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

Notification

Error

My journey starts now

Email this conversation Print this conversation
User
Posted 29 Mar 2023 at 14:50

hi just has my positive result for prostate cancer , so now begins my next stage I have a Gleason score of 4+4(8), and 9/16 cores , (still trying to understand this all this all). my urologist has said that the MDT at the hospital have discussed and their decision is to consider radical treatment either removal via a robot, all very Sci fi... or radical radiotherapy. at present still processing the news whilst i await my next appointment feel numb and emotions are all over the shop. was told this is a good community to join to help process. 

User
Posted 30 Mar 2023 at 09:27
Hi Makem 1977 and whilst I am at it GregJ and Steve as well. Right there with you guys, diagnosis meeting tomorrow, but got copied in on the Urologist's letter to my GP during my two week wait after biopsy! Advanced Postate Cancer, no symptoms and from what was said in the letter T3 at the minimum! The hardest part for me has been the wait for results, and likely they will still want to do bone scan and CT apparently (according to Andrew who runs several PC support groups). No symptoms at all and now this. Only advice I can give is to try and stay positive, dont try to read everything on the internet but enough to understand what the specialist will tell you. Rooting for all you guys, let's beat this together! David
User
Posted 29 Mar 2023 at 15:13
Oh, sorry to here the diagnosis guys. I've written a rather long blog - might be of some help. I do hope you have a choice of "what next". I had little choice owing to the extent of my cancer but hopefully, some 12 months on from treatment - I'm (on paper) cured! So I do give you hope. Please do your own research!! If you chat to a surgeon, they'll generally recommend surgery and likewise, an oncologist will recommend HT/RT. Personally, if you can get RT without the HT - that would've been better for me!! And do take every post on here with a large pinch of salt - we can share thoughts & experience but we shouldn't tell you what you should do . . .so happy hunting and feel free to ask any questions! Steve

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 15:36
I know it can be a jungle but believe me, once you've settled on a treatment path, you'll calm down ( a bit) and you'll feel that this is being sorted - treated and cured! Don't rush into anything but bear in mind the bias of the medics you'll talk to! If you live in the south, you'll have access to a lot more scope - focal treatments for example - less invasive and better std of life outcomes.....read on but don't just read one book! And feel to ask questions - I've many friends who've been down all routers of treatment, some good and some not so.Cheers

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 15:59

That's good, I'll have a look. That's 15 yrs old mind....lots of focal therapies since....

If you ever want a chat PM me!

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 09:37

Hi Dave, yes the continuous waiting, always having your phone charged and by you 24/7! But once diagnosed and a treatment plan swings into action...things do calm down. I think our brains kind of relax into "right, things are now happening"....not a nice journey but at least one with a curable ending!

You can request your records but be careful what you ask for... I got every phone call, appointment etc! It was interesting to see the MRI report...."suspect T3b" and they were right. For me that did take a bit of the sting out of the Dear John meeting!

Looks like you'll be following my route.

I'm not keen on coming back here a lot, in some ways I'm trying hard, not to forget but not to get back into that anxiety frenzy of the last two years...so if you need help, do PM me or even arrange a phone chat - I've been chatting to quite a few guys, it does help the "you're not alone" feeling!

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 10:25

Hi David

My symptoms diminished for quite some time after my biopsy. As I’m immunosupressed I was put on high dose Ciproflaxicin in case of infection. As the symptoms reduced I thought the antibiotics must have helped and I was really hoping that my diagnosis would come back as inflammation and/or prostatitis. 
Before the diagnosis meeting I had a phone call from one of the nurses to say I had to go for a bone scan … that’s when “sh*t got real!” as I thought they aren’t going to order a bone scan if it’s just prostatitis! 
I asked the nurse if it was cancer and she just wanted to end the call and said that it might be. I think she was asked to call me by mistake and she thought I had already had my diagnosis chat with the consultant. 

I was a little dismayed about how long everything had taken. I started with urinary symptoms 12 months ago. It took months to get an urology consultation and they wrote to my GP saying “well we can do an MRI but we don’t think it’s anything to worry about”. 
After the MRI it took many more weeks to get a biopsy appointment then it was another 5 weeks until diagnosis. 
I understand the NHS is under immense pressure but it has been a worrying 12 months in total for me. 
I think things will start to move after the bone scan results are through. 
Good luck tomorrow, will be thinking of you 🀞

Take care

Greg. 

User
Posted 03 Apr 2023 at 13:30
Hi Makem1977, well you and I are in the same boat (almost). Mine came through as 4+4 = 8 as well, but in my case looks like the little cancer cell bas88rds have got into my vesticals and one local lymph node as well. PET scan for me after a 6 week wait, to see if it has spread anywhere else. In the meantime they have launched straight into Hormone Therapy (no choices) and started me on Bicalutamide (little white anti-androgen tablets). 11 days of those and then the first more heavy duty Zoladex injection next week. Also in the queue for the Oncology team, so they can tell me what they are planning in the way of Radiotherapy and who knows maybe even Chemo if I am unlucky! They are also recommending me for the "Pearl Trial" at St Luke's Royal Surrey which targets more of the Lymph nodes in the body as a preventative measure.

So that's the physical side. On the mental side is the real battle! The rest is in the hands of your medical team and they can just get on with it asap. Taking one day at the time, one appointment at a time and spending quality time with the wife, family and friends as much as possible. Positive mental attitude a must for this process if you can manage it, but you are allowed a few wobbles!

Cheers, David

User
Posted 03 Apr 2023 at 13:48

Hi David

Sorry to hear your news. Yes, same boat indeed. One in eight! Big and busy boat 😳.

Have you had the psma pet scan yet? They don't normally start HT until that's done as it hides psma! I had my psma scan then, results three days later, then Wham! Degarelix a few days on from that. Castrated in 3 days....at least once you're on HT you've time to sort treatment out. You are kind of parked as the cancer cells wither and shrink as their favourite fertilizer has been removed! Testosterone!

I hope you fare better than me on HT - maybe have a look at Andrew Gabriel's Surviving Hormone Therapy. Excellent resource. Maybe contact him (Andy62 on here?) to view it or find out when the next one is. If I can be of any help - let me know via PM.

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 14:50

hi just has my positive result for prostate cancer , so now begins my next stage I have a Gleason score of 4+4(8), and 9/16 cores , (still trying to understand this all this all). my urologist has said that the MDT at the hospital have discussed and their decision is to consider radical treatment either removal via a robot, all very Sci fi... or radical radiotherapy. at present still processing the news whilst i await my next appointment feel numb and emotions are all over the shop. was told this is a good community to join to help process. 

User
Posted 29 Mar 2023 at 16:12
OK - my only choice too! And I only had one - HT/RT.

I've a few friends who went down the RP route, so I've some experience.

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 16:34

Yes, I'd say that's very rare indeed. It'll take a year to recover sexually and then ED could still be permanent. I've a close friend who had RP and a catheter in for 61 days...drove him mad and now he's got no nerves spared. So the usual blue pills won't work. It's penile injections for him 😳. Don't just read one book, one mate...or one surgeon! Do you need radical treatment right now, could you wait? Lots of questions but you will get sorted....

 .

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 10:29
Yeah, I can remember all the delays ...you really have to be the squeaky wheel that gets the oil! My CNS was great at being the go-between, as was the Macmillan nurses...they all know each other and the consultants.

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 10:59

That's great - you going to meet in person? Even better. I never did... until after. I took a voice recorder into my consultant meeting, he was ok with that. Just in case you forget what they said!

Oh, btw, here's a link to my YouTube video of me getting a session of radiotherapy! Painless! Bit odd the local radio station is playing Spirit in the Sky ☺️!

 

https://youtu.be/mfdnHDtKq0A

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 03 Apr 2023 at 13:47

Hi Makem1977,

When you go through the decision process you need to consider your age. RT/ HT is statistically a good option however given that you have a long life ahead of you then you might find you are repeating the process. RP has a 30% chance of reoccurrence. 

I was of course given a choice of a wide range of treatment's RT/ RP and focal however was slightly nudged down the RP path explanation as above. However, in my case the MRI showed no capsule breach and my Gleason score was lower. You are right to discuss all options.

Edited by member 03 Apr 2023 at 13:52  | Reason: Not specified

User
Posted 03 Apr 2023 at 14:23
Gleason score makes no difference to suitability for RP
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Apr 2023 at 13:16

My embrace and all my solidarity for you, Makem. I greet you from Buenos Aires, Argentina. Remember that the only battle that is lost is the one that is abandoned. Do not despair! You are not alone!
Ed.

Edited by member 05 Apr 2023 at 16:14  | Reason: Not specified

User
Posted 20 Apr 2023 at 20:20
Good luck with your PET scan Makem. I have mine next week and whilst the scan itself is not a worry, the results are another kettle of fish!! But, let's stay positive and hope for the best outcomes. As to feeling numb, perhaps not a bad thing until all the tests and scans etc are done! Then when we know the full picture, we can get in the fight to win! Fingers crossed for you matey and keep your chin up! David
User
Posted 25 Apr 2023 at 12:27

thank you all the best your end as well, this is defo a roller coaster ride i do not like the emotion side i mean. treating it like a computer game on the next stage

Edited by member 25 Apr 2023 at 15:32  | Reason: Not specified

User
Posted 04 May 2023 at 11:55

That’s good news Makem. Glad you’re going in the right direction. 😊
I had my surgery pre-assessment yesterday and waiting for my letter to say if I’ve passed it or not. Hopefully I’ll not be far behind you. 
Good luck for Wednesday, let us know how you get on. 
All the best πŸ‘

Greg. 

Show Most Thanked Posts
User
Posted 29 Mar 2023 at 15:06

Hi Makem1977

I was just diagnosed last week with locally advanced, Gleason 3+3, T3 N0. 
I was definitely knocked off guard by the diagnosis as it wasn’t what my original tests were looking for. PSA was only 3.1 at the start (12 months ago) so it was presumed to be prostatitis or chronic prostatitis. MRI scan showed areas of concern, biopsy then diagnosis. Bone scan just completed and I’m due my next appointment next week to discuss scan and choose which treatment to follow. 

I have to say the thing that has thrown me the most is the having to choose which treatment rather than a medical professional tell me “this is what you need and this is what we’re going to do”. 
I’m still trawling all over this site as there are many excellent sources of info and inspiration from the great people that have gone before us. I think you will learn a great deal here and it will help you formulate a list of questions to ask at your next appointment. 

Good luck, I’m right there with you :)

Take care

Greg. 

User
Posted 29 Mar 2023 at 15:13
Oh, sorry to here the diagnosis guys. I've written a rather long blog - might be of some help. I do hope you have a choice of "what next". I had little choice owing to the extent of my cancer but hopefully, some 12 months on from treatment - I'm (on paper) cured! So I do give you hope. Please do your own research!! If you chat to a surgeon, they'll generally recommend surgery and likewise, an oncologist will recommend HT/RT. Personally, if you can get RT without the HT - that would've been better for me!! And do take every post on here with a large pinch of salt - we can share thoughts & experience but we shouldn't tell you what you should do . . .so happy hunting and feel free to ask any questions! Steve

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 15:16
hi thanks for the replies, think its the still dealing with diagnosis im struggling, no idea how to feel or reach out to, and agree to be told to options and it is my choice, gut instinct is to just get the F***er out, but hope to mine the community here for support and just some one to talk to
User
Posted 29 Mar 2023 at 15:25

I was exactly the same Makem1977

I struggled massively for the first few days, trying to get the diagnosis to sink in, not sure it has fully yet but I’ve spent each day since reading as much as I can. 
On my first post someone kindly recommended the book Saving Your Sex Life by John P. Mulhall M.D

I purchased it on Kindle and read it across 2 days. It really does lay every aspect of prostate cancer out in front of you, clearly and concisely without any bias to one particular treatment route.
I found it extremely educational and it has definitely helped me create a list of questions to ask the consultant at my next appointment. I can definitely recommend it, if you have a Kindle.

My wife is also now reading it as she wants to understand as much as she can so we know what to expect. 

User
Posted 29 Mar 2023 at 15:36
I know it can be a jungle but believe me, once you've settled on a treatment path, you'll calm down ( a bit) and you'll feel that this is being sorted - treated and cured! Don't rush into anything but bear in mind the bias of the medics you'll talk to! If you live in the south, you'll have access to a lot more scope - focal treatments for example - less invasive and better std of life outcomes.....read on but don't just read one book! And feel to ask questions - I've many friends who've been down all routers of treatment, some good and some not so.Cheers

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 15:51

Thanks Esteban

What I particularly liked about Mulhall’s book is that he discusses every possible treatment (as of 2008 when written) and doesn’t have any bias towards any of the possible treatment routes. 
I like how he just states the facts as they are. 

User
Posted 29 Mar 2023 at 15:59

That's good, I'll have a look. That's 15 yrs old mind....lots of focal therapies since....

If you ever want a chat PM me!

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 16:05
thanks it feels really liek the start of something big lots to take it yeah and at present defo feel like a rabbit in the headlights, but hearing voices of experience help, i think your right once i know if i have gone left or right can plan even more
User
Posted 29 Mar 2023 at 16:09

It is indeed 15 years old but unfortunately the only treatments that my hospital offer are RP or RT. I have no options of anything else, unless I go private, which I can’t afford. So he covers RP and RT quite extensively which is what I was interested in, out of necessity rather than choice. Cheers :)

User
Posted 29 Mar 2023 at 16:12
OK - my only choice too! And I only had one - HT/RT.

I've a few friends who went down the RP route, so I've some experience.

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 16:14

I’m just taking very small baby steps one day at a time Makem1977

Get the next test done then get to the next appointment then go from there. I started off thinking way too far ahead in the first few days and felt totally dazed and confused. 
Like I said I now have dozens of questions to ask in my next appointment. I did have a handful to ask during my diagnosis appointment but these barely scratched the surface of what I want to ask him now, before making my decision on treatment. 

User
Posted 29 Mar 2023 at 16:23

I spoke on the phone to a friend of a friend yesterday who had RP in October last year. He’s a pretty fit guy, lot of walking and cycling, so his story was a bit of a sickener … took me all my time to not tell him to bog off! Haha. :D


He had robotic surgery by DaVinci in the same hospital I would go to if I go for RP.
He was up and walking about within hours of his anaesthetic working off. He wanted to go home 8am next day but they kept him in another night because he was a little dehydrated. 
Back the week after for catheter removal and took a taxi home. Needed a wee in the taxi but held on to it until he got home. Went normally when he got in and has gone normally ever since. Never used a single pad yet and only had about 4 paracetamol the whole time! What the actual ****! :)

Still has ED but he’s working on that and very happy with his progress so far. His nurse said he was definitely one of a tiny percentage that have so few problems. 

I was chuffed for him 😊

Edited by member 30 Mar 2023 at 10:31  | Reason: Not specified

User
Posted 29 Mar 2023 at 16:34

Yes, I'd say that's very rare indeed. It'll take a year to recover sexually and then ED could still be permanent. I've a close friend who had RP and a catheter in for 61 days...drove him mad and now he's got no nerves spared. So the usual blue pills won't work. It's penile injections for him 😳. Don't just read one book, one mate...or one surgeon! Do you need radical treatment right now, could you wait? Lots of questions but you will get sorted....

 .

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 09:27
Hi Makem 1977 and whilst I am at it GregJ and Steve as well. Right there with you guys, diagnosis meeting tomorrow, but got copied in on the Urologist's letter to my GP during my two week wait after biopsy! Advanced Postate Cancer, no symptoms and from what was said in the letter T3 at the minimum! The hardest part for me has been the wait for results, and likely they will still want to do bone scan and CT apparently (according to Andrew who runs several PC support groups). No symptoms at all and now this. Only advice I can give is to try and stay positive, dont try to read everything on the internet but enough to understand what the specialist will tell you. Rooting for all you guys, let's beat this together! David
User
Posted 30 Mar 2023 at 09:37

Hi Dave, yes the continuous waiting, always having your phone charged and by you 24/7! But once diagnosed and a treatment plan swings into action...things do calm down. I think our brains kind of relax into "right, things are now happening"....not a nice journey but at least one with a curable ending!

You can request your records but be careful what you ask for... I got every phone call, appointment etc! It was interesting to see the MRI report...."suspect T3b" and they were right. For me that did take a bit of the sting out of the Dear John meeting!

Looks like you'll be following my route.

I'm not keen on coming back here a lot, in some ways I'm trying hard, not to forget but not to get back into that anxiety frenzy of the last two years...so if you need help, do PM me or even arrange a phone chat - I've been chatting to quite a few guys, it does help the "you're not alone" feeling!

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 10:25

Hi David

My symptoms diminished for quite some time after my biopsy. As I’m immunosupressed I was put on high dose Ciproflaxicin in case of infection. As the symptoms reduced I thought the antibiotics must have helped and I was really hoping that my diagnosis would come back as inflammation and/or prostatitis. 
Before the diagnosis meeting I had a phone call from one of the nurses to say I had to go for a bone scan … that’s when “sh*t got real!” as I thought they aren’t going to order a bone scan if it’s just prostatitis! 
I asked the nurse if it was cancer and she just wanted to end the call and said that it might be. I think she was asked to call me by mistake and she thought I had already had my diagnosis chat with the consultant. 

I was a little dismayed about how long everything had taken. I started with urinary symptoms 12 months ago. It took months to get an urology consultation and they wrote to my GP saying “well we can do an MRI but we don’t think it’s anything to worry about”. 
After the MRI it took many more weeks to get a biopsy appointment then it was another 5 weeks until diagnosis. 
I understand the NHS is under immense pressure but it has been a worrying 12 months in total for me. 
I think things will start to move after the bone scan results are through. 
Good luck tomorrow, will be thinking of you 🀞

Take care

Greg. 

User
Posted 30 Mar 2023 at 10:29
Yeah, I can remember all the delays ...you really have to be the squeaky wheel that gets the oil! My CNS was great at being the go-between, as was the Macmillan nurses...they all know each other and the consultants.

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 10:51

I’m hoping to have some time with the CNS next week Steve. 
Just had my next appointment letter through for 6th April with consultant so if he hasn’t got time to answer my dozens of questions then I hope the nurses can give me time to speak with them. 

User
Posted 30 Mar 2023 at 10:59

That's great - you going to meet in person? Even better. I never did... until after. I took a voice recorder into my consultant meeting, he was ok with that. Just in case you forget what they said!

Oh, btw, here's a link to my YouTube video of me getting a session of radiotherapy! Painless! Bit odd the local radio station is playing Spirit in the Sky ☺️!

 

https://youtu.be/mfdnHDtKq0A

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 30 Mar 2023 at 11:27

Well Steve, that is a top tune to have playing at least. 😁

I had 5 minutes with the CNS after my diagnosis appointment so I’m going to call the CNS tomorrow and say I have a lot of questions, will I have time to ask the consultant or can I see you after the appointment. If she thinks there won’t be time for either I’ll ask her the questions over the phone, if she has time of course. 
Thanks for the vid link, I’ll look now. πŸ‘

cheers

Greg. 

User
Posted 30 Mar 2023 at 11:42

Thanks Steve

It was good to see your video. 
It’s a hell of a machine when you get a proper look at it. 
A neighbour told us this morning that our local hospital have just started a new form of radiotherapy that is extreme high precision and can only take 5 sessions. 
Is this something that anyone has heard of before? Is it a form of high intensity therapy?

I will certainly ask the question in my next appointment. 
Cheers

Greg. 

User
Posted 30 Mar 2023 at 11:45

Sincere apologies Makem

I really don’t want to hijack your thread I just thought it may be interesting for both of us to hear these things maybe? 
I’m trying to get as much info as I can before my next appointment. Please forgive me if I’ve overstepped the mark. 

User
Posted 30 Mar 2023 at 16:15

hi that is ok , as all so new to me i do not even know how to use online communities like this so all this is help full

 

i have my next appointments in  now, one with a  robotic surgeon and one with a Oncologist , for w/c 17th, thought if i got them the same week it will all be fresh in my mind, still i find odd it is up to me to decide best course of action, radical treatment or radical removal  so now got 2 weeks of limbo to work out what to ask  ask. But still wobbly at the moment and emotions all over the shot

User
Posted 30 Mar 2023 at 16:31

Me too Makem

I honestly thought they would say “this is what it is and this is what we are going to do about it”

Then I would have just gone along with it and dealt with the aftermath. It really confused me when they offered a choice. It’s our life though and it’s us that has to live with the effects after treatment so the final decision has to be ours I guess.

I really am trying to just take it very slowly and not trying to think too far ahead. We can do this, like the countless other heroes on here and around the globe. 
Baby steps and lots of reading and asking. 
The aim is to be cancer free so I am trying to keep my mind focussed on that and talk to the people that can care for us and help us reach our goal.

In my next appointment I’m going to ask what they believe is the best treatment for my particular cancer. They won’t tell me what choice I should make I know but they can certainly put their case forward as to why a particular treatment may be better for me based on my age, general health, stage of cancer, it’s position, follow on treatment options in case of return.
I’ve built up lots of questions to ask, I can PM them to you if you would like to look through them and see if any apply to your situation. 

Are you in the UK? If so, did you get the black booklet “Prostate cancer: A guide for men who’ve just been diagnosed?

 

User
Posted 31 Mar 2023 at 08:18

Yes, things have moved on quite considerably, even in the last few years. I was lucky enough to get to meet my onco and a radiologist - thanks to them seeing my blog! The radiologist said the multi million pound linacs are mm precise and in fact we don't need to do the empty bladder, drink 400 ml water each time...that was the old regime and the NHS is slow to change. The kit can cope with empty, floppy bladders! If you can get radiotherapy without HT, or just a brief bit, that would be ideal. In my humble view.

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 03 Apr 2023 at 12:53

hi yeah if you couldpm them i would be very grateful

User
Posted 03 Apr 2023 at 13:04

hi i cannot PM just yet , but the answer is yes please

User
Posted 03 Apr 2023 at 13:21

Hi Makem

I've sent some PMs, not sure if you can see em.ook in your inbox!

Steve

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 03 Apr 2023 at 13:30
Hi Makem1977, well you and I are in the same boat (almost). Mine came through as 4+4 = 8 as well, but in my case looks like the little cancer cell bas88rds have got into my vesticals and one local lymph node as well. PET scan for me after a 6 week wait, to see if it has spread anywhere else. In the meantime they have launched straight into Hormone Therapy (no choices) and started me on Bicalutamide (little white anti-androgen tablets). 11 days of those and then the first more heavy duty Zoladex injection next week. Also in the queue for the Oncology team, so they can tell me what they are planning in the way of Radiotherapy and who knows maybe even Chemo if I am unlucky! They are also recommending me for the "Pearl Trial" at St Luke's Royal Surrey which targets more of the Lymph nodes in the body as a preventative measure.

So that's the physical side. On the mental side is the real battle! The rest is in the hands of your medical team and they can just get on with it asap. Taking one day at the time, one appointment at a time and spending quality time with the wife, family and friends as much as possible. Positive mental attitude a must for this process if you can manage it, but you are allowed a few wobbles!

Cheers, David

User
Posted 03 Apr 2023 at 13:47

Hi Makem1977,

When you go through the decision process you need to consider your age. RT/ HT is statistically a good option however given that you have a long life ahead of you then you might find you are repeating the process. RP has a 30% chance of reoccurrence. 

I was of course given a choice of a wide range of treatment's RT/ RP and focal however was slightly nudged down the RP path explanation as above. However, in my case the MRI showed no capsule breach and my Gleason score was lower. You are right to discuss all options.

Edited by member 03 Apr 2023 at 13:52  | Reason: Not specified

User
Posted 03 Apr 2023 at 13:48

Hi David

Sorry to hear your news. Yes, same boat indeed. One in eight! Big and busy boat 😳.

Have you had the psma pet scan yet? They don't normally start HT until that's done as it hides psma! I had my psma scan then, results three days later, then Wham! Degarelix a few days on from that. Castrated in 3 days....at least once you're on HT you've time to sort treatment out. You are kind of parked as the cancer cells wither and shrink as their favourite fertilizer has been removed! Testosterone!

I hope you fare better than me on HT - maybe have a look at Andrew Gabriel's Surviving Hormone Therapy. Excellent resource. Maybe contact him (Andy62 on here?) to view it or find out when the next one is. If I can be of any help - let me know via PM.

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 03 Apr 2023 at 13:52

Originally Posted by: Online Community Member

Hi Makem1977,

When you go through the decision process you need to consider your age. RT/ HT is statistically a good option however given that you have a long life ahead of you then you might find you are repeating the process. RP has a 30% chance of reoccurrence. 

I was of course given a choice of a wide range of treatment's RT/ RP and focal however was slightly nudged down the RP path explanation as above.

Not sure RP best choice if his Gleason 8 is true....πŸ€”

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 03 Apr 2023 at 14:23
Gleason score makes no difference to suitability for RP
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Apr 2023 at 16:01

that is my gleason score read the letter most days just o make sure im not imagining it, now have one appointment in the diary with the surgeon , hope to also book with oncologist the same week to discuss, i know the hospital are also discussing my case in the MDT this week

User
Posted 03 Apr 2023 at 16:03

Good luck with everything Makem. πŸ˜ŠπŸ‘

User
Posted 05 Apr 2023 at 13:16

My embrace and all my solidarity for you, Makem. I greet you from Buenos Aires, Argentina. Remember that the only battle that is lost is the one that is abandoned. Do not despair! You are not alone!
Ed.

Edited by member 05 Apr 2023 at 16:14  | Reason: Not specified

User
Posted 20 Apr 2023 at 16:49

Update had my consultation with radiotherapist this week and have the surgeon tomorrow, as both are based in the same hospital, have a PET scan booked in for next week as well, as with what ever course / road i go down they will need one.

 

still so numb and hard to deal with it all thankful this community is here

User
Posted 20 Apr 2023 at 16:56

Hi Makem

I’m glad you’re starting to progress down your road to recovery. Do you feel at least a little better now you’ve started making practical moves towards a cure? I think I do … at least a little bit. 
I saw the surgeon today, nice guy and gave me plenty of time to ask and discuss. 

I hope things get easier for you soon and you start to feel more positive as things progress. 
Cheers

Greg. 

User
Posted 20 Apr 2023 at 19:41

Lyn, I agree with you in general but Gleason score does give you some initial assessment of the possibilities (may be not a good thing because it can cause unnecessary anxiety). The following table may be of some help when talking to specialists and when you are trying to make a decision for treatment:

https://res.cloudinary.com/pcf/image/upload/c_scale,w_720,h_230/fl_lossy/f_auto,q_auto/v1603746264/Gleason_1050x336.jpg?_i=AA

This information is from Prostate Cancer Foundation (pcf.org)

Administrator: Please don't hesitate to remove this link if you think it is more confusing than helpful. I understand, having had prostatectomy 12 years ago, how tough and hopeless the situation appears to a newly diagnosed men and their wives/partners and families.

User
Posted 20 Apr 2023 at 20:20
Good luck with your PET scan Makem. I have mine next week and whilst the scan itself is not a worry, the results are another kettle of fish!! But, let's stay positive and hope for the best outcomes. As to feeling numb, perhaps not a bad thing until all the tests and scans etc are done! Then when we know the full picture, we can get in the fight to win! Fingers crossed for you matey and keep your chin up! David
User
Posted 25 Apr 2023 at 12:05

thanks for all the advise still feeling low trying to be strong for  myself etc  but , know im on the right track, i think after initial consultation with the surgeon, brought it all home , with it is all real and getting things sorted, but when your told cancer is significant and could spread fast etc, so just want the PET scan to be green to get the surgery aspect up and running. already have potential surgery dates booked in as well and full knowdledge of what it entails and recovery etc

User
Posted 25 Apr 2023 at 12:20

Good luck with the PET scan Makem. Hopefully you’ll be under the knife very soon and on the road to recovery. 
I’ve got my pre-op assessment next Wednesday then they reckon could be as low as 1-2 weeks for the surgery … I’m like you at times too, switching between hoping to wake up and find it was all a bad dream .. then realising this sh*t’s getting real. 
We’ll get there though πŸ˜ŠπŸ‘

Take care

Greg. 

Edited by member 25 Apr 2023 at 12:42  | Reason: Typo

User
Posted 25 Apr 2023 at 12:27

thank you all the best your end as well, this is defo a roller coaster ride i do not like the emotion side i mean. treating it like a computer game on the next stage

Edited by member 25 Apr 2023 at 15:32  | Reason: Not specified

User
Posted 25 Apr 2023 at 12:43

πŸ˜ŠπŸ‘πŸ˜Š

User
Posted 25 Apr 2023 at 15:46

I know what you mean about the “computer game” bit … 😁

It is the only way to handle it though I think, one step at a time is easier to handle than thinking about the whole process over the next couple of years (or however long). For me personally, bite size chunks is the only way I can process it at the moment. 
I’m quite an avid gamer and when I’m playing on the hardest difficulty for a challenge I do take it slow and steady rather than charging in with all guns blazing … 😁

Cheers

Greg. 

User
Posted 04 May 2023 at 11:22

on to the next level , have surgery booked in for next wednesday, still mixed emotions but good to get to the next level, everyone out there going through the same , feel and with you all.

User
Posted 04 May 2023 at 11:55

That’s good news Makem. Glad you’re going in the right direction. 😊
I had my surgery pre-assessment yesterday and waiting for my letter to say if I’ve passed it or not. Hopefully I’ll not be far behind you. 
Good luck for Wednesday, let us know how you get on. 
All the best πŸ‘

Greg. 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK