I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

What questions to ask

User
Posted 08 May 2020 at 15:25

My husband is to receive his TRUS results from a Urology Nurse on Monday over the phone.  If it’s a cancer diagnosis is there anything in particular we should be asking?

On the list is......grade/score, where in prostate, is it contained, treatment options, when do we see Consultant, will there be  scans.

Have I missed anything?  Thank you 🌹

User
Posted 08 May 2020 at 17:41

You want the PSA value at diagnosis - you might already know this.

Of the TNM staging, you should be able to get the TxNx staging, but not the Mx yet - that comes from a nuclear bone scan which will follow. They might want to do a CT scan for the Nx too if it wasn't clear on the mpMRI scan.

You also want to know the gleason score, and you probably want to know where it is and size in the prostate. You could ask for the prostate size too - there's an enormous variation in that - it's not related to the cancer, but can be useful for interpreting PSA values now and in the future.

I don't think they'll give you treatment options yet, because it will depend on bone scan, but they might be able to tell you some things that are ruled out. You could ask what the options are if the bone scan is clear. For a prostatectomy, I would want to know the chances of it being nerve sparing.

Write your questions in on a piece of paper, with a pen to write the answers down. Do that during or immediately after the call. It can be useful to have your partner or a friend on the call too, to catch anything you miss. My consultant actually takes my question sheet and writes the answers on it, which would be fantastic if I could read his writing. Some consultants may allow you to record the session on a phone, but you mast ask (in that case, they have to record it too and put it in your medical records). My treatment hospital will even do that for you and give you a CD (although maybe not for a phone consultation).

I had decided before I had this appointment that I had cancer, and it did help with keeping my cool because when the consultant told me, it was what I was expecting. This strategy won't necessarily work for everyone.

I wish you all the best.

User
Posted 09 May 2020 at 13:23

If its anything like mine they should tell you

How many sample cores they did and in how many they found cancer and whether they were left or right side or both

They should then tell you % of cancer in the cores they found plus the Gleason score

The Gleason score will be from 6 to 10 and be either 3+3, 3+4, 4+3, 4+4, 4+5,5+4 or 5+5

Has your husband had an MRI? If so there should be report with a staging

Good luck 

User
Posted 09 May 2020 at 15:10

It is bizzare. Some areas can't do mpMRI scans so go straight for biopsies.

Some areas do the scans, but can't do the biopsies. (Talking with a consultant in one area, you can get an MRI scan same day, because they're not in use for COVID-19 and there are no queues, but they can't get any further because all the nurses and anesthetists and theatres are tied up with other things.)

You need both before you can get the staging and the proposed treatments, if any treatment is required.

User
Posted 09 May 2020 at 15:11
My initial Grading was raised from T2A to T3A after MRI so this sometimes does change it. Unfortunately MRI not done first as Prostate needs time to heal from Biopsy to get best diagnosis from scan,
Barry
User
Posted 09 May 2020 at 17:10
If he does get the news that they found cancer in the biopsy samples, as well as asking the things suggested above about Gleason scrore , number of cores taken, number of cores positive and % of positive cores that were cancerous, do remember to ask them to confirm the type of prostate cancer. The most common is adenocarcinoma but there are at least 27 different types.

If it is prostate cancer, he won't necessarily be offered a bone scan - it depends on the results and where you live. But I would be pressing for the mpMRI regardless of biopsy results although as Barry says, there will have to be a bit of a delay now to let the prostate heal from the biopsy.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Show Most Thanked Posts
User
Posted 08 May 2020 at 17:41

You want the PSA value at diagnosis - you might already know this.

Of the TNM staging, you should be able to get the TxNx staging, but not the Mx yet - that comes from a nuclear bone scan which will follow. They might want to do a CT scan for the Nx too if it wasn't clear on the mpMRI scan.

You also want to know the gleason score, and you probably want to know where it is and size in the prostate. You could ask for the prostate size too - there's an enormous variation in that - it's not related to the cancer, but can be useful for interpreting PSA values now and in the future.

I don't think they'll give you treatment options yet, because it will depend on bone scan, but they might be able to tell you some things that are ruled out. You could ask what the options are if the bone scan is clear. For a prostatectomy, I would want to know the chances of it being nerve sparing.

Write your questions in on a piece of paper, with a pen to write the answers down. Do that during or immediately after the call. It can be useful to have your partner or a friend on the call too, to catch anything you miss. My consultant actually takes my question sheet and writes the answers on it, which would be fantastic if I could read his writing. Some consultants may allow you to record the session on a phone, but you mast ask (in that case, they have to record it too and put it in your medical records). My treatment hospital will even do that for you and give you a CD (although maybe not for a phone consultation).

I had decided before I had this appointment that I had cancer, and it did help with keeping my cool because when the consultant told me, it was what I was expecting. This strategy won't necessarily work for everyone.

I wish you all the best.

User
Posted 08 May 2020 at 18:35

That’s a great help Andy, so grateful. We are expecting “bad news” but Hubby’s not like me.....I research and read therefore I have an idea of how “good” or how “bad” the news may be. Maybe over the weekend I will chat to him....it’s going to be a long one 🌹

User
Posted 09 May 2020 at 13:23

If its anything like mine they should tell you

How many sample cores they did and in how many they found cancer and whether they were left or right side or both

They should then tell you % of cancer in the cores they found plus the Gleason score

The Gleason score will be from 6 to 10 and be either 3+3, 3+4, 4+3, 4+4, 4+5,5+4 or 5+5

Has your husband had an MRI? If so there should be report with a staging

Good luck 

User
Posted 09 May 2020 at 13:49

Thanks Mike. No he never got an MRI due to Covid situation. Does that mean he won’t be staged until he has scan?

User
Posted 09 May 2020 at 13:53

I think you need the MRI for the staging-that was the way it worked for me

Have you got a PSA score? 

User
Posted 09 May 2020 at 14:26

Yes, PSA remained 12.3

User
Posted 09 May 2020 at 15:10

It is bizzare. Some areas can't do mpMRI scans so go straight for biopsies.

Some areas do the scans, but can't do the biopsies. (Talking with a consultant in one area, you can get an MRI scan same day, because they're not in use for COVID-19 and there are no queues, but they can't get any further because all the nurses and anesthetists and theatres are tied up with other things.)

You need both before you can get the staging and the proposed treatments, if any treatment is required.

User
Posted 09 May 2020 at 15:11
My initial Grading was raised from T2A to T3A after MRI so this sometimes does change it. Unfortunately MRI not done first as Prostate needs time to heal from Biopsy to get best diagnosis from scan,
Barry
User
Posted 09 May 2020 at 17:10
If he does get the news that they found cancer in the biopsy samples, as well as asking the things suggested above about Gleason scrore , number of cores taken, number of cores positive and % of positive cores that were cancerous, do remember to ask them to confirm the type of prostate cancer. The most common is adenocarcinoma but there are at least 27 different types.

If it is prostate cancer, he won't necessarily be offered a bone scan - it depends on the results and where you live. But I would be pressing for the mpMRI regardless of biopsy results although as Barry says, there will have to be a bit of a delay now to let the prostate heal from the biopsy.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
©2024 Prostate Cancer UK