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PSA over 100 - what should we ask??

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User
Posted 13 Mar 2017 at 22:19
Father in law has this evening been for a private consultation following 2 PSA tests over 130 and consultant has done rectal exam and confirmed very likely cancer.

Very frustrating as symptoms have been present for months and GP kept saying unlikely and did not test.

NHS appt is friday - what should he ask??

What will the next steps be?

Any advice gratefully received!

C x

User
Posted 14 Mar 2017 at 00:50

Hi Catlain

Sorry for the reasons that have brought you to the forum, but I'm sure that you'll get fantastic support and help from the members. I have!

This first appointment is likely to be pretty standard; the consultant will want to do further tests - biopsy and bone scan - in order to check if it is cancer, where it is, and if it's spread. Then they will discuss your options. If you can update your profile with this info it will help members to respond appropriately rather than guessing!

Waiting is really tough but I suggest you download the Toolkit from this site which gives an overview of the various treatments (there are lots) and the pros and cons of each. I found it really helpful and it did lessen the panic a bit to get my head around the options, and realise the extent of the continuing research and treatments available.

Re what to ask... once you are clear about whether it is cancer, and what stage it's at, here are some questions that might help (suggested to me by one of the members on this forum when I was at the start of this journey):

1. What are the treatment options? 

2. In each case, what will be the potential benefits and how rapidly will it be effective?

3. How long is it likely to be effective? (best-case scenario so that we stayed positive!)

4. When will it start? How, where and how frequently is it administered?

5. What are the likely side effects and what could be done to lessen them?

Good luck. Let us know how you get on.

Take care

Eleanor

User
Posted 14 Mar 2017 at 20:55
Hi Caitlin,

I second all of the above advice but just wanted to add that Trevor's initial PSA was 13000 at diagnosis and he is still here at almost 4 years on in May so don't give up hope and try and stay positive although I know it is hard.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Mar 2017 at 21:32

I can only speak from my own (recent) experience . . . . first thing is that after the initial shock and rush to action suddenly there is no rush as this disease moves very slowly i.e. doing nothing this week/month isn't going to make any difference. There is then the biopsy and that delivers a number. That number together with the MRI scan dictates the treatment options/choices. That's the crucial point (IMO) choosing that treatment option.

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User
Posted 14 Mar 2017 at 00:50

Hi Catlain

Sorry for the reasons that have brought you to the forum, but I'm sure that you'll get fantastic support and help from the members. I have!

This first appointment is likely to be pretty standard; the consultant will want to do further tests - biopsy and bone scan - in order to check if it is cancer, where it is, and if it's spread. Then they will discuss your options. If you can update your profile with this info it will help members to respond appropriately rather than guessing!

Waiting is really tough but I suggest you download the Toolkit from this site which gives an overview of the various treatments (there are lots) and the pros and cons of each. I found it really helpful and it did lessen the panic a bit to get my head around the options, and realise the extent of the continuing research and treatments available.

Re what to ask... once you are clear about whether it is cancer, and what stage it's at, here are some questions that might help (suggested to me by one of the members on this forum when I was at the start of this journey):

1. What are the treatment options? 

2. In each case, what will be the potential benefits and how rapidly will it be effective?

3. How long is it likely to be effective? (best-case scenario so that we stayed positive!)

4. When will it start? How, where and how frequently is it administered?

5. What are the likely side effects and what could be done to lessen them?

Good luck. Let us know how you get on.

Take care

Eleanor

User
Posted 14 Mar 2017 at 17:36
Thank you for taking the time to reply and offering very sound advice!
User
Posted 14 Mar 2017 at 20:55
Hi Caitlin,

I second all of the above advice but just wanted to add that Trevor's initial PSA was 13000 at diagnosis and he is still here at almost 4 years on in May so don't give up hope and try and stay positive although I know it is hard.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Mar 2017 at 21:32

I can only speak from my own (recent) experience . . . . first thing is that after the initial shock and rush to action suddenly there is no rush as this disease moves very slowly i.e. doing nothing this week/month isn't going to make any difference. There is then the biopsy and that delivers a number. That number together with the MRI scan dictates the treatment options/choices. That's the crucial point (IMO) choosing that treatment option.

User
Posted 14 Mar 2018 at 10:15
Just wanted to update for anyone in similar situation - we are now nearly 12 months on and following chemo he is doing really well and PSA below 0 in most recent test.

They are not removing as it has spread but they can contain and are very hopeful.

As scary as the initial messages sounded we are looking at a really positive outcome x

User
Posted 14 Mar 2018 at 10:27

Great news Caitlain. Sounds similar to my situation only I was diagnosed 20 months ago.

Dave

Your post is timed at 11:15:12 and my watch says 10:26:14? 🤔

And now I have posted it mine is a hour out as well!!

Edited by member 14 Mar 2018 at 10:28  | Reason: Not specified

 
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