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Diagnosed at 41 years old

User
Posted 03 Dec 2019 at 21:03

That's great news mate, really pleased for you...stay strong everyone👊👊

User
Posted 06 Dec 2019 at 08:04

Mick,

I would suggest you contact the one to one support at Prostate cancer uk and speak to someone in a similar situation,it has to be better than just a ‘typed’ conversation,you can ask questions of the volunteer and get a personal experience.I’m a volunteer ,but probably not matched to you age wise,I’m sure you would find this service of benefit,good luck(I’m sure all will be fine)

Ian

 

User
Posted 06 Dec 2019 at 23:39

I am 62, surgery 5 weeks ago...recovering well. 

Question I should have asked ....how quickly do I need to take action?

Go forward at a pace that is best for you 

Best of luck

nb This site is excellent 

 

User
Posted 07 Dec 2019 at 08:42

Hi Ian,

Thanks for that message. I got put in touch with a volunteer by the Irish cancer society, who was 49 (youngest on their books) when he had the surgery.

Chatting to him has put my mind at ease, somewhat as a definitely have youth and fitness on my side, which he said helped him enormously and he now is back to almost where he was, in every respect, prior to surgery.

Thanks again, take care.

User
Posted 07 Dec 2019 at 08:45

Thanks seldomseen, 

I have asked that question already.

It looks like I will have the surgery in late January/early February.

I will keep you all posted.

And yes, this site is brilliant. 

User
Posted 07 Dec 2019 at 09:35

My husband was diagnosed at 53 in 2016.

He has to decide on a second treatment and met with a surgeon last week as part of the decision process.

If he does have an RP we would want a NeuroSafe procedure where they remove the prostate via a nerve sparing procedure initially and then get the prostate biopsied immediately as part of the procedure.

This allows 100% certainty that the G7 diagnosis was  correct ( was it a 3+4 or a 4+3 Gleason 7?)

This also allows confirmation of negative margins during the surgery and the surgeon can then decide with full facts that it is safe to leave nerve bundles

 

This would be important to us as avoiding an over treatment whereby unnecessary side effects are experienced re erectile function and avoiding an under treatment when men have nerves left but find out about a positive margin or a higher grade of Gleason and therefore have been under treated with regards to cancer control.

So a Neurosafe RP would be on our shopping list if we went that route.

We are leaning to a second focal treatment however. 

Good luck. Hard decision when you are young. My husband was diagnosed initially with G6 so we made our decision from a low risk non aggressive diagnosis. His new diagnosis is G7 (3+4) so higher risk but still low enough risk for focal to be offered.

Clare

 

User
Posted 07 Dec 2019 at 09:42

Hi clare,

Thanks for your input.

My G is a 3+4. Being as young as I am, I would like the problem removed so I dont have to think / worry about it for the next 40 years (hopefully). The surgery is nerve sparing but with anything like this, there are never 100% guarantees. 

Hope you and your husband are doing well.

All the best....

 

User
Posted 07 Dec 2019 at 10:23

Thanks Mick we are fine having had 3 years knowing he has PCa has given plenty of time to get used to the situation, the need for PSA to be monitored and understand it’s a very individual disease so no common pathway for all to follow.

G7 ( 3+4) is the same as my husband. Absolutely understand your thought process, it makes complete sense.

It would be great to be kept up to date on your journey. I have found the complete threads that people have taken the time to keep updated invaluable due to the variety of options that continue to be available to my husband.

Also we have learnt much from this community that is missing from even something as comprehensive as the ‘toolkit’.

we too will have some procedure happening in Jan/Feb just not 100% certain yet which path to take.

User
Posted 08 Dec 2019 at 20:32

Mick,

I hope you are keeping well.

Just wanted to say i've just had my first psa test result after RP on the 1st October.......<0.1 undetectable! Feeling so relieved right now.

Good luck with your operation and hope your results are the same as mine.

Jeff

User
Posted 08 Dec 2019 at 20:40

Delighted for you Jeff, great news!!!

I'll keep you posted...

User
Posted 10 Dec 2019 at 13:19

Hi Mick.

I'll quickly summarise my story. I was diagnosed at 48 with G3+3 and placed on Active Surveillance. 12 months on and following a further MRI and Biopsy, I was advised to consider RARP. Long story short, I opted for that within 48 hrs, met the surgeon about a week later and had the procedure about 4 weeks thereafter in September. Ultimately, the age factor was compelling in my consideration of what treatment choice I should make.

In that 4 weeks before the operation, I really didn't stop to dwell on it. It was a factory line that I couldn't get off so I just kept busy. Kept going to the gym, kept socialising and told very few people. I was pretty focussed - Gloves on, gumshield in. We're doing this. Oh, ....I also had as much sex as I could!!

On they day itself, I was in theatre within an hour of walking through the hospital door (1st surgical slot of the day). When I woke up, there was no pain, though I was pretty groggy for 36 hours. I had family support and for that I am very grateful.

I had a cathetar in for about a week. Thats not great, but one week of your life...no problem. I even managed to do what I was told was impossible....I filled my night time bag ha ha!! For me, continence was good thereafter. I never had pain. I took painkillers for a week due to fear of pain and when the cathetar was removed, I was advised to stop taking them to see whether I encountered any. I didn't.

However - the painkillers do bring fairly pretty severe constipation and given the nature of the operation, that's not great but I had a nurse who kept banging on about eating stewed fruit 3 times a day and to keep hydrated - which I did and I was just about OK. Its not terrible, but treat it VERY seriously.

For about the next 4 weeks, I pottered about and went walking. Then I started drinking again and began to really enjoy life as I wasn't yet back at work (I was signed off for 10 weeks). At about week 8 I started swimming and now I'm back in the gym and working out at about 70% effort.

I've had my follow up following surgery. I was upgraded from G3+3 to G3+4 and my PSA is now undetectable <0.03.

Which leaves ED. All medical staff tell me its early days. I'm following my rehab program and I'm taking large quantities of Sildenafyl. I can't pretend I'm not anxious, but the reality is that the data tends to suggest that this will take the best part of a year, possibly two. We'll see. But the reason I say this is because you have to be real with yourself. This isn't a broken arm. It is what it is.

If I win my ED battle, then I can assure you that there will have been NO regrets. Not once during this experience have I wished I'd taken a different course and I'm truly thankful for the early diagnosis. But that's my experience and it may or may not be close to yours. Whatever you decide, I wish you the best of luck.

..Twist.

User
Posted 10 Dec 2019 at 17:03

Thanks chalkmate, 

That was I brilliant piece on your journey and was quite inspiring to read, with you positive outlook and attitude.

I called the surgeon yesterday and asked for his next available slot. Like yourself, I've made my decision and now want to get on with it.

I shall keep you all updated and in the meantime, will be hitting the gym!!

Dont have weight to drop (5' 8" and 11st) but want to just be in the best physical and mental condition prior to surgery...

Here is to  a good Christmas. 

Talk to you in the new year!!

User
Posted 10 Dec 2019 at 21:36

Hi Mick

have a read of my posts I will be post op 7 weeks on Friday I had robotic surgery, it has all gone very well I see my surgeon on the 17th. As I have said in my post it’s all been a bit text book.

Dave

User
Posted 10 Dec 2019 at 21:48

Thanks Dave, 

Had a quick read there. Pretty remarkable stuff. I'm delighted for you. I can only hope for an outcome like that, but being only 41 and being very fit/healthy I'd be hoping for it.

Will keep you posted.

Cheers, and good luck on the 17th!!

User
Posted 11 Dec 2019 at 10:32

Hi Mick,

I believe being fit helps with everything, I go to the gym and do a couple o spins a week, they have a gym where I am based also I ride a bike but not done anything for 8 weeks other than walking the dog he loves it,

speak wood Dave

User
Posted 11 Dec 2019 at 20:48

My husband was diagnosed at 52 and we live in the US.  They don't recommend PSA tests in the US until 50.  My husband had slightly eleveated PSAs from the beginning of testing or right at the top of normal on follow ups.  For us we are the youngest when we see the doctor and feel very out of place.  I am certain you being even younger feel that way too.  My husband's Gleason score same as yours (3+4) after just 1 biopsy and he opted for the robotic nerve sparing surgery.  He had his surgery October 17th.  Doctor said it was textbook.

My husband is not athletic and a recovering alcoholic.  He was taking Zoloft for depression but he is working on getting off that and switching to Wellbutrin (FYI Zoloft known issue for ED so it is precautionary on his part).  He is healthy otherwise though.  The doctor informed us when choosing the correct treatment that if he opted for chemo or the seed implants that surgery if cancer returned would not be an option.  All treatments came with their own version of side effects as you well know.  He chose the DaVinci because of his age and the doctor's experience.

He is incontinence free at 9 weeks.  It took about 7-8 weeks to get there for him. He has been on Cialis for 3 weeks now.  Our return appointment is next week and he will be doing his first post op PSA next week also.  He is 100% cancer free at this time with no radiation needed.  As far as ED recovery, that is in the beginning stages but we are hopeful.  I honestly have no idea what to expect in the coming months or what the doctor will have him do other than the Cilias.

Good luck to you.  This forum is a great source of information and support.  I get more help from here than I do my husband's doctors. 

 

User
Posted 11 Dec 2019 at 20:56

Thanks adora,

This forum is superb, I cant say have valuable I've found all the posts on here.

Glad to hear your husband, and you, are doing well. Hope all goes well for you both.

Take care and look back in, in a few weeks and I'll keep you updated.

User
Posted 11 Dec 2019 at 23:11

Adora, it is great that his continence is recovered so soon but they can't possibly know that he is 100% cancer free so soon. His first PSA test will be a good marker but he will need 5 or 10 years of undetectable PSA before he can confidently say he is in remission. My husband was 50 at dx, had the op but it recurred 2 years later. My dad was in remission for 13 years but it still came back.

Edited by member 11 Dec 2019 at 23:11  | Reason: Not specified

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

User
Posted 12 Dec 2019 at 16:53

I was disgnosed at 48. I'm still on watchful waiting 10yrs on. Routine psa/scans/biopsy programme. Living with it took some time to adjust to. I'm told radical prostectomy would be the treatment of choice. Impotence following surgery is a major worry. Other men I know of who have had treatment of all types end up impotent. No exceptions. 

Get the best advice and be aware of the possibilities statistically too. Don't feel pressurised to make a rapid decision. All the best.

User
Posted 06 Jan 2020 at 14:08

Hi Mick78. I've not been on this site for sometime but thought I'd share my experience. I'm 56 and 2 1/2 years post RP. I was offered radiotherapy also but chose to have the op. Continence returned quite quickly for me. ED is everlasting for me as I had non nerve sparing. Caverject is my cure for ED but I've heard others state it's not for them. It's difficult to come to a decision but once you've made it things start falling into place. It's been a rocky road but I'm still here and glad to be. PSA recently was less than 0.01. Good luck.

 
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