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User
Posted 08 Sep 2024 at 17:19

About 6 years ago after an MRI following a slightly raised PSA I was told I had an enlarged prostate but no sign of cancer. I was advised to just keep the PSA level under review but not to worry until it passed 10. This May it hit 9.5 and my GP decided to get some some more tests and a reference to the urologist. So after all the usual tests and a biopsy I was told on Wednesday that I had prostate cancer with a Gleason score of 7 - no other details I'm afraid as I did not know what to ask. According to the consultant he did not think surgery was appropriate and there were no signs it had spread beyond the prostate and that I could start hormone therapy immediately whilst waiting to see the oncology "team". He discussed the issues with the hormone therapy but was quite bullish about my prospects in the longer term - although I might ask for the estimate that I should be good for well over 15 years as I am 75 now to be put in writing! So I am here to learn from others experience even if I am baffled by some of the acronyms.

On a practical point I now understand that there are a range of "ratings" in addition to the Gleason score so where do I go to ask someone to tell me what those results are or will they come at the discussion with the oncology team?

User
Posted 08 Sep 2024 at 20:12

It does sound like you have been somewhat short changed on information at your diagnosis appointment. That said, it is always difficult to take on board everything that has been said when you have just been told you have PCa. The Gleason score of 7 should have been explained ie a Gleason (3 + 4) is more less aggressive than a Gleason (4 + 3). Which is it? You should have been given the staging of your Pca in the format Tx. Nx. Mx. However if "there were no signs of spread beyond the prostate" then that is good news. If surgery has been ruled out then you don't have the dilemma of having to choose between surgery and hormone therapy/radiotherapy but it would be helpful to know the reasoning behind this. Have you been given the name of a nurse specialist you can speak to? Usually you are allocated to one at the time of diagnosis. I'm sure he/she could fill in the blanks. Hopefully the Oncology team will be more informative with your options when you get to see them.

User
Posted 08 Sep 2024 at 20:38

Here is a thread suggesting what to ask the oncologist.

https://community.prostatecanceruk.org/posts/t29667-D-day-tomorrow#post285177

 

Dave

User
Posted 09 Sep 2024 at 08:48

Hi CWC,

If surgery has been ruled out and it hasn’t spread, then there must be some other reason for this, It could be your age, I think I’ve heard 75 is normally the cut off age for surgery…or perhaps some other health reason. At your age the outcomes for either treatment are likely to be similar, but they will get you started on HT quickly I would imagine, probably start with a 4 week course of Bicalutamide tablets to prevent testosterone flare and after 2 weeks,  start 3/6 monthly injections.

Without knowing your staging it’s difficult to comment further but I wish you good luck on your journey.

Derek

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User
Posted 08 Sep 2024 at 20:12

It does sound like you have been somewhat short changed on information at your diagnosis appointment. That said, it is always difficult to take on board everything that has been said when you have just been told you have PCa. The Gleason score of 7 should have been explained ie a Gleason (3 + 4) is more less aggressive than a Gleason (4 + 3). Which is it? You should have been given the staging of your Pca in the format Tx. Nx. Mx. However if "there were no signs of spread beyond the prostate" then that is good news. If surgery has been ruled out then you don't have the dilemma of having to choose between surgery and hormone therapy/radiotherapy but it would be helpful to know the reasoning behind this. Have you been given the name of a nurse specialist you can speak to? Usually you are allocated to one at the time of diagnosis. I'm sure he/she could fill in the blanks. Hopefully the Oncology team will be more informative with your options when you get to see them.

User
Posted 08 Sep 2024 at 20:38

Here is a thread suggesting what to ask the oncologist.

https://community.prostatecanceruk.org/posts/t29667-D-day-tomorrow#post285177

 

Dave

User
Posted 09 Sep 2024 at 08:48

Hi CWC,

If surgery has been ruled out and it hasn’t spread, then there must be some other reason for this, It could be your age, I think I’ve heard 75 is normally the cut off age for surgery…or perhaps some other health reason. At your age the outcomes for either treatment are likely to be similar, but they will get you started on HT quickly I would imagine, probably start with a 4 week course of Bicalutamide tablets to prevent testosterone flare and after 2 weeks,  start 3/6 monthly injections.

Without knowing your staging it’s difficult to comment further but I wish you good luck on your journey.

Derek

User
Posted 09 Sep 2024 at 12:01
I did not do much research before the consultation on the grounds that you can frighten yourself to death but clearly that meant I did not know what to ask! I do have a specialist nurse so I will be asking her for some more information. I am starting the Bicalutamide this week and trying to get some clarity beyond that about the timing of the injections. Looks like a steep learning curve but is there a glossary of acronyms anywhere ?
User
Posted 09 Sep 2024 at 12:19
User
Posted 11 Sep 2024 at 13:04

So I took the advice and had a chat with my specialist nurse and now I have a quite comprehensive list of metrics about my cancer.

The Gleason score is 7 made up of 3+4  and the Gleason Grade is 2.

The tumour is defined as a T2 meaning it is confined to the prostate.

He quoted the positive cores as 5/22 made up of 4/12 in the right posterior and 1/10 in the right front.

And the N and M scores are 0.

Now as if I understand what I have read that means it is a reasonably good diagnosis - if a cancer diagnosis can be described as good.

The most worrying thing was when I asked my GP surgery about booking the Zoladex injection which has to be 14 days after I start the tablets and despite it being on the prescription they seemed unaware of it. Given it has to be done on a specific day I was a little worried about this as I am confident given the age profile of my local population I cannot be the first patient to need such a process. Guess I need to go back and be a pain about booking a date. Is this sort of "confusion" common?

He was also helpful in describing the pathway to a consultation on radiotherapy.

So thanks for the pointers.

 

 

 
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