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Any else diagnosed aged 40 or thereabouts - 40,T2,Gleason 7,young,age 40

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User
Posted 29 Dec 2017 at 16:55

I've recently been diagnosed, aged 40, with localised PC (T2, Gleason 7) and I'm keen to find others who have either been diagnosed or or who underwent treatment at my age. My consultant seems keen on my pursuing the surgery route in regards to treatment, because of my age and, I suppose, because he thinks that will be the best route for long term peace of mind.

I have a young family and obviously I want to live as long a life as possible to be there for them. So I want the treatment that gives me the best chance of exactly that.

Have any of you faced these decisions at my kind of age, with young children to think of? Of course I know that everyone's story is different, but I'd be interested to know how the treatment has gone for you? What the side effects were like and what life is like for you now.

This is so hard as I am otherwise completely fit and healthy. I exercise regularly, don't smoke, don't drink much, aren't overweight and am consequently struggling to get my head around the fact that treatment could change my life in so many ways.

Please do say hi if you're in the same boat, or travelled in it when you were my age.

Thanks

Edited by member 29 Dec 2017 at 17:24  | Reason: Not specified

User
Posted 29 Dec 2017 at 18:13
Hi there Tim,

Sorry for your position, I’m 48, was diagnosed when I was 45 - read my profile

Consider your options, I opted for surgery and it was effective as far as side effects went - with full continence and return of potency to just about normal

Unfortunately though the PSA recently began to rise so I can’t say if radiotherapy would have been better rather than surgery

Speak to the surgeon AND the oncologist before deciding

Best of luck

Bill

User
Posted 29 Dec 2017 at 18:32

If you look in the area for younge4 men you will find a few in their early 40s including SimpleSimon who was diagnosed about a month ago.

http://community.prostatecanceruk.org/topics/46-Younger-men

The youngest diagnosed member we have had was in his mid 30s but I have forgotten his name - if it comes back to me I will post again. There was also Candyman who was about your age - he was also black African and sadly, it tends to be very aggressive in very young men and black men and he is no longer with us.

Edited by member 29 Dec 2017 at 18:32  | Reason: Not specified

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

User
Posted 29 Dec 2017 at 19:04

Hello from me too Tim

Your consultant has suggested surgery. Was anything else offered to you?

Localised, Gleason 7 (especially as it's 3+4) and PSA of 2.49, I would have thought he could have suggested Active Surveillance.

Some men cannot cope with the thought of cancer inside them and if you are one of those men, then yes, you will have to make a decision regarding treatment.

Active Surveillance would at least give you a little breathing space to check out other possible treatments.

I realise that at your age radiotherapy might not be a brilliant idea as you still have a long life ahead of you and radiotherapy can produce its own long term effects.

AS is something to ponder perhaps?

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2017 at 21:14

I sincerely hope your husband continues to make a good recovery smudge and is home ready to look forward to a New Year soon

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2017 at 22:11
Smudge, I hope he has a good recovery from surgery and that this has sorted the cancer. Best wishes, Ian.

Ido4

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User
Posted 29 Dec 2017 at 18:13
Hi there Tim,

Sorry for your position, I’m 48, was diagnosed when I was 45 - read my profile

Consider your options, I opted for surgery and it was effective as far as side effects went - with full continence and return of potency to just about normal

Unfortunately though the PSA recently began to rise so I can’t say if radiotherapy would have been better rather than surgery

Speak to the surgeon AND the oncologist before deciding

Best of luck

Bill

User
Posted 29 Dec 2017 at 18:32

If you look in the area for younge4 men you will find a few in their early 40s including SimpleSimon who was diagnosed about a month ago.

http://community.prostatecanceruk.org/topics/46-Younger-men

The youngest diagnosed member we have had was in his mid 30s but I have forgotten his name - if it comes back to me I will post again. There was also Candyman who was about your age - he was also black African and sadly, it tends to be very aggressive in very young men and black men and he is no longer with us.

Edited by member 29 Dec 2017 at 18:32  | Reason: Not specified

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

User
Posted 29 Dec 2017 at 19:04

Hello from me too Tim

Your consultant has suggested surgery. Was anything else offered to you?

Localised, Gleason 7 (especially as it's 3+4) and PSA of 2.49, I would have thought he could have suggested Active Surveillance.

Some men cannot cope with the thought of cancer inside them and if you are one of those men, then yes, you will have to make a decision regarding treatment.

Active Surveillance would at least give you a little breathing space to check out other possible treatments.

I realise that at your age radiotherapy might not be a brilliant idea as you still have a long life ahead of you and radiotherapy can produce its own long term effects.

AS is something to ponder perhaps?

We can't control the winds - but we can adjust our sails
User
Posted 29 Dec 2017 at 19:13

Thanks Johsan. The consultant said that I wasn't eligible for AS and that the choices were either removal or brachytherapy. I've heard that the latter option has less impact on things like ED, but also that there are risks of radiation-related secondary cancers at a later stage and also that things like letting your children sit on your lap is a bad idea for them! So with two young kids, that's putting me off that option as I'd hate to put them in any danger! 

Edited by member 29 Dec 2017 at 19:14  | Reason: Not specified

User
Posted 29 Dec 2017 at 20:27

Well it's true that you would have to restrict them for a while but it wouldn't be permanent.

You have a tough choice to make, just don't rush into anything.

My husband (aged 74 at the time) had permanent seed brachytherapy which I think wouldn't be suitable for a young man anyway
due to the possibility of bowel cancer further down the line but perhaps look into the High dose Brachytherapy (Temporary) which is a rod inserted into the rectum just the once.

Go to publications on this site and have a look at the various options. Talk to the nurses on here too. Just gather as much info as you can before you opt for a choice.

After all, you have to live with any possible side effects for years to come

Good luck whatever you decide to do

We can't control the winds - but we can adjust our sails
User
Posted 29 Dec 2017 at 20:31
So sorry to hear about your diagnosis and I’m afraid I haven’t any advice to give you other than to seek alternative views/opinions if you need too. I’m so glad they’ve caught your PCa early especially with children. Unfortunately my diagnosis was incurable and it’s been a horrible struggle since being diagnosed in May
User
Posted 29 Dec 2017 at 20:35

Success of surgery depends largely on how well the cancer is contained within the prostate capsule but if some cancer cells have escaped beyond where the knife can safely cut, RT and in need other treatments can be given singly or in combination. Of course the more treatments given the greater the risk of side effects. Hope your primary treatment does the job. It is fairly uncommon for a man of your age to be diagnosed with PCa and representatively not many men quite as young as you are on this forum, so a sizeable first hand response from such men so young is not to be expected. Nevertheless, all of us here have been affected directly or indirectly by PCa and although we can't advise you what treatment you should opt for - that is something you should decide on having discussed with your consultant's - we can help answer many questions and provide support.

Edited by member 29 Dec 2017 at 20:36  | Reason: Not specified

Barry
User
Posted 29 Dec 2017 at 20:41
Tim

So sorry too see you here. I was 46 when diagnosed. I was thought to be a T3a and Gleason 7 and went ahead with a prostatectomy. Sadly, things were worse than suspected and after surgery I was upgraded to T3b and Gleason 9.

I have no regrets about the surgery. Incontinence didn't pose any problems, but as I had non-nerve sparing, I have total ED and need injections.

I can't advise you what to do. Your life has now changed and will be different moving forward. But as you read this forum, you'll see that men go on to live a full life despite this illness.

I thought I was young and am genuinely heart broken for you. But you'll find strength to go on, especially for your kids. And you'll make good friends on this forum and learn a lot from it. The specialist nurses are absolutely brilliant - don't hesitate to call them.

We are both part of a club that we didn't ask to join and would dearly love to leave, but that isn't possible at this time. I got PSA results today and a year after surgery the cancer is active. I see my oncologist next week and it is likely I'll be doing radiotherapy, so at least I have a second chance of a cure.

Ulsterman

User
Posted 29 Dec 2017 at 21:44

I was 45 when I was diagnosed had RP January got results back I had positive margins with a psa of 1.1
then had 20 sessions of radiotherapy in may .psa is now 0.7 at last test

User
Posted 30 Dec 2017 at 12:01

Hi , I was 47 at diagnosis and 48 at surgery. I’m now 50. Click my picture and read my profile if you like. Also I have my entire journey in a thread called Chris J’s Journey if you want to look it up. Sadly I’m in the incurable camp although healthy at the mo. I have a 7 yr old boy.
Best wishes

User
Posted 30 Dec 2017 at 21:02

Im replying on behalf of my husband who currently is in the QE birmingham having had a full removal yesterday.  He is 47, T2, gleason 7.  W were advised against active surveillance due to family history, his father passing away at 57.  My husband just wanted "it" out mentally couldnt cope and memories of his fathers passing.  Its early days only 24 hr since surgery but im sure as a family its the right decision.  Sorry to hear your diagnosis but like another gentleman said - you have joined a club you didnt ask to.  Take care Jan on behalf of hubby xx 

Edited by member 01 Jan 2018 at 11:25  | Reason: Not specified

User
Posted 30 Dec 2017 at 21:14

I sincerely hope your husband continues to make a good recovery smudge and is home ready to look forward to a New Year soon

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2017 at 22:11
Smudge, I hope he has a good recovery from surgery and that this has sorted the cancer. Best wishes, Ian.

Ido4

 
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