Dad diagnosed with rare invasive bladder cancer

Hello everyone, I'm a wreck and gutted my dad had bladder scrape in Dec and diagnosed on Monday with serious invasive bladder cancer he has had Mri  scan today consultant was very matter of fact and mentioned it was a rare cancer. Did say about radiotherapy and chemotherapy but said his kidney Function was border line.  Any one had this experience? How do I stay strong for my mum and dad, my brother died in a car accident so I'm only child.  Please help

  • Welcome to Cancer Chat Worrallbn although I'm sorry to hear about your dad's diagnosis and for the reason it brings you here.

    I'm not sure how much you know about invasive bladder cancer but I have found some information on our website here and here that may be useful at this time. It can be very tough staying strong in difficult circumstances such as these but I'm glad you've joined the forum as many members here will really understand what you are going through having been in the same situation themselves and hopefully they will post soon to offer their support and advice. There is also a section about coping emotionally with cancer that may help you and your family as well.

    Keep us updated on your dad's situation Worrallbn, we'll be thinking of you.

    Kind Regards, 

    Steph, Cancer Chat Moderator

  • Hello, this is my first post.  I'm so sorry to hear about your Dad and feel exactly the same.  I am also an only child and would be lost without either of my parents.  My wonderful Dad also has a rare invasive bladder cancer, its called an adenocarcinoma.  He had his first biopsy in June of last year and has only had first dose of radiotherapy this week due to various delays. We saw the surgeon in November who was full of doom and gloom, and it hit us for six! Like you say, very clever in his field but slightly lacked a sympathetic manner and gave us the impression there was not much hope and we were looking at managing the quality of life he had left.  If "agressive" was mentioned once, it was mentioned five or more times, which is very frightening to hear, and we were so devastated, as my Dad has had no symptoms whatsoever.  Because the surgeon could do nothing for him, he then passed his care onto an Oncologist and wow, what a difference....he was so positive and so bubbly, he made us feel reassured and at ease straight away! Because he has a rare cancer, I feel he seems to have taken an extra interest in him, and I hope this goes for your Dad too. (I might be wrong as I am sure he takes interest in all his patients!) At the moment, he has suggested radiotherapy to his bladder and prostate and Dad seems to be coping ok physically but I can tell mentally he is suffering due to worry.  He seems tired and he had a bit of blood in his urine but all clear now, so we can just keep our fingers crossed.  I'm not sure if any of this is any help but I remember how I felt at first (like you) and now two months on, I feel a lot different.  My Dad also has kidney problems and has been in hospital twice in the last six months with these problems, they haven't mentioned it might be a problem with his treatment.  He isn't having chemotherapy as it has not spread.  I hope I have been of some help in some way.  Please keep positive and I wish you and your family all the very best of luck! :)

  • Hi so hard I know. My Dad diagnosed in April 16 with bowel cancer, but already spread to liver and lungs.  He still here !  On a trial drug again, but not working, do alternatives being looked at.  My Dad is only 72, never smoked, doesn't drink. I can only be there to drive him for treatment and hold his hand.  Cancer is so unfair.  Happy to talk and help you x

  • Hi thanks for the reply, sounds very similar to my dads situation, we had a phone can last night from the oncologist as do not think surgery an option. They did mention aggressive several times did not know it was such a scary word!  They want to do a procedure on his kidneys too improve function then plan to treat aggressively.  Feel better things happening now, just been to see him he is ordering new tv in preparation of  been laid up. Dreading next few weeks but going to stay positive for him and my mum.  Keep in touch please let me how your family is. 

  • Hello, yes it is a relief when things get moving!  When you say procedure for the kidneys, I wonder if its a kidney stent your Dad is having.....mine has had two and its nothing too worry about, its about half hour under a local.  I think its officially called something like unblocking the urether tubes but it just helps the flow in case the tumour gets in the way and causes a blockage of urine.  If this is what your Dad is having done, I think it was a one night stay in hospital to make sure its working ok. 

    It is all very difficult to deal with isn't it, as its never far from the back of your mind now.  I had a miserable tearful couple of days feeling sorry for him but then one morning I just woke up feeling, right lets keep strong, we've got fight this together! My Dad didn't really want to talk about it, I guess he wished it wasn't happening which is understandable, but now he is having treatment and he sees others in the same boat, I think he realises it is happening for real.  Like the comment above, my Dad has never smoked, rarely drinks and eats plenty of fruit and veg and takes plenty of exercise.  Sometimes life is so unfair. Thinking of you and your family x

  • Hi 

    thanks for the reply your right I do need to be more positive for my dads sake think it's shock still. cancer has no rules who it picks on my dad a non smoker too.  His kidney procedure does sound the same, nice to speak to someone in similar circumstances but wish it was different.  Has your dad started treatment yet?  My dad ordered 40" tv today to help in his recovery!!  Juexx

  • Good for him! He should have whatever he wants at the minute. I no, it is horrible, I cannot imagine life without my dad but remember there are lots of people out there who do survive or even live with cancer for years and years. It's still very very early days for you to be strong, don't expect too much of yourself. I found out nearly 3 months ago it was officially this type of cancer so I'm a bit more accepting to it now and I go to every dr appointment I can and have spent hours on Google (not recommended!) I went all Holland-and-Barrett for a bit...poor man was drinking green tea, wheatgrass, apple juice, anything that had a tiny percentage of helping but when I spoke to the lovely oncologist, he said nothing could replace a good old zapping from radiology so the health products have gone out the window a bit. He started his treatment on Wednesday for 4 weeks. He doesn't enjoy it obviously but everyone is kind. He doesn't feel pain, just a tingling down there afterwards. They knew it was cancer in June but were trying to find out which type which took months and months. Pleasure speaking to you too....trust our lovely dad's to have something unique! Xxx

  • Hi Jue, any more updates on your dad? Hope you are all doing ok Xxx