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

Notification

Error

what can i expect next

User
Posted 31 May 2021 at 09:30

finished 37 sessions off radiotherapy in march for gleeson 9 on decapeptyl every 3 months mainly ok slight soreness after the r/t but tolerable  follow up appointment in july but feel in limbo had some excellent advice from andy on this forum any other advice would be great  feel like life is on hold and not making any plans until i know what minght happen 

User
Posted 31 May 2021 at 15:25
I opted out of salvage RT after surgery and made the right choice according to the consultant who gave me palliative RT last November. But that’s not the point ! I’m 6 yrs into my journey and incurable aged 53. All of it moves so slowly normally with no ‘ big surprises’ ! So easier said than done but you just have to embrace life as normal whilst you can. In fact when cancer is concerned , cured or not , you owe it to yourself to enjoy life even more. I do worry but not as much as I used to now I’ve accepted the truth. Centerparcs end June , supercar day early August and a boys only staycation cruise end August. Need to focus on my 11 yr old boy , not myself

Good luck with it all and I hope you find a happy medium

If life gives you lemons , then make lemonade

User
Posted 31 May 2021 at 13:22

Hi Gaz,

The period when you finish your radiotherapy is very strange. You've had nearly 8 weeks of people fussing over you and treating you every day, and they usually really nice and it becomes quite a social occasion (maybe a bit less so during COVID).

Then everything stops. Where's everyone gone? Why have they stopped helping me?

Well, what's happened is that your radical treatment finished. It finished because they hope they've cured you. Yes, I know that's not a word we should use, but it takes a while for that so sink in - you were pre-treatment for months, and then having treatment for a couple of months, but now it's over - you're done! It takes a while for this to sink in to your mind, and it can be quite depressing thinking you've been left in limbo, until you realise.

However, Macmillan (and maybe other similar organisations) run courses specifically for this time. HOPE is one example, and I think it can be done as a half day course, or 6 shortened weekly sessions, and it's done with a handful of other patients in the same situation.

You usually get a 6 week and 12 week followup (PSA test before the 12 week one). These are your opportunity to feed back how you are, and request any followup services you need. If you think you could benefit from ED clinic or pump clinic, this is the time to ask. You won't get much feedback on how the treatment went, as that's generally not known until the hormone therapy finishes and testosterone returns.

It's worth keeping up with pelvic floor exercises - I stopped after the RT, but later noticed it had deteriorated, and started them up again (at a lesser level), and it very quickly improved again.

User
Posted 31 May 2021 at 14:28
What might happen is you're all sorted. Start enjoying life again! I don't know how things are for you, but it took a good few months with me before my bowels achieved some semblance of normality again, but other than that, just think "that's all fixed" and get on with your life!

Best wishes,

Chris

User
Posted 30 Aug 2021 at 07:15

don't know if anyone feels the same onco says PSA is 0.01 still have some symptoms mostly normal urine flow but sometimes slow bit off rectal pain at times but generally ok saying you are cured does anyone else still have a feeling that you aren't out off the woods yet treatment was first class and doctor seems positive but still feel unsure 🤔

User
Posted 30 Aug 2021 at 17:15

Thanks martin look forward to seeing your cartwheels 🤸🤸🤸

User
Posted 30 Aug 2021 at 21:33
Took the best part of a year for my bowels to return to anything like normal after RT. Pain is the rectum is probably radiation proctitis, which again is a very common side-effect. It should gradually get less frequently and then stop entirely.

RT causes a permanent swelling of the prostate, which very, very commonly results in flow issues. If you haven't already done so, get a prescription for Tamsulosin. That should sort it.

Best wishes,

Chris

User
Posted 30 Aug 2021 at 22:04

Thanks Chris for the advice much appreciated 👍

User
Posted 04 Sep 2021 at 14:33
Carry on regardless! Enjoy life!
User
Posted 07 Sep 2021 at 21:32
That’s good to see Gaz - I think just accept that it is okay to feel angry, confused, resentful and a bit abandoned while also feeling lucky and grateful but unlucky and guilty for not being more grateful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Sep 2021 at 08:51
Post treatment ADT seems to range from 0 to 3 years with the general consensus being 3 years is to long and zero isn't long enough.

It's a question for your ONCO for your particular case.

User
Posted 09 Sep 2021 at 09:52

Yes, I was on Zoladex (similar drug) for two years in total, six months before RT and 18 months after. The side effects were not dreadful and with a clear end date I was fine. I would not be so keen on being on it for life as happens to those with advanced cancer.

Dave

Show Most Thanked Posts
User
Posted 31 May 2021 at 13:22

Hi Gaz,

The period when you finish your radiotherapy is very strange. You've had nearly 8 weeks of people fussing over you and treating you every day, and they usually really nice and it becomes quite a social occasion (maybe a bit less so during COVID).

Then everything stops. Where's everyone gone? Why have they stopped helping me?

Well, what's happened is that your radical treatment finished. It finished because they hope they've cured you. Yes, I know that's not a word we should use, but it takes a while for that so sink in - you were pre-treatment for months, and then having treatment for a couple of months, but now it's over - you're done! It takes a while for this to sink in to your mind, and it can be quite depressing thinking you've been left in limbo, until you realise.

However, Macmillan (and maybe other similar organisations) run courses specifically for this time. HOPE is one example, and I think it can be done as a half day course, or 6 shortened weekly sessions, and it's done with a handful of other patients in the same situation.

You usually get a 6 week and 12 week followup (PSA test before the 12 week one). These are your opportunity to feed back how you are, and request any followup services you need. If you think you could benefit from ED clinic or pump clinic, this is the time to ask. You won't get much feedback on how the treatment went, as that's generally not known until the hormone therapy finishes and testosterone returns.

It's worth keeping up with pelvic floor exercises - I stopped after the RT, but later noticed it had deteriorated, and started them up again (at a lesser level), and it very quickly improved again.

User
Posted 31 May 2021 at 14:28
What might happen is you're all sorted. Start enjoying life again! I don't know how things are for you, but it took a good few months with me before my bowels achieved some semblance of normality again, but other than that, just think "that's all fixed" and get on with your life!

Best wishes,

Chris

User
Posted 31 May 2021 at 15:25
I opted out of salvage RT after surgery and made the right choice according to the consultant who gave me palliative RT last November. But that’s not the point ! I’m 6 yrs into my journey and incurable aged 53. All of it moves so slowly normally with no ‘ big surprises’ ! So easier said than done but you just have to embrace life as normal whilst you can. In fact when cancer is concerned , cured or not , you owe it to yourself to enjoy life even more. I do worry but not as much as I used to now I’ve accepted the truth. Centerparcs end June , supercar day early August and a boys only staycation cruise end August. Need to focus on my 11 yr old boy , not myself

Good luck with it all and I hope you find a happy medium

If life gives you lemons , then make lemonade

User
Posted 22 Aug 2021 at 17:26

thanks for all the replies doing ok  latest PSA 0.01 feeling ok taken a while for rectal pain to cease after the radiotherapy but generally not to bad will now try to move on good luck to anyone else battling this horrible desease 👍

User
Posted 29 Aug 2021 at 10:04

hoping martin Burney and anyone else battling this horrible desease are doing ok we all seem to keep a eye on all others and hopefully encourage  each other to keep moving forward 👍

User
Posted 30 Aug 2021 at 07:15

don't know if anyone feels the same onco says PSA is 0.01 still have some symptoms mostly normal urine flow but sometimes slow bit off rectal pain at times but generally ok saying you are cured does anyone else still have a feeling that you aren't out off the woods yet treatment was first class and doctor seems positive but still feel unsure 🤔

User
Posted 30 Aug 2021 at 07:41
Shouldn't use the cured word in any cancer context. What you are looking for is a durable remission that will last until you die of something else!

We all deal with it differently but you need to find a way to move on and enjoy life again.

User
Posted 30 Aug 2021 at 07:43

thanks for your response i totally agree I don't feel cured in anyway 👍

User
Posted 30 Aug 2021 at 17:04

Just seen this gaz … well done my friend….if I can get a psa reading like that come end of feb I’ll be doing cartwheels down the street

👏👏👏👏👏👏👏👏

User
Posted 30 Aug 2021 at 17:15

Thanks martin look forward to seeing your cartwheels 🤸🤸🤸

User
Posted 30 Aug 2021 at 21:33
Took the best part of a year for my bowels to return to anything like normal after RT. Pain is the rectum is probably radiation proctitis, which again is a very common side-effect. It should gradually get less frequently and then stop entirely.

RT causes a permanent swelling of the prostate, which very, very commonly results in flow issues. If you haven't already done so, get a prescription for Tamsulosin. That should sort it.

Best wishes,

Chris

User
Posted 30 Aug 2021 at 22:04

Thanks Chris for the advice much appreciated 👍

User
Posted 02 Sep 2021 at 12:13

Another week gone by feeling much better rectal pain improving so is urine flow hopefully will continue that way good luck to all 👍

User
Posted 03 Sep 2021 at 10:52

Thanking everyone for their sound advice posted to my thread it has been invaluable gaz 👍

User
Posted 04 Sep 2021 at 14:09

Anyone have any tips or ideas how to come to terms with your treatment and how to move on from it all in I just seem to worry about it so much and always fearing the worst even though PSA staying low and feeling ok at the moment still have problem moving on being on your own doesn't help I know but any ideas out there 👍

User
Posted 04 Sep 2021 at 14:33
Carry on regardless! Enjoy life!
User
Posted 04 Sep 2021 at 14:40

Macmillan does a great leaflet about the emotional impact of a cancer diagnosis once treatment has finished -

https://www.macmillan.org.uk/_images/LWBC-Report-2017_tcm9-317400.pdf 

They also have some helpful info here

https://www.macmillan.org.uk/cancer-information-and-support/after-treatment/beginning-to-recover 

And BUPA has this

https://www.bupa.co.uk/health-information/mental-health/mental-health-cancer 

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

User
Posted 04 Sep 2021 at 14:45

Thanks Lynn will check them out 👍

User
Posted 07 Sep 2021 at 19:35

I would like to thank Chris Dave Lynn amoungst many other for all the advice given feeling great at the moment gaz

User
Posted 07 Sep 2021 at 21:32
That’s good to see Gaz - I think just accept that it is okay to feel angry, confused, resentful and a bit abandoned while also feeling lucky and grateful but unlucky and guilty for not being more grateful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Sep 2021 at 22:09

Couldn't have put it clearer myself, Lyn...any of that gin left? 

Dave

User
Posted 07 Sep 2021 at 23:33
😂😂😂

I can't use alcohol as an excuse - I have been teetotal my whole life! I thought I had communicated the barrage of emotions rather well?

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

User
Posted 09 Sep 2021 at 07:48

got my 4th decapeptyl injection on Friday still have occasional hot flush but tiredness gone been told I need these for two years even after the radiotherapy wondering if anyone else has these for a long period also gaz

User
Posted 09 Sep 2021 at 08:51
Post treatment ADT seems to range from 0 to 3 years with the general consensus being 3 years is to long and zero isn't long enough.

It's a question for your ONCO for your particular case.

User
Posted 09 Sep 2021 at 09:52

Yes, I was on Zoladex (similar drug) for two years in total, six months before RT and 18 months after. The side effects were not dreadful and with a clear end date I was fine. I would not be so keen on being on it for life as happens to those with advanced cancer.

Dave

User
Posted 09 Sep 2021 at 19:25
I was due to be on HT for two years (6 months before RT, 18 months after), but my oncologist was happy to agree to me finishing after 18 months when I suggested this to him. He said that trial data shows negligible difference in long-term outcomes between men who are on HT for 18 compared to 24 months.

Best wishes,

Chris

User
Posted 09 Sep 2021 at 19:29

Thanks Chris much appreciated 👍

User
Posted 11 Sep 2021 at 09:51

Just had 4th decapeptyl injection onco says 4 more next year then just 6 monthly PSA test hopefully back to some normality god willing 🤔 hoping everyone is also doing ok gaz

User
Posted 19 Sep 2021 at 07:59

Anyone experienced water infections with hormone therapy seem to be having regular problems 

User
Posted 19 Sep 2021 at 11:43
More likely that you are not emptying your bladder properly- is your prostate enlarged?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Sep 2021 at 12:24

Thanks Lynn got onco appointment this week feeling fine just seem to have had a couple off UTI since finished radio therapy 

User
Posted 19 Sep 2021 at 14:59
Radiation cystitis? - have you tried cutting out all caffeine? Drinking cranberry juice (proper stuff, not the cheaper 'made from concentrate')?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Sep 2021 at 16:03

On cranberry juice at moment don't drink coffee feeling better today thanks Lynn

 
Forum Jump  
©2021 Prostate Cancer UK