Bladder cancer newly diagnosed

Blackcat, I well remember my consultation when the consultant said we might need to remove your bladder - I felt sick & shocked. The idea that you have something so serious yet nothing to show outwardly for it. I do hope you may have a friend to confide in, or perhaps a local cancer support service. It is important not to feel you are struggling alone.

Your consultant should give you time to talk through treatment options, it may be that chemo plus radiation isn't an appropriate option for you, but is often an alternative to surgery.

For me, mine turned out not to be muscle invasive so i had a different choice. But in the end I opted for bladder removal, among other reasons, for best chance of cure & peace of mind, no stress of repeated cystoscopies. It wasn't easy, but that was 8 years ago & I have no regrets. Living without a bladder is not nearly as bad as most people fear, I've adapted to my new plumbing & probably more fit than beforehand.

We're very open here, feel free to ask any questions but bear in mind we are only fellow patients & carers drawing on our own experience.

I found your post very interesting Teasswill.My bladder problems started in my early twenties and I had my first cystoscopy back in 1985.That showed a bladder full of ulcers but I wasn't given any treatment.Things got worse over the years and eventually in 1997 I was diagnosed with Interstitial Cystitis.I was told then that there was a strong chance that my bladder would have to be removed in the future.I had regular cystoscopies and diathermy to remove ulcers and lesions.In 2005 cell changes were found and these turned out to be Keratinising Squamous Metaplasia.I was told that these changes could cause a rarer type of more aggressive bladder cancer.Earlier this year I started to feel unwell and was having great difficulty passing urine.I had an obstruction removed in June and this turned out to be a squamous cell cancer.On diagnosis just over 3 weeks ago I was told that bladder removal was the only treatment but I have yet to see the specialist to discuss things.I feel extremely apprehensive about such major surgery but I am always in pain and am hopeful that cystectomy will help with this.I feel for Blackcat,it's such a daunting prospect and I hope that she will find some support and advice here as I have done.Love & best wishes Jane 

Hi Sue,I'm glad that you have your son to support you,it must be a worrying time for him.I have a very supportive partner and younger sister.They have both been brilliant,they are finding it hard but supporting each other.I'll be relying on them when I go into hospital as I'll be over 40 miles from home.I think the reality of it all will sink in then.It must be even more of a shock for you if you have been feeling and looking well.Do you have a cancer support worker ? I had a call from mine on Thursday and am feeling more positive.It does make a huge difference to know that there is help and support out there.Take care Love Jane X

Teasswill. I too found your post to be most helpful. I contacted this site to find people in a similar situation and how they have coped and dealt with it.  

I'm sorry but I don't want to start an awareness campaign on my own - that might seem selfish but I'm trying to come to terms with how I will cope and survive this. 

The thought of having to keep going back to the hospital time after time even if it is only 4 times a year and going through the stress and worry of what they might find each time would I believe be too much for me.  

So your positivity is really helpful.  Sue

Jane I'm so glad you have support. Fortunately my son lives close and the hospital is 10 minutes away.  However other family members (my son and neice) live 4 - 5 hours away. But with the power of internet etc. I can speak to them every day.  

Do you know when you are going in for your operation.  I've been told it will be soon but no idea when yet.  Until they have discussed the CT scan to ensure it's nowhere else they cant do anything.  

I do have someone I can phone but we've not been in touch yet.  I haven't really thought of phoning him yet. 

It is the waiting and the fear of the unknown which is hard to cope with.

Hi Sue,I think we are the same sort of stage in regards to waiting.I had a ct scan last Sunday and see the specialist in Bristol on the 27th August which seems so long away.I have to fill out a pre-op assessment form on that day so I'm hoping that I can get the assessment done the same day.I would imagine the operation will be in September /October but that's only a guess.The urology nurse arranged for the cancer support worker to phone me.I hate phoning people so I was grateful he rang me.There is a lot to think about and do before the operation.I have to sort out a few issues regarding my elderly disabled mother and that's adding to the stress.I don't like the fact that the cancer affects my family and friends.So far I have managed to stay relatively calm,but I suspect I will be an emotional wreck by the time I get into hospital.The waiting is awful.Love Jane

Yes it does sound as if we are at similar stage. the only thing is I had the op to remove the tumour last Monday 15 Aug.  I have now had the appointment with the specialist to say this is the way forward.  Now I'm having the CT scan this Monday.  The Dr implied that once I have the scan we could be moving quickly so almost expect to be done by end of Aug / beginning of September. 

Must admit the sooner done the better while I am still feeling so well in myself.  I'd also like it done during the school holidays as I have my 9 year old grandson to organise which is easier in holiday time than when he is at school.  

I also agree I'm not good at phoning unknown people so it would be nice if he phones me.  Sue 

I'm glad that you are feeling well in yourself.It will help you with regards to the operation and recovery.I'm worried that I'm not really that fit at the moment.Usually I would be running up and down stairs (house on 4 floors) looking after mum or busy in the garden but I lack energy lately.It sounds selfish but I am actually quite relieved that mum is in the care home.Hoping that we can both get our operations done quickly.Jane 

Blackcat800 could i ask what stage and grade you are please. xx

Actually I don't know.  All I know is it was a 3mm lesion which invaded the muscle.  I also know that I've only had symptoms since mid June when I first found blood in wee.  All i know is it's better out than in!! Sue