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My experience with Advanced prostate cancer. Better than predicted ... stay positive.

tillysghost
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Hi 

I'm not a forum person but I think my experience may help others. Especially if you have just been given terrible news.

I was diagnosed, just before my 52 birthday after attending the doctors with what I thought was a kin to a groin strain,  the next day I started passing blood clots in my urine, an emergency visit to a young female doctor started me an this adventure.

a few invasive  tests later. Nothing that you can't handle, trust me.

Initial PSA 220 with the cancer already outside my prostate and satellites across my back and a higher Gleeson score a urologist who predicted 42 months.

Started straight on the life long hormone injections  (Degralix) and was taken on by the local cancer centre.

My PSA dropped to  0.01  in 12 weeks and the decision to give me treatment  of chemo followed by radiotherapy was made 

Six cycles of chemo then Six blasts of radio therapy.

CHEMO- the 1st cycle was ok but it hit me hard on cycle2.  Just keep climbing the hurdles. It's the same each time with the hill getting steeper. I was never sick

 Lost a little bit of hair but there ain't much there anyway. i worked all the way through chemo  ( my treatment was a Wednesday and Thursday Friday off.

Radiotherapy was ok it doesn't hurt but you may get a bit of after treatment soreness.  Don't panic when the staff run out of the room.

18 month of injections and a few level  PSA checks My PSA began to climb ,11 then on return to the cancer centre low 20's.

I started on Enzlutamide. My level dropped again to 0.01.

After 3.5 years on Enzlutamide with monthly check and chats-i had a heart attack. may or may not have been caused by tablets.

They stopped the Enzlutamide  (it can cause heart issues ,but without it i wouldn't be here).

so as i enter my seventh year.  

I'm currently only on Degralix (for the cancer)' have an unbelievable low PSA of 0.02 on my last check, four months ago.

The future,  who knows,  it will return. I know i have been lucky so far  but stay positve.

Modern medicine has advanced so much

Tillysghost

so called cause I should be a 3 year old ghost to my adorable pup Tilly at 58

take care

  • hi i was diagnosed in dec age 59. my psa was505 it's now 0.37. if you don't mind me asking were did it spread to other than the postrate, and what was your gleason score thanks dale.

  • in reply to golfboy

     Hi

    My Gleeson was 8  one of the aggressive patterns,, so i was told. 

    It isn't in my bones (thankfully) but else where in body the spread was unusual.

    Across my back and one in neck.. again this is what I was told. This was seven years ago.

    I was investigated for more than one type of C initially. Probably due to the cancer history of one side of my family and the spread.

    Although both of my parents succumbed to cancer when is still very young, a number of years apart.

      We are all different..

    I know, I am very lucky  not generally but with this situation. 

      I wont be responding to any more  questions  . sorry but i don't do forums.

     read them initially on diagnosis,  not for me.

     To many people concentrate on numbers.  bored myself with all the scientific bumf.  I had a bog standard job, was reasonably fit  at the start .

    Still battle on now but tire easily but i won't be beat.

    I don't dwell on the cancer or the heart issue. i have lived life very normally, my parents had very poor deaths, but were continually positive at least towards us.

     My next visit to hospital is next month, I will have a lovely family holiday just before.

    I will attend on my own as per, it scares the life out of my wife and the cancer patient areas are a miserable place to be, understandably .

    may be back on the heavy stuff. in June, dred the getting used to the drug again but hey ho make the most of your time. while you have it.

      Probably my last post

    Tillysghost

     

    i

  • in reply to tillysghost

    Hi  , that’s a great story and not dissimilar to my own.  Yes the cancer will come back, but you can’t deal in what if’s.  I wish you good luck in your journey and feel free to post whenever you want.  David

  • in reply to tillysghost

    thanks. unfortunately I'm gleason 4+5 9 aggressive. it's in my bones .but I'm thinking positive trying to pretend it's not happening. had my second 3 monthly hormone injection today .got my 3rd chemotherapy tomorrow. hope i can last 7 years. regards dale. 

  • in reply to golfboy

    Good luck Dale

    Keep jumping the hurdles the hill gets steeper but the hurdles are the same.

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