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User
Posted 01 Sep 2018 at 17:44

I've been recently diagnosed with cancer of the prostate, a score of 9, the Doctor thinks it may bo contained within the prostate, but will have a mri of the bone to ensure it hasnt on Monday. I must admit to being terrified, I've made no secret to my friends and family what has occurred with the aim of  making sure they are aware that this can happen And to ensure they get tested. To the outside world I'm on top of this and positive; most the time I am,but I have dark moments when I feel my world has dropped through my feet And I'm about to wake up from a bad dream. I've always kept myself very fit with gym work, cycling running and mountaineering and never really had any sickness throughout my life; so this has hit me very hard At present I'm feeling very isolated. 

User
Posted 01 Sep 2018 at 19:10
Hello Colin and welcome to the site

That feeling of dread and isolation are quite normal but you've found us now so remember you are not alone with those fears.

The initial stages of diagnosis, when there seems to be a lot of hanging around waiting for appointments gives you and your head plenty of time to go round and round in "what if" circles.

Hard to believe at the moment, but once a full diagnosis is made and a treatment plan is in place, you will probably find that you settle down a lot and just get on with the job of tackling the cancer.

I take it the score of 9 was the PSA was it?

IT's good that you have been open with family and friends and also that you are proactively encouraging the men to get seen.

Please come back to us with you Gleason score (unless that's the 9 from above?)

I'm sure you'll get lots of helpful advice from people on here.

We can't control the winds - but we can adjust our sails
User
Posted 01 Sep 2018 at 20:03
Johsan

The PSA was 11 and the geeson score 9. Not good really. The original scan showed it all in the prostate, but that was in early July. The Doctor was confident that it was curable. It's when the geeson score came back as 9 he then indicated that a bone scan was needed. That did worry me. Thanks for your help, you do feel very alone

User
Posted 01 Sep 2018 at 20:17
Hello,

you must have had a biopsy or multi-parametric MRI to have been given a Gleeson score an did you get a TNM staging score?

Simply put, have you had an MRI which should happen before biopsy (had this?)

User
Posted 01 Sep 2018 at 23:12

Colinonbike

You are most definitely not alone my friend.

I was PSA 38 on my first blood test and my Gleason score was also 9, made up of 4:5 and I was T2c which means my cancer is contained within my prostate.

what Rich says is correct, you must have had a Biopsy to have a Gleason score? I had a Template Biopsy under General Anaesthetic, but a TRUS biopsy under local anaesthetic is also done to diagnose your situation.

I went for a bone scan, CT scan and 3 further MRI scans over a 6 week period. This is normal  and your oncologists will be doing this to rule out any metastasis, which means has your cancer spread anywhere that doesn’t show up initially .

I am a keen  sportsman still at 66 and I cycle regularly 200 miles a week.  I was diagnosed early in March this year and on Tuesday next week I finish my radiotherapy sessions .

 Many people on here can give you all the support and advice you need probably a lot more who have more knowledge than me, but we have a few things in common and if you need any help at all please don’t hesitate to message me on here. 

 I have been exactly where you are now five months ago and I have been journeying to beat this horrible disease I have gone through the same shock and denial of initial diagnosis and then as I have progressed I have realised how a positive mental attitude and being fit can get you through this.

 I don’t know if you are alone or have a partner, but I can tell you keeping it to yourself is not the answer, you have made the first positive step by coming on here.  I found my relationship with my partner improved and became stronger as we work together to beat this Disease 

 Please keep on this forum and discuss anything you need to get top quality help and advice herefrom people who know exactly what you’re going through as most of us have been through it 

alan

Edited by member 01 Sep 2018 at 23:20  | Reason: Spelling

User
Posted 02 Sep 2018 at 04:13
Thanks for the comments, it is all very helpful. I had a MRI scan first that detected the cancer, followed by the biopsy under local anathetic, not sure how the Geeson score was made up as I was rather in shock when I was told. I'm also alone in facing this and have no partner, I have told friends, some have been very good, others I'm afraid to say could not face me; that was very hard to see and experience. I think it's when that occurred I realised how bad it was. One question I wanted to ask, is it ok to continue to ride the bike or should I quite at the moment until treatment has been completed
User
Posted 02 Sep 2018 at 05:36

On your bike, Colin, and the best of luck!

Cheers, John

User
Posted 02 Sep 2018 at 09:33

Interesting question about can you still ride your bike. 

I have been an active and long distance cyclist for many years and I asked the very same question at the start of my journey.

The answer I got was yes of course you can! This came from consultant Oncologist. The only caveat was listen to your body always.

I am 18 sessions into 20 of Radiotherapy, as it’s precise location of the prostate by CT scans and ultrasound I asked if I should stop cycling. Resounding answer was it doesn’t afflect treatment at all. All through my treatment from biopsy, hormone therapy and Radiotherapy I have been told to keep exercising as it’s proven to be beneficial to be fit during treatment. But again, listen to your body and don’t overdo it, you have to accept you probably won’t be able to do as much as you used to.

Edited by member 02 Sep 2018 at 09:35  | Reason: Not specified

User
Posted 02 Sep 2018 at 10:20

Hi Colin,

Welcome to the G9 club.

Your diagnosis is similar to mine (see my profile) and I know where you are after being diagnosed and waiting for ( I assume) a bone scan.

Fortunately for me the scan was clear, but nevertheless every ache and pain i feel or have felt jumps to the front of my mind.

Anyway I have recently started hormone therapy and will soon be visiting the onco again soon to see the current scores on the doors situation, with a view to future planned treatment.

Since being diagnosed, I've taken positive steps to leading a more active, happy and healthy life. I can tell you it's working and I'm enjoying life more than ever.

 

 

User
Posted 02 Sep 2018 at 10:33

G9 club👍 I’m liking that!

As I said to Colin, I’m further down the G9 lane, but fitness is a bigger bonus during treatment than many with PCa  realise.

My advice is NOT to go on a googling crusade. I did and I sincerely wish I had not. I ended up dreading getting all the huge list of known side effects of my 3 monthly Triptorelin Hormone Therapy. In the end I got hot flushes and dry ejaculations. I am still able to get an erection and climax with a little effort After 4 months and 2 Injection of Triptorelin. When you see your Oncologist, ask about which HT they recommend, I was able to learn a lot about the differences, but in my case I had to accept Triptorelin as it was the one my GP has always used. By coincidence, I discovered that Triptorelin at £207 per jab is the cheapest

as for External Beam Radiotherapy, after 18 sessions, I have not experienced the fatigue many people do, I have no skin problems, I get occasional diarrhoea, easily treatable with low fibre diet and Imodium. I have no real urinary issues, but I have to go more frequently, mainly due to the fact I must keep hydrated during my Radiotherapy.

I most definitely am not saying everyones experience will be similar to mine, as we are all so different, but all specialists I have met during my journey have positively reinforced the keep fit scenario.

Edited by member 02 Sep 2018 at 10:42  | Reason: Spelling

User
Posted 03 Sep 2018 at 17:18
Thanks everyone for comments. It's really odd there are occasions I'm very positive, and then out of the blue, it gets very dark. I still think it's a bad dream. But once again thank you for your comments. I've had the bone scan today, so await the results from that

Colin

User
Posted 03 Sep 2018 at 19:43

Hi Colinonbike.

im another G9 with initial PSA of 25.7, no mets in bones but had gone into seminal vesicles ( spelling?) . But I have been assured I can be ‘cured‘ . I have finished high dose brachytherapy and 23 sessions of external beam radiotherapy. Had 8 months on Prostap 3 with maybe 10 to go.

i had no symptoms and have none from the treatments except the Prostap. No physical issues bar hot flushes but I’ve got the full mental issues . I am seeing a counsellor for that . 

So you need to be positive. It’s not always easy and I have some childhood history which has come back through the Prostap but as my wife says we have to get through this .

You will find iut who your real friends are and it’s sometimes surprising how understanding some people are.

i am looking forward to the end of my Prostap and I have a countdown on my Phone.

also started going down the gym again which feels so good . Feels like I’m taking a bit of control back .

i wish you all the best . You will get through this with the help of all the wonderful  people on this forum .

User
Posted 03 Sep 2018 at 22:20

Hi Colin,
We all feel for you and understand exactly where you are. Being diagnosed with PCa is the worst shock, but as treatment progresses and the more you read on this site you will realise how common this disease is, and how well we all cope with it. If you read my profile you will see I was diagnosed over four years ago now with an initial PSA of 19 and a subsequent Gleason of 7 (3+4). You will probably be given the option of radiotherapy or radical prostatectomy to remove the prostate. They only offer brachytherapy with PSA less than 10. Having to make the decision regarding treatment oneself is the worst thing in my opinion. I opted to have it removed (RP), but I still honestly don’t know if that was the right decision or not. After biopsy I was told that the prostate had about 2% of cancer cells. After the surgery and resultant histology of the removed gland they told me it was 40-50% full of cancer, and unfortunately it had begun to escape outside the capsule. This meant that PSA after surgery was not ‘undetectable’ and, though very small, started to rise. It continued to slowly rise for two years so they offered me salvage radiotherapy. After this, and two years down the line my PSA is now ‘undetectable’ so I am now clear of cancer. (I hope as I am due for another check next week). Unfortunately I can no longer get an erection and I have to wear one pad per day due to incontinence. This is a small price to pay for being clear of cancer though.
If I had originally taken the RT route instead of surgery I might have recovered erections and would have been dry. OR would I? With the cancer being that much worse than the original biopsy showed the RT might not have got rid of all the cancerous cells. If you have RT first they do not recommend surgery afterwards. So you see you are between a rock and a hard place and can only go with your gut instincts to follow the best path. Good luck with your decision and progress. Keep everyone informed on this site and you will receive plenty of support and comment to help you through.
Keith

Edited by member 03 Sep 2018 at 22:23  | Reason: Not specified

User
Posted 03 Sep 2018 at 22:39
I'm in the G9 clique too! I had 37 RT sessions, advised against surgery and brachytherapy. Even within your post there are several different treatment routes that have been taken. Some out of choice and some based on specific individual circumstances like mine. Be as well informed as you possibly can via this site, the PCUK nurses and most importantly your treatment team.

Good luck Colin!

User
Posted 11 Sep 2018 at 16:34
Bone scan showed that the cancer had not spread. Advice is for the surgery. See what this brings.
User
Posted 11 Sep 2018 at 16:49
That's excellent news, Colin. I well remember my utter terror while waiting to find out if my cancer had spread (particularly after a memorable consultation with a urologist who thought it would be "helpful" to tell me what the worst case scenario could be), and the amazing feeling of relief to be told it hadn't. I'm delighted for you.

I know it probably took me at least two months to come to terms with my diagnosis, and I went through some dark times during that, but I can assure you that you will come out the other side of that, unbelievable though it may seem just at the moment. There are people here who know exactly what you're going through, and I'd urge you to phone the PC-UK nurses and talk to them, too.

The important thing is that you're comfortable in your own mind with the treatment route you go down, and now is the time to take a little time to find out all the information you need to make an informed choice, although the fact the MDT is recommending a particular treatment probably makes that a little easier.

Remember that you're not alone. We've been on this journey too and know how tough it is.

Very best to you,

Chris

User
Posted 11 Sep 2018 at 17:08

Great news Colin. I went through this in January .

Had the scan then went on holiday to Finland. They asked if I wanted to know before or even to phone me . I said no wait till I’m back . I forgot all about it but the wife didn’t.

Was all good though - phew ,so I know how you feel.

Chin up , you will get through.

phil

User
Posted 11 Sep 2018 at 17:50
Colin, I too was a Gleason 9 diagnosed over eleven years ago. You can beat that, I'm sure with modern treatments. I advise you to stay fit, think positively and survive. I know I shall never be cured but I shall survive and continue to enjoy life. Good Luck,

AC

User
Posted 13 Sep 2018 at 12:37

Hi Colin,

 

Please keep us updated on your journey. Gleason 9 is not the end of the world. I am a 5+4 , almost the worst there is and also locally advanced but i was told they expect to 'cure' me . Well fingers crossed of course.

I didn't feel any dark feelings at all until i got on the Prostap. I think maybe its better if you're going to get that way to at least realise that early on and get help. When mine came on i was caught off guard as i thought i was going to be lucky. I have no physical side effects at all but the mental ones are challenging, particularly as it has brought back some issues i have from my childhood. i got to see a counselor early on and i don't know what i would do without it. With the ED and my thoughts flicking between the past and the future my head is all over the place.

If you need that kind of help ask to be referred by your specialist nurse.

Do you know why they didn't offer Brachy and RT ? That's what i had. I was offered both routes but didn't fancy surgery although my very first thoughts were 'lets get it out' .

Good luck and keep up the exercise its helped me and many others to get through.

Phil

Edited by member 13 Sep 2018 at 12:38  | Reason: grammar

User
Posted 01 Nov 2018 at 17:38
Well had the surgery, I'm told that went well. However I did feel is if I had been hit by a train. It's just over two weeks since surgery. Did my first walk of 1 mile. The next day it was 2.5 miles. Felt a little tired after each so took today off. Will head out again tomorrow. It's been 3 days since removal of the catheter, still no control. Have to admit that is the one thing that does grind me down. I'm told it will improve, but it appears a long way off. One thing about walking it takes you mind off the problem.

Thanks for all your replies, I take a lot of encouragement and help from your experiences.

User
Posted 01 Nov 2018 at 18:27

found that my recovery from incontinence went like this:

No control for about 10 days but then dry at night or when sittiing/lying.

It took a few more weeks before I could control myself when standing up.

The hardest bit to get under control was walking, particularly longer distances. As you say, walking does help take your mind off it for a while until the practicalities have to be addressed.

I got there in the end but remember that you have had major surgery and it depends on exactly what the surgeon has had to do as to how much retraining your brain has to do to recover bladder control.

Don't push yourself too hard too soon.

All the best

Kevan 

User
Posted 02 Nov 2018 at 08:19
Interesting that there is an expectation of continence so soon. I was told I would leak and I did, but it slowly got better, getting a referral to the incontinence clinic was what sorted it for me - I didn't actually go as I got control back before the first appointment!!

3 years out even the occasional heavy lift leaks and orgasmic squirting have pretty much stopped -almost disappointed about the last one as it stood in for "proper" ejaculate!! But the bed linen and my lovely fioncee appreciate the improvement!!

 
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