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

Notification

Error

Am I alone?

Email this conversation Print this conversation
User
Posted 14 May 2024 at 21:37

Hello everyone.   I have been following the threads in the website for a week or so, and finally got the courage to register.    I was diagnosed last month with localised prostate cancer Gleason (4+3) and since then i have been in a bit of a daze and state of denial.  I told my wife, but not our teenage children or anyone else.  I thought I would be able to manfully cope with the impact of the diagnosis and didnt want to bother anyone else with my troubles,  but am beginning to struggle with that.  I know we all have our own stories of how we arrived here, mine was a result of getting a health check up with my wife ( she was wanting one, so i got one too in support I suppose).  I am 56 and generally fit, go the gym twice a week, don’t drink much or smoke.   That resulted in a call back with a raised PSA (4.07), which led to an MRI scan, which led to a biopsy (not pleasant, whatever they say it is uncomfortable, and the side effects are shocking) to being told somewhat casually by the consultant that i had localised cancer.   That is a word you never want to hear, and even now it feels as though it is not me they are talking about.    Have just had a call from my consultant to say that the MDT has reviewed the biopsy and they seemed to have a general discussion that it might actually be (4+4- not sure how they can upgrade like that).   So, apart from feeling a bit isolated, very scared, worried for my family etc, i now have to see a consultant on Friday to discuss treatment options.    Like a lot of people i am very concerned about the side effects of incontinence and ED.   I got the feeling i was being steered towards surgery or RT, but have been reading a lot about focal therapy, which appears to have less side effects and keeps options open for later treatment if needed.  Has anyone had experience of this, and were you happy with it?     Thank you for letting me post this, i hope it is not too depressing a read, and i know everyone has their own story to bear, but to be honest am feeling scared and isolated and just wanted to see if i am not alone in this?  Thanks for reading this.    

User
Posted 14 May 2024 at 21:37

Hello everyone.   I have been following the threads in the website for a week or so, and finally got the courage to register.    I was diagnosed last month with localised prostate cancer Gleason (4+3) and since then i have been in a bit of a daze and state of denial.  I told my wife, but not our teenage children or anyone else.  I thought I would be able to manfully cope with the impact of the diagnosis and didnt want to bother anyone else with my troubles,  but am beginning to struggle with that.  I know we all have our own stories of how we arrived here, mine was a result of getting a health check up with my wife ( she was wanting one, so i got one too in support I suppose).  I am 56 and generally fit, go the gym twice a week, don’t drink much or smoke.   That resulted in a call back with a raised PSA (4.07), which led to an MRI scan, which led to a biopsy (not pleasant, whatever they say it is uncomfortable, and the side effects are shocking) to being told somewhat casually by the consultant that i had localised cancer.   That is a word you never want to hear, and even now it feels as though it is not me they are talking about.    Have just had a call from my consultant to say that the MDT has reviewed the biopsy and they seemed to have a general discussion that it might actually be (4+4- not sure how they can upgrade like that).   So, apart from feeling a bit isolated, very scared, worried for my family etc, i now have to see a consultant on Friday to discuss treatment options.    Like a lot of people i am very concerned about the side effects of incontinence and ED.   I got the feeling i was being steered towards surgery or RT, but have been reading a lot about focal therapy, which appears to have less side effects and keeps options open for later treatment if needed.  Has anyone had experience of this, and were you happy with it?     Thank you for letting me post this, i hope it is not too depressing a read, and i know everyone has their own story to bear, but to be honest am feeling scared and isolated and just wanted to see if i am not alone in this?  Thanks for reading this.    

User
Posted 14 May 2024 at 22:49

Hi Derek and Adrian,  thank you so much for taking the time to respond - it is such a relief to get some feedback.  I am really very grateful.   I have I am afraid rather got into a rabbit hole of looking online about treatments and options, and at times it feels very overwhelming.  I am hoping to get more of a steer on Friday from the consultant, if it is alright with the group i will keep in contact and lean on support from everyone here who seem very kind, and  supportive.   Matthew

User
Posted 15 May 2024 at 23:28

Thanks everyone for your kind words and support.   It makes a big difference.    I am seeing my consultant ( second one because I wanted to discuss the treatment options in detail with someone who does the surgery) on Friday.   He appears to specialise in surgery and FT so I hope to get a view on both options then.     Bit worried that my Gleason score was upgraded to 4+4 which apparently triggers a need for a bone scan but I’ll get more information on that too.     Just wanted to say a big thank you.  I have found out I am not alone. Even if it is in the internet.    M

User
Posted 14 May 2024 at 22:23

Hi Matthew,

I’m so sorry you find yourself here, but at least you’ve come to the right place for knowledge and support. the4e are so many knowledgable members on here and everyone knows EXACTLY what you’re going through, so don’t beat yourself up about the way you are feeling.
It’s such a shock when you’re diagnosed…and a bit of a whirlwind with tests, scans…and more scans, fingers, biopsy needles and so on. Then there’s the waiting…waiting on results and waiting on MDT deciding which treatment options to offer you, waiting on treatment starting. What I would say though is once you’ve got a treatment plan in place and learned that there’s life after PCa, you will start to feel better.

Despite great support from my family and close friends I still felt isolated…then I found this site and Maggies. I was so nervous when I made my first post but everyone on here was so supportive. There are also the specialist nurses you can phone and they are wonderful and take time to speak with you. Im great advocate of Maggies…it took 6 months for my wife to persuade me to go along…there I found men who just got how I felt, listened and offered advice and support.

So, be kind to yourself, give yourself lots of treats, do nice things with your family….all these will help you keep you’re mind from wandering.

All the best for your journey,

Derek

User
Posted 14 May 2024 at 22:42

Hi Matthew.

I'm so pleased that you were brave enough to post. Most of us have felt the way you're feeling. You will never feel alone or isolated here, there will always be someone to help and support you.

I had robotic surgery. I know nothing about focal therapy but I wish you the best of luck on your journey.

All the best mate.

User
Posted 15 May 2024 at 01:43

Hi Matthew, read this thread to get an idea of what questions to ask the consultant.

https://community.prostatecanceruk.org/posts/t29667-D-day-tomorrow#post285177

When you know your full diagnosis and what treatments may be suitable, you can start trying to make the best choice for you. None of the people on this forum are medics (well one is but he keeps a low profile). We will give you advice based on our own experience so each of us will probably give you quite a narrow view of things, but hopefully by taking all our varied narrow views you will be able to get a broad view of the disease and it's treatments. Obviously your medics who have seen your scans and results will be able to give far more precise advise than any of us.

Edited by member 15 May 2024 at 12:47  | Reason: Not specified

Dave

User
Posted 15 May 2024 at 21:45

Hi, I was your age when I was diagnosed, I was relatively fit and did the gym at least 2ce a week. I did explore focal therapy, even though it was not offered to me initially. The default option was RP, and I had to enquire about Focal Therapy. In the end I went with RP, this was approximately 2yrs ago. I still suffer with incontinence (bed time) and ED. The positive news is that PSA remains undetectable. I only discovered this forum the morning after my surgery, so I wonder if I would have still gone down the surgery route if I had been on this forum earlier.

I hope whatever route you decide is the best one for you.

Show Most Thanked Posts
User
Posted 14 May 2024 at 22:23

Hi Matthew,

I’m so sorry you find yourself here, but at least you’ve come to the right place for knowledge and support. the4e are so many knowledgable members on here and everyone knows EXACTLY what you’re going through, so don’t beat yourself up about the way you are feeling.
It’s such a shock when you’re diagnosed…and a bit of a whirlwind with tests, scans…and more scans, fingers, biopsy needles and so on. Then there’s the waiting…waiting on results and waiting on MDT deciding which treatment options to offer you, waiting on treatment starting. What I would say though is once you’ve got a treatment plan in place and learned that there’s life after PCa, you will start to feel better.

Despite great support from my family and close friends I still felt isolated…then I found this site and Maggies. I was so nervous when I made my first post but everyone on here was so supportive. There are also the specialist nurses you can phone and they are wonderful and take time to speak with you. Im great advocate of Maggies…it took 6 months for my wife to persuade me to go along…there I found men who just got how I felt, listened and offered advice and support.

So, be kind to yourself, give yourself lots of treats, do nice things with your family….all these will help you keep you’re mind from wandering.

All the best for your journey,

Derek

User
Posted 14 May 2024 at 22:42

Hi Matthew.

I'm so pleased that you were brave enough to post. Most of us have felt the way you're feeling. You will never feel alone or isolated here, there will always be someone to help and support you.

I had robotic surgery. I know nothing about focal therapy but I wish you the best of luck on your journey.

All the best mate.

User
Posted 14 May 2024 at 22:49

Hi Derek and Adrian,  thank you so much for taking the time to respond - it is such a relief to get some feedback.  I am really very grateful.   I have I am afraid rather got into a rabbit hole of looking online about treatments and options, and at times it feels very overwhelming.  I am hoping to get more of a steer on Friday from the consultant, if it is alright with the group i will keep in contact and lean on support from everyone here who seem very kind, and  supportive.   Matthew

User
Posted 14 May 2024 at 23:05

Originally Posted by: Online Community Member
 if it is alright with the group i will keep in contact and lean on support from everyone here

That's exactly what we would want you to do mate.

After diagnosis, it is natural to feel bewildered and anxious. Sometimes these feelings make it more difficult to remember what clinicians are telling you. I found it helped to ask for copies of all your consultants letters, scans and biopsy reports. 

Edited by member 14 May 2024 at 23:06  | Reason: Typo

User
Posted 15 May 2024 at 01:43

Hi Matthew, read this thread to get an idea of what questions to ask the consultant.

https://community.prostatecanceruk.org/posts/t29667-D-day-tomorrow#post285177

When you know your full diagnosis and what treatments may be suitable, you can start trying to make the best choice for you. None of the people on this forum are medics (well one is but he keeps a low profile). We will give you advice based on our own experience so each of us will probably give you quite a narrow view of things, but hopefully by taking all our varied narrow views you will be able to get a broad view of the disease and it's treatments. Obviously your medics who have seen your scans and results will be able to give far more precise advise than any of us.

Edited by member 15 May 2024 at 12:47  | Reason: Not specified

Dave

User
Posted 15 May 2024 at 07:33

Hi Matthew,

No, you're not alone. 

I found diagnosis a struggle and regret not joining this site until my operation. Talking to people definitely helps, especially on here. You could call the number at the top of this page or Macmillan, or both. 

For someone physically fit like yourself I think they will probably steer you towards surgery. As for questions to ask the consultant re surgery.. top of my list would be ED; can they spare your nerves? Mine were spared but it still took several months for erections to gradually return, so be prepared for the long haul. 

I had radiotherapy without HT in 2022 and found that pretty straightforward in comparison (not suggesting radiotherapy as a primary treatment would be easy though).

I haven't had any focal therapy so can't comment on that. 

Dave makes an excellent suggestion re questions to ask your consultant, hopefully your wife will be with you and will take plenty of notes as it may be difficult to take it all in.

This site is full of really nice caring people who have been through it, so feel free to post literally anything.

Good luck. 

Kev

Edited by member 15 May 2024 at 07:44  | Reason: Typo

User
Posted 15 May 2024 at 18:32

Hi Mathew, your suitability for Focal therapies may depend on your staging (T2a/T2b etc) and also the size and location of your cancer, but if you're an NHS patient your location in the country may also be a factor, as I think most of the focal practitioners are based in Southern England. It's definitely worth bringing up at your meeting on Friday to gauge your consultant's response to the idea.

From the details you have given it doesn't seem that there'd be any immediate rush to make a decision.

There are some men who have had focal therapies on the forum who will hopefully comment, but it's worth bearing in mind that the forum generally tends to have a bias towards less favourable outcomes, i.e. those who've had great success from whatever treatment they've had are more likely to have waltzed of into the sunset cancer free while those less fortunate are still here posting.

User
Posted 15 May 2024 at 21:45

Hi, I was your age when I was diagnosed, I was relatively fit and did the gym at least 2ce a week. I did explore focal therapy, even though it was not offered to me initially. The default option was RP, and I had to enquire about Focal Therapy. In the end I went with RP, this was approximately 2yrs ago. I still suffer with incontinence (bed time) and ED. The positive news is that PSA remains undetectable. I only discovered this forum the morning after my surgery, so I wonder if I would have still gone down the surgery route if I had been on this forum earlier.

I hope whatever route you decide is the best one for you.

User
Posted 15 May 2024 at 22:08

Hi Matthew,

Just to echo what others have said….
1. If possible take someone with you.
2. Write down any questions you have…you’ll be uptight and may forget to ask something important to you
3. Ask the consultant if you can record the meeting, it really helps. I was a bit naughty and just recorded it anyway on my phone and just used it in slow time to recall what was said.

Good luck,

Derek

User
Posted 15 May 2024 at 23:28

Thanks everyone for your kind words and support.   It makes a big difference.    I am seeing my consultant ( second one because I wanted to discuss the treatment options in detail with someone who does the surgery) on Friday.   He appears to specialise in surgery and FT so I hope to get a view on both options then.     Bit worried that my Gleason score was upgraded to 4+4 which apparently triggers a need for a bone scan but I’ll get more information on that too.     Just wanted to say a big thank you.  I have found out I am not alone. Even if it is in the internet.    M

 
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 ▲
©2025 Prostate Cancer UK