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User
Posted 02 Apr 2020 at 21:50

I don't know about all the other guys in this club , nor do I know of anyone to speak to, but since being diagnosed with this horrible disease ( 2 . 3  20 ) I can't knock the hospital as I only had the first blood test on the 16 .12 . 19 , and since then I have had two scans , biopsy done and two appointments with the consultant. I have also been allocated two cancer nurses  all these professionals have been very nice , telling me what I have and what's going to happen ( in my case removal of prostate ) everyone ask about my physical wellbeing no one has ever mentioned what's affecting the most my mental wellbeing. Everyone has said it is and I  quote treatable but what they forgot to mention how the prospect of having to live with a permanent erectile dysfunction is driving me mad . For me since being diagnosed no two days have been the same at times I find myself in a really dark place and having thoughts I never thought I would have . I don't know if its because I live on the Isle of Wight but I think there should be the choice of a male cancer nurse , maybe some of you guys have them but without sounding disrespectful the ladies I have seen they are very but can't put themselves in a mans shoes . I feel that I'm going to be a failure to my wife , she has been amazing  and has told me as long as I'm still here that's all that matters it doesn't make it any easier. Sorry to post such a gloomy message , but this doesn't come close to how I feel at the moment  .thanks to everyone who reads it 

Tim 

User
Posted 02 Apr 2020 at 21:50

I don't know about all the other guys in this club , nor do I know of anyone to speak to, but since being diagnosed with this horrible disease ( 2 . 3  20 ) I can't knock the hospital as I only had the first blood test on the 16 .12 . 19 , and since then I have had two scans , biopsy done and two appointments with the consultant. I have also been allocated two cancer nurses  all these professionals have been very nice , telling me what I have and what's going to happen ( in my case removal of prostate ) everyone ask about my physical wellbeing no one has ever mentioned what's affecting the most my mental wellbeing. Everyone has said it is and I  quote treatable but what they forgot to mention how the prospect of having to live with a permanent erectile dysfunction is driving me mad . For me since being diagnosed no two days have been the same at times I find myself in a really dark place and having thoughts I never thought I would have . I don't know if its because I live on the Isle of Wight but I think there should be the choice of a male cancer nurse , maybe some of you guys have them but without sounding disrespectful the ladies I have seen they are very but can't put themselves in a mans shoes . I feel that I'm going to be a failure to my wife , she has been amazing  and has told me as long as I'm still here that's all that matters it doesn't make it any easier. Sorry to post such a gloomy message , but this doesn't come close to how I feel at the moment  .thanks to everyone who reads it 

Tim 

User
Posted 02 Apr 2020 at 23:24
Hello Tim

I think most of the men on this forum have felt the way you do now, I know I did. However, nearly 18 months on things are more or less back to normal for me. My continence is to all intents and purposes back. I need to be careful when I am very fatigued or when undertaking some strenuous work or exercise. However it is not a problem and you will adapt. Whilst some men are not fortunate and do have long term problems, the majority will return to something like normal. I have not had any accidents and drink alcohol to a moderate extent without any problems. From what I can gather there has been nothing remarkable about my recovery and it is fairly typical in the majority of cases, although there are exceptions to this.

In relation to ED I think this will depend upon whether you have any nerve sparing. In my case the nerves on one side were preserved. I did not have any ED issues before the operation. Nearly 18 months on I am just about returning to spontaneous erections. With the aid of viagra or similar drugs ED issues can be overcome.If drugs don`t work there are other ways and means available. However, each persons recovery is different and some men do have issues, even if both sets of nerves are spared. Whilst there are no certainties, I don`t think that there has been anything remarkable about my recovery.

The whole experience was pretty grim, especially in the days following my diagnosis. My wife has been a part of my recovery and has been supportive throughout. I think in some respects it has even brought us closer together. I hope your operation goes well. You will find lots of good practical advice on this forum.I certainly did when I was in your position. See my profile for more info.

User
Posted 03 Apr 2020 at 00:39

This disease does affect people in different ways. It can also affect a person in different ways from one day to the next, mood swings are quite normal, particularly when you're on HT. 

I think the NHS staff are brilliant from a clinical point of view, and empathetic, but I never felt it appropriate to turn to them for emotional support. Hence I was not concerned whether the nurses were male or female. 

I honestly think this forum provides the best emotional support. Everyone here either has the disease or is a close family member of someone who has it. Pretty much any emotional turmoil you are going through, has already been experienced by someone on this forum, and thankfully they usual come forward to help. Another advantage of the forum is that it never gets tired of offering support, some members take a brake for a while but others step in. 

Just as I was typing this I see "zebulon" has posted, pretty much proving my point that, you will always get relevant, real support here. So don't worry about the lack of emotional support from the NHS; use this forum.

BTW, What is your gleason score and your T stage. It's only a month since your diagnosis and your treatment path seems to have been dictated to you, maybe you need to think about the side effects of different treatments and keep your options open. Nothing will be happening fast whilst we have covid.

My treatment path was also dictated to me, personally I was glad about that, as I would have found making my own choice a bit stressful. 

Dave

User
Posted 03 Apr 2020 at 10:47

Hi Tim,

Some men are hornier than others.  Your marriage and age can also come into your concerns.

You might get a good recovery.  Some do. If not there are ways to get help at an ED clinic.  Sometimes their suggestions aren't what you want.  I didn't want to stick a needle into mine.  There are tablets and they aren't all plain sailing either, as some get muscle pains.  Then there's the pump.  It works but isn't very elegant.

I tried to let nature take its course but it was very slow.  Buying my own £30 pump gave it a nudge but I'm not keen.  If I'm upright it will work itself but it doesn't react spontaneously.

One advantage is that dry sex is less messy whatever you're doing.

As for male nurses. I guess it can be easier talking to a bloke.  I've never met a male nurse though.

It's very early for you and I'd suggest you take early action if you're keen on doing the best you can.  Don't burst those stitches on the bladder or stomach though.

Regards Peter

Edited by member 03 Apr 2020 at 13:16  | Reason: Not specified

User
Posted 04 Apr 2020 at 00:03
Hi Tim. It’s been 6 months today since I had my prostatectomy at Southampton General. I have been very fortunate in that I am now fully continent and my erectile function is getting back to normal. I am taking 5mg of Cialis daily and using a pump supplied by the hospital to keep the old boy healthy (I had nerve sparing). The staff at the hospital have been great and my surgeon did an excellent job. The reason I am posting this is that I can remember the mental turmoil when I was diagnosed with prostate cancer and having to make the choice of which treatment to have. Remember if you choose RT that surgery is not an option if the cancer returns.
User
Posted 04 Apr 2020 at 05:46

Originally Posted by: Online Community Member
Remember if you choose RT that surgery is not an option if the cancer returns.

I think you should have said that if you choose RT surgery may not be an option subsequently if that treatment fails, but there are some surgeons prepared to remove an irradiated prostate, even though the treatment causes the margins of the gland to be less defined than surrounding tissue, and has turned to what has been described as ‘mush’.

Best of luck Tim.

Cheers, John.

User
Posted 01 Aug 2020 at 15:52

Hi Tim

i was diagnosed roughly about the same time as you and had robotic assisted radical prostatectomy on 12/6/20 home the day after catheter was due to be removed 2 weeks later but got a uti and was rushed back in for obs 

had to keep catheter in 4 weeks in total now 3 weeks after removal down to 2 pads a day with hardly any leakage on a night and just bits during day when over working myself on average 15/20 grams leakage a day thinking to risk no pad on a night 🤞

as for Ed things are starting to move in the right way 

so try and keep your chin up it is better out than in as I was told try and find someone local or that you know that’s had treatment there is more out there than you think I found that out 

mark

User
Posted 19 Aug 2020 at 15:19

Peace Love & Good Health to everyone here and everyone you care about.

Positive energy, kindness, love, we can all give more and can all receive more.

I know you are all incredible human beings

I know you are all in control of your own bodies

I know science has proven the power of our mind controls our bodies

Take control of yours

Our bodies have our back all our lives, make sure you are giving it what it needs when it needs us.

I wish one small act of kindness comes your way today

Show Most Thanked Posts
User
Posted 02 Apr 2020 at 23:24
Hello Tim

I think most of the men on this forum have felt the way you do now, I know I did. However, nearly 18 months on things are more or less back to normal for me. My continence is to all intents and purposes back. I need to be careful when I am very fatigued or when undertaking some strenuous work or exercise. However it is not a problem and you will adapt. Whilst some men are not fortunate and do have long term problems, the majority will return to something like normal. I have not had any accidents and drink alcohol to a moderate extent without any problems. From what I can gather there has been nothing remarkable about my recovery and it is fairly typical in the majority of cases, although there are exceptions to this.

In relation to ED I think this will depend upon whether you have any nerve sparing. In my case the nerves on one side were preserved. I did not have any ED issues before the operation. Nearly 18 months on I am just about returning to spontaneous erections. With the aid of viagra or similar drugs ED issues can be overcome.If drugs don`t work there are other ways and means available. However, each persons recovery is different and some men do have issues, even if both sets of nerves are spared. Whilst there are no certainties, I don`t think that there has been anything remarkable about my recovery.

The whole experience was pretty grim, especially in the days following my diagnosis. My wife has been a part of my recovery and has been supportive throughout. I think in some respects it has even brought us closer together. I hope your operation goes well. You will find lots of good practical advice on this forum.I certainly did when I was in your position. See my profile for more info.

User
Posted 03 Apr 2020 at 00:39

This disease does affect people in different ways. It can also affect a person in different ways from one day to the next, mood swings are quite normal, particularly when you're on HT. 

I think the NHS staff are brilliant from a clinical point of view, and empathetic, but I never felt it appropriate to turn to them for emotional support. Hence I was not concerned whether the nurses were male or female. 

I honestly think this forum provides the best emotional support. Everyone here either has the disease or is a close family member of someone who has it. Pretty much any emotional turmoil you are going through, has already been experienced by someone on this forum, and thankfully they usual come forward to help. Another advantage of the forum is that it never gets tired of offering support, some members take a brake for a while but others step in. 

Just as I was typing this I see "zebulon" has posted, pretty much proving my point that, you will always get relevant, real support here. So don't worry about the lack of emotional support from the NHS; use this forum.

BTW, What is your gleason score and your T stage. It's only a month since your diagnosis and your treatment path seems to have been dictated to you, maybe you need to think about the side effects of different treatments and keep your options open. Nothing will be happening fast whilst we have covid.

My treatment path was also dictated to me, personally I was glad about that, as I would have found making my own choice a bit stressful. 

Dave

User
Posted 03 Apr 2020 at 06:08
I have messaged you !
User
Posted 03 Apr 2020 at 10:47

Hi Tim,

Some men are hornier than others.  Your marriage and age can also come into your concerns.

You might get a good recovery.  Some do. If not there are ways to get help at an ED clinic.  Sometimes their suggestions aren't what you want.  I didn't want to stick a needle into mine.  There are tablets and they aren't all plain sailing either, as some get muscle pains.  Then there's the pump.  It works but isn't very elegant.

I tried to let nature take its course but it was very slow.  Buying my own £30 pump gave it a nudge but I'm not keen.  If I'm upright it will work itself but it doesn't react spontaneously.

One advantage is that dry sex is less messy whatever you're doing.

As for male nurses. I guess it can be easier talking to a bloke.  I've never met a male nurse though.

It's very early for you and I'd suggest you take early action if you're keen on doing the best you can.  Don't burst those stitches on the bladder or stomach though.

Regards Peter

Edited by member 03 Apr 2020 at 13:16  | Reason: Not specified

User
Posted 03 Apr 2020 at 19:53
Hello Tim , you on the island are you being looked after at Southampton general ? Yes what are you psa /biopsy readings ? Weren’t you given a choice of treatments ? or just told removal was the way to go ? Everyone approaches pca. in different ways , what really helped me was the fact I knew so many men who had it they gave me a lot of advice , I went down the route of ht/rt
User
Posted 03 Apr 2020 at 19:53
Hello Tim , you on the island are you being looked after at Southampton general ? Yes what are you psa /biopsy readings ? Weren’t you given a choice of treatments ? or just told removal was the way to go ? Everyone approaches pca. in different ways , what really helped me was the fact I knew so many men who had it they gave me a lot of advice , I went down the route of ht/rt
User
Posted 04 Apr 2020 at 00:03
Hi Tim. It’s been 6 months today since I had my prostatectomy at Southampton General. I have been very fortunate in that I am now fully continent and my erectile function is getting back to normal. I am taking 5mg of Cialis daily and using a pump supplied by the hospital to keep the old boy healthy (I had nerve sparing). The staff at the hospital have been great and my surgeon did an excellent job. The reason I am posting this is that I can remember the mental turmoil when I was diagnosed with prostate cancer and having to make the choice of which treatment to have. Remember if you choose RT that surgery is not an option if the cancer returns.
User
Posted 04 Apr 2020 at 05:46

Originally Posted by: Online Community Member
Remember if you choose RT that surgery is not an option if the cancer returns.

I think you should have said that if you choose RT surgery may not be an option subsequently if that treatment fails, but there are some surgeons prepared to remove an irradiated prostate, even though the treatment causes the margins of the gland to be less defined than surrounding tissue, and has turned to what has been described as ‘mush’.

Best of luck Tim.

Cheers, John.

User
Posted 01 Aug 2020 at 11:22
Jayman, you have been a member two minutes - I will report every post you make. Selling snake oil is against the rules of the forum, as is the naming of medical professionals ... not that these people you are raving about could really be considered medical professionals.

You are spinning spiders' webs to vulnerable people - we don't need it here.

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

User
Posted 01 Aug 2020 at 11:50

Please feel free to report me if I have spoken out of line, that is never my intention.

I agree with you totally regarding selling anything to vulnerable people is a no go.

I have nothing to sell.

What I do have is a passion to share my experience with people who may be suffering like my Uncle was. We had our lives turned upside down and then fixed again due to brave people (who themselves had suffered massively) speaking out. 

And I, like you, initially reacted quite cynically to what they were saying. Even though I had no knowledge to back up my cynicism and it was at that point I decided to do my own research to debunk the people that had planted a seed of hope in my uncle's head. I firstly researched what cancer actually is, I then switched my focus to what we are told are the 2 main ways to treat cancer, chemo & radiotherapy, what they are made of and how they work within our bodies.

I then studied the work of the previously mentioned medical professionals 2 of the 3 who are credited with being pioneers in the Cancer research field specifically their work with the Endocannabinoid system.

I then after educating myself drew my own conclusion and had to be honest with myself.

I had been wrong.

I appreciate you are clearly looking out for people, I was looking out for my Uncle when I was telling him that he should just do the 'active' radiotherapy but I thank god for his bravery as his dr has admitted if he had not taken the route he did then it is highly unlikely he would be with us now.

I do not know what snake oil is.

I don't know how to spin webs.

I will keep telling people about my uncles story as I now feel it's my duty especially after being one of the people who without any education or right to cast an opinion was so adamantly against him trying something natural which caused him no negative side effects or any pain.

I appreciate you LynEyre 

User
Posted 01 Aug 2020 at 12:21
That's lovely but I don't appreciate you. This is spam.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Aug 2020 at 12:39

you are of course entitled to your opinion and I respect you for it.

However, I am not a spammer.

I will continue to scream from the rooftops as we all should do when we find information that may help other people who are suffering.

You seem like a great person LynEyr and I will continue to wish you all the best.

I am happy to discuss/debate with you what I learnt and will be happy to learn from you also as I am sure there is plenty I could learn from you.

 

User
Posted 01 Aug 2020 at 13:18

Had a look at the video (in a sandbox of course) because it goes through a dodgy referall link.

Looks just like an Amway presentation even down to the cold calling first post.

AllI can say is https://www.youtube.com/watch?v=duFierM1yDg.

Edited by member 01 Aug 2020 at 13:19  | Reason: Not specified

User
Posted 01 Aug 2020 at 14:53

I think everyone will see this for what it is and like all other time wasters this person will get bored and go away. 

 

Ann

User
Posted 01 Aug 2020 at 15:52

Hi Tim

i was diagnosed roughly about the same time as you and had robotic assisted radical prostatectomy on 12/6/20 home the day after catheter was due to be removed 2 weeks later but got a uti and was rushed back in for obs 

had to keep catheter in 4 weeks in total now 3 weeks after removal down to 2 pads a day with hardly any leakage on a night and just bits during day when over working myself on average 15/20 grams leakage a day thinking to risk no pad on a night 🤞

as for Ed things are starting to move in the right way 

so try and keep your chin up it is better out than in as I was told try and find someone local or that you know that’s had treatment there is more out there than you think I found that out 

mark

User
Posted 01 Aug 2020 at 17:20

Well Jim,

I did report you, and thankfully you are now entirely absent from my own "personal story".

Since you still seem to be in here, and at the risk of repeating myself, you have been doing a very good impersonation of a snake oil peddling troll.

If, as you claim, you are not peddler of snake oil I suggest you massively modify your behaviour PDQ.

The real Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 01 Aug 2020 at 22:21

I am devastated that people must have gone through some awful experiences to create such immediate cynicism as an initial response to another person.😞

I too have experienced let down when someone very close to me was in a vulnerable situation so can understand people's reactions.

However that being said I've also seen acts of kindness by complete strangers that keeps my faith in humanity.

*Removal of content*

I wish everyone the best and a pain free evening 🤞♥️

 

Edited by moderator 01 Aug 2020 at 22:51  | Reason: Not specified

User
Posted 19 Aug 2020 at 15:19

Peace Love & Good Health to everyone here and everyone you care about.

Positive energy, kindness, love, we can all give more and can all receive more.

I know you are all incredible human beings

I know you are all in control of your own bodies

I know science has proven the power of our mind controls our bodies

Take control of yours

Our bodies have our back all our lives, make sure you are giving it what it needs when it needs us.

I wish one small act of kindness comes your way today

User
Posted 20 Aug 2020 at 21:44

When I was diagnosed very scared, loads of support from friend and family but at night time when the head hit the pillow and eyes closed I became very scared!!!

I got fed up of the fear and decided to fight it!, I imagined I was a boxer and I started punching 7 bells of s*** out of my tumour, after some time the fear went away, I started swimming and when doing breast stroke I imagined the water was the cancer & I would  push the cancer to one side with my arms, also i do a lot of hill walking and would yet again imagine the tumour was on the sole of my boot when I was walking up hill, all the above helped me to generate loads of positivity and get me though

 

Mark 

User
Posted 29 Sep 2020 at 22:19

Hi Bakerboy, I hope your treatment is progressing and you've managed to get your head around the possible after effects.

I was disgnosed in June 2019 with advanced PC which had metastasized into the bones. My PSA at diagnosis was 562. I started hormone therapy immediately on diagnosis and then, in September 2019, started a course of chemotherapy which finished with a final treatment on New Years Eve (partied till late afterwards).

Soon after starting the hormone therapy my sex drive began to dissappear and the chemo sort of killed it off. I found that sildenafil (viagra) worked for me at first but gradually the desire for sex went away.

My wife and I have been married 46 years and, up until the cancer, had an active and enthusiastic sex life. We now have quite a lot of cuddles and every now and again I get the little blue pills out and I 'look after' my wife. Climaxing for me is , unfortunately, a thing of the past.

HOWEVER, we still have a fulfilling and loving relationship. We do loads of stuff together. We have a wonderful family. Our relationship has changed and adapted as relationships do over time.

Talk to your wife and keep talking to her. She will be just as worried about the situation as you are. If you feel crap, tell her and encourage her to share her worries with you. Use these message boards and ask as many questions as you need. The cancer nurses, male and female, have heard all the questions you want to ask before, so dont let your hang ups stop you asking.

Finally, good luck with the treatment. If you're unsure about the treatment suggested, ask questions and, if the answers don't convince you, ask more!

Incidentally, my PSA has been static at around 2 since chemo finished, and generally I'm feeling OK.

 
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