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My journey so far 40 years old

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User
Posted 14 Aug 2021 at 13:25

Just to say hi to all of the people and thanks the kind advice and replies given on here. I have now finished my treatment. 

My original diagnosis:


Prostate carcinoma clinically T3


PSA 25.2 repeat 23.2


MRI (September 2020) T3bN1


TP biopsies (20th September 2020) right 4/14 cores 4+3 4-mm, left 12/12 cores 4+5 40-mm, total number of cores 16/26


Bone scan (15th September 2020) and CT (15th September 2020) left adrenal adenoma felt to be benign bone lesion left SIJ, but ?lymph node, left pelvis


PSMA scan 26th September 2020 activity in prostate and nodes up to level of L2. Non-specific changes in axilla and left SCF


Hormonal treatment starting 30.09.2020 and to continue


Upfront Taxotere chemotherapy six courses December 2020 through to April 2021


Episode of AF March 2021


PSA 0.62 10th April 2021


Testosterone 4.7 (04.09.2020)


PMSA Scan 23.04.2021 response in pelvic and abdominal lymph nodes. Concern that left SIJ lesion was bone met. Still non-specific with regards to left axillary and left SCF nodes although slightly less obvious now


Since my diagnosis i have completed 6 sessions of chemotherapy which before the last session had brought my PSA down to 0.63. That was in April and have not had a PSA taken again yet.


I had 25 external beam radiations to prostate and lymph nodes and suspected bone met. I then underwent HDR brachytherapy which all finished just over 4 weeks ago. I am still on ADT and have been told I will be for probably at least the next 2 years. I now have to wait until the end of September to get my PSA level checked.


I am grateful for all the treatment I have had even though at times its been very hard on me and my family. There have been some dark times but my family have stayed strong for me and am proud of my partner and young daughter for their strength and support. My oncologist has always said his aim was to cure me but i am very aware what the word cure means and that nothing can be promised. I have been so focused on fighting and treatment i did not prepare myself for how i would feel once it was done. Although I'm hopeful and trying to stay positive the cloud of fear has not left me. I suppose this is the same for anyone thats had to deal with this frightening disease. Deep down i am frightened that the cancer may not all be gone and will have to deal with this all again after the huge toll its already taken. Have asked my oncologist what my outlook now is and what might happen in the future. I know its a stupid question deep down and as he said he cant answer it and there is no point having conversations about things that may or may not happen until they do. If anyone has been in a similar situation what were the long term results of the same treatment? Have been told to put it to the back of my mind and try and get on with my life. If anyone can give some advice on how the best way to do that is I would really appreciate it?. Im not ashamed to say being diagnosed and then all the treatment has been a frightening ordeal like it is for anyone. I just really want to be the best I can be for my family and not live under this cloud of fear that I have been. My best wishes and prayers to everyone and their family's that has to deal with and fight this disease. 


 

User
Posted 14 Aug 2021 at 22:24

Originally Posted by: Online Community Member
Have been told to put it to the back of my mind and try and get on with my life. If anyone can give some advice on how the best way to do that is I would really appreciate it?. Im not ashamed to say being diagnosed and then all the treatment has been a frightening ordeal like it is for anyone. I just really want to be the best I can be for my family and not live under this cloud of fear that I have been. My best wishes and prayers to everyone and their family's that has to deal with and fight this disease. 


It's a hard up and down thing to deal with the mind stuff. The way I cope with it is to focus on something I enjoy - cycling and making things. Cycling got me through my surgical "indefinite COVID delay" (which turned out to be a couple of months) but also got me super fit, which I've subsequently realised is really useful for cancer patients and for surgery.


Making things can be done when cycling isn't possible (e.g. after surgery or when the weather is crap). But that's me. What is it that gives you an outlet? For a lot of people on here it seems to be booze, but that's obviously not as healthy as something physical.


If you are seriously affected mentally, you might get a referral to an oncological psychologist/psychiatrist. A close family member had this and found it (and the prescribed meds) very helpful. But that was crippling anxiety. You don't sound as if you're in that position.


At a less extreme level you could talk to someone at a Maggie's Centre https://www.maggies.org/ 


Another thing we've learned in the last year or so is to try to enjoy each day. Or at least something from each day. I say to people "Each day is a gift from God. Some days you might get a pair of socks. Other days you get a new bike/car."


Try to focus more on things you enjoy and reprioritise your life to eliminate/minimise time spent on things and with people you don't enjoy.

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 15 Aug 2021 at 04:26

Yes we look forward to the end of treatment, when it will all be over. But actually it is never over, because you never know if you are cured. 


Originally Posted by: Online Community Member


If anyone can give some advice on how the best way to do that is I would really appreciate it?.... and not live under this cloud of fear that I have been.


So your question is one of the most important that someone in our position has to find an answer to, and as you have identified, if you don't find an answer you will live in fear. 


The answer is different for everybody, and it can change from day to day. I couldn't quite find the words to describe the answer I am using today. I knew roughly what I wanted to say so I typed "splashing in puddles" in Google. This quote came up and I think it sums it up nicely:


“Have you noticed how children never bypass a puddle of water, but jump, splash, and slosh right through it? That's because they know an important truth: Life was meant to be lived; puddles were meant to be experienced.”


That answer will do until the next cloud of fear threatens to overshadow me. Then I will try and answer the question again, next time the answer might involve the wind on my cheeks, a piece of music, maybe letting sand run between my fingers. I guess I'm lucky because I know I can always find an answer and usually I just have to look outside and it is there. 


 


 

Dave

User
Posted 15 Aug 2021 at 08:08
There is a known phenomenon of cancer patients experiencing low mood or depression after the radical treatment finishes; Macmillan does a leaflet about it which you can download from their website.

Diagnosis, shock, being very busy organising stuff, rushing around getting treatment, multiple hospital visits (in the case of RT), aftercare, recovery from immediate side effects and then ..... nothing. No definite ending, no absolute 'yes this was successful' but the appointment diary suddenly looks empty .... and then the adrenalin that has kept you going since diagnosis just peters out and leaves lots of space in your head for all the feelings and fears that the adrenalin had been controlling / burying.

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