My Prostate Cancer Journey and Why You Should Get Tested

[bruce1530]

Thank you @PK99 - you describe it as a journey - and that's a brilliant way to put it.
We have had some private chats and I can't overstate how beneficial these were for me - just being able to speak with someone who you only vaguely know, but who has been there before. It's a scary journey, but if you know what's ahead the journey is easier.

After hearing my story, I know of at least 5 people who have gone to their GP for tests. (Strangely, it's the person who had BUPA who has had most difficulty in getting the appointment!)
Of those 5, one has had an abnormality detected, has had MRI and is about to go for biopsy.

Guys, if you're at that "dangerous age" or have any urinary problems, speak to your GP and get things checked out. This stuff can be fixed - completely fixed - if it's detected early.

 

[theloafer]

got diagnosed in July .left it a bit to long before getting checked .putting the nightly runs to Loo down to old age ( 68) .have a slight spreading outside of prostate to few of my bones and also my lymph nodes.
having a hormone injection once a month to try and control it and stop it from spreading. the hormone injection starve the cancer of testosterone but which mess like hell with the body .
am down to go in hospital this sun 2-30 for a Gastroscopy cam down the throat and also a cam up the back passage Colonoscopy. fingers crossed they say it to see if the can find where i am loosing iron from(had a couple of dizzy spells and one blackout , but i am thinking it poss spread further. we can only wait and see
first concern was at GP after finger probe
then blood test psa 928
then ct scan followed by bone scan
then biopsy

 

[SpokeyDokey]

got diagnosed in July .left it a bit to long before getting checked .putting the nightly runs to Loo down to old age ( 68) .have a slight spreading outside of prostate to few of my bones and also my lymph nodes.
having a hormone injection once a month to try and control it and stop it from spreading. the hormone injection starve the cancer of testosterone but which mess like hell with the body .
am down to go in hospital this sun 2-30 for a Gastroscopy cam down the throat and also a cam up the back passage Colonoscopy. fingers crossed they say it to see if the can find where i am loosing iron from(had a couple of dizzy spells and one blackout , but i am thinking it poss spread further. we can only wait and see
first concern was at GP after finger probe
then blood test psa 928
then ct scan followed by bone scan
then biopsy

Wishing you all the best.

 

[postman]

got diagnosed in July .left it a bit to long before getting checked .putting the nightly runs to Loo down to old age ( 68) .have a slight spreading outside of prostate to few of my bones and also my lymph nodes.
having a hormone injection once a month to try and control it and stop it from spreading. the hormone injection starve the cancer of testosterone but which mess like hell with the body .
am down to go in hospital this sun 2-30 for a Gastroscopy cam down the throat and also a cam up the back passage Colonoscopy. fingers crossed they say it to see if the can find where i am loosing iron from(had a couple of dizzy spells and one blackout , but i am thinking it poss spread further. we can only wait and see
first concern was at GP after finger probe
then blood test psa 928
then ct scan followed by bone scan
then biopsy

All the best from here.I have had some of those camera examinations.The one down the throat,i got offered a knock out jab,which i took,felt awful for twenty four hours afterwards,others we did by spray.That is so much better,YOUR THROAT can take the camera,it's all in your mind,just breathe slowly and deeply,you will get through it.Are they doing both ends at the same time,if so take this tip,ask them to do the throat first..Again the bum one is easier you might even get asked do you want to watch the screen.What i did find was i was surrounded by mature nurses who have seen it all,they engage you in trivial talk during the bum one and time passes quickly.i even had one up my spout.It's over in no time,so don't worry.

 

[theloafer]

update .... all went well both cams i had no trouble at all 😄😄 found nothing just the chance i my be a slight bit Anaemia . got to get tablet's see how it progresses 👍

 

[postman]

update .... all went well both cams i had no trouble at all 😄😄 found nothing just the chance i my be a slight bit Anaemia . got to get tablet's see how it progresses 👍

Well done Guinness or Porter to build you up,you know it makes sense.Were you surrounded by nice nurses who kept you chatting.

 

[theloafer]

Well done Guinness or Porter to build you up,you know it makes sense.Were you surrounded by nice nurses who kept you chatting.

@postman .. indeed i was put me at total ease

 

[Rusty Nails]

I was diagnosed with prostate cancer in Jan 21 but it was a very low level (Gleason 6) which many men of my age (76) have.

I was told I am more likely to die with PC than of PC and opted for what is called active surveillance ...regular PSA tests, DREs and scans...rather than surgical intervention.

So far everything is OK, slight changes in PSA, both up and down, minor issues with peeing too much, but I must admit to some occasional worrying about the option I took and whether I should now go for prostate removal...my consultant told me I could opt for this at any time.

Not after advice because every case is different, but am beginning to think that removal would stop the possibility of the cancer worsening or spreading at some time in the future and ease my nagging worries.

As a follow up from this, two years on, my last annual review showed the cancer had got worse since the previous review and treatment was now recommended. The consultant has said they are looking to cure it and not just control it. I am now at the stage of monthly hormone injections prior to a two week intensive course of radiotherapy within a medical study, probably starting in late May. So far no real problems other than feelings of tiredness/fatigue after exercise. I am still trying to continue my walks and bike rides although I do not work as hard on them as before and find it easier to find a reason to duck out, not helped by a current dose of the man flu.

Not sure what to expect over the next few months and occasionally feeling a bit down, but also impatient to get through it and move on.

 

[SpokeyDokey]

As a follow up from this, two years on, my last annual review showed the cancer had got worse since the previous review and treatment was now recommended. The consultant has said they are looking to cure it and not just control it. I am now at the stage of monthly hormone injections prior to a two week intensive course of radiotherapy within a medical study, probably starting in late May. So far no real problems other than feelings of tiredness/fatigue after exercise. I am still trying to continue my walks and bike rides although I do not work as hard on them as before and find it easier to find a reason to duck out, not helped by a current dose of the man flu.

Not sure what to expect over the next few months and occasionally feeling a bit down, but also impatient to get through it and move on.

Good luck in your journey ahead.

Sounds like you are getting excellent advice and care.

 

[PK99]

As a follow up from this, two years on, my last annual review showed the cancer had got worse since the previous review and treatment was now recommended. The consultant has said they are looking to cure it and not just control it. I am now at the stage of monthly hormone injections prior to a two week intensive course of radiotherapy within a medical study, probably starting in late May. So far no real problems other than feelings of tiredness/fatigue after exercise. I am still trying to continue my walks and bike rides although I do not work as hard on them as before and find it easier to find a reason to duck out, not helped by a current dose of the man flu.

Not sure what to expect over the next few months and occasionally feeling a bit down, but also impatient to get through it and move on.

Well done for sharing.

It does help.

 

[bruce1530]

And an update from me. I'm now just over 2 years down the line from initial diagnosis, and 18 month on from surgery. All good, the cancer is gone.

I still get regular (6 monthly) PSA checks - since my prostate was removed, the PSA should be zero. Any traces could mean they "missed a bit". Last test was a fortnight ago, PSA undetecteable (less than 0.1)

 

[bruce1530]

For anyone going through this sort of treatment, I would suggest going along to one of your local "living with prostate cancer" sessions, if there is one in your area.

I was a complete skeptic. When I was getting treatment, the specialist nurse gave me the leaflets, and I did what i think most guys would do with them - ignored them and stuck them in a drawer.

On a follow-up appointment some time later, things were getting on top of me, despite the "good news" in the medical results. Another case of prostate cancer in the family, with a much less positive outcome. The same nurse asked me again if I had gone to the course. I said no, she said "I know you didnt, I do a few of the sessions. Go to the next one or else....." - she was the sort of woman you don't argue with

I went along - 6 afternoon sessions, run jointly by Prostate Scotland, NHS and our local cancer support group. 16 guys, with 16 stories, attended. I (at 59) was the youngest. Different themes every week, different specialists from NHS and the charities leading it. It was excellent.

These happen across the country in Scotland - about a dozen locations. There's also a similar set of sessions (Prostate FFIT), which focusses on exercise and wellbeing, and is run in partnership with Prostate Scotland and the SPFL - takes place at football grounds across the country. I'm sure there are similar things elsewhere.
https://www.prostatescotland.org.uk/help-and-support-for-you/living-well-with-prostate-cancer-course

 

[Rusty Nails]

Thanks all for the messages of support.
@Bruce153, there is a Maggie's Support group attached to Velindre cancer hospital, where I am being treated, which I am told is very helpful, but I must admit to keeping putting it off. I know it is a good idea and will probably pop in one day on a prostate cancer session to have a chat with others who are going through or have gone through it.

Ironically, I am very familiar with the hospital as my wife, son, brother and closest friend have been treated there and, before I retired, did a bit of non-medical work there.

 

[oxoman]

Thankyou for resurrecting this post. Glad that everyone seems ok or is being checked. Personally I get checked annually as I lost my maternal grandad when he was 60 and a paternal uncle at 65. One was down to lack of knowledge back in the mid 80s and the other was ignorance on there part till it was to late. Unfortunately I have had no male relatives to advise or talk to about this subject. I have however made a point of educating my sons of 19 and 25 what to watch for and not to be scared to ask, this advice has also been passed onto a few lads at work. As a result 1 lad at work is being closely monitored. This is to the mods can a section be created that is highlighted for things like cancer, blood pressure and mental health issues. If not keep highlighting it please.