It’s been a long road

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Hi … my journey began 15 years ago when I was diagnosed with PC … had RP unfortunately it had burst out of the gland so we knew the 0.01 would increase … Radiotherapy followed a couple of years later and then Bicalutimide which was brilliant and kept it low ish until 2016 … then started Zoledex every 3 months and Arbiraterone … started around this time with a sciatic type pain from the lymph nodes which is most unpleasant … Also in the sacrum around this time PSA around this time flirted up to and around 15-20 … had docetaxel and more radiotherapy last year and Cabazitaxel this year with PSA around 50 … unfortunately it’s now travelled to my right adrenal and small signs in the liver which we are now waiting for CT and biopsy … worrying time again for all the family but the 15 years has been a journey of ups and downs which I suspect isn’t over yet

Oh forgot I had a left kidney tumour completely separate to the PC in 2019 so had partial nephrectomy done

thank you all for contributing because to talk about it is important and the conversations on here look really good so pleased to be part of it

Millibob over 2 years ago

Hi MyLouie - Welcome to the club - I thought I had it bad until I read your story, gosh you have been round the block with it. It makes my journey look like a walk in the park.

I do hope things improve for you and yes it must have been a horrible 15 years with this always at the back of your mind.

I agree 100% with your comments - yes it is important to talk about it and the only people who do know are the people who have suffered from this horrible cancer along with their family and friends.

Again, you are most welcome - I hope you enjoy your time here - the good people here helped me along during the darker days of my journey and now I feel I should stay and put back what I have had out - I wish you well with what the future holds - stay strong.

Kind Regards - Brian.

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Worriedwife over 2 years ago

Hello MyLouie good to ‘meet’ you and hear about your prostate cancer journey! And…what a journey it has been! I think you are testament to how much can be done to buy time for all you men who encounter this darned prostate cancer! My husbands family have been plagued with breast and prostate cancer and we have been making comparisons with how the different generations have or have not been treated and with, in the earlier generations, very little success and poor quality of life. Now, as you describe, there is a whole armoury of treatments and lives are being saved or lengthened and that gives us all hope. So, thank you for giving us all your ‘story’ and that hope.

on the other hand, I do acknowledge your pain and anxiety over the years. It’s a long time to have this diagnosis hanging over you and I sincerely hope that the forthcoming CT and biopsy bring a lot of reassurance and that there are more treatment options for you if there are more hurdles for you to jump over.

Thank you for ‘talking about it’. This is what we have been trying to do so that we can make family and friends aware of the need to be tested regularly and to be ‘breast and prostate aware’. My husband is now waiting for results of genetic tests to see whether our children are at risk, too. He has been treated with 29 fractions of radiotherapy ( finished March this year) and is having hormone therapy. We are trying very hard to move on with as much of a normal life and as much fun as possible despite the PC cloud which looms over us.

kind regards and best of luck!

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It’s been a long road