Results are back....not sure how to feel, bitter sweet

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Hello, 

Please have a read of my profile which details our journey so far.

So as some of you are aware, Paul has recently been for scans due to psa rise, he has no new symptoms. 

Good news - bone scan show improvement in 2 mets (L1 spine and pelvis), no progression in other 4 metsBlush

Not so good news - CT scan has shown new lesion on L2 spine (strangely not shown up on bone scanShrug tone1‍) and psa has now risen to 4.....increase of 1.5.

No organ or lymph nodes involvement.

Next steps - appointment with Oncologist next week, there is a question of whether Paul has already moved from castrate sensitive to castrate resistant disease which obviously reduces treatment choices and likely have poorer prognosis although I am not sure why the are talking about him becoming resistant already when he has only just taken the Abireratone, he hasnt tried anything else? Usually resistance happens 2-3 years at least into treatment so this is a massive blow. 

Paul has to have biposies taken too, these weren't done on initial diagnosis due to high volume disease and because he started Degarelix straight away but now they must be done to decide on treatments moving forward. 

PSA bloods remain monthly, scans to be repeated in 3 months.

Any words of advice greatly appreciated. I will update my profile tooBlue heart

  • Hello  

    Well the good news is Paul's team look to be on the ball with trying to find out the reason for the increasing PSA and they are looking at all options.

    * You have already mentioned targeted radiotherapy - perhaps now is the time for this.

    * I can't see the point in a biopsy as the result will be affected by Paul already being on Hormone Therapy.

    * I just wonder if a change in his HT treatment might make a difference - I have heard of people being resistant to one drug but not another - food for thought?

    I wish you both well with your oncology meeting later in the month - do let us know how you get on.

    Best wishes - brian.

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  • Hello Brian, thanks for taking the time to reply. She mentioned need for biposies now as these are needed for any clinical trials, even on treatment the information gained would still be helpful. 

    I am hoping he is offered another HT therapy, I have read that while abireratone rules out many other HT treatments, Enzalutamide should still be an option. 

    Hopefully things will become clearer following his appointment on Thursday. 

    What keeps us positive and focused is how well he is, pain free and generally feeling the best he has physicallyBlue heart

  • Hi  , every appointment takes you a step forward, so good luck on Thursday.  Just make the most of the fact that Paul is feeling well and do normal things.  It is so easy to let PCa rule your thoughts so keeping normality and having things to look forward to is really important.

    Best wishes, David

    Please remember that I am not medically trained and the above are my personal views.

  • Hi Polly, I dont know what more to add as my partner went straight to triplets therapy but i hope you get another treatment that will work for Paul and its great he is feeling physically well. I remembered you are up in Scotland and wondering if you are considering Chris Hoy's the Tour de 4 ride on 6th September. I really want to do it but not looking forward to the hills:).sending hugs

  • Hello  

    It's a good sign Paul is pain free and feeling fit and I wish you well for the appointment on Thursday.

    If you are the curious type here's a link to the open clinical trials at this time:

    Clinical Trials - Cancer Research UK.

    As an aside, my wife and I along with 8 other family members and 3 dogs are venturing from Lancashire to Eyemouth for a holiday the first week of Easter. I just can't get enough Lorne sausage! (I love it with HP sauce on a fresh bap!).

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Yes, wise words! We do try our best to be positive and upbeat, everyone around us say they are amazed at how well we seem to be coping with it all. 

    Hope you are doing okBlue heart

  • I wish we were signing up to this but cycling is not our strong pointJoy.....makes me tired thinking about it!! Absolutely go for it!!Muscle tone1Blue heart

  • Paul would agree with you about the lorne sausage and brown sauce.....for me, its "square" sausage and tomato sauceBlush