Where do I start...Oh what a conundrum!
This blooming cancer lark is a right old nightmare.
When we went to see the oncologist before Christmas, she was keen for Ady to have adjuvant radiotherapy, regardless of what his PSA was doing.
She wanted him to go away and recover from surgery and do his best to regain his continence and erectile function and then come back with a view to starting radiotherapy. She also said that Ady might come back in January with a zero PSA, feeling well and decide that he doesn’t want radiotherapy and would rather wait and see until his PSA rises and then have salvage radiotherapy, but in her view, he is at a very high risk of recurrence and she felt that he should have radiotherapy.
So, we have been preparing ourselves for Radiotherapy. The oncologist thinks he should have it, so he will have it. Great. Sorted.
She said that he can enter the trial called radicals where they are trying to see if it is better to give prostate cancer patients adjuvant therapy or salvage therapy. There are lots of different ‘arms’ to this particular trial. One of them is the radiotherapy arm where you are randomised into a computer, and it tells you if you are to have radiotherapy or go on active surveillance (wait and see). She said that if he gets the wait and see option, then she will pull him out and give him radiotherapy off the trial.
If he likes, he can enter the hormone arm of the trial, where they randomise you into either no hormones, 6 months of hormones or 2 years of hormones, regardless of the radiotherapy she wants him to have.
So, it is now the end of January and we went to see her today, thinking that we were going to get the dates for the radiotherapy.
I shall get down to the nitty gritty, cos it is confusing and long winded.
Basically, she is pleased that his PSA is still Zero and pleased that his continence has improved. She is also delighted that his erectile function is improving too. So much so that she is now undecided if he should go ahead with the radiotherapy because of the down sides.
We had a good chat about it all and she has left it up to Ady to decide what he wants to do. This is a man who can’t decide what colour top to put on in the mornings! Oh dear God!
Here are the facts and figures we have to think about....
His PSA is still zero. That’s a good thing. Has the surgery worked and is he ‘cured’?
Ady has a 70% chance of the cancer returning if we ‘wait and see’.So a 30% chance it wont.
Men deemed at high risk of recurrence are those with one of the following; extra capsular extension, positive margins, seminal vesicle invasion and a high starting PSA. Ady has all of those.
Because of Ady’s previous bowel surgery, there is a 20% chance that he will become permanently incontinent because of the radiotherapy. Should we think that that means there is an 80% chance he wont?..Men who have not had bowel surgery have a 10% chance...
Ady will have to stop his Methotrexate (arthritis medication) for the 4 weeks of radiotherapy. How will that effect him?...he can have a steroid injection to cover him if he wants.
Any erectile function he has gained, will be lost forever with radiotherapy.
There is a 30% chance the cancer wont come back.
He will be incontinent of urine during and a little while after radiotherapy.
What if we go for radiotherapy, end up with all the side effects and he didn’t need it?
What if we don’t go for radiotherapy and his PSA rises, so then we wish we had gone for the radiotherapy, so we have salvage radiotherapy, only to find that it has spread to his bones?
Would adjuvant therapy have stopped the spread?
What if it has already spread and adjuvant radiotherapy is a waste of time?
So in a nutshell, she wants him to have radiotherapy now cos he is a high risk patient, but she doesn’t want him to have it because of the risk to his bowels and erectile function, oh, and the arthritis meds.
Ady has been left with the choice of what to do now.
At the moment, we are seeing the trials people on Monday and we can ring the oncologist when we like.
So many question and no bloody answers, so please put yours on a postcard !