Hi my first post

Hi Fab7 and welcome. Having bladder cancer the way your consultant spoke of it, yes that does appear to be what you've got, is not at all a death sentence. My husband had a similar experience to you when no one said cancer some years back. Having moved house so a different hospital they are much more truthful and honest here. He has had two more of the removal ops, they are usually called TURBT which stand for trans urethral resection of bladder tumour, which just means going in through what one doctor described as your 'water pipe' to cut out the growth in your bladder. He's also had some follow up chemo into the bladder and has been clear since but will go on having checkups as just as you were told, it's like a weed that keeps coming back.

There are other causes besides smoking and drinking, my husband never smoked and doesn't drink much, not everyone's cause can be identified.

I do hope this is some reassurance. others will be along as they happen to log in to answer you too, they are a super helpful and supportive bunch on here.

Best wishes, Denby

Thankyou  x

Hi Fab7, sorry you find yourself dealing with this problem. Everyone in this group will sympathise with how you are feeling, as we've all a bladder cancer diagnosis. It's really confusing at the beginning and staff are not always very clear. The nurse you mention is probably your CNS (Clinical Nurse Specialist) and in my experience these nurses are the best contact if you have questions. There are different kinds and grades of bladder cancer. Some of them are very superficial and low risk, but in all cases it's important to remove them quickly which is why we get a flexi cystoscopy (camera in the bladder) screening every 3 months. If a reoccurrence shows up we have the same operation you just had (TURBT) to clear the tumours out. Obviously no cancer diagnosis is good news but the fortunate thing about bladder cancer is there are so many successful treatment options. Sending you love x

Hi . your post will be familiar to many of us here and we certainly understand your emotions. A shame your doctors have not given you much information. Some doctors are better than others with this. The op you had will have been called a TURBT (trans urethral resection of bladder tumour) and you will see this term often on here. They would have taken a biopsy and this determines if cancer or not. It takes a few weeks for results, hence the wait. There is a positive in your post. If you have not been offered any further treatment it sounds as though it was caught early. As these things are known to recur, you will have regular flexible cystoscopies to keep an eye on things. Were you given a stage and grade  (T + G) ? You are young for this, but we are seeing more younger people getting it these days. Although there are things like smoking which contribute, in many cases there are no obvious reasons. As mentioned above, take reassurance that this thing can be treated successfully. Best wishes.

Thankyou x

I understand the emotions and how it's hit you. I was similar, mine was found on a routine scan of my liver when the radiologist had a look around the rest of my stomach. Nobody explained anything to me. 

You just feel lost because its all outside anything that you can relate too. 

I had a TURBT back last April with 6 weeks of chemo but now I'm waiting to start BCG treatment because it never went away/came back.

I'm also new to this. I've only had 4 flexis and 2 rigids so a long way to go to catch up with some of the veterans on here.

All I can say is to take each day it as it comes and don't let it get you down. Listen to what the doctors say and don't be afraid to question anything you don't understand. In this case knowledge IS power and helps take the fear out of things. 

Yes, it's a nightmare to start with. Mine started with a trip to A&E and in four days, I had a diagnosis. Life turned upside down. I found out lots from the Macmillan booklet and from this BC Community.

I don't aIways take in what is said to me at the time at appointments; and I often think of things to ask when I get home. I write down all my questions in a book and take it with me whenever I go to hospital - and write down the answers. I make notes of all they tell me in hospital. They are used to me now! I find that staff especially the nurses, are very patient. It's ok to make sure you ask what you want, no matter how long it takes.

I decided to tell everyone about my cancer - and found people were very supportive. But that's an individual decision. 

I am coming to the end of my first lot of BCG, after my TURBT op. so I am still new to this. Others are able to give you good advice. There is a life to be lived with BC; we learn to enjoy it.

Do keep posting.

All the best to you and yours,

Peter.

Hi Fab7, I thought I’d add my 2 penny worth. First Bladder Cancer isn’t a death sentence, when I was first diagnosed a nurse said to me if you have to have cancer bladder cancer is the better one to have, a lot of people won’t agree but I’ve been fine. I’ve had it nearly 8 years, no recurrence, 15 BCGs and grade 3. You need to find your grade and stage when you go for your results, in the meantime talk to your CNS any problems they should be your first port of call and usually very helpful, if your worried give them a call. All the other posts are spot on. Try not to worry it’s the waiting for results that’s the worst I think, once you get onto a treatment (if needed not everyone is) you’ll feel a lot better. Take care xx

Hi Fab7,

We’ve all been through your experience and know how you feel, it’s just unfortunate that Covid happened and you had to get your results by telephone. It’s possible that you may have non invasive cancer which does have a high recurrence rate. That’s what I have and I’ve had three reoccurrences in last 3 years. The good thing is you will now be checked regularly and any problems spotted and dealt with.

Your GP will get a copy of your results and diagnosis so perhaps an appointment will help clarify things. You might also ask the hospital to send you copies of any letters that are issued to your GP so you know exactly what’s happening. Alternatively if you are registered with Patient Access you can see the correspondence yourself.

There is also a really good Macmillan booklet on bladder cancer that you can download/ send for which might explain things more.

Best wishes Luce x

Hi thankyou all fir your kind words 

I had one letter from my consultant  saying ( G2 Ta TCC SMALL solitary 

Follow up flexible cystoscopy  

The other letter came 3 weeks later after a phone call with my assigned  nurse  this latter sai ( proven bladder cancer GRADE 3 STAGE PTA 

I WROTE to my consultant  asking which is the right diagnosis  but that was 6 weeks ago and I still haven't had a reply so will ask  on the 21 sep at my cystoscopy 

Thankyou  again x