New here but have been living with Prostate Cancer for 12 years!

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Hi All

Just to say a quick hello and let you all know a quick snapshot of my PC journey. I have avoided the past but now feel I can both receive and provide support in this community to hopefully relieve our anxieties together.

Despite living with Prostate Cancer, now advanced, I am an active and relatively happy manwho has run half marathons every year for the past 17 years until 2020 lockdown, including a Dublin Marathon. I have been fortunate enough to have lived a relatively good life with Prostate Cancer.  I hope this message alone will help many of you in this community. I recently retired after 40 years in IT, leaving as a successful Programme Manager.

I am 62 years old and was diagnosed with aggressive (Gleason Score 9)  PC at the age of 49 in 2011. Following , immediate, laparoscopic  Radical Prostatectomy to remove my Prostate in 2011, I thought that would be happy days for me.

That was not to be as my PSA kept increasing moderately for 8 months post Surgery - clearly some invisible PC cells had escaped my Prostate!. I was then offered the only other curative treatment of 20 session of radiotherapy to blast the area, once occupied by my Prostate, in the hope to catch and destroy any escaped disease.

No such luck, as my PSA kept rising very slowly and stubbornly over the next 2 years. So my PC was now non-curable and "Advanced". So the oncologists offered me intermittent Hormone Therapy Injections over the years with 3 monthly PSA blood tests to monitor the progress of the escaped disease. 

Since 2019, 8 years after original surgery and radiotherapy I have been on continuous HT injections, every 12 weeks to manage the illness. And finally in June 2022, medical scans have shown that my cancer has metastasised and spread a little. So lucky me, I have even more HT on top of the injections in the for of Enzalutamide.

But life goes on and I am still living it to the best of my ability.

Feels great to have finally put this down in writing and hope it helps you all in some way

Have a great evening

P

 

  

  • Hello Prad, thank you so much for such a brave and honest account of your prostate journey. It has given me so much hope for my husband! It is wonderful that the medical advancements have enabled you to stay well and enjoying life all these years and I hope this continues for a long while for you. 

    im sure you will get lots of replies that will encourage you to ‘stay with us’ and pass on the hope we sometimes always need 

  • Good Morning Prad

    A warm welcome to our little group. It's really inspiring when someone arrives with a "success" story and is willing to share how they arrived there. It's fantastic to read how you have gone from diagnosis in 2011 to 2023.

    I wish you many more years of good health - stay with us and feel free to join in any conversations and offer advice gleaned from your 12 year journey down the Prostate Cancer route.

    Many thanks for your post and best wishes - Brian.

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  • Good luck prad on the rest of your journey.Im just starting on mine t3b radiotherapy due to start Thursday but now cancelled till next week . Such is life.I live for today and let tomorrow worry about it's self cheers Bob 

  • Hello worriedwide, thank you for your kind wishes . I am so glad my story has given you such hope for your husband. 

    I do not believe it is  just the medical

    advancements that have kept me going all

    these years. Having a supportive partner, and a happy outlook on life help me cope with side effects such as , Fatigue, mood, swings etc.

    Fo or the first 2-3 years, I had a Lot  of emotions such as Anger. “why me?” However, I found solitude in some mediation classes I discovered near where Iive

    Through keeping track of my PSA have over  the years, I have observed that my PSA always rises wheN I am stressed or unhappy.

    Be happy and I wish you both the best of Luck On your PC journey together

  • Thank you Robt. Love your great attitudeGrinning

  • Thank you for sharing your experience here Prad. Such an honest account of someone who won't give in. The very best to you. Good wishes 

    Barnman 

  • Hello Prad.

    Thanks for your inspiring story. It's good to know that there is always something else to try when one line of treatment stops working so well. My husband was diagnosed with ASAP and PIN in 2010 which was monitored yearly but suddenly escalated to T4 Grade 5 in 2020 and given maybe 6 months. Can I reassure you all that prostate cancer is normally slow growing, my husband's little invader is very rare and aggressive so atypical. Since then he has been on the rollercoaster of rising PSA'S but more tellingly changes showing up when he has his 3 monthly MRI scans as he is also a non PSA secreter, and has had different treatments including having just completed 6 rounds of Docetaxel chemotherapy. He is now feeling better than he has felt for a long time and is really getting more energy back now that he has stopped taking Enzalutamide. Hormone therapy for life is still having the usual effects on the emotions, particularly a feeling of insecurity ( I think that is also to do with his PTSD), but are manageable. We have been told that there are still further options down the line if we want them and as long as we still have a good quality of life we will take them. As a couple this journey has brought us closer together. We are more spontaneous in going out and doing things together if it is fine (which it is most of the time in Greece), particularly in the winter when it is not so hot. Yesterday we decided to buy a new Christmas tree as our 20 year old faithful friend is definitely losing it's needles but boy haven't they gone up in price. My husband is like a kid in the sweetshop wanting to put it up - he's only 80 and still insists on having a stocking every year as well as a roaring fire even if it is feeling hot outside. We both have a wacky sense of humour so you can imagine what can turn up in the stockings.

    Like you Prad we are living life as best we can and hope that our little story can help others to know that life is still good. Do as much as you can and don't put off til tomorrow all those bucket list things provided you can afford them. Life is not a rehearsal.

  • Thank you Alwayshope.

    Those three words “Life is not a Rehearsal” are just what I needed to hear at this time of the year

    I recently have had a burst of emotions due to lifelong HT and Enzalutamide. Extreme tiredness. Fatigue, tearful mainly down to side effects of the HT. Also suffering from PTSD from Being a carer for my daughter who had the most dreadful illness where she lost her mobility, freedom and had to give up her job. My wife and I, accompanied her to numerous, relentless A&E visits and a long phase of taking turns caring for her 24x7! Thankfully, she is a lot better now.

    Thank you Macmillan who offered me some free counselling sessions to help me cope. I also tried a reflexology treatment session yesterday for the first time to help with my emotional well-being. Do you know what, I think  it really helped and will continue with this.

    Despite all this, my wife and I managed  to get away abroad on two fantastic holidays this year and looking  forward to 2024!

    Thank you AlwaysHope, You seem

    to have the best attitude to life! I wish you and everyone else on this group a fabulous Christmas and many more joyous adventures in 2024. Be they small or large - make each one a great life experience!

    Prad

  • Hello  

    Thank you and what an inspiring post, considering what you have gone/are going through.- I wish you well and hope things continue to improve.

    I will take this opportunity to remind everyone, however you are feeling and whatever your needs are help is available and is only a free call away - Macmillan Helpline 0808 808 00 00 (8am to 8pm 7 days a week).

    Best wishes to you and your family and thanks for posting - Brian.

    Community Champion badge

    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.

  • Hello Prad,

    Thank you for sharing such an open and honest account. 

    For someone just starting this challenge, it's very poignant to read about your strength but also your difficulties. 

    I'm trying to remain positive and hopeful for test results but also prepared for some potentially hard times.

    I wish you all the very best and thanks again for sharing.