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Its been a roller coaster year - Update

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User
Posted 28 Nov 2016 at 20:12

My story began a few years ago with occasional trips to my GP due to frequency and urgency of passing urine my PSA was monitored and my GP felt that it was reasonable with very little increase over time. Rectal examination during this time was within normal limits. Then in October 15 my PSA rose to 5.7 resulting in a rapid referral to my local Hospital.

Following investigations  including scans  and rectal examination  I was diagnosed with PC  with a Gleason score of 3+4 and advised that it appeared to be confined to my Prostate with no evidence of Spread to elsewhere.

Then the difficult decision to which treatment pathway I should choose which I found very difficult at the time to make. I opted for RP and had the surgery in Dec 15 .My recovery was not to bad but it left me with  incontinence of Urine and ED I was advised that they   could not do the nerve sparing thus total lack of erection.

Unfortunately despite initial prognosis of clear margins Post Op my PSA showed 0.1 and then increased to 0.2 within a 4 month period. I was stressed and  worried by this and my Consultant advised that Salvage Therapy was my best option. Shortly after meeting with the  Cancer Consultant I attended Christies  Hospital for EBRT and had 20 daily sessions of this  treatment which have caused a few side effects but do seem to be now improving. I now have to wait for my review in Feb 2017 to  review. My PSA which will  at that time will indicate  my future treatment. I feel apprehensive and do try to keep positive but the uncertainty is hard to keep in check.

   I did see some improvement in my incontinence but I now have urgency and frequency  which I was advised could well be due Radiation Cystitis. My follow up appointment after completing RT for salvage therapy in Feb 17 was PSA  <0.1 which is a reduction without any HT which was the first positive news in a long time . Unfortunatly I have currently started with increased visits to the Loo and am still incontinent using on average 3 pads a day and still have total ED despite using a pump. I am now on a 6 month PSA review. Yesterday I had my second apt at the Christie Hospital following salvage therapy last august 16 my PSA reading remains at <0.1 which was great news I still have total ED and  up to 4 pads a day but I feel more positive about things.

 

Edited by member 09 Aug 2017 at 16:24  | Reason: Not specified

User
Posted 29 Nov 2016 at 08:50

Hello Andrew and a belated welcome.

Everyone on here understands how you feel since we have all been where you started, whether we are the PC sufferer or wife or partner.

I'm sure somebody whose already travelled the same route as you will be along to give you a pep talk since they will know what they are talking about.

Lots of help and advice on here.

I'm just bumping your post as it was disappearing down the list

Best Wishes

Sandra

*****

We can't control the winds - but we can adjust our sails
User
Posted 29 Nov 2016 at 09:18

Thank you Sandra for your comments.

User
Posted 29 Nov 2016 at 17:12

Hi Andrew reading your profile it shows you finished your RT this August and you are having your first PSA post rt in feb 2017 seems a long time, I had one two weeks after my adjuvant rt and ever 3 months after for next two and then went onto 6 months intervals next one end of December , hope your results are good Andy

User
Posted 29 Nov 2016 at 19:54

Hi Andrew different Trusts have different policies re the PSA test after adjuvant or salvage RT.
I finished my adjuvant RT in Sept 13 and had to wait till March 14 until the first PSA test. So about the same time as you are waiting.
When you consider the RT works for about 18 months to 24 months it kind of makes sense really

Bri

User
Posted 29 Nov 2016 at 20:27
Hi Andrew

Finished my salvage RT at the end of June,had PSA test and onco visit in September. PSA up from 0.5 to 0.6. Next PSA in Dec then another in March along with another onco visit.

As Bri says it can take 18 to 24 months for the test results to be meaningful so it just takes time. My onco said that although the PSA had increased by 0.1 it could stay still, increase or decrease so at the moment the first result is almost meaningless. Hang in there as there ain't a lot of choice.

Kind regards

Kevan

User
Posted 30 Nov 2016 at 17:37

Thanks for your comments. I was advised that it takes a few months to settle down after the Salvage Treatment. All the very best Andy

User
Posted 09 Aug 2017 at 16:53

 Hello everyone  yesterday I had my 6 monthly follow up apt at the Christie Hospital following on from RPT in Dec 15 and then with a Post OP rising PSA to 0.2  I commenced Salvage Therapy in July 16 receiving 20 sessions. Since that time this  is my second PSA test since completing EBT   which remains  at <0.1 which is very  welcomed news . I have not been prescribed any HT during these treatments. I am still incontinent and use on average 4 pads a day despite PFE and total ED this despite having a healthy Libido but things could be a lot worse. I hope this update gives some hopes of encouragement to other men considering Salvage Therapy . I realise that we are only as good as our last PSA test but I seem to be going in the right direction.

                                                                                             Andrew 

Edited by member 09 Aug 2017 at 17:01  | Reason: Not specified

User
Posted 09 Aug 2017 at 17:17

Good to hear from you Andrew with your update.

Fingers crossed for you that the "niggles" will improve

We can't control the winds - but we can adjust our sails
 
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