very worried[any advice please]

Why have you decided to have surgery before you have even had the scans Nick? Don't be pushed down one route unless and until you have all the information about different kinds of treatment that might be available to you.

The other posters do have valid points but in answer to your question. Penile recovery will obviously depends on many factors.

I am nearly two years post op and cannot get a natural full erection or one from oral medication. I can get a full size swelling/tumescence mechanically or from chemicals inserted into the penis but it doesn't stand up.

We have a very fulfilling love life and orgasms are out of this world, you do not need a erection for vaginal intercourse, Google flacid insertion, believe me it works, just make sure you keep the windows shut.

Our welcome committee seems to have missed your post,if not already done so download the toolkit it will give you lots of info.

Good luck with your decisions and as we say on here there are no silly questions.

Thanks Chris

Hi Nick,

What have your doctors told you?

Have they told you you have an advanced or aggresive cancer that is likely to kill you if untreated?

Or have they said it is too early to know that?

Have they mentioned a Gleason Grade, and a 'T' stage?  Do you know whether it has spread to your lymph nodes, or your bones?

There are a whole host of treatment options, it might be that they can do what is called a 'nerve sparing' operation, which would enhance your chances of a good sex life, but it might be the case that they have to chop the nerves because of where your tumour/s are located.

You may be a candidate for external beam radiotherapy and/or brachytherapy?

It may be the case that they recommend hormone therapy, either on its own or as part of any of the above.

There are other treatments such as Hifu, and sometimes doctors will advise doing nothing at all, other than watching and waiting.

Untill you know these things and can share them with us on this website, it is very difficult for anyone to give you relevent thoughts or sound advice.

:)

Dave 

Aggressive.

One term that I learned to put into perspective, actually now ignore, last year at Leicester was "aggressive". It's often used by medical professionals, and we take up on that, and use it too. Is it a good label to have placed upon us? Does it make us feel better to be having to deal with an "aggressive" cancer? Does it make us feel more of a sufferer? Some folks talk of having an Aggressive Cancer, or even a Very Aggressive Cancer. As if aggressive is not enough. For me, the fact that I am diagnosed with and have found to be infected with Cancer is more than enough to get my head around. I don't need any more adjectives.

To put this into context, my PSA taken 3rd January 2013 was 5.5. That was thought to be too high for my age. So, it was taken again 26 February and was 6.4. That rise in 8 weeks was said by GPs to be "aggressive".

The Specialist Speaker at Leicester in 2015, forum rules prevent me from naming him or her, pronounced that, in fact that hat amount of rise and my cancer was not aggressive. Far from being disappointed, I was delighted. With luck I would not suffer further spread.

It would be beneficial to debunk the term "Aggressive" when applied to a Cancer diagnosis.

If someone says you have an aggressive cancer, establish their credentials and credibility before you fret about that aspect of your diagnosis.

dave

Hi Nick,

When I was in hospital, back in 2008, the guy in the next bed was having a 'new bladder', apparently the surgeons took a piece of his bowel to construct a new bladder.  We didn't keep in touch so I don't know how he fared in the long term, however at the time he was fairly upbeat about it, it was a routine operation with good prospects of success.

:)

Dave   

thank you that gives me some hope.

Hi Nick,

I see you are starting HT and RT shortly and it will take time to know how well this works. Should this not do as well as expected, there are different forms of HT that can be given to replace or supplement existing HT, chemo and drugs and possibly other forms of treatment depending what your consultant considers best in your individual case. He/she will consider your histology and reaction to treatment given before suggesting further steps. But let's hope the HT/RT proves successful.

Hi Nick

I understand your worries, it's always worse when we are waiting for something to start isn't it? Feels so passive and helpless that all the worst-case scenarios flood in. But Barry is right - there are a host of different treatments and drug variants out there to help manage the disease at this stage and if one option doesn't work, or doesn't work as well as had been hoped, there will be another. My OH has been through a pharmacy's-worth of variants and treatments and is now responding well to Abiraterone + steroids.

Fingers crossed that you'll be in the positive 50%. Take care.

Eleanor

x

Thankyou  Elonar appreciate your feed back,doing best to stay positive just so frustrating all this waiting.ive asked my boy to tidy his room up and its happened quicker. thx again. Nick.Until Barry and yourself said i didnt realise there were other opptions. thx again to you both. [ps on a good note the bedroom was busy this morning][at last] so all not bad, been a while though mrs eyes nearly popped out when i showed her what i awoke with.lol.