Over the weekend, I spent most of my time googling bits of the pathology report and reading Dr Patrick Walsh’s ‘Guide to Surviving Prostate Cancer’ book, which incidentally, has now turned into a bible.
I wrote down lots of questions and things I wanted clarifying to make sure I understood what I was reading.
Our appointment was at 12.40, so plenty of time to drop the girls at school, check on Betty and Brian (my elderly people I look after), go home, change clothes and have a coffee before setting off to the hospital.
Well, I was just on my way from Betty’s to Brian’s when Ady rang. Sarah, the uro nurse rang to ask if there was any chance that we could come in early, as in now, because Mr D (our surgeon) had to go somewhere else at lunch time. “No problem”, Ady happily said, “I will phone the wife and get her to come and bring me in”. So poor Brian got a very short visit today, but he was great and understood. He was also more than happy that I promised him fish and chips for lunch!
We got to the hospital (whoever designed the car park, needs sacking) and went straight in to see Mr D.
Mr D is a very nice man, very down to earth and tells it as it is. We very much like that cos we don’t like guessing games.
I can’t remember if I mentioned this after Ady’s surgery, but he complained of a very sore arse (as he has done over the months) and was barely able to sit....SIT, not shit *shakes head*
Well, Mr D said that his surgery was a challenge because of his previous colon surgery. The back of the prostate was stuck to the colon wall with lots of scar tissue and he had a bit of a time cutting it away. Mr D told Ady that his assistant had to spend all the time in surgery with his fingers up Ady’s arse trying to push against it, to make sure Mr D didn’t cut into the bowel!
“So you were buggered for hours Ady, and my assistant got cramp after 3 hours” (you need to read that in an Irish accent). Me and Ady rolled about on the floor laughing and at least that explained his sore arse problem.Christ, you can just imagine, poor Ady on the table, tilted upside down with some bloke standing there with his fingers up his arse and Ady’s legs in stirrups!
Mr D also showed the picture of the leak from the urethra and explained why he wanted the catheter in for another week and he went through the pathology report, explaining everything.
He has said not to worry about the seminal vesicle invasion or the extracapsular extension as it could be more invaded than it is, but the positive margin is of slight concern. Around the back of the prostate where he had trouble cutting, he couldn’t get a wide enough margin and so that is where the positive margin is.
The post op PSA test is supposed to be 6 weeks after surgery, to allow the body time to get rid of all the PSA in the blood. It should come back under 0.1 which is deemed undetectable.
Because we are seeing the Oncologist on 25th October, he has suggested that we get the PSA test done a week early, ready for the Oncologist to see. Apparently it will save a lot of faffing around...That test will be 5 weeks after surgery and if it comes back at 0.1, then we are OK and no need for another test straight away, but if it comes back higher, then to test again a week later so we are on the 6 week marker.
Now, if the PSA is detectable, then there is no discussion and radiotherapy will be given, but if it is undetectable, then the oncologist will offer Ady to go on a trial called Radicals. He may not be eligible for the trial because it involves radiotherapy and because he has had colon surgery right where they will want to blast it, it may damage him when he doesn’t need it yet (you may want to google Radicals trials to understand what I am on about). He may of course, have to have radiotherapy if the PSA is detectable, in which case, he will have to chance his arse again.
I asked about stage 4 with mets and lymph nodes. He said that they don’t know if his lymphs are free of cancer and he could also have micromets in his back or somewhere that they don’t know about yet, and as we have found out, the MRI didn’t show the spread he had. It will be a rise in PSA that will indicate further growth.
Anyway, in all, Mr D was very pleased with the way surgery went under the circumstances, and now I think we are on a wait and see mission.
We then went and saw Sarah, our new uro nurse who is lovely and she is very pleased with the way Ady is peeing. He is managing to stay pretty dry, and telling people that it’s not normal living in a grow bag. He is absolutely determined to get continent again!
We have decided not to battle about incontinence pads and we will just buy our own.
On our way home, we dropped off at our doctor’s surgery to see if we could get a PSA test in for Thursday. I left Ady in the car and popped in to see the receptionists. I explained the situation and they said that they would have to create room. I then had a brainwave and suggested that perhaps the community nurses assistant, who happens to be my neighbour and takes the blood, might like to pop in on her rounds and take it at home. That was thought to be a great idea, so I rang her and she said yes. Then our lovely GP came along and said hello. He agreed about the blood and all is set. I have to blood bag thing with me ready. I do like our new surgery!
Lovely GP man was asking how Ady was getting on, and we were chatting about today with Mr D and the upcoming Onco appointment and generally how we all are, when he pointed to a leaflet asking for patient reps to have a meeting with the doctors to see how they can improve their services. He said “I know you probably have enough on your plate, but you might be interested in this”. I looked at it and said “Oh what a good idea, I could be up for that if it helps”
“Well, he said, it would be nice if you put your name down for it because we usually only get....erm......posh”....Before he could say anymore, I interrupted with ”Are you saying I’m common?”As I glared.
“Oh no!, I meant old people of that type and it would be nice to have someone young”
“Oh” I said “Well if you are calling me young, then count me in”
The receptionists were giggling away at what must have looked like the beginnings of a Catherine Tate moment.
I think our lovely GP might be getting my sense of humour, which I have been told is an acquired taste, because he laughed at me today, but the other week, my mention of selling Ady’s Viagra on the black market, went straight over his head!
That’s it for today, I think. The winter netball season has started and so I am off out tonight to pull a few ligaments...hopefully not my own though!
We are Emma, Ady, Charlotte and Stephanie and we live at: