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very worried[any advice please]

User
Posted 31 March 2016 19:12:25(UTC)

Hi All new to the site found out my biopsy report tueday 29th march, MRI  scan on the 11th April opperation soon.most worried about what happens to the old man down below. dread not being able to have a fulfilling sex life again.Appreciate its better than dying but any help advice would be greatly appreciated.thx in advance Nick.

User
Posted 31 March 2016 20:44:54(UTC)

So sorry you are in this situation Nick , especially as you are youngish like myself. It hurts at any age but yes I'd have liked to have had another 15 years lovemaking under my belt with my wife of 6 yrs before this happened. Click on my avatar and read my story if you want. Another good read is the post " erecting the erection" which contains some interesting stuff about a love life post op. All the very best to you and post whenever. There is nothing you can't ask !!




If life gives you lemons , then make lemonade
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User
Posted 31 March 2016 20:44:54(UTC)

So sorry you are in this situation Nick , especially as you are youngish like myself. It hurts at any age but yes I'd have liked to have had another 15 years lovemaking under my belt with my wife of 6 yrs before this happened. Click on my avatar and read my story if you want. Another good read is the post " erecting the erection" which contains some interesting stuff about a love life post op. All the very best to you and post whenever. There is nothing you can't ask !!




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 31 March 2016 23:08:51(UTC)

Originally Posted by: Online Community Member

Hi All new to the site found out my biopsy report tueday 29th march, MRI  scan on the 11th April opperation soon.most worried about what happens to the old man down below. dread not being able to have a fulfilling sex life again.Appreciate its better than dying but any help advice would be greatly appreciated.thx in advance Nick.

 

Nickbethjosh,,

whoa with the worries about no sex life etc.  Unless you have been told something that you are not sharing, there is no guarantee that you may never have a sex life again.  You may, and it may still be very fulfilling.

What treatment options are you looking at?  Haver you had any results of ny test yet?

dave

 

 

 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 01 April 2016 00:36:44(UTC)

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.

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


User
Posted 01 April 2016 04:39:04(UTC)

Hi nick
One step at a time mate get all the info before you decide on owt

Regards
Nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 01 April 2016 14:23:09(UTC)
N

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
User
Posted 01 April 2016 14:33:54(UTC)

thanks to all who replied ive had the scans done and biopsy cancer found both sides of prostate,i think i have the oppertunity to have radio therapy,would i still get the same problems with that,ie penial disfuction.??/

 

User
Posted 01 April 2016 14:36:40(UTC)
Yes I think so but it can take a couple of years. Whereas with surgery it gets better with time.😕
User
Posted 01 April 2016 15:46:40(UTC)
Radiotherapy has less chance of causing ED I think. But they say it can take a few years to cause a problem. Whereas surgery the ED will happen but can improve over time.
I'm sure someone more knowledgeable will answer that question.
User
Posted 01 April 2016 17:08:18(UTC)

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 

 

User
Posted 01 April 2016 18:04:23(UTC)

Many thx to all its nice to know im not alone, worrying times i have been told left side of prostate right side as well but more agressive going for mri in a week so guess ill know more then and will ypdate. once again thx to all, hope you all get better and the old man works for those that it does not,ill be back.regards Nick.

 

User
Posted 02 April 2016 17:34:28(UTC)

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

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 20 February 2017 19:55:13(UTC)

i also have chrones disease which i was told would be kick started with radio therapy, ive had the opp now but my psa levels have now inccreased 3 times due for a scan[ctc] soon then 6 weeks of hormone therapy followed by 5 weeks of radio therapy then A MRI.  ive also been told there is a 50 percent chance they will have to remove my bladder has anyone else had to have this done.

User
Posted 20 February 2017 20:05:07(UTC)

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   

User
Posted 20 February 2017 20:44:01(UTC)

I am sorry to read this Nick - everyone hopes that the op will sort it out and it can be so disappointing when it doesn't work quite as well as hoped. But you have a plan in place for salvage treatment - do they believe the cancer has spread to the bladder or is it that the surgery left you with some permanent damage to the bladder? If the worry is about spread, my husband had some spread to the bottom of his bladder but they included that area in the radiotherapy and now (5 years on) his PSA is undetectable. Fingers crossed it works for you too.

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


User
Posted 21 February 2017 19:33:44(UTC)

thank you that gives me some hope.

User
Posted 28 February 2017 14:59:41(UTC)

thx for ur answer been a while to get back sorry. im now in a position of after 10 months since prosttectomy,i am due to have a ctc scan and start hormone and radio therapy soon.un fortunately i have recieved a letter sayingthat the chances of long term psa control with radiotherapy is in the order of 50 per cent. if i end getting the wrong 50 per cent what happens then.?? naturally getting more worried each day.yours nick canning

User
Posted 28 February 2017 15:29:57(UTC)

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.

Barry
User
Posted 01 March 2017 15:27:37(UTC)

Thankyou Barry, that at least has risen my hopes somewhat appreciate your responce. NICK

 

User
Posted 01 March 2017 16:04:30(UTC)

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

User
Posted 05 March 2017 14:12:50(UTC)

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. 

User
Posted 05 March 2017 14:13:06(UTC)

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. 

User
Posted 05 March 2017 14:39:41(UTC)

Great to see that hope and other things spring eternal! Good on you Nick!

E

 
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