Recently diagnosed

Another CT Scan is quite normal, helps the consultant get a full picture. Size of tumour does not indicate stage or grade and many of us have had a long wait before diagnosis so time it's been there is also not an indication of severity. I'm afraid you will have to wait until it has been removed & biopsy report done before knowing the next steps. A multidisciplinary team will meet to discuss the case & treatment recommendations. The waiting is very frustrating, but at least the cancer is now being addressed. Hope all goes well.

Hi, 

thanks so much for your reply, we are all worried sick as we found out yesterday is still all new and basically don’t have a clue! 

Take care 

Hi . It is scary when a loved one is diagnosed with cancer. Early days yet for you and your family, but be aware that bladder cancer can be treated successfully and there are many of us here to tell the tale. Teasswill has given you an introduction on what to expect, so stay with us. The word urgent is often used and can be scary, but usually means weeks, rather than days. Ask any questions you like as we have a wide range of experience here and someone will, be able to help. Best wishes.

Hi Chelsea,

Sorry to hear about your dad, the surgery to remove the tumour is called a TURBT and after this is complete they will examine and then find out the grade and stage, this result will posted to your dad and it will usually take a couple of weeks, in my case about a week.

I was told the tumour I had was about 3cm although after the TURBT the surgeon told me it was bigger than first thought. The tumour was in my bladder neck.

Please look at the following link regarding TURBT, and good luck to your dad I know things are very scary at the moment but be positive and stay brave for your dad.

https://www.cancerresearchuk.org/about-cancer/bladder-cancer/treatment/early/trans-urethral-removal-tumour

Hi Dewy, 

thank you you for your reply any information I can get really helps me cope/stay strong I suppose so thank you, it is very scary but can’t imagine how he feels or you for that matter!

If you don’t mind me asking, how are you doing now ?

Chelsea

Hi Chelseaanne2. One positive thing to know is that whatever type of bladder cancer your Dad has, unless it has actually already spread beyond his bladder, which is what the CT scans are usually to check for, chemotherapy into the bladder does not have all the horrid effects of 'whole-body' chemo given orally [eg tablets] or intravenously [drip]. It often DOES make you super-tired, I don't know what the mechanism is that causes that, but it doesn't make your hair fall out or usually make you nauseous. Anyway your Dad is blessed to have you for a daughter and that you have found this group so early on. As Rily says, we are here to help, as we have been helped.

Also you can go on Macmillan website or call them 7 days a week and they will post out info booklets free and quickly, which may or may not be a preferable info source compared to online for him and or the rest of the family. Don't forget to register with your local county Carers' organisation as they will be a source of support for you, which will help you help him.

All the very best,

Denby

Hi Denby, 

thanks so much for your kind words they really do help it’s all new to our family so any information is appreciated! 

How long have you been dealing with this if you don’t mind me asking.

chelsea 

Not at all Chelsea, we take the view that bladder cancer is so common [10300 new cases a year in UK approx] but so little 'known' because it is 'down there' that the more open we are, the sooner we will get rid of the community ignorance and also help people get diagnosed sooner as they will know what to bother their Dr about. My husband had frequent peeing and poor flow prob10+ years ago. Our local hospital got him in and with no info at all did a procedure to remove 'growths' which we were not even told were any kind of cancer. He was then supposed to have the flow checked every 6 months but missed an appointment once and was never followed up. As symptoms worsened again maybe 3-5 year ago the GP assumed with no examination that he 'just' had an age-typical enlarged prostate and put him on Tamsulosin which is supposed to relax a relevant tension to improve flow. Maybe it did a little but looking back and recently having reread the pack leaflet I think it also caused sex to be more difficult. But the GP never mentioned that could happen and at the time we trusted him [not any more due to attitude to another relative]. And he should I definitely feel have considered other causes for the symptoms ie cancer.

Since then we moved areas and last spring new GPs referred him for cystoscopy to investigate worsening up-at-night and flow trouble. Still no mention of cancer nor need for haste. Choose-and-book offered a private hosp appt much sooner than NHS, in our case what a mistake. The date they then gave clashed with a single week's long-booked holiday involving friends' sick children. So I instantly called as per the letter, for a date change but the net result after phoning again and again [so frustrating] was a wait from last June so a year plus back from now, to September 2018. We knew instantly then there was trouble as he could see this forest of growths on the screen. Flip side to being on the autistic spectrum is taking this quite calmly. So we have been dealing with this for years without knowing it and a bit over one year say with some idea, nine months with definite 'cancer' word used.

It hasn't stopped us going to 2 weddings involving long trips, very unaccustomed dressing up and staying over, looking after our gorgeous little grandson [well they all are aren't they?] regularly, helping fight fracking, nearly completing our house move, etc etc.

I used to hate the term 'cancer journey', now I use it myself.....

Hope this essay answers your question OK, any more do ask,

Denby

Hi Denby . We call bladder cancer the Cinderella cancer. 7th most common out of over 200 known cancers, but nobody has heard of it. Over the years on here we have seen so many people diagnosed late because symptoms have not been recognised by GPs, even after the blood in urine campaign.

Congratulations on your grandson. Best wishes.

Hi Rily, I didn't even know the 7th most common stat but I sure as anything will be shouting even more about it now. Families are losing grandads because the NHS is effectively writing them off by not training GPs to suspect bladder cancer more readily. Even the prostate doesn't seem to permeate most of their consciousnesses as much as it should. Our grandson was lucky his other, quite young, grandad had a GP who did tick the PSA [prostate specific antigen] box when sending him for a blood test for something else. Result discovery of a minute tumour and successful not very harsh treatment. I dread to think what if...

Denby