Just diagnosed and terrified.

User

Posted 22 Jun 2015 at 23:54

Originally Posted by: Online Community Member

Just a thought on the freezing of sperm. When I had testicular cancer the norm then was to insist on a vasectomy. I had started RT before the social worker came along and said was I offered the ability to freeze sperm. I hadn't been and with RT in motion that was it. I figured I had had a daughter and my son was on the way and so it was not going to be an issue. Just three years later I was a single parent of two very young children and if another relationship had come along where having children was important to my partner I could not do it.

As it happened it was enough to be single parent but it would have been nice to have the choice,

Hi Yorkhull

That is something I do seriously need to consider once again, I guess it is selfish of me to think only of me, I need to think of others too and the possibility of a new partner.

Maybe banking something and never using it, is better than not banking anything and wishing I had.

Thank you

User

Posted 23 Jun 2015 at 00:03

Originally Posted by: Online Community Member

After reading the posts everyone has so kindly taken the time to send me, I am wondering the following.

In the ED department, do things like Viagra, Cialis, Le Vitra, Pumps etc take time to work after surgery or do they just work say a few months post operation or when you feel up to it?

Or am I deluding myself that its not going to be that easy to just pop a pill and them something will start stirring, obviously with stimulation.

The way the nurse explained it to me was I will suffer from ED and this can be anywhere from 6 months to up to 3 years post surgery and if the nerves are sparred, but during this time such options above will help in that department, I am getting the feeling its not going to be as easy as that?

You guess correctly - it's not that straightforward. Some men are unfortunate and none of the treatments work, even with the nerves spared. For men with the nerves removed, the tablets will not work. The pump can be used almost as soon as the catheter is removed post-op but again, not everyone can get an erection with a pump and very few can have penetrative sex using the pump and rings.

My husband was refused brachy for being too young as well. He opted for open surgery instead.

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

User

Posted 23 Jun 2015 at 00:04

TOOOOOO OLD , no never to old Trevor was 51 when our first son was born , leaving a little in the bank for a rainy day even if you never use it , it will always be there if you change your mind.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jun 2015 at 11:47

Hi Raiden its Chris again. Just save some sperm. It's so easy and then u have total peace of mind. El and I were 43 when we had our little potato. And he's a little man now we are proud of.
Sixfoottwo s post is well worth a read and has been key in helping me. I am 1 week post op with nerve sparing so hopefully my post will be good for you to follow. I'll be frank and graphic on my recovery ok , as I'm that sort of guy. Also we are in the same age group mate
Sexual function recovery absolutely terrified me as you know. I didn't want ANYTHING to affect it. , but at the end of the day Raiden whatever treatment plan u choose is going to upset Mr Wriglys game plan. In the end I just had to accept it. And surgery became my only option in the end anyway. Already I'm learning to STOP dwelling on sex as its destructive to me. I'm looking forward to being closer to my wife and son , and then moving on from there. I'm happy to let u know what's going on ok
Chris

User

Posted 23 Jun 2015 at 12:30

Love the positivity in your post Chris and I expect it's a great help to Raiden, especially as you are in the same age range.

We can't control the winds - but we can adjust our sails

User

Posted 23 Jun 2015 at 13:15

Thanks Chris

I would welcome any progress updates from everyone however candid it may be. No point in sugar coating the truth, I'd rather get it first hand, that's what makes it more realistic.

I think I am going to spare some sperm, better to bank it and never need it than to have wished I did, only issue I have which I will need to discuss is that my sperm is still affected by the biopsy, I'm still a very rusty colour (sorry to be so blunt) so dont know if that will affect the potency of it. I guess they will look for little swimming raidens after I make the donation to check before anything goes ahead?

I do need to stop dwelling on sex but my concern is this, my partner and I have only been together about 3 months. She is older than me 52 with a high drive, already there has been the odd comment about how my function will be and going elsewhere which I didnt like, joking or not, no man wants to hear what she said, and its only been a week today sinse diagnosis.

So even if we dont make it and between us I dont think we will, the whole prospect of meeting someone in the future is something I just dont see happening, because at my age or our age its a pretty much a fundamental act and not something I would expect many woman at this age to go wiithout, I could be completely wrong but that's my feelings and worry about it.

User

Posted 23 Jun 2015 at 13:47

Yes this is horrible for you. Not a nice situation and I'm so very sorry for you genuinely mate.

The sperm gets back to normal in about 6 wks so you have plenty of time to save some sperm later. There is really no rush. I'm by no means an expert at relationships so can't guide you. However I know how I would feel about your partners comments and they would be the same feelings as most of the people on this forum.

I'm very scared in a long established relationship of ED issues , so the thought of suffering them with a potential new partner would I agree be daunting. The gurus on here might find u some old posts to help , and when the ladies find time they could help or guide you.

I'm not a huge believer in adages , and I am a glass half empty sort of person , but things DO always work out in the end one way or another , and humans are the most adaptive creatures on earth , and there is someone for everyone -- I'm living proof of that , poor Elaine

User

Posted 23 Jun 2015 at 13:56

Raiden,

Upfront and truthfully: sadly single guys from the outset or via marriage breakdowns do come on here saying how difficult finding a partner can be. However on a brighter note being young should help you recover from whatever treatment you choose. Plus ED is a talked about issue now rather than in my days of basically tough luck just be glad you’re breathing, next patient please. So it’s not unreasonable to expect improvements be that via surgery or meds in the future.

Ray

User

Posted 23 Jun 2015 at 14:13

Raiden, you may just become the kind of lover that many women dream of - unselfish, sensitive, giving more than receiving.

My dad, for whom ED has been total, started a new relationship and just explained early on that he had had cancer and as a result needs injections to have sex. By the time they booked a weekend away together, it had all been broached and was 'old news' so he didn't feel the need to explain himself when he disappeared off to the bathroom for a couple of minutes. They have been together for 10 years or more.

Our friend R, who I mention in my 'wife's story of ED' thread, got divorced when his OH had an affair soon after his op left him impotent. It was all his worst fears come to fruition. However, he very quickly met someone else and, like my dad, mentioned the side effect of treatment early on and that he needed help to get an erection. They have also been together for a number of years now.

http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001

Edited by member 23 Jun 2015 at 14:15 | Reason: Not specified

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

User

Posted 23 Jun 2015 at 15:16

Hi LynEyre

Thank you for sharing your post with me, I have just read it all, a very honest count of events indeed, must have taken a lot to put that all down to share with us all.

My heart is still beating so fast at the prospect of that being my reality soon... Geee :(

User

Posted 23 Jun 2015 at 15:49

I have just been reading about

ED1000 - Revolutionary Shockwave Treatment for Erectile Dysfunction

http://www.spirehealthcare.com/shawfairpark/clinics-and-services/ed-1000-for-erectile-dysfunction/

It does mention "There are currently no published studies on using ED-1000 for impotence due to other causes, such as prostate surgery"

Doesnt look cheap £2,200 with possible blood work costing a further £560

User

Posted 23 Jun 2015 at 16:00

You are getting way ahead of yourself, for post treatment outcomes that may not occur, for interventions that you may not even need. If you concentrate on "worst case scenario" your life will be miserable.

Most men recover something, a few within days or weeks, the majority within months or years, relatively few do not.

Sorry to hear that your relationship is less than satisfactory and may be short-lived, you are not the first to go through that, you won't be the last.

Why not wait and see what happens and then you can deal with whatever that is?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 23 Jun 2015 at 16:08

I agree with CB - you would do better to channel your efforts into finding out about the different treatment options. Just because brachy is off the table doesn't mean you have to go for the op. You might be able to have HIFU and don't discount normal RT without some research - the side effects of RT may be more to your liking as many of them come on slowly in future years (if at all)

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

User

Posted 23 Jun 2015 at 16:20

I note that in your first post you were almost discounting RT on the basis that if surgery fails you can have RT but if RT fails you can't have surgery. There are two things to note:

- it is almost true that you can't have surgery after RT - we do have one member that has had it this way round but generally speaking, it woulds be hard to find a surgeon willing to do it and the side effects tend to be much more guaranteed, partly because surgery after RT can't be nerve-sparing. It is also less likely to be successful as it is much harder to remove a mushy splodge of irradiated gland without leaving any behind.

- however, the thinking that surgery gives us two bites at the apple is flawed. Even with surgery followed by RT, the outcomes are poor. Not because RT is difficult after the op but because statistically, anyone who needs salvage treatment for PCa is less likely to ever get true remission.

The sensible thing is to focus on the treatment that you and your medics believe will give you the best chance of a cure; to my mind, choosing a treatment based on the choices left if it fails is like wearing plastic bags on your feet in case your boots leak rather than buying waterproof boots.

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

User

Posted 23 Jun 2015 at 17:52

Quote:

LynEyre; to my mind, choosing a treatment based on the choices left if it fails is like wearing plastic bags on your feet in case your boots leak rather than buying waterproof boots.

Sorry Raiden I know this is so serious but the above made me chuckle a lot. Listen to the people on here as they are experts. I've only been on the site 6 wks or so. Don't blow if u can help it. I know it's hard. Best wishes

User

Posted 23 Jun 2015 at 18:13

Raiden, you are definitely jumping the gun.
Don't go looking for trouble, it will find you quick enough if it's there at all. Don't trouble trouble till trouble troubles you !!!!

You have only been together for 3 months, she's older than you and is sexually high functioning and she must have thought/thinks she is one lucky lady to find a young man who can keep up with her!

She may really not have meant anything by the comment, other than a poor joke. Only you know what the real state of affairs are. As you feel that uncertain I get the impression that the relationship is based mainly on sex? If that is so then there may be the possibility that she will not be able to cope or help you to cope with the next few months. You never know, this may be a catalyst for formalising your relationship. If it isn't then you are young enough to start again when things settle, but don't write this relationship off just yet.

You are young, you have a good sex life so there is nothing definite to say that you won't make a good recovery and regain what MAY initially be lost.

My husband was 73 when he had his brachytherapy and he was already having problems in that area. Yes, he does have to take sildenafil (viagra) if we want intimacy but we can if we want to.

I am thinking of you. I am confident that your common sense will stop you worrying about the future until you know what you are dealing with. I hope so anyway.
All the best
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 23 Jun 2015 at 18:37

Raiden

I know the relationship thing can be really tricky but truly good relationships can conquer everything.

Lyn has said many women would be so happy to find a kind and considerate lover who puts his partners enjoyment right up there with their own. Absolutely 100% agree.

Many people joke about men being in touch with their feminine side, or Venus and mars stuff but in my opinion being able to talk about everything, what works and what does not being really honest and open and most important of all being able to laugh and dismiss any little accidents or at things that you try which don't actually work are what really matter . In a really fantastic relationship there is no such thing as failure.

If your current partner cannot work with you towards regaining a fabulous sex life together then I would say she does not really want mutual fun and satisfaction just her own ..

There are people out there who can make things work, Lyn has told you of two she knows and I know of several others. In fact I would think just about everyone who posts can give you positive feedback on that one

Do not torture yourself with things that might not ever happen. Right now focus on things that get you on a path where those decisions and options become a choice.

There are also people out there who love their partner unconditionally amd in some cases just having them alive and sharing their life is all that matters.

User

Posted 23 Jun 2015 at 21:42

Over the years, us ugly blokes who have had relationships know that it is not what we have between our legs that defines us, or attracts the opposite sex, or the same sex if that floats your boat, it is the stuff between our rears.

dave

Oops I meant "ears".

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 26 Jun 2015 at 17:37

Hello Friends

26/06/15 Update...

I went to see the radiologist and the surgeon today to discuss my treatment options. Both were lovely and explained and went through everything in detail. Even brought my MRI scan results up and went through each image with me.

They have reduced my staging from T3a to T2c which is good, they also said that the bulge on the left side they don't think is a bulge now, so that's good news as well.

I agreed to have have the surgery, even the radiologist said that I should opt for surgery because of my age and staging.

I got home and an hour ago I took a phone call, I have my operation date which is the 6th July. This is a lot sooner than I was expecting and has knocked me for six a little, heads thinking all sorts right now, but it has to be done, and the sooner it is out the quicker I can start the recovery process.

My Pre Op is the 30th June.

User

Posted 26 Jun 2015 at 17:47

Hi Raiden,

Once you have made your treatment choice the sooner it happens the better. And the sooner it happens the sooner you can start your recovery and get on with your life free of the cancer.

For your hospital stay you might wish to invest in baggy tracksuit trousers, your stomach will be pumped full of gas and when you come to be discharged your waistline may be larger than it was before you went in? Briefs instead of boxer shorts to assist with restraining the catheter tube and bag. Peppermint tea is recommend by some to assist with getting rid of gas.

Others will contribute other suggestions in due course.

atb, enjoy your weekend.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

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