Bladder cancer at 27

Hello Yellow07, bladder cancer was once considered to be an old mans disease, but people are getting younger with it, & women are getting it too.  It's a massive shock to the system, maybe that's just your partners way of dealing with things.  At least now he's being looked after, & if anything crops up they'll be on to it right away.  Some people get looked at every 3 months, then it can be 6, 9, or 12 months. I've had recurrent bladder cancer (as many people on here have) since 2012, it's a part of my life now & there's nothing that I can do about it other than keep having the TURBT.  Although it's taken me a long time to feel this way, I've been beside myself before now.  Sorry I'm not young, but you'll get lots of support & info on here.  Take care. 

Hello Blanket, thank you for your reply. Yes it certainly seems that way and it has been an absolute shock to say the least. I feel overwhelmed with so many emotions and want to try as best to continue to carry on with our lives as we had planned before this but I am questioning everything and overwhelmed with worry for him. The regular check ups have provided some reassurance but feel I am just counting down the time until the next cystoscopy. I have found it helpful to hear about your experiences and I thank you for taking the time to share this with me. Take care. 

Hello Yellow07

Sorry to hear about your partner and the worry this is causing you.   I am much older than your partner (at 54) but do identify with what you are saying.  I am in a similar situation to your partner tho’ having had the TURBT surgery and one dose of Mitomycin and then scheduled for a check on 3 mths.  Like you, I did my research and have been similarly concerned that things were being played down. I want to be positive but I also want to be realistic.  While bladder cancer is rightly known for it’s unfortunate relatively high risk of reoccurrence, everyone is individual and we are told (!) that risk of reoccurrence is to  determined by many factors.   There is the EORTC calculator which can be used to get some idea of this although it uses meta data so can’t predict an individual’s outcome. It calculates % reoccurrence risk at 1 year and 5 years based on several factors although these do not include age or gender.  You can Google it.  

Obviously not everyone wants to know this sort of information and your partner may not. It is difficult sometimes to deal with your own worry and also how your loved one/s choose to deal with theirs,  especially when those approaches are different.  I have had to try hard not to impose my ‘worse case scenario’ approach to coping on my poor husband as that isn’t how he wants to manage his own worry.

I do know what you mean about life changing and never being the same again.  I think everyone here can understand  that.  I have days when I feel pretty fine and optimistic (my results from my TURBT were fairly encouraging with a single, small, low grade tumour being removed) but I also have  days when I believe it is just a matter of time before I get a reoccurrence/progression and that everyone is fobbing me off.  

I hope this is some help and I am sure you will find much support on this forum.

Blue

Hi Blue, thank you for your reply. 

My partner is definitely at a more positive place than me, I feel overwhelmed with many emotions and I am trying hard to not let them overcome me, especially as he is the one going through it. Like you, i want to be positive but also realistic. I will have a look at the EORTC calculator, thank you for sharing. 

I am trying my best to suppress the extent of my worry from him as I do not want to make things overly sad (if that makes sense). I feel like my partner and your husband have a similar way of thinking. 

Thank you for sharing your experience. I can definitely identify with feeling fobbed off. Especially as my partner was not told about grading or the size of the tumour, which again makes me think it’s because of his age. This is all information we have had to find out after his consultation. 

I feel I am counting down the days until his next cystoscopy and maybe after that I might feel less worry. I hope all goes well for you, take care. 

Hi was diagnosed with superficial bladder cancer 7 weeks ago at the age of 65 this was removed 3 weeks after diagnosis I had my  wife in on the appointment and treatment discussion it was picked up on a CT scan for something unrelated and I was asymptotic I'm trying to get my head round this I am having immunotherapy every week for 6 weeks then check ups every 4 months they will remove any growth if its returned the prognosis is I should live out the rest of my life according to the consultant 

Hi and welcome to this very helpful friendly group Crixus. If it is any help my husband [who is now 76]  was up in the night increasingly a few years ago. The hospital did what I now realise was a TURBT and sent him home with a catheter and no more info than "seaweed like growths" had been removed. In our innocence with busy lives we just thought this would be like harmless skin tags and forgot about it for years. By the time the getting up at night became a nuisance again we had moved to be nearer new grandson and family, so a different GP and hospital. Thank goodness as by the time he got the cystoscopy, his bladder 'looked like inside out cauliflower all over' as he described it having seen the screen. That was about 3 years ago. Despite all this, after treatment he is now clear, just on 6-monthly checks in case of  recurrences. If any crop up it should just be a repeat cycle of remove and Mitomycin into bladder.

So hopefully you can let it fade into the background between whiles.

Denby

Thanks you for sharing your experience it's been a shock I am trying to find all the positive parts in this like its regular checks and it isn't a terminal prognosis has with some cancers.. it is a fear of uncertainty its still early days yet I have decided not to tell anyone only my wife and brother in law know don't want my immediate family to worry ..my mother is in her late 80s. The very best of luck Crixus

Thanks Crixus. This is the beauty of this forum, if you don't want to worry eg your mother, you can bring all and any worries here. Someone else posted that their doctor said if he had to get cancer but could choose [the least worst] it would be bladder cancer he would pick! Hope that encourages you too, 

Denby

I was diagnosed at 47, 15 years later I'm just progressing  to bcg treatment, I was initially checked every 3 months which progressed to annually, personally I preferred more frequent checks so any problems are found early, it is highly treatable if caught early, it becomes part of your life, we all have different ways of coping, I manage to block it out of my head until my checkups come round, life goes on, enjoy it best you can

Thanks its good to hear from people who have been treated for this hopefully I will be able to deal with it better