Hi Everyone
Hoping some of you lovley people can give some advice or share your experience like you have helped me so much previously.
I have used the group prior but just to give an update for my Dad so far! My dad is 73
So he was first diagnosed Sep 19 with low grade non invaisive bladder camcer. He went on to have regular cystoscopy every 3 months and chemo by bladder wash until he finally got a clear result in June of this year.
So the dreaded 3 month check came around in September where they suspected a recurrance as red patches could be seen. This was followed up with rigid cystoscopy with biopsy in October and the results appt was to be given by telephone on 20/11 due to covid! I knew something must not be good when they called 3 days before on 17th and said they were changing the appt to a face to face. So feeling very nervous me and my mam took my dad to his appt to see the specialist nurse. We waited outside of the hospital as at this point we werent told we could have went in with him! So my poor dad faced this alone where they told him his cancer was high grade and the options were 3 years of chemo or complete bladder removal.
So this hit me like i dont know what when my dad told me that in his appt he said he would like to try the chemo 1st, this would be bcg.
I dont want my dad to have anything at all done but in this situation i just want him to be rid of it once and for all.
So the SCN called me and at this point she said i could have been in for his appt after all, this wasnt helpful knowing this afterwards! So after further discussion with my dad he agreed to meet with the surgeon to discuss surgery in more detail. This appt i was told i could attend.
So last Friday we met with the surgeon. He was very approachable and also very direct that the cancer was now very aggressive and that we had to decide between the 2 options. He assured us that the last biopsy showed it has noy yet gone into the muscle. Again my dad said he would like to try the chemo 1st but after asking questions about how this would be monitored he advised he would be scanned every 3 months, however he couldnt guarentee nothing nasty would go on in that time. What he did say was that he didnt want us to be in a situation in a few months time whete he was having to say "sorry there is nothing more we can do for you". This totally devastated me once again and when you here a doctor saying "very aggressive", high risk its terrifying.
So we were not pressured to make any decision at this appt but the surgeon advised that no matter what he decided he needs to have more biopsies taken so they can see any changes since october. So this is booked in for tues 15th under anesthetic. I wouldnt want it any other way but this seems very quick! He said once we have results from this (2 weeks) we can decide from there.
He has also referred him for an urgent ct scan as the last one my dad had was sep 19. Again we didnt know this was supposed to be done every year.
So we are now at this situation and i really need some help on the best way to approach this with my dad. I know it must be his decision and I dont want him to feel pressured but at the same time i dont want the risk of this being undertreated just by chemo without the surgery.
Just to add to this my dad has had a dull ache in his tummy area for a few months now, hes been putting it down to scar tissue from previous procedures and so has his gp. Finally he went back to gp again as this just isnt getting any better so he was referred for an ultra sound which he had today/results on Monday.
I didnt realise the bladder removal was such a big op with a posdible 2 week stay in hospital and 3 months recovery 
let alone the life changing effects afterwards. They advised they would remove bladder, prostrate, part of the bowel (to make the stoma) and lymph nodes
I know this is a really long post and im very grateful if you have read this to the end!
Im really struggling!
Chemo/bladder removal?
Chance of having bladder removed if chemo doesnt work and my dad being 3 years older for a major op?
Chemo not working?
My dad having to live with a bag but being cancer free?
What is the dull ache?
Has the cancer spread between Oct to now?
Dreading the ct scan?
Is this a lot worse than we think and this is why they are moving on it so quickly?
I have asked him if he would like some support from someone who has already been through this. He is open to it but ideally not online.
Thank you so much for your time! Any replies much appreciated xx
Hi . Sorry to hear your Dad has had a recurrence. I had a different treatment so not in a position to help, but we do have members who have gone either with BCG or RC and I am sure will be along to share experiences. As regards the CT scan. This is normal and as well as giving them a bigger picture, it is also precautionary to rule out anything else going on. Best wishes.
