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Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Advanced Bladder Cancer

Willow 67
Posted by

Hello Everyone,

I’ve just joined the group, my sister has been diagnosed with stage 4 advanced bladder cancer, she is 62. We are scared of the prognosis and have been told it’s treatable but not curable, can anyone give any words of encouragement as we are feeling devastated at this moment in time.

Willow 67

rily
Posted by

Hello and welcome to the group, although sorry to hear the reason you join us. This must be a very difficult time for your sister and your family. As you probably know, stage 4 bladder cancer usually means it has progressed beyond the bladder.  Although classed as incurable, treatment is designed to control any further spread and keep things under control. We have a group here for people with all different types of incurable cancer and many of them have been here for years. We know how hard it is to express your emotions and thoughts to close family and friends, but this is a great supportive group where people will understand if you want to talk. If you know what treatment your sister will be having, there will usually be someone here with experience of it. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Crustybladder
Posted by

Hello Willow 67

Welcome to our illustrious group. I'm sorry to hear about your sister, it's a hammer blow of a diagnosis, whatever grade you get (G3 in my case). I've no wish to offer false hope but know that a friend of mine was diagnosed with stage 4 terminal bladder cancer four years ago and her treatment has stemmed the cancer, she is still here being a lovely nuisance.

There is a chance that one of the newer immunotherapy drugs may have some positive impact on your sister's disease but it doesn't suit all patients - do ask the medics about that and remember, they will never use the 'cure' word, even for those of us who have been free of the beast for years.

Keep us posted of developments and we will be able to advise you further. Meanwhile, stay well away from Dr Google and get busy doing the things you all enjoy the most.

CB

I may appear to be listening but in my head I'm all at sea. 

winkers60
Posted by

Hi Willow67,I am so sorry that your sister has received this diagnosis.We are all here to offer support and friendship to you and your sister.It is a lovely group and I hope you find it helpful.Love and best wishes.Jane xx

Herothedog
Posted by

Hi Willow 67, sorry to hear of your sister's illness. As we on this site all know a cancer diagnosis is terrifying news but there are a variety of treatments available to delay the disease. My tumours have been lower grade and non-invasive so they can be removed but unfortunately they do keep coming back. I'm almost resigned to it being a chronic condition.  I find it easiest to take one day at a time and focus on the pleasures of my life. I've stopped worrying about dying now, I try to hold on to living as well as I can. Small things that make my heart sing like working in my garden or eating cake. I hope this can help for your family too. x

Puglover
Posted by

Hi Willow

I'm so sorry your sister and you have had this horrendous news. 

I hope I can encourage you a little bit - my mum was diagnosed in September last year with stage 4 inoperable aggressive bladder cancer (sarcomatoid, the worst kind apparently) that had spread to the lung. She was told she had 12 months (she did ask, in fairness!) which was just awful. She's 68. 

So we were floored basically. That first month of getting the final diagnosis was a real roller coaster of ups and downs, but what I found was, once she finally started treatment ,things started to feel a bit more in control, you know what's going on, you feel looked after by the team and the treatment helps get rid of symptoms, so although she would go through fatigue with the chemo, she had been feeling better too. 

Both scans she had during her first 6 cycles of chemo have shown shrinkage. She's just had an 8 week treatment holiday and had her first scan after this treatment break last week - she will get the results this Tuesday (which I will be anxious about then, definitely) She's been told that if there's been any growth, she'll start immunotherapy. But she's doing really well, has been enjoying living in the moment - we all have learnt to do that really, and the doom and gloom of that appointment seems so long ago now. 

Like others have said, although it's stage 4, they can do so much these days - even if you get given an actual prognosis, that's a ballpark average before you've started your own individual treatment. 

Best wishes to you and your sister x