 22:51

Originally Posted by: Online Community Member

Well 4 years on and the PSA has just risen over the dreaded 10 level.

Jul 2020 7.53. Oct 2020 6.26. Jan 2021 7.13. Oct 2021 8.79. Oct 2022 11.7. Jan 2023 10.8. Latest 12.48

no one can force you to start HT if you don't want to - it just means that you might have to accept that your life will be a little shorter than it would otherwise have been. Saying no to HT now doesn't mean that you couldn't change your mind in the future.

The important thing is that you must not have that injection in a couple of weeks if you have not been taking the tablets!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jun 2023 at 21:21

Latest PSA results show a 25% reduction to 9.14 ! I think my instinct to delay hormone treatment was the right one and given me an extra 6 months with no side effects!

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