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Prostate cancer recurrence during Covid

Elliek1985
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Hi, my father is almost 2 years cancer free. His initial gleason score was a scary 9 but 40 sessions of radiation and we were able to look ahead again. His PSA levels went down to below 1 and he was put onto hormone treatment. They stopped it after only a year. He then had three small rises in psa but wasnt enough to cause concern and they did no more. The PSA levels from past two tests rose massively from approx 5 to over 800 in under 6 months. Covid is greatly limiting hospital actions. We have been told itll be approx 6 weeks for oncologist and 3-4 months before he can get a scan. They hope to start hormone after 2 weeks of another tablet as soon as they can get it to him. Any advice on what we need to prepare for treamtment wise etc greatly appreciated. 

 

Thanks 

Ellie

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    Hi I've been living with prostate Cancer since Feb 2016 ,it went to lymph nodes spine ribs pelvis and a lung,i was put on hormone therapy then chemo, my PSA was 1581over 2years it went down to 0.03 then started rising slowly beginning of last year it was 0.8then it started to rise quickly , over the next 9 months..

    I was put on stronger hormone therapy  (Enzalutamide)  and its going down again , I'm afraid its slow to get things moving nowadays but remember treatment options improve all the time  .side effects can vary from person to person, some have none some have a lot.

    Please keep in touch with how your father is doing its nice to hear from people and find out how treatment is going on ,its also handy for new patients to read to get an idea what what there treatment might be like.

    Best wishes for your father's future.. keep safe and positive.

    Billy

  • Offline in reply to Billygoatt

    Thank you for your reply Billy. Its so great to hear the treatment bringing those levels down particularly with the involvement of your spine and ribs etc. Can I ask did you have any localised pain?

    On the side effects he wasn't too bad.  we all teased during last treatment Dad really got emotional with the hormone therapy. We had to ban him from attending weddings and funerals as he sobbed more than the immediate families :laugh:

    First appointment done. Not very comforting. It was a different Dr than previous time, young and very flippant and dismissive. Very reluctant to answer about treatment plan other than start with hormone therapy and other than that option we'll discuss any others at time no need to now. My father has thigh pain and it was only at his persistent insistence that they took xrays. His psa has risen again to close to 900 in a month. Dads contact nurse who has been with him through first diagnosis has been great and she stated he would definitely need scan given the rate of psa increase and his inital gleason score of 9. He was stage 3c (if I remember correct) then so not spread.  But the Dr he saw didn't mention any scans and my father was so flummoxed by his reluctance to discuss prognosis and treatment plans he forgot to ask futher about scans.

     

    This all has just caused us to worry more rather than less but we will try and remain positive 

    Thanks again

  • Offline in reply to Elliek1985

    Hi Ellie ,I have aches and pains now and again, mainly back,low down , my Mrs says I walk like a gorilla,.

    I didn't say before, but that latest hormone therapy I went on really knocked me for 6 I was warned BP could go up instead it went down though so had to be careful moving about (dizzy spells) but PSA went down so kept on it . when PSA was low went on smaller dose, feeling lot better.

    One thing about that treatment is its used for men who want sex change, one good point I'm only shaving once a week now . and managed to get My weight off to what I usto be years ago, so I feel more energetic.bp still low still being careful but managing.

    Hope things get sorted regarding treatment,I had one specialist who just thought he knew it all it doesn't help us at all , hope he gets better one next time.

    Take care and keep positive remember.

    Billy

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