fathers long journey

Posted by: cathy in Tis - Carcinoma in situ: "flat tumor"radical cystectomymens issuesbladder cancerBCG on Print PDF

were do I begin, Mum & Dad made the 3 hour journey on Monday so that dad could begin the bowel prep on Tue, Fasting from Mon night, he began the bowel prep on tue, tue came & went, up early and of to the hospital for a 7am start. My sister & I got on the road around 4am & arrived just after 7am, he hadnt gone anywhere yet so we were able to see him before he went in. They called him in & both mum & he went in. Whilst in the bed waiting the anathesist came in & said, so your in for your bi-op, mum said know I think its a little more serious than that, he said no your in for a bi-op. He then went on to say the dr will explain further. Dr came around & said he was from the UK (been in Aust 1 week) & he had looked at all Dads notes last night & thought that rather than do the r/c he would do another bi-op at the same site as the last one, (about 5 weeks ago) to see if there was any tumor left behind, & possibly offer Dad bcg treatment, dependant on the results from bi-op. Mum came out to tell us girls what was happening, (or not happening) we could not belive it, we wanted some answers & asked to speak to someone. The resident uro couldnt give us an explaination & he said he would try & get the surgern to speak to us, He did.
Told us that rc was a very serious op (we knew) & that he wasnt convinced that the urita had tumor & that it may have been scare tissue showing up on ct scan. Explained there was 2 types of bladder cancer (dad has had both)& he wanted to be sure what they were dealing with & that he maybe able to offer BCG as another treatment option.
They said that Dad would proberly go home later that Day, they took him of to theatre, when he came out thay said that he would have to stay in at least overnight as he had a cath in.
We went back in later and Dad said that the res uro had been in to see him & that the Australia dr was away ( the one that wanted to take out the bladder) & the uk dr wanted to maybe try a different option (BCG) before doing r/c, dependant on path.
Well today when we went in to see Dad, the uk Dr came to see us.
He said that he will need to stay in till at least Sat as he has gone quite deep, there was more tumor in the same area & into the L urita, he chopped it away, & the area is quite thin (as you would imagine after 30 odd cysto & turb's) the cath needs to stay in to allow some healing.
Awaiting path results, see him in about 2 weeks & go from there.
As you all can well imagine, we are at our wits end, this emotional roller coaster is set to continue for some time.
I do realise the r/c was not the answer to all our prayers, but we were hopeful it would increase his time & quaility of life. We knew it was a big thing & had come to terms with this, mum & dad even had there bathroom renovated to put a toliet in.
I am just so emotionally drained right now & truly believe that we will be going down this road again (r/c)in the not so distant future. I will try & keep you updated.
Cathy.
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Wendy
September 20, 2007

Dear Cathy,

That has to be one of the weirdest experiences I've ever heard, talk about an anti-climax. I would have been angry at this but that doesn't help anything.

What else can we do but hope for the best.
Wendy

cathy
September 21, 2007

Thankyou Wendy, we are hoping for the best, the thing I find hardest to deal with is the fact that we had discussed the options or lack of.

1. chemo into bladder/BCG but she said
*It could still progess whilst on chemo
*It wouldnt work if there was muscle involvement. Which they could not rule out.

2 Surgery, R/C

3 Radiotherapy, this option was crossed out as she said it wouldnt work.

So from descussing the risks, pros & cons, Dad decided that the only option was bladder removal, as agreed with by the Dr.

How can you have pre-op, sign concent form, have bowel prep & go to hospital for major surgery only to be told on the day of surgery, now we are doing another bi-op on the previously bi-op site before we put you through the r/c.???? I am angry, WE are angry and no this does not help, I still think that the family should have at least been consulted, although he say's that he only seen Dads notes the day before sugery & made the descion that night & felt it best to speak to us in person.

Iam still at a loss to the logic behind this descion & truly feel that nothing has been gained by doing this bi-op, he has found more tumor in the bladder & up into the urita which has re-grown since last bi-op about 6 weeks ago, path was better than expected at that time as from the look of it they thought it had gone into the muscle. They still couldnt rule out muscle involvement in the urita, this is way we thought we had no option other than r/c if we wanted the best outcome for a longer life. The risks were discussed but as Dad is only 64, he is fit, no other health issues other than High blood pressure & athritis, they said he should have a good outcome.
I am so sorry to go on & on about it but we were so stressed coming into the op as most of you would know or imagine & now back to square 1 with the waiting game.
sorry sorry sorry.
Cathy


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