Bladder Cancer Possibly.

Hi Retrovanian, you're in the right place. We all know how you feel and we have all survived to tell the tale.

First of all, if it is cancer they'll treat it. These days it is very treatable - it isn't at all like the bad old days when people didn't go and see the doctor in time. You have done the right thing and now they'll take care of you.

Until you know what they have found though, please do try not to rush ahead. We all deal with worries differently. I like to know about everything up front. If you do too, Macmillan has a very good booklet on Bladder cancer on this website somewhere. I downloaded it to my tablet and still look at it from time to time. 

If you don't want to know, that's fine too but maybe you have to find something to keep you busy until they can explain things more in person. I hope you can use your usual coping mechanisms for anxiety and depression to help with this. 

You can ask the forum anything and someone will have an answer. It is no bother at all, we were asking when we were in your place, and we're still asking.

I'll share a little of my journey:

They found something in my bladder in August 2022. I don't know how old you are (I was 69 and very fit) but there are people of all ages on here. It was cancer, I had to have my bladder removed and now I'm under review and still clear nearly 2 years later. I and my small family pulled together and coped and I hope you and your people will do the same whatever happens. Our quality of life is excellent and I have never looked back. And that's very usual amongst bladder patients

Good luck

Hello James. Well done finding this friendly forum. I was in a similar position in mid 2017 except instead of anxiety or depression I had an extreme medical phobia. I was exceptionally good at fainting! I sought help with the phobia (cognitive behavioural therapy = a posh form of counselling) and then was gradually able to stand the music rather than keep falling over. Bladder cancer is one of the more treatable varieties so try to resist the understandable shock if it turns out to be that. Once you have a clearer idea of the diagnosis and the proposed treatment you may find the fear will reduce. We will help you with our combined experiences which can often soften the natural concerns arising from the 'what ifs.' You may also notice that each patient does not necessarily react in the same way despite having similar symptoms i.e. treatments vary and there are options. Best wishes.

Hi James, welcome to this friendly forum. I hope we are able to help . It is absolutely normal to feel worried and anxious when you have been told something was discovered in your bladder. I am wondering did the doctor give you any further information regarding what they would do next , whether you will be having further investigations or a biopsy .

I would advise you to stay away from dr google as alot of the information is out of date and will cause you further anxiety. There are many of us on here that have been through this, and the waiting for answers and a plan are the hardest to cope with. The ‘what ifs ‘ can take hold easily until you have a diagnosis. Have you been allocated a nurse specialist ? please feel you can ask anything on here , its a good/safe space to express yourself and get some support. Try not to worry, stay with the forum , you are among friends

Hi James,Welcome to our friendly group.We are all here to help and support you so keep posting.We will try to calm your fears and anxiety.Love Jane xx

Hi James, welcome to our friendly group. We all understand your anxiety. Once you have had your biopsies taken by a procedure called a TURBT the medics will be able to give you a diagnosis and a treatment plan. There are lots of us on here having all different forms of treatment so feel free to ask as many questions you like, or just to voice your worries or just for an everyday chat.

You are not alone, keep posting.

Love Ade xx

Thank you so much for all your responses. They are much appreciated. The worst thing at the moment is the blood and pain after the Cystoscopy. Blood frightens me because it naturally is not normal. I had two episodes of blood before I was sent for the Cytoscopy and I am waiting for the CT Scan results. Do these findings always mean Cancer.

Kind regards James.

Hi James,

I don't know and wasn't going to reply but didn't want you automatically to think the answer is yes. I can tell you that to get a definitive report  of a CT scan can take time even if doctors may be able to see the scan before it is reviewed by a radiologist who will write a report on it.

Did you meet a specialist nurse when you had the cystoscopy? You may have a name on any papers they gave you. These nurses are your best friends from now on. They are hugely experienced and will be more available than doctors. 

Each hospital's processes are different. I had the CT and cystoscopy on the same day after a long interview with the nurse. But they only told me what it was after the TURBT some weeks later. If you can find a number for your nurse they will tell you how they handle things at their hospital. I have heard of a diagnosis being given just after/during the Cystoscopy, so you can see it depends.

Good luck

i have now got a Macmillan nurse. From what I have found out there is only a slim chance of it not being cancer and it spreads fast through the rest of the body. The only good thing about this is my funeral is organised and paid for. I am 70 and I did not expect to get this far.

I am due a TURBT soon but it will come to late and I have no intention of going through this because it will be at a hospital miles away and is very unpleasant and very painful and difficult to do.

Kind regards James.

Hello James. As others have said, bladder cancer can be treated successfully and especially if confined to the bladder. A TURBT is a fairly straightforward procedure and in most cases done in day surgery. If you have difficulty getting to the  hospital, you may be able to get hospital transport. You need to find out what you are dealing with before making any decisions. Best wishes.

James, I had medium dose radiotherapy in late 2017 two TURBTs in 2018. These procedures are not too bad and gave me an unexpected extension to my life. The cancer is slowly growing back and despite being on palliative care since 2019 I'm still here, living independently. Palliative care does not always mean 'end of life' care in a hospice. I still have some treatment options e.g. another TURBT. The future may seem bleak at the moment because you do not know whether your diagnosis is cancer, and if it is, how it may be treated or indeed whether it is very slow to spread (like mine).  Stick with us so that we can perhaps make this experience less daunting. I have not organised my funeral and won't bother until Tesco has new stock of cardboard blue and white value boxes. I am tempted to choose the music though . I'm 75.