Hi Dave
So sorry you find yourself here mate.
I was diagnosed at 49 18 months ago and am now 51. I was/am T4N1M1a my Gleason score was 9 and my PSA on diagnosis 342, I have spread to my lymphs around my body.
I know you are in a scary place at the moment and will no doubt feel things are happening to you for which you have no control, the emotion will also no doubt be at times too much to bare. This is sadly normal, don't fight it as for now it will be what it will be and you need to let yourself deal with it initially in a way that is personal to you.
What I can tell you for me is the treatments can work and you can have a great life in the process.
I had (have) 3 monthly injections , zoladex, which keep most of the testosterone away, I did have a daily tablet called biclutamide too but that stopped after a year. I am now on abiriterone daily which is working and hopefully will for many years.
Along the way I had chemo, 6 sessions 3 weeks apart followed by radiotherapy, 6 sessions 1 week apart all from 3 to 9 months after diagnosis. My PSA dropped to 0.3 in that time and a full body MRI a year after diagnosis said "no visible signs of the cancer".
I am under no illusions , the cancer is there but the doctors and treatments have kicked the cancer for now and the meds I am I on should give me many more quality years.
So whilst I have been on this 18 month journey I have run 2 marathons on chemo, run a few 60 mile races and 2 weeks ago today I was completing a 257 kilometre race accross the Sahara carrying all my food and kit on my back.
I hope the above gives you strength and hope, yes I still have many wobbly emotional moments and yes I have felt physically rubbish at times but I have never let that stop me doing anything and remain generally strong , feel free to pm me if you want to ask anything specific or sound off, I live in Surrey.
Kev
Edited by member 29 Apr 2016 at 08:27
| Reason: Not specified
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Hi Dave
Sorry to hear your story, you are on the young side for this stage of the disease, I'm sure they've told you that at the hospital. The PSA you mention is very high, my own hubby had metastasis with PSA of 25. There are many different versions of Prostate cancer, some seem to have worse outcomes than others. My own hubby has a Gleason score of 10 and has had spots on the liver but they have gone with the hormone treatment. He was diagnosed over five years ago at age 61, he's done really well. I hope you have some family support and have Macmillan to provide support too.
We will be here for you if you have any questions.
Cheers
Devonmaid
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Afternoon All
I have not been on here for a while due to having my chemo and Radio. This has all finished now and trying to get back to normal as possible. My wife has been a rock and there to help me get up when I have been at the bottom. She has been there when she has been low as well. I had my first PSA test last week and it had risen to 10.5 after being 4.8 at its lowest due to what I have been informed bounce back from the radio.
I feel good in myself but los of aches and pains. I am back in the gym and working towards doing the Manchester run in May next year for The Christie.
I will let you know how I have gone on.
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Good to see your update Dave
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Dear Dave
Welcome to the site, but sorry that you find yourself here.
It might help others to comment if you give a little more information about your diagnosis, such as the Gleason Score and grading of the tumour - if you know these.
There is a 'toolkit' of information on this site that you can download or ask to be posted to you.
There are lots of men on here in similar situations and will be able to offer help and reassurance.
I am sure that lots of helpful advice will follow.
Kind regards
Alison
User
I do not have this information. I have a small spot on my back bone, on my Liver and in my stomach. I am 52 year old. I do not really have any symptom's. I know my grading is a 4.
User
Interesting - tell us about how you were diagnosed. There was a reason why they did a scan so had you gone to the doctor about something else originally? Have you had a biopsy?
The 4 could mean different things so it is a shame that you don't know what the letter was before it. If you are a T4, that tells any medical people looking at your notes that you have distant mets - the ones in your stomach, liver & spine.
If it was a G4 then it would have been associated with a second number - so my husband is a T3 (it had only spread locally in his pelvis) but his Gleason score was G3+4 - the G indicates how distorted the cancerous cells have become so most of the cancer cells were a 3 (quite distorted) but there were also some 4s (more distorted) G5 is the highest number so a man with the most aggressive cancer would be a G5+5. You only get a gleason score if you have had a biopsy. You get the T score from the scans.
I imagine you have started taking hormones? Prostate cancer feeds on testosterone so the hormone treatment (HT) starves the cancer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I had changed my diet and gone on dry January and got constipation and a bad back with it. I had a internal and X-ray which they found nothing wrong. It actually went away and came back again a week later. My Doctor decided to do more tests one of which was a blood test. I had the blood tests done on the Friday and he called me into the surgery on the Monday. Saying my PSA was high I have since found out it was 1058 and I had a enlarged prostate. I got a appointment for the clinic the week after when I got told with my PSA being 1058 I had prostate cancer and it had spread. I had a biopsy done on the same day. I went a week after for a Bone scan then the week after for a CT scan.
I actually now on the stampede trial and having Chemo in May. I am also on hormone injections every 3 months.
User
Looks like your treatment plan is well underway then and you will get the reassurance of the extra appointments/ contact with trial nurses via the Stampede trial.
The Chemo arm is, I understand, a good one to be on, as early Chemo has shown to be beneficial to men in your situation.
You may or may not get side effects of your hormone treatment, all men are different but most mention fatigue and weight gain.
Of course, there is lots of dietary advice that you may decide to take, regarding avoiding dairy, red meat, chicken, eggs, and promoting turmeric, pomegranate, cauliflower, broccoli etc. You can find a lot of help with this in the toolkit and within these conversations.
Referring to your initial post asking about longevity, well, all men are different and it depends how they respond to the HT but many in your situation are treated successfully for years.
With your T and G gratings as mentioned by Lynn we could give further comment.
I hope this helps a little.
Alison
User
Hi Dave
Sorry to hear your story, you are on the young side for this stage of the disease, I'm sure they've told you that at the hospital. The PSA you mention is very high, my own hubby had metastasis with PSA of 25. There are many different versions of Prostate cancer, some seem to have worse outcomes than others. My own hubby has a Gleason score of 10 and has had spots on the liver but they have gone with the hormone treatment. He was diagnosed over five years ago at age 61, he's done really well. I hope you have some family support and have Macmillan to provide support too.
We will be here for you if you have any questions.
Cheers
Devonmaid
User
Hi Dave
So sorry you find yourself here mate.
I was diagnosed at 49 18 months ago and am now 51. I was/am T4N1M1a my Gleason score was 9 and my PSA on diagnosis 342, I have spread to my lymphs around my body.
I know you are in a scary place at the moment and will no doubt feel things are happening to you for which you have no control, the emotion will also no doubt be at times too much to bare. This is sadly normal, don't fight it as for now it will be what it will be and you need to let yourself deal with it initially in a way that is personal to you.
What I can tell you for me is the treatments can work and you can have a great life in the process.
I had (have) 3 monthly injections , zoladex, which keep most of the testosterone away, I did have a daily tablet called biclutamide too but that stopped after a year. I am now on abiriterone daily which is working and hopefully will for many years.
Along the way I had chemo, 6 sessions 3 weeks apart followed by radiotherapy, 6 sessions 1 week apart all from 3 to 9 months after diagnosis. My PSA dropped to 0.3 in that time and a full body MRI a year after diagnosis said "no visible signs of the cancer".
I am under no illusions , the cancer is there but the doctors and treatments have kicked the cancer for now and the meds I am I on should give me many more quality years.
So whilst I have been on this 18 month journey I have run 2 marathons on chemo, run a few 60 mile races and 2 weeks ago today I was completing a 257 kilometre race accross the Sahara carrying all my food and kit on my back.
I hope the above gives you strength and hope, yes I still have many wobbly emotional moments and yes I have felt physically rubbish at times but I have never let that stop me doing anything and remain generally strong , feel free to pm me if you want to ask anything specific or sound off, I live in Surrey.
Kev
Edited by member 29 Apr 2016 at 08:27
| Reason: Not specified
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi Kev
Thanks for coming back to me. I go to the gym at least 4 times a week which is helping me cope with it. Plus gets me ready to start Chemo. How did the Chemo effect yourself?
I am starting to run soon to help as well. I have never been a runner but planning to do the Manchester run next year to raise money for Men United.
I have a blood test end of May so very intrigued to see what level my PSA is.
Hearing how you have reacted to the treatment gives me hope.
Did you see the story in the Daily Mail last week about how keeping fits helps with the Cancer?
Dave
User
Hi Devonmaid
Thanks for the notes I hope your hubby carries on for a lot longer.
I am in a good place at the moment and just want to get the chemo started and get on with my life.
Dave
User
Hi Dave, i was diagnosed at the age of 47, my p.s.a was 1730 and i had widespread mets in my lymph nodes and bones. In November it will be 7 years since being diagnosed. I took part in the STAMPEDE trial receiving chemo, h/t and Zometa. My p.s.a dropped below zero and stayed there for a few years. It has gradually crept up and i have changed medication adding Casodex to the mix but sadly this is now losing effect also. I go back to Onco in July and we will see whats next, they mentioned more chemo or Enzalutamide at last appointment. I have continued to work throughout treatment and have felt generally well apart from the fatigue. Good luck and God Bless
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Afternoon All
I have not been on here for a while due to having my chemo and Radio. This has all finished now and trying to get back to normal as possible. My wife has been a rock and there to help me get up when I have been at the bottom. She has been there when she has been low as well. I had my first PSA test last week and it had risen to 10.5 after being 4.8 at its lowest due to what I have been informed bounce back from the radio.
I feel good in myself but los of aches and pains. I am back in the gym and working towards doing the Manchester run in May next year for The Christie.
I will let you know how I have gone on.
User
That's great news Dave, I (perhaps luckily) feel that getting out there and trying anything is better than daytime tv , the run next year will give you a reason to go fior a walk often with a bit of running. There is no rush just build up slowly and enjoy being outside whatever the weather.
Hope you have a great Xmas , I have enjoyed every one since diagnosis more than ever.
Take care, Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi Kev thanks for that. I worked all the way through my chemo and radio which to be honest helped get me through it. It would of sent me mad staying at home. Being back in the gym is helping me get more energy. We do a lot of walking at the weekends which I love. Love spending the time with my wife.
Have a great Xmas yourself
All the best Dave
User
Good to see your update Dave
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Guys,
We are a little disturbed as yesterday we received a letter from our Onco to say that our follow-up appointment on the 31st January has been brought forward now to the 5th January, I have previously mentioned that Dave had his PSA level taken on the 6th December and it has risen from 5:2 up to 10:5, and that is after all his chemo and RT had been completed.(RT completed 2nd Nov)
We have been asked to have a routine PSA blood test at our Doctors ( 30th December) and if the results show that his level has dropped then we can attend the original appointment on the 31st Jan, however, if it has risen again then we will need to attend the appointment on the 5th Jan.
As you can imagine we are now worried sick, especially as they have called us in for an earlier appointment. We are trying to stay positive but are now worried sick as don't know if his PSA will have dropped or not. Surely after all the treatment he has undergone, it should have dropped???!!
If anyone has any advice, or experience of this happening to them then please let us know as we are going to go crazy over Xmas!
Merry Xmas!
Amanda
User
Easy to say but don't panic. After chemo and RT my PSA did drop but writhing 2 months was on the up again. They stopped biclutamide but it kept on going up so I then went on abiriterone, PSA dropped and has continued to so far for 8 months. I have no idea what your situation is but they have loads in their tool kit. You can't do anything right now so please please enjoy Xmas and see what next year brings.
If next year is bad then you will have wasted December worrying as you could not change it, if the news is good then equally you have wasted December worrying, whatever the outcome why waste Xmas worrying, just enjoy the now and cross each bridge as it comes if it comes!
Have a great Xmas
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Thanks Kev, I know it can send you insane at times. The thing is before PC was diagnosed we hadn't even heard of PSA, now it's the bane of our lives and all we seem to focus on!!!! We will try and crack on with Xmas and see if it has dropped by the 30th December. I suppose we are thinking that if it hasn't dropped with all the chemo an RT we are worried that our options are limited. Well, like you said they have plenty in their tool kit, well let's hope they have been to the B&Q sale and stocked up as we may need it!!!
Thanks for your comments good luck to you also and enjoy the festivities! I will keep things updated.
Cheers and all the best.
User
As Kev has said before it's easy to say , we were in a similar position last year having been told it was cancer Gleason 9 on the 14th of December.gary then had to have a bone scan Xmas eve and Mri 3 days after to confirm spread .He's app was booked for early January .the waiting was awful but we knew nothing would change the outcome . We went on our pre arranged new year cruise with friends and enjoyed ourselves ,also our eldest son and wife had announced we were going to be grandparents for first time so we were determined not to spoil their good news . Garys results weren't great having node spread but 1 year on he's doing fine ,after having chemo and on arm j of stampede trial he's psa is 0.01 .
He's next app is 3rd Jan so once again fear pops its head up but we are determined to enjoy every day
Best wishes to you and your family
Debby
User
Hi Debby, thanks for your comments it's appreciated. It sounds very positive news regarding your OH and it's reassuring to know that people can do well on this treatment.
Dave is on HT prostrap 3 injections 3 x monthly. He is on the stampede trial and has had 18 x cycles docetaxel chemo,followed by 20 fractions of RT. Initially our onco did say that the HT would continue to be affect for between 12-18 months and then would become less effective. Maybe he needs his HT changing. I think we just expected his PSA to have dropped and because it's now gone up we are very disheartened. Nothing we can do now but wait and we all know that's the hardest bit!!
Anyway enjoy ur Xmas with your grandchildren im sure they will keep you busy.
Cheers.
Amanda x
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Well Guys the plot thickens!
Dave attended an appointment on Tuesday this week at the Royal Preston Hospital where he underwent his RT treatment. it was just a follow up etc. They said he was doing really well and were pleased with him. They took a blood test and said they would check his PSA level.
In Dave's wisdom he decided this morning to ring them and get the results, sometimes you have to be careful what you wish for. His PSA has now shot up from 10:5 ( 6h Dec) to 15:00!!!!
AS you can imagine we are now extremely worried. We have spoken to our specialist nurse at the Christie Hospital this morning who has got in touch with our onco, again she has said she is not overly worried ( wish we were as confident) as yes the PSA is a good indicator as to what is going on, however the well being of the patient was also an indicator, and Dave was doing great, working, going to the gym etc and was feeling generally very well.
However to put our minds at rest she would arrange for a scan just to see what was going on, and to still attend the appointment on the 5th Jan as previously arranged.
So now, we are in a worse position as the PSA has gone up since last week??!!! We will still get a blood test done on the 30th December and hope and pray that this has gone down, but who knows?
The thing is with all this, you have to be very patient and that's not one of our strong points :(
Anyway as it goes on I will keep you updated.
Cheers
Amanda
User
and did you ask about the testosterone?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Lyn no did not as they were not keen on giving me my PSA over the phone. I will ask the Christie have they done this when I talk to them next
User
Yes and do your best to persuade the GP nurse to add it to the test on 30th December
Edited by member 15 Dec 2016 at 13:20
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Lol NO!! It was Dave who spoke to the Secretary at Preston. ... sigh.... oh well just got to be patient now and wait.
:(
User
I don't have a problem getting my Testosterone checked. However, that's because I take direct action (http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif):
1. For the last 2 years my Onco's nurse has given me bloods envelopes to take to my GP's nurse.
2. Those envelopes have the boxes for Renal, Liver, Bone, Urea and FBC checked. The box headed 'List additional tests here' has PSA written in it. I neatly add to that box the word 'Testosterone'.
3. When the results come back I get my GP's receptionist to print them out for me. My testosterone has stayed below 0.7 for a long time and currently is '<0.2'.
Nobody has given me a telling off for doing this although I admit I haven't drawn it to their attention.
User
It has now been organised to get my testosterone checked when I have my bloods done on the 30th with the PSA test.
Fingers crossed
User
Hope all goes well ,I actually copied coIU_FC trick and added it to garys blood form which is due beginning of January! Let's hope I don't get rumbled .
Debby
User
Lucky my GP rang me to see how I was and I asked could he put it on.
Good Luck though
Dave
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Happy New Year everyone, hope you all enjoyed yourselves.
Well our story continues, Dave's current PSA was 15 and our oncologist advised that Dave have another bone scan to try and find out why it has continued to rise since he has completed all his chemo and RT. The scan took place at The Christie on the 22nd December, and we have an appointment with our onco again on Thursday 6th January to discuss the results. She also advised we have another blood test on the 30th December to see if it has gone down. Well, what do you know...... it hasn't gone down its gone up again!!! now it showing 21.5, testosterone level 0.6.
Any thoughts anyone?
So, here we are again continuing to play the waiting game until our appointment on Thursday this week, 2017 hasn't started off as we had hoped.
:(
User
It is quite confusing when posts are duplicated - I have replied on your other thread AK
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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