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Post biopsy consultancy - worried

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User
Posted 28 Jul 2023 at 14:55

Hello all,


I had a biopsy 3 weeks ago and today I received a call asking me to attend a meeting with my consultant next week. I’m really worried about the results and thought that if it was good news they would’ve told me over the phone? Is it normal to still have to see a consultant after a biopsy if it’s good news?


I will add that prior to my biopsy the consultant said my MRI scans are 50/50, but because of raised PSA and family history he recommended a biopsy. He scored me a 3.


The doctor taking the actual biopsy said he was of the opinion (looking at my scans) that the lesions looked more like an infection due to the nature of the way they appeared. I’m struggling with this to be honest as I don’t want to get my hopes up.


Thank you for reading my post and if you have any experience of post biopsy meetings I’d be grateful if you could share. 

User
Posted 28 Jul 2023 at 15:42

The correct practice is to have a follow up meeting even if all is clear. The person arranging the appointment may or may not know your results, and perhaps more importantly may not understand what those results mean. 


In reality if you're a man over 60 you're more likely to have cancer than not have it. Though it is also usually low grade and not worth treating. For this reason the results are rarely a straight yes or no. You need a meeting to be informed of exactly what your situation is.

Dave

User
Posted 29 Jul 2023 at 23:46

HI,  I was called by an appointment clerk by phone and asked to go in for a meeting in 1 hour.  When I arrived I was told the nurse would see me.  I thought that was good as a nurse wouldn't be qualified to tell me a lot.  I was wrong because the specialist nurses do a lot and she was a Macmillan Specialist Nurse.


I knew I was going in poker faced, with a likelihood of a bad result and so it was.   I was pleased to take it well and my biggest thought was to ask what was next.


It was an MRI and a bone scan, as in those days they were done later.  The Macmillan Nurse became my point of contact who I could ring anytime.  Although she only rang back after 5pm.


Yours sounds like it has a good chance of being benign or low risk.   I don't think the doctor would say that if he thought there was a good chance of it being otherwise.   I had a skin biopsy last year and the doctor said he thought it had a good chance of being clear and it was.   


My thought would be to go in ready for bad news even if you think it won't be.  It was Kipling who wrote, if you can meet with triumph and disaster and treat them both the same.  It sounds good at the moment.


Good luck Peter

User
Posted 04 Aug 2023 at 19:12
That's a good result but can I caution you in that a biopsy can only give them a 'guestimate' of what is there - it's a sampling based on the number of cores taken.

My 13 core biopsy was 3+4=7 but after the prostate was removed it was upgraded to 4+5=9 T3bN0

I hate to have to say this but it is far better that you are fully informed of the possibilities.
User
Posted 04 Aug 2023 at 19:42

Congratulations, Mike FZ,


That's a good result.  May I suggest that you keep a close eye on them to ensure that they keep a close eye on you and that you don't get 'lost' in the system?


Best wishes,


JedSee.

User
Posted 28 Jul 2023 at 16:04
As far as I am aware, biopsy results are only ever given over with a consultation, regardless of what they say. On my medical portal, the documents are hidden from me until post consultation when the surgeon releases them.
I think this is pretty much standard as Dave said.
User
Posted 30 Jul 2023 at 09:58

The result often isn't known when the appointment is booked. It's done on the basis of knowing when the result is likely to be back from histology from the queue length of samples waiting to be analysed and turnaround time, and which MDT meeting will follow that where the results are discussed.


In some hospitals, results are given by CNS's as their consultants are not always good at breaking such news.

Edited by member 30 Jul 2023 at 10:00  | Reason: Not specified

User
Posted 04 Aug 2023 at 14:49

Today I got my results. I went in fearing the worst but hoping for the best. 
I guess I got second best with a Gleason score of 6 (3+3) T2 N0 M0, PSA 7.4. 


 It’s active surveillance for now and will hope for the best for the future.



Thank you again chaps for your posts.


 


 

User
Posted 04 Aug 2023 at 19:03

That's a reasonable result, now you have to prepare for all the friends and family telling you to get it cut out. Well it's your prostate not theirs.

Dave

User
Posted 05 Aug 2023 at 04:08

Now that you got the a ggod news and we are happy for you but I agree with Steve 88 when he said "That's a good result but can I caution you in that a biopsy can only give them a 'guestimate' of what is there - it's a sampling based on the number of cores taken."


My twice 12 cores were negative but third one core turned to be 3+4=7.


I hate to have to say this but nothing is worse than being too relaxed and later blaming yourself why you left it unattended.

User
Posted 05 Aug 2023 at 15:54

Indeed I will. I’m on the blood test scheme now, every 3-4 months to start with. 

User
Posted 05 Aug 2023 at 17:21
That's probably a good compromise - insist on a PSA test every 3 months and be prepared to react if it rises. Hopefully it won't and you'll be good!
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User
Posted 28 Jul 2023 at 15:42

The correct practice is to have a follow up meeting even if all is clear. The person arranging the appointment may or may not know your results, and perhaps more importantly may not understand what those results mean. 


In reality if you're a man over 60 you're more likely to have cancer than not have it. Though it is also usually low grade and not worth treating. For this reason the results are rarely a straight yes or no. You need a meeting to be informed of exactly what your situation is.

Dave

User
Posted 28 Jul 2023 at 15:54

Thank you Dave, your reply is really appreciated. Makes sense I guess. 

User
Posted 28 Jul 2023 at 16:04
As far as I am aware, biopsy results are only ever given over with a consultation, regardless of what they say. On my medical portal, the documents are hidden from me until post consultation when the surgeon releases them.
I think this is pretty much standard as Dave said.
User
Posted 29 Jul 2023 at 06:59

Thanks Steve. Much appreciated. 

User
Posted 29 Jul 2023 at 23:46

HI,  I was called by an appointment clerk by phone and asked to go in for a meeting in 1 hour.  When I arrived I was told the nurse would see me.  I thought that was good as a nurse wouldn't be qualified to tell me a lot.  I was wrong because the specialist nurses do a lot and she was a Macmillan Specialist Nurse.


I knew I was going in poker faced, with a likelihood of a bad result and so it was.   I was pleased to take it well and my biggest thought was to ask what was next.


It was an MRI and a bone scan, as in those days they were done later.  The Macmillan Nurse became my point of contact who I could ring anytime.  Although she only rang back after 5pm.


Yours sounds like it has a good chance of being benign or low risk.   I don't think the doctor would say that if he thought there was a good chance of it being otherwise.   I had a skin biopsy last year and the doctor said he thought it had a good chance of being clear and it was.   


My thought would be to go in ready for bad news even if you think it won't be.  It was Kipling who wrote, if you can meet with triumph and disaster and treat them both the same.  It sounds good at the moment.


Good luck Peter

User
Posted 30 Jul 2023 at 08:33

Thanks Peter for sharing your experience, it’s very much appreciated.


The Kipling comment is very much me, and I’m still unsure why the biopsy doctor would’ve said what he did. He’s raised my hopes (but not my expectations) and I still question whether he was right to say anything especially as he doesn’t know the biopsy results?


Anyway, thank you again. I’ll know more Friday and see if he was right. Gonna  be a long week. 

User
Posted 30 Jul 2023 at 09:58

The result often isn't known when the appointment is booked. It's done on the basis of knowing when the result is likely to be back from histology from the queue length of samples waiting to be analysed and turnaround time, and which MDT meeting will follow that where the results are discussed.


In some hospitals, results are given by CNS's as their consultants are not always good at breaking such news.

Edited by member 30 Jul 2023 at 10:00  | Reason: Not specified

User
Posted 04 Aug 2023 at 14:49

Today I got my results. I went in fearing the worst but hoping for the best. 
I guess I got second best with a Gleason score of 6 (3+3) T2 N0 M0, PSA 7.4. 


 It’s active surveillance for now and will hope for the best for the future.



Thank you again chaps for your posts.


 


 

User
Posted 04 Aug 2023 at 19:03

That's a reasonable result, now you have to prepare for all the friends and family telling you to get it cut out. Well it's your prostate not theirs.

Dave

User
Posted 04 Aug 2023 at 19:12
That's a good result but can I caution you in that a biopsy can only give them a 'guestimate' of what is there - it's a sampling based on the number of cores taken.

My 13 core biopsy was 3+4=7 but after the prostate was removed it was upgraded to 4+5=9 T3bN0

I hate to have to say this but it is far better that you are fully informed of the possibilities.
User
Posted 04 Aug 2023 at 19:42

Congratulations, Mike FZ,


That's a good result.  May I suggest that you keep a close eye on them to ensure that they keep a close eye on you and that you don't get 'lost' in the system?


Best wishes,


JedSee.

User
Posted 05 Aug 2023 at 04:08

Now that you got the a ggod news and we are happy for you but I agree with Steve 88 when he said "That's a good result but can I caution you in that a biopsy can only give them a 'guestimate' of what is there - it's a sampling based on the number of cores taken."


My twice 12 cores were negative but third one core turned to be 3+4=7.


I hate to have to say this but nothing is worse than being too relaxed and later blaming yourself why you left it unattended.

User
Posted 05 Aug 2023 at 15:51

Yeh, I fully get what you’re saying. I had 18 cores taken and only 1 had cancer. I’m aware that untested areas may harbour more but for now I’ll take the result. 

User
Posted 05 Aug 2023 at 15:54

Indeed I will. I’m on the blood test scheme now, every 3-4 months to start with. 

User
Posted 05 Aug 2023 at 17:21
That's probably a good compromise - insist on a PSA test every 3 months and be prepared to react if it rises. Hopefully it won't and you'll be good!
 
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