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User

Posted 29 Jan 2020 at 11:25

Well folks, if anyone has read any of my previous posts you would know that i am recovering from a turp operation, they channelled me out to relieve the pressure on my urethra so I could discard my catheter and wee like the bigger boys.

Had a scan recently and found that the disease had spread from the prostate to my penis and more bone mets in the pelvis, oh and a cracked pubic bone.

Its prostate cancer of the penis not penile cancer, it's not small cell either. My Oncologist told me he has had 4 cases in 10 years now he has me an another chap within a week.

The treatment is chemo and off the Abiraterone as its not working now. The prognosis is grim, less than 12 months so as you can imagine, my family are devastated and of course I'm not singing and dancing about it either . Does any body know of any guys who have had this rare spread, be good to compare notes.

User

Posted 30 Jan 2020 at 18:11

Thanks for the reply Lyn,

Just for the record I am a white British male 60 years old so I guess I dont even fit a high risk group. I remember joining this forum about 16 months ago and promised to bring a little humour to a horrible situation. Lyn, you quite rightly told me to wind my neck in as not all people on this site would appreciate my dark humour. Over the year we we lost members too early and now j find my self planning life in months not years. I am still upbeat, feel healthy and will continue to try living life for as long as I can.

I have a supportive family and a strong team at my cancer centre who will search for that magic bullet to the end in the form of immunotherapy to maybe extend my life.

Your saying of life must be understood backwards is marvelous but I just dont remember being this naughty but there you go. I will still post any changes , good of bad, you just never know in this game.

Love and respect Lyn and thank you for your tireless input

Chris

User

Posted 30 Jan 2020 at 18:44

Worth noting that candyman defied statistics and survived for 6 years; it was only towards the end that his quality of life was really affected. You have a good attitude and a strong support network, your aim now must be to defy all predictions, nomograms and doomsayers.

Sorry if I told you off - perhaps we had just lost someone here and the timing was iffy :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 Jan 2020 at 07:24

Your positivity does you proud Chris. Quite a few of us on here have received the dreaded 2 year prognosis including Kevin (irun) who continues to defy his condition.

Just keep going mate, that's all any of us can do.

User

Posted 31 Jan 2020 at 08:54

Best of luck and high respect to you with your bravery. It’s half the battle staying strong isn’t it !!

User

Posted 02 Mar 2020 at 13:00

Thanks for the update , albeit not so good news.

I have no experience of the situation you’re in but wish you all the best anyway.

Fingers crossed the Chemo does some good.

Rooting for you, as I’m sure all on here are too.

Phil

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User

Posted 29 Jan 2020 at 17:04

Chris, so sorry to read about this development. I hope others come along with more information for you.

Ido4

User

Posted 29 Jan 2020 at 21:43

Chris, sorry I have no experience to help here but just wanted to say feeling for you with this development..

Clare

User

Posted 29 Jan 2020 at 22:19

Thank you for the reply Clare I know from previous info that your journey together hasn't been easy either.

Chris

User

Posted 29 Jan 2020 at 22:38

Thanks for taking the time to reply, even if you cant help, it makes a difference. Post op from the turp I also had radiotherapy, this was because while in hospital l managed to get a pulmonary embolism too to prevent more clots occurring.

So blood thinning injections straight away and 6 sessions of radiotherapy over 6 weeks to stop the bleeding and shrink the tumor . Been advised that the radio had nothing to do with the penis getting cancer, but with you getting your bladder damaged by radiotherapy you do have a little think dont you .

Thanks Ido4 and best wishes with the future. Oh my psa has for 16 months been around the 0.34 to 0.18 range so when this disease decides to change track it makes some very reliable and trusted readings rubbish !

User

Posted 30 Jan 2020 at 00:12

Chris, we tend to think of PCa following a fairly predictable pathway. Yours hasn’t. Devastated for you, and wishing you strength.

Ulsterman

User

Posted 30 Jan 2020 at 00:49

I am so sorry to read this Chris. The only posting member that i can ever remember getting secondaries in the penis was Candyman; he was black African and very young at diagnosis and sadly, also had an extremely aggressive cancer. I think he was 42 when he was diagnosed. Not much consolation for you - sorry.

Edited by member 30 Jan 2020 at 00:51 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Jan 2020 at 17:45

Thanks my friend, predictable indeed anywhere but there .1st chemo today, just palliative care I'm afraid, best wishes on your long journey too

Chrid

User

Posted 30 Jan 2020 at 18:11

Thanks for the reply Lyn,

I have a supportive family and a strong team at my cancer centre who will search for that magic bullet to the end in the form of immunotherapy to maybe extend my life.

Love and respect Lyn and thank you for your tireless input

Chris

User

Posted 30 Jan 2020 at 18:44

Sorry if I told you off - perhaps we had just lost someone here and the timing was iffy :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 Jan 2020 at 07:24

Your positivity does you proud Chris. Quite a few of us on here have received the dreaded 2 year prognosis including Kevin (irun) who continues to defy his condition.

Just keep going mate, that's all any of us can do.

User

Posted 31 Jan 2020 at 08:54

Best of luck and high respect to you with your bravery. It’s half the battle staying strong isn’t it !!

User

Posted 02 Mar 2020 at 07:54

Many thanks is for the replies, thought I would update you. I have experienced a fair bit of pain since my last post , around the genital area, partly controlled with drugs. I arrive at hospital to be tested for the ok for chemo number 2 , too toxic my boy, off to a ward with you. Spent 8 days as an inmate weaning me off and getting me on some better treatment for pain relief. While I was in there I recieved news of my latest scan, as well as spreading to the penis, the bugger has travelled to the liver and lungs.

Had chemo sesh 2 while in hospital as this seems the only way forward , digest the news and move on. Back home this weekend , which feels great, got an appointment this week with pain clinic doctors to look at nerve damage, see what thay can do for quality of life and keep fighting. I'm aiming for some better news to report next time .

Chris.

User

Posted 02 Mar 2020 at 13:00

Thanks for the update , albeit not so good news.

I have no experience of the situation you’re in but wish you all the best anyway.

Fingers crossed the Chemo does some good.

Rooting for you, as I’m sure all on here are too.

Phil

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