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User

Posted 09 Jul 2017 at 17:42

Hi everyone

Three weeks ago i went to the docs for an MOT. Everything good except ..bad news PSA 17.2.

Not me ..swim 4 miles wevery week, eat well, dont smoke dont overdo drink or anything else?

Abstained from everythign then went for send opinion PSA 16.2 ...Surely not... I have NO symptoms.

The following 2 weeks have been a roller coaster ride to i dont know where :-( My kids are 16 and 13 my lovely wife 5 years younger very fit and loved to bits. Why me??????

MRI..then Biopsy confirmed cancer in 12 of the 14 samples. I am so upset.... probably googled way too much as well.

Been told it is contained as no sign in pelvic bones or Lymph glands but having full body bone scan shortly

I now have appts with Surgeon and Royal Surrey Guildford for discussion around Robotic surgery...Nerve sparing? etc..

and Radiologist... but not sure i want the nuclear stuff. Just get it out of me.

1.I am a big scardy cat

2.My Wood has ruled my life and been very active with my lovely wife....i am so worried that i will no longer be a man for her. :-(

I have joined this forum today because i need to connect with those that know. Please can anyone throw a glimmer of hope at me.

The thought of dribbling weee and having a floppy lifeless dick for my remaining years is almost making me contemplate the unthinkable of carrying on until i cant then ending it all. I know you will all say where there is life , etc, etc.but i am a man full of life and testosterone and i think with my dick..Wo that felt good already letting you all know whay an idiot i am :-)

User

Posted 09 Jul 2017 at 17:42

Hi everyone

Three weeks ago i went to the docs for an MOT. Everything good except ..bad news PSA 17.2.

Not me ..swim 4 miles wevery week, eat well, dont smoke dont overdo drink or anything else?

Abstained from everythign then went for send opinion PSA 16.2 ...Surely not... I have NO symptoms.

The following 2 weeks have been a roller coaster ride to i dont know where :-( My kids are 16 and 13 my lovely wife 5 years younger very fit and loved to bits. Why me??????

MRI..then Biopsy confirmed cancer in 12 of the 14 samples. I am so upset.... probably googled way too much as well.

Been told it is contained as no sign in pelvic bones or Lymph glands but having full body bone scan shortly

I now have appts with Surgeon and Royal Surrey Guildford for discussion around Robotic surgery...Nerve sparing? etc..

and Radiologist... but not sure i want the nuclear stuff. Just get it out of me.

1.I am a big scardy cat

2.My Wood has ruled my life and been very active with my lovely wife....i am so worried that i will no longer be a man for her. :-(

I have joined this forum today because i need to connect with those that know. Please can anyone throw a glimmer of hope at me.

The thought of dribbling weee and having a floppy lifeless dick for my remaining years is almost making me contemplate the unthinkable of carrying on until i cant then ending it all. I know you will all say where there is life , etc, etc.but i am a man full of life and testosterone and i think with my dick..Wo that felt good already letting you all know whay an idiot i am :-)

User

Posted 09 Jul 2017 at 21:03

IDM

Well, that was honest. Good for you. Sadly, erectile dysfunction is a reality for most of us. I had a prostatectomy with no nerve sparing. So, talk to your urologist about nerve sparing. I'm now on Invicorp 25 injections. Yep, it isn't great having to stick a needle in your dick, but it will be worth the momentary discomfort. Dry orgasms are different, but they're fine. But you and your wife will have to adjust, but I imagine she loves you for more than sex and will want to keep you alive. Incontinence wasn't and isn't an issue for me - it sorted itself out very quickly.

I can't comment on how radiotherapy affects erectile function and continence as I went down the prostatectomy route, but I'll probably need it in the future.

Hormone therapy affects your sex drive and is the one I dread the most if ever I need it.

I have two teenage children so I know how you feel, but being part of this forum has taught me that I've got years left.

Many members have a great knowledge of the various treatment plans but they'll also ask for your Gleason grade and TNM if you've been told that yet. That will make it easier for them to comment.

Yes, everything looks dark and life will change, but you've years of life ahead.

Ulsterman

User

Posted 09 Jul 2017 at 23:39

A very honest post and exactly how my husband and I felt.. Reading the stats and going woah!

What is your Gleason diagnosis?

My husband had an option of Active surveillance or RP or radiotherapy but opted for a private treatment in the USA.

However he was a Gleason 6(3+3 ) so at the low risk end og diagnosis ( but with a large tumour.

Tough times but stick together.

Regards

Clare

User

Posted 10 Jul 2017 at 08:27

Hi Ian
Read my profile I was diagnosed January 2014 having watched my Dad die of the disease September 2013

There is hope I had prostatectomy 31.03.2014 Over 3 years now I'm very fit and active no incontinence I have Normal erections only difference from before the operation is penis size it's considerably smaller due to operation this was a side effect I was not told about. Having said that if I had been told would still have gone ahead with operation.

I have just had latest PSA result yesterday and it has come back undetectable like all previous results it gets no easier waiting for the PSA results (very stressful) but small price to pay not to have to go through suffering my Dad indured with this horrible disease.

I don't take anything for granted but so far so good

Hope this helps good luck going forward

Frank

User

Posted 13 Jul 2017 at 11:44

Hi there

It's a terrible time for you and your wife without doubt. My story is similar .
Diagnosed at 44, Gleason 7, PSA 8, no symptoms whatsoever just an experienced GP giving me a mid life MOT

Because of my age and fitness I was offered robotic surgery route, and fully informed about all possible side effects as well as fully informed about other options
I chose surgery, I wanted it removed and I thought that if I chose radiotherapy then it might return - if I developed cancer cells once, then I'd be likely to develop them again if I kept my prostate gland

I had the surgery 3 years ago, margins clear, lymph nodes removed - also clear

Incontinence happened of course but after 6-7 weeks this disappeared completely.

ED of course 🙁
But using daily cialis and a pump to keep the blood flowing, after 6 months erections good enough for sex returned and shortly after that full function again,

Unlike some others who have lost penis size, I'm pleased to say mine is just the same as it was thankfully, whether that's down to remaining as sexually active as I could (i masturbated to climax every day after about 2 weeks post op- to keep the nerves active )

PSA is still <0.1 and 6 monthly checks continue

All in all I'm in a far better place than I expected to be when diagnosed - but also still feel the creeping "fear" that I will be told in future that my PSA has risen

But till then - it's fingers crossed and enjoying life to the full

It's been a rollercoaster ride all right, but there is some hope for people in your scared position of a shock cancer diagnosis

User

Posted 30 Jul 2017 at 18:05

Hi my partner and me in very similar situation can relate so much to you, age 50 fit healthy routine blood psa of 22, saw consultant had biopsys 10 taken and 3 came back positive gleason6 was hopeful at this point, he had mpmri which showed another larger area for concern base of.prostate and repeat psa elavated to 27. More biopsys 4days ago awaiting results, im his partnet of 27years age 47, we have one daughter 26 no grandkids etc, my other half is exactly the same as you just wants to avoid the prospect of surgery or anything that might make him feel less of a man( his words not mine) the thought of catheters incontinence erectile dissfunction seem to him worse then having cancer in him, i cant seem to reassure him at all that if hes told hes best to have radical prostectomy that we.l deal with it together, hes got his mind set on active surveilance, ive told him to prepare that it might not be an option, hes like you wants to hang on to all his bits and peices,haha, he doesnt want to know the facts statistics hasnt read up not read the tool kit at least your informed, he just asks me what i thinks best, were both usually realistic people optimistic but this last 8weeks has been awful so many ups and downs and tests and waiting, hes more bothered about it impacting on my life says i shouldnt have to have this going on..im sure your wife feels the same as me we just want you to be well, alive and free from cancer, i can deal with the consequences as they come as im sure your wife can, us women are made of strong stuff, we have a natural instinct to protect our family whatever the side effects..my thoughts are with you and your wife..jo.t

User

Posted 30 Jul 2017 at 18:53

Hi and welcome,

It's not very nice to hear your doctor telling you you have PC and it does come as a big shock,you have not said what your Gleason score was and it does make a lot of difference with your choice of procedures.

I was PSA 2.19 Gleason 3+4 =7 and looked at radical surgery and Brachytherpy and after reading up on the after affects i went for the brachytherapy and i am ten months on PSA dropping and have been signed off for six months till my next blood test in January but very happy with the results, click on my avatar for my journey so far.

Make sure you look at all the choices speak to other members on here and read up as much as you can about all the side affects for all procedures.Good Luck

John.

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User

Posted 09 Jul 2017 at 21:03

IDM

Well, that was honest. Good for you. Sadly, erectile dysfunction is a reality for most of us. I had a prostatectomy with no nerve sparing. So, talk to your urologist about nerve sparing. I'm now on Invicorp 25 injections. Yep, it isn't great having to stick a needle in your dick, but it will be worth the momentary discomfort. Dry orgasms are different, but they're fine. But you and your wife will have to adjust, but I imagine she loves you for more than sex and will want to keep you alive. Incontinence wasn't and isn't an issue for me - it sorted itself out very quickly.

I can't comment on how radiotherapy affects erectile function and continence as I went down the prostatectomy route, but I'll probably need it in the future.

Hormone therapy affects your sex drive and is the one I dread the most if ever I need it.

I have two teenage children so I know how you feel, but being part of this forum has taught me that I've got years left.

Many members have a great knowledge of the various treatment plans but they'll also ask for your Gleason grade and TNM if you've been told that yet. That will make it easier for them to comment.

Yes, everything looks dark and life will change, but you've years of life ahead.

Ulsterman

User

Posted 09 Jul 2017 at 21:45

Hi Ian and welcome to this forum though sorry for the reason that brings you here.

As you are now aware, some men who have been diagnosed with Prostate Cancer (PCa) have none of the likely symptoms. It is for this reason that many of us advocate all men being offered a PSA test at 50 or earlier if they are more at risk with PCa or breast cancer in their families or are of Afro Caribbean descent . This would provide early warning for some who are affected, although some men younger than this would be missed and the PSA test can produce false positives and negatives.

The first thought to cut out the Prostate is one that many feel and it may be a good option if your cancer is confined. However, there are pros and cons to all treatments and potential side effects. I would recommend that you obtain a copy of the 'Toolkit' by going to the publications section of this Charity. You may then find you are in a better position to discuss your options with your consultants.

Whatever transpires and nothing is certain, I would hope your love for your family will be of greater concern than any loss of sexual function which in any event can to some extent be improved by artificial means in need. There are a number of men about your age and beyond who become impotent naturally and not because of PCa treatment without a thought of 'ending it all' . The vast majority learn to live with it!

Barry

User

Posted 09 Jul 2017 at 23:39

A very honest post and exactly how my husband and I felt.. Reading the stats and going woah!

What is your Gleason diagnosis?

My husband had an option of Active surveillance or RP or radiotherapy but opted for a private treatment in the USA.

However he was a Gleason 6(3+3 ) so at the low risk end og diagnosis ( but with a large tumour.

Tough times but stick together.

Regards

Clare

User

Posted 10 Jul 2017 at 08:27

Hi Ian
Read my profile I was diagnosed January 2014 having watched my Dad die of the disease September 2013

There is hope I had prostatectomy 31.03.2014 Over 3 years now I'm very fit and active no incontinence I have Normal erections only difference from before the operation is penis size it's considerably smaller due to operation this was a side effect I was not told about. Having said that if I had been told would still have gone ahead with operation.

I have just had latest PSA result yesterday and it has come back undetectable like all previous results it gets no easier waiting for the PSA results (very stressful) but small price to pay not to have to go through suffering my Dad indured with this horrible disease.

I don't take anything for granted but so far so good

Hope this helps good luck going forward

Frank

User

Posted 13 Jul 2017 at 11:44

Hi there

It's a terrible time for you and your wife without doubt. My story is similar .
Diagnosed at 44, Gleason 7, PSA 8, no symptoms whatsoever just an experienced GP giving me a mid life MOT

Because of my age and fitness I was offered robotic surgery route, and fully informed about all possible side effects as well as fully informed about other options
I chose surgery, I wanted it removed and I thought that if I chose radiotherapy then it might return - if I developed cancer cells once, then I'd be likely to develop them again if I kept my prostate gland

I had the surgery 3 years ago, margins clear, lymph nodes removed - also clear

Incontinence happened of course but after 6-7 weeks this disappeared completely.

ED of course 🙁
But using daily cialis and a pump to keep the blood flowing, after 6 months erections good enough for sex returned and shortly after that full function again,

Unlike some others who have lost penis size, I'm pleased to say mine is just the same as it was thankfully, whether that's down to remaining as sexually active as I could (i masturbated to climax every day after about 2 weeks post op- to keep the nerves active )

PSA is still <0.1 and 6 monthly checks continue

All in all I'm in a far better place than I expected to be when diagnosed - but also still feel the creeping "fear" that I will be told in future that my PSA has risen

But till then - it's fingers crossed and enjoying life to the full

It's been a rollercoaster ride all right, but there is some hope for people in your scared position of a shock cancer diagnosis

User

Posted 30 Jul 2017 at 18:05

Hi my partner and me in very similar situation can relate so much to you, age 50 fit healthy routine blood psa of 22, saw consultant had biopsys 10 taken and 3 came back positive gleason6 was hopeful at this point, he had mpmri which showed another larger area for concern base of.prostate and repeat psa elavated to 27. More biopsys 4days ago awaiting results, im his partnet of 27years age 47, we have one daughter 26 no grandkids etc, my other half is exactly the same as you just wants to avoid the prospect of surgery or anything that might make him feel less of a man( his words not mine) the thought of catheters incontinence erectile dissfunction seem to him worse then having cancer in him, i cant seem to reassure him at all that if hes told hes best to have radical prostectomy that we.l deal with it together, hes got his mind set on active surveilance, ive told him to prepare that it might not be an option, hes like you wants to hang on to all his bits and peices,haha, he doesnt want to know the facts statistics hasnt read up not read the tool kit at least your informed, he just asks me what i thinks best, were both usually realistic people optimistic but this last 8weeks has been awful so many ups and downs and tests and waiting, hes more bothered about it impacting on my life says i shouldnt have to have this going on..im sure your wife feels the same as me we just want you to be well, alive and free from cancer, i can deal with the consequences as they come as im sure your wife can, us women are made of strong stuff, we have a natural instinct to protect our family whatever the side effects..my thoughts are with you and your wife..jo.t

User

Posted 30 Jul 2017 at 18:53

Hi and welcome,

It's not very nice to hear your doctor telling you you have PC and it does come as a big shock,you have not said what your Gleason score was and it does make a lot of difference with your choice of procedures.

I was PSA 2.19 Gleason 3+4 =7 and looked at radical surgery and Brachytherpy and after reading up on the after affects i went for the brachytherapy and i am ten months on PSA dropping and have been signed off for six months till my next blood test in January but very happy with the results, click on my avatar for my journey so far.

Make sure you look at all the choices speak to other members on here and read up as much as you can about all the side affects for all procedures.Good Luck

John.

User

Posted 01 Aug 2017 at 20:26

Thank you....I have only just picked up on this again as I have been continuing my roller coaster ride. Gleason 4+3. N0. T2. Meeting with surgeon that has done 3000 RP ops. Next week.

Opting for Davinci robotic RP.. just so worried that he will take the nerve bundles.

Your words are really good as they remind me that this is really about life.

Thanks again

Ian

User

Posted 01 Aug 2017 at 20:32

Thanks J.T and Kayaker Bill and John the print

One thing I am learning is that this is way more common than any of us realise.

Why...what's the cause.?

Or is it random

KR

Ian

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