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First 6 month psa check + increased

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User
Posted 22 Nov 2018 at 15:02

Dear all, it is through tears, fears and feeling sick to the stomach that I find myself back here today. The past year has been a year for living, mending and trying to get on with life since my husband's treatment last year so I have not visited the site for some time.

This morning my husband had his first 6 month PSA check and it has risen. He had RP in July 2017 followed by 6 weeks Radiotherapy in Nov/Dec 2017, age 58, Gleason 10, PSA 28, T3a. The first two 3 month PSA levels were 0.01. Today was 0.17. His Onco, who is fantastic I will add, seemed fairly undeterred by this but to me just shouts the start of it all again and after a year of feeling so strong and resilient I/ we are totally floored. The Onco said it could be normal Prostate cells being detected and does not necessarily mean cancerous ones. However, my gut feeling is something I cannot ignore and I feel like it would be unhelpful to grasp onto unrealistic outcomes or hear them if realistically this is how the increase/ doubling PSA part of our journey now begins. Can anyone offer either frank or reassuring information as to whether a higher reading now could be a blip or if more likely the start of PSA increase. We have been told that although it won't mean much until the next test in another 3 months that in the mean time A PET scan will be scheduled. Can a PET detect a cluster of cells even at this low level of PSA reading change?

I am so grateful to anyone reading or responding to this in advance. Strength to everyone despite not feeling so strong myself in this moment. 

User
Posted 22 Nov 2018 at 15:46
So sorry to read this. It reminds me of the feeling I had in September 2016 when my cancer was on the move again.

When my phone goes and it's the doctor I get light headed and panicked.

I had a Gadolinium enhanced MRI in a 1.5 Tesla scanner and it picked up tumour cells on the prostate bed where my tumour had escaped. I also had an F18 Choline PET/CT scan when my PSA was around 0.7 and it picked up recurrence in the prostate bed and in a seminal vesicle remnant after left after surgery. If it is a newer PET scan tracer then there is even more chance of it picking things up.

I have to say that in my feeling is that if he had RP in 2017 followed by RT then this is likely a recurrence. I can't quite get my head around the oncologist saying it could be normal prostate cells as the RP removes the prostate.

I am not a medic but I personally would get another PSA test in a month or 6 weeks rather than three months.

Did he have HT alongside the RT in 2017?

Hopefully others will come along and reply too.

Ian

Ido4

User
Posted 22 Nov 2018 at 16:15

Thank you Ian, I really appreciate your reply. 

He had Bicalutamide prior to RP, then had RT to 'mop up' and no has not had or been on any HT since. 

User
Posted 22 Nov 2018 at 17:13
Hi I’m so sorry for your worry. Click my picture and read my profile. It’s messy but I’m here 3 1/2 yrs post surgery with a massive psa and living life to the full. I’m only 51 with a young child. I would agree as above. Another psa in at least 3 months and push push push for a PET scan. Best wishes x
User
Posted 22 Nov 2018 at 18:45
We’ve never once come up for air since surgery 15/06/15 , and maybe 4 months earlier. It’s been horrendous and yet despite the turmoil it has led to massive improvements in all areas of my life and relationships. Yes it seems a bad result , and our results all act differently in their own ways , but I urge you to start enjoying all the time you have and to use it wisely. We are still desperately worried , yet at the same time we’ve enjoyed the last two years more than the six before. Your hubby still has HT and Chemo that can extend life massively I hear.
User
Posted 22 Nov 2018 at 19:15

Hi

I agree with all that others have said and I hope that my journey so far might offer some reassurance but I am aware that at my age my priorities will be different.

Briefly I had a RALP in 2015 and at my first PSA check following it was 0.2. By April 2016 it was 0.5 so I had SRT. Following SRT by Sept 2016 PSA was 0.6 and by March 2017 it was 1.2 so we started HT. PSA at July 2017 was undetectable where it has remained ever since.

I feel fine and am still enjoying life but accepting ED was part of the process which is why I say that being older my priorities may be different.

Sorry you are in this position and I send you my very wishes with your journey.

Kevan 

User
Posted 22 Nov 2018 at 19:55
I think your oncologist has given good advice. Too early to panic and you can't treat on the basis of gut feelings!

AC

User
Posted 22 Nov 2018 at 20:04
Hi are you sure it was 0.17 and not 0.017?? If your onco is saying a rise from 0.01 to 0.17 is "normal prostate cells" I would seriously consider seeing a different consultant.
User
Posted 22 Nov 2018 at 20:18
Hi it’s going to knock you when you get a higher than expected reading especially when you think you’ve kicked it into touch. I believe it is possible to leave some Prostate cells behind. A Urologist at a forum I once attended said Prostate cell/remnants can start to regenerate. However, I wouldn’t have any idea if this is the case with your OH. I presume he was told he was high risk.

My last PSA reading is higher than expected ( not as high as your OH’s) and I suspect it will be a test in three months time to see what’s happening.

I have my fingers crossed for you

Bri

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User
Posted 22 Nov 2018 at 15:46
So sorry to read this. It reminds me of the feeling I had in September 2016 when my cancer was on the move again.

When my phone goes and it's the doctor I get light headed and panicked.

I had a Gadolinium enhanced MRI in a 1.5 Tesla scanner and it picked up tumour cells on the prostate bed where my tumour had escaped. I also had an F18 Choline PET/CT scan when my PSA was around 0.7 and it picked up recurrence in the prostate bed and in a seminal vesicle remnant after left after surgery. If it is a newer PET scan tracer then there is even more chance of it picking things up.

I have to say that in my feeling is that if he had RP in 2017 followed by RT then this is likely a recurrence. I can't quite get my head around the oncologist saying it could be normal prostate cells as the RP removes the prostate.

I am not a medic but I personally would get another PSA test in a month or 6 weeks rather than three months.

Did he have HT alongside the RT in 2017?

Hopefully others will come along and reply too.

Ian

Ido4

User
Posted 22 Nov 2018 at 16:15

Thank you Ian, I really appreciate your reply. 

He had Bicalutamide prior to RP, then had RT to 'mop up' and no has not had or been on any HT since. 

User
Posted 22 Nov 2018 at 17:13
Hi I’m so sorry for your worry. Click my picture and read my profile. It’s messy but I’m here 3 1/2 yrs post surgery with a massive psa and living life to the full. I’m only 51 with a young child. I would agree as above. Another psa in at least 3 months and push push push for a PET scan. Best wishes x
User
Posted 22 Nov 2018 at 18:27

Thankyou Chris J, I remember reading your journey well. It made such an impact on me first time around when everything was so new to me/us. The rawness of everything Pca you detail + convey so well, the hope and the accepting too.  x

I feel like we have only just come up for air in a way and my emotions are not ready for another battering, not just yet. I wanted to hang onto those 0.01's and for them to keep coming. I'm not ready to be back on here again (in the kindest and most appreciative sense). My thoughts hadn't got as far as allowing for this eventuality as we were too busy repairing and just doing life over the past year. All the strength and resilience I felt for us both seems shattered today in an instance. I will regain it, we will not give in and we will fight to get the best and most helpful outcomes, just not today.

User
Posted 22 Nov 2018 at 18:45
We’ve never once come up for air since surgery 15/06/15 , and maybe 4 months earlier. It’s been horrendous and yet despite the turmoil it has led to massive improvements in all areas of my life and relationships. Yes it seems a bad result , and our results all act differently in their own ways , but I urge you to start enjoying all the time you have and to use it wisely. We are still desperately worried , yet at the same time we’ve enjoyed the last two years more than the six before. Your hubby still has HT and Chemo that can extend life massively I hear.
User
Posted 22 Nov 2018 at 19:15

Hi

I agree with all that others have said and I hope that my journey so far might offer some reassurance but I am aware that at my age my priorities will be different.

Briefly I had a RALP in 2015 and at my first PSA check following it was 0.2. By April 2016 it was 0.5 so I had SRT. Following SRT by Sept 2016 PSA was 0.6 and by March 2017 it was 1.2 so we started HT. PSA at July 2017 was undetectable where it has remained ever since.

I feel fine and am still enjoying life but accepting ED was part of the process which is why I say that being older my priorities may be different.

Sorry you are in this position and I send you my very wishes with your journey.

Kevan 

User
Posted 22 Nov 2018 at 19:46

Thank you for your response Kevan, much appreciated.  Your journey does offer reassurance with out a doubt and it does help being back here to again find some perspective in this given moment. I have so much respect to everyone out there, really. Best wishes.

User
Posted 22 Nov 2018 at 19:55
I think your oncologist has given good advice. Too early to panic and you can't treat on the basis of gut feelings!

AC

User
Posted 22 Nov 2018 at 20:04
Hi are you sure it was 0.17 and not 0.017?? If your onco is saying a rise from 0.01 to 0.17 is "normal prostate cells" I would seriously consider seeing a different consultant.
User
Posted 22 Nov 2018 at 20:18
Hi it’s going to knock you when you get a higher than expected reading especially when you think you’ve kicked it into touch. I believe it is possible to leave some Prostate cells behind. A Urologist at a forum I once attended said Prostate cell/remnants can start to regenerate. However, I wouldn’t have any idea if this is the case with your OH. I presume he was told he was high risk.

My last PSA reading is higher than expected ( not as high as your OH’s) and I suspect it will be a test in three months time to see what’s happening.

I have my fingers crossed for you

Bri

User
Posted 22 Nov 2018 at 20:56

 

 

Originally Posted by: Online Community Member
Hi are you sure it was 0.17 and not 0.017?? If your onco is saying a rise from 0.01 to 0.17 is "normal prostate cells" I would seriously consider seeing a different consultant.

Im quite sure they can’t detect to 3 decimal places  ie 1000th of a whole integer. That is why some areas are not considering anything under 0.1 , ie 1/10th if a whole. The super-fine testing is all becoming a bit of a farce and unreliable  , and hence being discounted. Over-treatment of PCa because of these minute rises is becoming unsustainable and in many cases totally unnecessary, and not always providing any improvement but at great expense to the NHS and the person involved in general. 

User
Posted 22 Nov 2018 at 22:53
Supersensitive goes down to 3 decimal places eg 0.014, 0.008 etc
User
Posted 24 Nov 2018 at 08:48

Thank you Bri, everything crossed for you too. 

 
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