Feeling scared...

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My beloved has just been diagnosed with aggressive bladder cancer.  He had surgery last Thursday and the doctor didn't even come check on him before discharging him home.  We have an appointment later today and don't know what questions we should be asking...we have NOTHING but what we've looked up on the internet to go on, as they never debriefed us as after procedure...just gave us paperwork.  Can anyone suggest useful-meaningful questions to ask when we see him today.  Please...someone who knows what we should be asking...I feel so scared.

  • Hi bobbysgirl

    What was the operation that was carried out.? 

    Best wishes

    Mark

  • Hi BobbysGirl41,Welcome to our friendly group.Have you got any information on the paperwork? There is plenty of support and advice here.Jane 

  • Hi Bobby's girl, as others say there may be clues to help you in the paperwork but just in case you are seeing the surgeon soon I'd say the basics are: (get them to repeat any jargon in plain english)

    What do you mean by aggressive cancer? Eg needs urgent treatment / strong meds / both

    Specify preferred options and what they mean for patient

    Which option gives best results in terms of cure/ life expectancy/ quality of life

    If it were your father facing this what would you do then? (Makes them see you as a person not just a patient)

    How long does the treatment take and what side effects are likely?

    Would other surgeons recommend anything different?

    Can we meet other patients who are going through/ have gone through this?

    That's mainly what I asked when in your situation plus what I've learnt after my treatment and hearing from others on here.

    As far as info is concerned they may give you some at the meeting however the Macmillan website has wonderful material on bladder cancer that you can download and trust. Ignore all info on Google unless from proper medical or bladder cancer sites.

    Good luck and all the best

    Latestart

    Ps some of my cancer cells were 'aggressive' and I'm living a good life after treatment so don't despair

  • And adding my welcome, BobbysGirl41 [is that after the old pop song by any chance?. Love it]

    Just to add briefly my husband had G3 ["aggressive" ] pTa cancer, a TURBT, BCG, a recurrence, another TURBT, Mitomycin and has been clear for around six/seven years. And that sounds like a hassle-some 'journey' but it never threw him out of kilter and we never missed a day of looking after our [then little, he's just turned 9!] grandson. 

    Keep us posted, there will be people on here who have already had pretty much anything your beloved might turn out to have. 

    Denby