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User
Posted 28 Jan 2019 at 00:35

Evening all.  

I'm a young thinking 58 year old London based bloke, and was diagnosed 10 days ago.  At treatment options meetings a few days later, I had a pretty strong steer towards RARP as the best treatment, and my next consultant meeting and pre-op assessment are coming up at the end of this week.

Since diagnosis, I've had a look in this community every day, usually when trying to calm the newbie nerves, and to get my head around some of the worrying things that have been cropping up in my racing mind.  This has already been a help, even in the cases when the info I've read has been hard to take in at first.  So I already owe many of you a big 'cheers' for the info, frankness and support thats going on out there.  I commit to engaging, and doing my best to add value whenever I can.

Right now, I'd really value some clarity and experience-based advice to build on and help make sense of some of what I feel is 'vagueness about the scary stuff' in a lot of the literature that's out there.

I totally understand that treatment is about beating the cancer, and RP is needed to give me the best chances going forward.  However the things really worrying me so far, and I feel a bit shallow saying it, are all the male self-esteem things, for example the chances of getting nerve sparing surgery, and then post-op experiences like incontinence (with and post-catheter), penis shortening, and then availability, timing and ease (or otherwise) of access to support for penile rehab and ED etc.

Are there any postcode lotteries or policies or practices to watch out for that might delay or prevent good support (in any form) from happening at all, or as soon as might be beneficial?  How useful are GPs for support?  Where are the best places to get help?

I want to live, go into surgery as calmly as I can, and stay as positive as possible, and also not feel like half a man, and I reckon I won't be alone with these feelings.  Maybe, to help me adjust, I need some counselling and/or a really good support group.  All and any experiences, comments, pointers or suggestions about any of the above, or anything else for that matter, would be really valuable.  I don't know what I don't know.

Thanks very much in advance for reading this and maybe talking to me.  I'm looking forward to hearing from you.

All the very best with your own journeys,

Skin

User
Posted 28 Jan 2019 at 06:38
Hi Skin

All the same fears I had tbh when 48 at surgery. I wish I could just speak to people face to face now as I don’t have the time to reply to your post in full but feel I have all the info you want in a 45 minute chat. I’ve just woken for work so will reply later. Click my picture and read my profile. I’m getting on for 4 yrs post op , and if the surgery had been successful I’d be a very happy person with total recovery in all areas I promise. Sadly it didn’t get all the cancer and was too late. Just remember that recovery is a very very long haul but possible. Yes eventually it seems your penis will be 1 to 2” shorter with no ejaculate. Nerve sparing is more or less essential if you ever want normal function. Post code can be a problem. Return of function needs to be massively self driven even if you have an ED clinic to go to. You really have to man up and face up to the inevitable loss of erection and then put a lot of hard work in over a long period to get some returns. There is no easy way with this cancer side effects wise. And yes a councellor has been essential for me but I pay myself. It seems continence problems post surgery are getting less but not guaranteed. I was dry very quickly. Some poor souls take forever to recover. I’m gonna have to go. Best wishes mate and stay in touch on here. All your questions will be answered

If life gives you lemons , then make lemonade

User
Posted 28 Jan 2019 at 08:40
Cheers for your top reply, Chris. It's great to get a quick one and know I'm not alone. I'll follow your advice, and message you later today, if thats ok.

All the best,

Skin

User
Posted 28 Jan 2019 at 18:17

Originally Posted by: Online Community Member

Not being nosey but if your financially OK or have a health insurance etc try to get the operation treatment at a private clinic .

 

Some of Dark Rainbow's advice is good but not the comment about going private. Men considering the private route need to be aware that it may take away some very important after-care services and support. For example, in many (but not all) regions, men who have the RP privately have no access to the clinical nurse specialist, incontinence nurses, physiotherapy or ED clinic. We paid for John to have his op with the surgeon who was already caring for other family members on the NHS but then had to fight for things like GP follow up, ED nurse referral and (like DR) the nurse specialist has never returned a phone call in 10 years. 

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

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User
Posted 28 Jan 2019 at 06:38
Hi Skin

All the same fears I had tbh when 48 at surgery. I wish I could just speak to people face to face now as I don’t have the time to reply to your post in full but feel I have all the info you want in a 45 minute chat. I’ve just woken for work so will reply later. Click my picture and read my profile. I’m getting on for 4 yrs post op , and if the surgery had been successful I’d be a very happy person with total recovery in all areas I promise. Sadly it didn’t get all the cancer and was too late. Just remember that recovery is a very very long haul but possible. Yes eventually it seems your penis will be 1 to 2” shorter with no ejaculate. Nerve sparing is more or less essential if you ever want normal function. Post code can be a problem. Return of function needs to be massively self driven even if you have an ED clinic to go to. You really have to man up and face up to the inevitable loss of erection and then put a lot of hard work in over a long period to get some returns. There is no easy way with this cancer side effects wise. And yes a councellor has been essential for me but I pay myself. It seems continence problems post surgery are getting less but not guaranteed. I was dry very quickly. Some poor souls take forever to recover. I’m gonna have to go. Best wishes mate and stay in touch on here. All your questions will be answered

If life gives you lemons , then make lemonade

User
Posted 28 Jan 2019 at 08:40
Cheers for your top reply, Chris. It's great to get a quick one and know I'm not alone. I'll follow your advice, and message you later today, if thats ok.

All the best,

Skin

User
Posted 28 Jan 2019 at 09:18

Hello Skin

 

Sorry to see you here but welcome nonetheless.

Read, read and read again. Forums are great places for fellow-sufferer support, both emotional and procedural, but they’re not a substitute for specialist medical opinion or advice, so always remember that.

in view of your stated worries, I attach a recent publication you may find reassuring.

 

best of luck

 

https://www.ncbi.nlm.nih.gov/pubmed/25270277

User
Posted 28 Jan 2019 at 09:47
You may not be able to private message for a while as you are a new member. But feel free when you can to contact me. A good read for you is a post on here called ‘ erecting the erection-medication’ by jonny. Try search that up. I’m right in the throes of bone scan and another full CT and psa of 82 and climbing so I’m in a bit of a state myself , as otherwise I’m healthy fit working and making love at will. Don’t want it all to go t*ts up again tbh

If life gives you lemons , then make lemonade

User
Posted 28 Jan 2019 at 09:55

Good Morning Skin 

Sorry for you being your here 

I had a RP Operation last year December, same as you even more than you !  I had no idea about Magic words or Prostate, 3+4=7 ,cathere, incontinence,,endless trips night times the the bathroom, pads, medicines, ED,dry orgasm, pumbs etc.

I live on my own with help of friends I lived day by day passed difficult periods of Christmas ,New year etc.I have no relatives in the UK and immediate family members all passed away anyway .

When you are on your own its hard.really hard,even when you try to communicate with good helpful people here they misunderstood you some ways kinda cynical feelings I passed them on. 

I had met with a nurse last year October she told me that she is my key nurse but since than  that she blew my head with a cancer news I have heard nothing from her at all.f...all !

 

Counselling I did not needed really You can get on this website better support than in your local magie s or citizen advice bureau etc.

I'm a positive guy but a bit softie I bothered good people from here with my little issues, such as pain on my tummy (answer were REST.REST.AND RESPECT FOR YOUR BODY)

I'm a generally a positive guy, I like laugh jokes out door life ,animals,meeting with new people etc.but after the operation I thought I was going to die I was in massive pain .so with help of people from here those hard days are gone but still not over yet.

There are great people here I'm sure they will write to you Lynn,Cheshire Chris ,Bollinger, Amazon7 ,etc They are really really great supporting people They helped me emotionally more than my Key nurse more than my gorgeous  GP.

Stay on this website and ask any thing even for a little thing please ask.Im sure they would respond you and help you to get through hard times.

May I ask you This do you live on your own?

Do you have close friends whom can help you with shopping etc.remember that after the operation you won't be able to lifting a pint of milk for couple of weeks. 

Catheter is horrible thing but that's the journey we all have to go through I'm sorry.

Not being nosey but if your financially OK or have a health insurance etc try to get the operation treatment at a private clinic .

I was offered first at the London clinic that is based near baker st.but than had the operation at a NHS hospital. Wasn't my choice to change the venue .

Anyway as I mentioned previously I had and still have no idea about prostates operations terms and technical words. I learned  what I know all from here with help of great people from here whom tirelessly spending their times on here just to advise people like you and me. 

Once Cheshire Chris said..Remember this you had a major surgery it's a marathon not a sprint 

So do walk- exercise as much as you can but when you get pains stop and respect for your body.

I live on my own so I do food shopping my self but couple of weeks ago I couldn't carry a shopping bag that contained 3 kilogram weights than on here Lynn said..

Do your little shopping more than once do shopping  as little as possible your local shop keeper will love you :)

Or others asked me to get a bucket to keep it night time beside my bed so I could place the night bag in it. 

Get a fleeced type of track buttom, dressing gown etc.whilst you have  a catheter that is attached to your body it would be easy to walk in and around your house,flat.

Ohhh from my own experience if you decide to go ahead with RP operation make sure that after the operation 3-4 hours after that ask the nurses medical staff if they could make you walk .I'm sure they could try to make you walk .but if they don't please ask them to get you off the bed and help for walking. Its about blood cladding thing.

Injections on your legs easy. I had to do it 28 days.

Make sure indoors 1m paracetamol and Iburphone. 

I was discharged from the hospital they didn't give me them medicines but I was asked to get them from the community but where the F...! I could find them on a  December cold dark late evening in london whilst a catheter bag attached to my leg after a major surgery !

I was forced rushes to get RP operation by medical staff.Im not an expert at all but If they can cure you with RT so go ahead with it because  at least you can always change your mind.

my self after the RP Operation  early December still I'm not allowed to lift anything even a pint of milk so it's so annoying painful I wish that I hadn't go ahead really. I was not suffering badly All I said to my gorgeous GP  I'm having a feelings that I don't fully empty my bladder .so my gorgeous hot GP she advised me to MRI that came out with a malignancy something than biopsy came out with a cancer. To be honest I don't want ro live until age of 80 anyway why the hell I had to go through and still going  troubles...SEX life is over totally f....k up.

Dry orgasm is so weird.feel like no man anymore 

Erection...what is that!!!

Have to relay on viagra,cialis,pump etc.so my body will become a chemical warehouse. 

And from now on bum squeeze exercise will be our regular activities rest of our lives .

Please do not compare your self with me and with anybody. We all different. And ...Maccmillansa at university college of  London branch seems helpful for any kind of enquires 

Good luck. 

Dark R.

Ps.No More Kama Sutra for me ..Well not yet or too soon but Hopefully for you yes.

 

Edited by member 28 Jan 2019 at 21:24  | Reason: Correction

User
Posted 28 Jan 2019 at 18:17

Originally Posted by: Online Community Member

Not being nosey but if your financially OK or have a health insurance etc try to get the operation treatment at a private clinic .

 

Some of Dark Rainbow's advice is good but not the comment about going private. Men considering the private route need to be aware that it may take away some very important after-care services and support. For example, in many (but not all) regions, men who have the RP privately have no access to the clinical nurse specialist, incontinence nurses, physiotherapy or ED clinic. We paid for John to have his op with the surgeon who was already caring for other family members on the NHS but then had to fight for things like GP follow up, ED nurse referral and (like DR) the nurse specialist has never returned a phone call in 10 years. 

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

User
Posted 28 Jan 2019 at 21:51

Thanks to Super woman Lynn I learn new technical stuff from her :)

I thought when you have treatments at a private clinic You could get all the help that includes medicines, advises, care before and after the treatments ...obviously I was wrong. That mean grass is not always green from outside.

Thanks  to Superwoman Lynn 

D.R

Edited by member 28 Jan 2019 at 23:08  | Reason: Not specified

 
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