I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error


My Journey through HT and RT

User
Posted 21 Jan 2023 at 07:57

This may help explain the difference in number of treatments:

https://www.google.com/url?sa=t&source=web&cd=&ved=2ahUKEwjyuPWyidj8AhWQilwKHUTlB1UQFnoECAgQAQ&url=https%3A%2F%2Fwww.rcr.ac.uk%2Fsystem%2Ffiles%2Fpublication%2Ffield_publication_files%2Fbfco193_radiotherapy_dose_fractionation_third-edition-prostate-cancer_0.pdf&usg=AOvVaw1eHNRI67VxzKywvqgHom5j

 

 

 

 

 

 

 

Edited by member 21 Jan 2023 at 08:01  | Reason: Not specified

User
Posted 21 Jan 2023 at 09:17

Thanks Lyn for the giggles 🤣

Thanks Francis for the link

N

User
Posted 23 Jan 2023 at 17:00

Sixth and last(for the moment) Acupuncture session today, needles everywhere including my ears! I don’t care though because I am sure it has made a difference. I did however stop taking sage leaf for a few days last week and my mood definitely was not as good, although perhaps that was down to all the stress I’ve been through the last few days. Back on it now and mood is good.

Been out on my ebike this afternoon for a short ride(20 miles) and it was so good to be back cycling, I haven’t been out for a few weeks because of the weather and didn’t want to risk it before my treatment started(or not!) The weathers suppose to be ok for the rest of the week so hoping to do a 40+ miler sometime. Also found it very good for my leg muscles which have been aching a bit since my third prostap injection.

User
Posted 30 Jan 2023 at 16:10

My CNS has just phoned….God Bless these people, they are just so helpful.

She has just seen the letter from the Oncologist about the concerns on my 39 sessions. Apparently when the Oncologist discussed the plan with his colleagues they all thought treating the whole pelvic area was not worth the high risk of damaging the bowel and rectum. I am still at a loss as to why some people are ok for this whole pelvic area treatment and others are not, but I will be asking him when I have my next appointment. So now the plan is for 20 sessions to treat only the Prostate and Seminal Vesicles. The purpose of the MRI scan is to check how much the prostate(and presumably tumour) has shrunk. As my PSA test was still 1.6 I may have to wait longer to have the RT…they like it to be below 1 but I guess the scan will show what’s what. I’ve to get another PSA test a week before the Onco appointment on the 24th as the last one was done shortly after my gold marker seeds implant which could give a false reading.

My MRI scan was due in the 14th but I phoned them up and got a cancellation on Wednesday which is good…..might just manage a few days in Fuerteventura as there’s a flight on Thursday.

Been out on the bike today, cold here in Scotland but lovely and sunny so feeling good.

User
Posted 13 Feb 2023 at 21:12

So, following the earlier MRI scan on the 1st (God bless the NHS!) we managed to book flights to Fuerteventura on the 2nd and arrived back today. Should have been yesterday but my wife andI both caught some stomach bug and i was violently sick on Saturday night and could hardly stand on Sunday. A day of rest, fluids and electrolyte drinks and I was better by evening and managed to get seats in a flight today.

still getting issues with my gut but slowly improving.

10 days away was wonderful, the heat, the sunshine and the vibes of Corralejo really makes you relax. Unfortunately a Calima set in the last couple of days but still able to walk about In shorts and T shirts.

Did lots of walking up to 20k steps a day but started to get some joint ache and stiffness so decided to tone it down a bit. Many people say on here not to overdo it and I think I’ve learnt a valuable lesson. Can’t wait to get out on my ebike on Thursday after my PSA test(as I don’t want anything affecting it). It’s great exercise and not as much strain. Also back to the gym tomorrow.

Funny how this 3rd Prostap injection has changed things, I’ve had more issues than with the other two…one good thing though is that my flushes have massively improved. Wierd!

So, Onco appointment on 24th Feb and hopefully I can finally get an RT treatment plan in place.

Edited by member 13 Feb 2023 at 21:13  | Reason: Not specified

User
Posted 13 Feb 2023 at 22:11

I'm glad you're enjoying yourself. Prostate cancer can be a nuisance, but our primary duty should be enjoying life not fretting about cancer.

Dave

User
Posted 22 Feb 2023 at 16:36

Latest PSA result back today….1.3…after 8 months on Prostap.

so 36(at diagnosis) to 3 (3 months) to 1.6(6months) to 1.3(8 months)

Bit disappointed as hoped it would fall below 1, see the Onco on Friday and I think he likes it to be below 1 before starting RT. Hopefully he will be happy enough with the MRI scan to start RT🤞

User
Posted 22 Feb 2023 at 17:33
Good news that it's still going in the right direction though.

Fingers crossed for Friday that you can get your RT started.

Best wishes

Elaine

User
Posted 23 Feb 2023 at 10:45

I hope you can get the radiotherapy started Decho, 8 months on HT seems long enough before starting RT. 

Ido4

User
Posted 23 Feb 2023 at 15:49

Thanks Elaine and Ido4,

here’s hoping.🤞🤞🤞
I think what’s concerning me is the rate of slowdown in my PSA dropping.
First 3 months average daily drop was 0.36, next 3 months 0.018, last 2 months 0.004
At this rate it will never get below 1. Many questions spring to mind…

Does it matter it it doesn’t get below 1?
Do some people have a naturally higher PSA than others?
Has the cancer already started to resist the HT?

if anyone can shed any light on these questions I’d be most grateful.

User
Posted 24 Feb 2023 at 19:54

Meeting with the Onco went well today. MRI scan was good and he is happy for me to start RT after another CT planning scan….it’s been 2 months since the last one and he wants to check that nothings moved! Then ASAP start 20 sessions of RT to the Prostate and Seminal Vesicles.

He explained that my plumbing was just in the wrong place for whole pelvic RT and he showed me the scans to help me understand. There is simply too much risk of permanent damage to the bowel. I find it kind of reassuring that the Oncologist is looking after my best interests. The chance of reoccurrence is slightly higher by not having the whole pelvic area treated, but the outcome is more or less the same and the risk of damage far outweighs the risk of reoccurrence.

he wasn’t too bothered about my slowdown in PSA results. He said that some men have a naturally higher PSA level than others. Ideally it would be below 1 but he’s happy enough with 1.3.

He’s going to try and get the CT scan done ASAP and the RT started as soon after as possible.

Result!😊

This certainly is an ‘interesting’ journey…or as someone else said ‘ordeal’!

User
Posted 24 Feb 2023 at 20:45

Great news Derek, hopefully now the end is in sight, well you know what I mean after waiting this long for the RT to start. Sounds like you have got a good oncologist and good that they are explaining everything.

Best of luck with the RT i'm sure it'll be a walk in the park😉

User
Posted 24 Feb 2023 at 21:13
Glad to hear you've got a definite plan in place now. Best of luck for the RT. I found it all pretty tolerable.

All the best,

Chris

User
Posted 28 Feb 2023 at 12:31
All the best of luck. RT is a bit of an endurance - but there will be a longer life at the end of it.
User
Posted 28 Feb 2023 at 14:46

Hi Dereck

Didn't find RT too much of a problem, 60 gray in 20 fractions to prostate and SVs. Worst part was the minienema and pint of water at home before 30min drive to Guildford. Appointment usually on time but much wriggling and a near thing sometimes! Some bowel problems towards the end of treatment and for a week or so after. I would rather have RT / HT than prostatectomy

Best of luck to you and to us all. Hope you have pretty radiographers

 

Peternigel

 

User
Posted 28 Feb 2023 at 17:19

Thanks everyone for your good wishes, just want to get it over with.

PeterNigel, I see you have the same staging as me but higher Gleason. Good to hear from someone else who’s had the same treatment. I’m actually going to go to the hospital 30 mins early to use the enema and drink the water. It should take me 30mins to drive in but you can never guarantee with traffic into Edinburgh and I don’t want to get caught short!

I didn’t have a choice of treatment but TBH I am ok about having HT/RT. I’m surprised you weren’t onHT for 2 years following RT? I will be according to the Onco. The 3rd prostap injection (every 3 months) was the worst for me with aching hips and lower back. I’m doing a lot of walking, cycling and going to the gym to try and keep my muscles as good as possible. According to my magic scales I have the body of a 51 year old but I don’t feel like it at times 🤣🤣🤣🤣

User
Posted 28 Feb 2023 at 20:21

Hi Decho

The only time fortunately, I got seriously caught short was when I went for my bone scan at Guildford. There was an almighty traffic jam on the A3  and I was 3 hours late with wet car seat ugh!. I think everyone else was late including the courier with the Technetium isotope . Interesting walkabout as I visited my old place of work just up the road. Elder daughter used to live in Edinburgh so I know about the traffic.

My onco was adamant I should stop zolly after 6 mo. Testosterone still zilch so aches snd pains, zero libido etc. Things will improve I hope.

Petrrnigel

 

User
Posted 14 Mar 2023 at 21:10

Well, 2nd CT Planning Scan today, nurses were quite surprised that I had already had one back in December as it didn’t seem to appear in any notes. Anyway it meant that I didn’t need another set of tattoos and helped them line me up.
However, as with many things on this journey(ordeal!) things didn’t go according to plan.I completed all the pre scan ‘niceties’ and was lying in the table listening to the whirring of all the machinery but it seemed to go on for a long time. Then, everything stopped and the nurse told me they couldn’t go ahead because I had too much gas. They told me to go for a walk and try and break wind. I went for the walk but nothing happened partly because I thought I might wet myself if I tried to ‘push one out!’
so, back to square one another enema and then more water and another 30 minute wait.fortunately the enema did its job which included a rather loud fart. All was good when I went back in and the scan was done.

Moral of the story…..avoid broccoli!!!! I had that and green beans with my chicken for tea last night!

So, next stop RT on the 5th April….hopefully🤞🤞🤞🤞🤞🤞🤞🤞🤞 In the meantime another trip out to Fuerteventura for some sunshine🌞🌞🌞🌞

User
Posted 05 Apr 2023 at 19:58

Well, first RT session today and no Walk of Shame. As has been said by many people the staff were wonderful. It’s like a well oiled machine .

whilst waiting on my bladder filling I started to write a little poem which I thought I’d share with you…

 

If y’er o’er fifty and got a Willy?
Get yersel’ tested and don’t be so silly
Prostate Cancer IS a killer
But if caught early it’s not such a thriller. 

Many men don’t have symptoms and that’s a fact
But if you do it’s time to act
And if at night you’re up lots  to pee
That’s a warning sign for the doctor to see

You’ll get a finger up your bum
But don’t worry the doc won’t  use his thumb!
He’ll check for your size(of your prostate!🤣🤣🤣) and also a  lump
It only last seconds so  don’t take the hump!

It’s then a blood test that you’ll need
So that your PSA level is there to read
Don’t be alarmed if it’s higher than norm
It’s not the most reliable test in form.

If it’s bad news you’ll be sent for more tests. 
You’ll become one of NHS’s many guests
MRI scans and biopsies are next to be done
You’ve started a ‘journey’ you’ll wish you’d not come

The results will determine your options for cure
When that comes  you’ll feel better for sure.
But it’s you that must choose which route to take
I won’t kid you, it’s a difficult one to make

If you’re young (ish😊), healthy and spread it’s not done. 
You can have it whipped out…and your prostate is gone!
It’s a good option for those that can to strive,
But other options can equally keep you alive.

For me options were few because my diagnosis was late
So HT(hormone therapy) and RT(Radiotherapy) are to be my fate
I should have got tested sooner but you know….COVID😟
So when I found out I had cancer I was  f…ing livid!😡

HT for 3 years is what’s required for me,
And a 3 monthly jab in the belly it’s to be.
It has some real fun effects I wouldn’t want to own
As it stops your bits making testosterone. 

Enjoy your libido while you can.
Cos with HT thoughts of nookie go down the pan!
It’s really quite weird when you have no desire
Instead a nice Costa coffee is what you require😊

20 sessions of RT started today
And I’m so bloody relieved it’s underway. 
My first went well with NO ‘walk of shame’ (if you’ve got too much gas they make you go for a walk to try and fart!) 🤣🤣🤣🤣
I avoided brocoli last night as it’s normally to blame.

Then checks for years after with anxiety each time. 
That my curative path has kept me in line. 🤞🤞🤞
But there’s life after Cancer and I can see a future ahead
When finally I  can put this awful disease to bed

As my big bruv said to me, it’s what you need,
To ‘not let this define you’, very wise words indeed
So I get on with my life each and every day
And have lots of fun and laughter on the way

I’ve got so many people to thank, no less
Than Family, Friends, Maggie’s and the NHS
They’ve been such a support with all they’ve done
Without them this ordeal would not be much fun

So I do hope this poem finds you well. 
Men Take heed of my words to avoid this hell
If it can help just save even one life
I’ll be happy and not cause you any more strife 

User
Posted 05 Apr 2023 at 20:09
Good Poem !

I hope your keeping away from the "Windy" food.

 
Forum Jump  
©2025 Prostate Cancer UK