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Hello, just diagnosed

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User
Posted 19 Oct 2020 at 13:38

Hello All

Just been diagnosed and feeling pretty shocked, been reading this site for a few days and found a lot of the info very useful.

Been told I have advanced PC and just waiting for a Bone and MRI scan and biopsy. PSA 383. At the age of 53 and fairly fit and healthy it has been a very strange week dealing with all the emotions this news brings.

Got to just try and keep positive I suppose and try not to keep waking up at night thinking about it !

Thank You

User
Posted 19 Oct 2020 at 14:27
Try and think positive mate. 16 months since I got diagnosed with advanced prostate cancer, psa 439. The usual cocktail of chemo and prostap for 4 months, now just the prostap. PSA at last test was undetectable by my own NHS standard test and a recent ct scan showed no evidence of metastatic cancer, it was previously showing on my pelvis and rib. I live normally, work and regular hill climb and walk on average around 6 miles daily. So don't get too down just yet if you can.

User
Posted 19 Oct 2020 at 16:03

hi there , I was 342 on diagnosis aged 49, cancer had spread, still fine at 55, had all the usual stuff, chemo, radiotherapy,  abiraterone etc and still running ultramarathons. Today was my 302nd consecutive day running , I know right now is a scary place for you but life can go on with a new ok normal even though you don’t believe it right now.

keep posting and asking any questions as you go, no such thing as a bad post, if it’s in your head then say rather than bottle it up. 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 19 Oct 2020 at 17:19
Hello

Im another with a high psa at diagnosis.

I started at 235 with spread to my hip and other blobs here and there.

That was nearly 6 years ago over which time Ive only taken drugs of HT Prostap and enzalutamide. My psa is now .07 and has been in that area for over 5 years.

Its a new level but its still a good life.

I used to run but now just do 6/8 mile hikes and ride my motorbike.

Im fine but I will never forget the first year. It was scarey but the worst goes away with time

Stay fit, stay positive, eat the right foods.

Keep on posting.

Paul

User
Posted 19 Oct 2020 at 19:30

Hi,

Did they say why they diagnosed advanced before the biopsy, MRI and bone scan? 

The doctor may have felt a severe abnormality with his finger but it's not a full diagnosis and may not be a diagnosis at all.    It's a high psa, perhaps with notable signs at DRE, which often points in that direction but not necessarily so.

Wait for the full diagnosis unless there's  something you haven't mentioned.

Good luck, Peter

User
Posted 19 Oct 2020 at 21:48

Hi Stuart

I remember feeling overwhelmed but once results were all in and a plan was in place it was a bit easier especially with the help and support from this great group.

Good luck

Edited by member 19 Oct 2020 at 21:49  | Reason: Spelling error

User
Posted 11 Nov 2020 at 13:29

Hello

Had results back from the scan's and Biopsy, Gleason score of 9 (4+5), luckily (if you can say that with PC) it hasn't spread to the bones, which due to other symptom's the doctor said they were pleasantly surprised about.

Next stages will be chemo, got a consultation this Thursday to determine when.

Seems to have been a very surreal month after having a check up at the doc's on 5th October, thinking I was wasting his time, and then getting the shock of my life!!

Good luck to anyone going through this, especially if you have been recently diagnosed like me.

Thank You

Stuart

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User
Posted 19 Oct 2020 at 14:27
Try and think positive mate. 16 months since I got diagnosed with advanced prostate cancer, psa 439. The usual cocktail of chemo and prostap for 4 months, now just the prostap. PSA at last test was undetectable by my own NHS standard test and a recent ct scan showed no evidence of metastatic cancer, it was previously showing on my pelvis and rib. I live normally, work and regular hill climb and walk on average around 6 miles daily. So don't get too down just yet if you can.

User
Posted 19 Oct 2020 at 16:03

hi there , I was 342 on diagnosis aged 49, cancer had spread, still fine at 55, had all the usual stuff, chemo, radiotherapy,  abiraterone etc and still running ultramarathons. Today was my 302nd consecutive day running , I know right now is a scary place for you but life can go on with a new ok normal even though you don’t believe it right now.

keep posting and asking any questions as you go, no such thing as a bad post, if it’s in your head then say rather than bottle it up. 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 19 Oct 2020 at 17:19
Hello

Im another with a high psa at diagnosis.

I started at 235 with spread to my hip and other blobs here and there.

That was nearly 6 years ago over which time Ive only taken drugs of HT Prostap and enzalutamide. My psa is now .07 and has been in that area for over 5 years.

Its a new level but its still a good life.

I used to run but now just do 6/8 mile hikes and ride my motorbike.

Im fine but I will never forget the first year. It was scarey but the worst goes away with time

Stay fit, stay positive, eat the right foods.

Keep on posting.

Paul

User
Posted 19 Oct 2020 at 19:30

Hi,

Did they say why they diagnosed advanced before the biopsy, MRI and bone scan? 

The doctor may have felt a severe abnormality with his finger but it's not a full diagnosis and may not be a diagnosis at all.    It's a high psa, perhaps with notable signs at DRE, which often points in that direction but not necessarily so.

Wait for the full diagnosis unless there's  something you haven't mentioned.

Good luck, Peter

User
Posted 19 Oct 2020 at 21:48

Hi Stuart

I remember feeling overwhelmed but once results were all in and a plan was in place it was a bit easier especially with the help and support from this great group.

Good luck

Edited by member 19 Oct 2020 at 21:49  | Reason: Spelling error

User
Posted 20 Oct 2020 at 08:52

Hi

Thank you for your replies, your words all bring some comfort. 

I have had two internal exams and the doctors has said it's Advanced PC, but I really need to get the scans done just to give me some idea of where I am, at the moment I have 1000 different scenarios running round in my head.

I had a bone scan planned yesterday but it was cancelled due to a positive COVID test amongst a staff member at Christies so they couldn't produce the stuff I needed injecting with, hugely frustrating. They are hoping to do it again later this week then the MRI and Biopsy Monday & Tuesday next week.

Thank You

User
Posted 11 Nov 2020 at 13:29

Hello

Had results back from the scan's and Biopsy, Gleason score of 9 (4+5), luckily (if you can say that with PC) it hasn't spread to the bones, which due to other symptom's the doctor said they were pleasantly surprised about.

Next stages will be chemo, got a consultation this Thursday to determine when.

Seems to have been a very surreal month after having a check up at the doc's on 5th October, thinking I was wasting his time, and then getting the shock of my life!!

Good luck to anyone going through this, especially if you have been recently diagnosed like me.

Thank You

Stuart

User
Posted 11 Nov 2020 at 15:07
Hi Stuart ,my husband was (4+5) 5 years ago with lymph node spread ,he underwent chemo which brought his PSA down to 0.01 undetectable and has been there ever since . He still works full time ,he is on the stampede trial which involves taking other drugs (Abi & Enzo) .

Download or order the toolkit that is offered on this site , you will get lots of information.

Good luck .

Debby

User
Posted 09 Dec 2020 at 12:17

Hello 

Following numerous scans and a PSMA pet scan, I'm now having radiotherapy in January. My consultant has also recommended a 2 year course of Apalutimide, anyone else on this drug, has it improved things ?

Thanks

Stuart

 
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