Struggling tonight. Anxiety overtaking.

Dear Jessie15, I am so sorry you are feeling sad tonight. Cancer is such a frightening thing that it isn't surprising that sometimes it feels overwhelming.

And, as I have learnt from this forum, each doctor/ department has their  own way of doing things. And that means that one will do things that the other won't do. But I am sure they are working for their patients' benefits.

I have no idea whether your treatment plan is better or worse for you than the one followed by the other patient you read about. So all I can do is apply some non-medical logic

This illness operates differently in each of us so maybe we shouldn't expect a one size fits all approach to treatment, however much we might wish it was different. But that means that it is hard to predict how each patient will react to the same treatment. I'm sure age and health status before cancer have an effect on it too.

My oncologist told me at the start that cancer can recur or spread (even after the bladder is out) which is why they keep checking how the treatment is working. They have us under surveillance at every stage and can change things up as needed.

But nobody can guarantee the outcome. As a patient I think I have to trust and do my best to help the treatment to work well in my body. But I have also had a second opinion when I and my family thought it was needed. And I have pressed the medics to explain their thinking at various points.

Perhaps you need to reassure yourself by asking your doctor/nurse to say why they prefer their plan to the bladder removal, given the similar diagnosis, just to set your mind at rest. 

I have no idea if this has helped you at all, because having cancer is an extremely emotional experience. But hang in there, you can do this. That's what I have learnt from my illness.

All the best

Latestart x

Hi Jessie, my heart goes out to you because you are feeling confusion and turmoil about your treatment. I was diagnosed T1G3 with CIS in April last year. I asked if my bladder would be removed to which i was told it would be overkill. I have had 13 BCG and so far clear of recurrence. I feel lucky and anxious at the same time. I don't read google at all, i find it distressing and the information is often wrong. I feel that you are saying your concerns have not really been heard and you haven't had a reassuring explanation. Do you feel able to ask the nurse for a better explanation ( sometimes when we are vulnerable its difficult to speak up and we end up feeling fobbed off ) , or can you take someone with you to speak up for you ? You can even request an appt with the consultant or ask the nurse if she can arrange it for you.

I know that my situation is unique to me and my urology team, my tumour size , condition, grade and position would have informed the mdt in chosing my treatment. You need the explanation as to what informed your treatment plan, in order for you to feel some level of reassurance and calm.

I am doing well on BCG and i now have another 3 months before my next cystoscopy ( just had a clear one ) . Some of us are doing well and some havent tolerated it well. Its a really tough time for you, you are welcome to bring your sadness and fear to the forum and we can try and help. Dont keep your fears to yourself, talk to us and your Urology team. They are there to help you. sending you a big hug . 

Thank you very much for taking the time to reply. I did ask the specialist nurse and she said at this stage it would be overkill. But then when I read elsewhere, this does not appear to be the case. When I was given the diagnosis, I felt very little time was spent -  certainly bladder removal was not gone into in any detail, literally just mentioned and then I was told I’ll be doing BCG. The consultant spent more time asking me and my husband whether we smoke and neither of us do. He seemed surprised and said most cases were caused by smoking or working with chemicals, neither of which apply to me. 
I just don’t know how people managed to be happy with this hanging over them. I’m trying my best not to bring others down but feeling very bleak. 

Thank you so much for your reply. We have the same diagnosis. I did not know you could request another appointment with the consultant so I might try that to try and get some kind of calm. it is interesting that you were also told it was overkill. I’m careful not to read anything other than the sites recommended by the specialist nurse now having frightened myself initially with Google. I’m sorry to say my consultant was not helpful. When Ilook back, he rushed through things and perhaps that is why I feel that I have not been reassured in any way. Someone said I could get a second opinion. How life can just turn around so quickly. Wishing you all the very best x

Hi Jessie, yes I remember feeling quite rushed in the initial consultation. there was so much info to take in and my head felt mashed with the shock. I clearly remember feeling delighted when he said bladder removal wasn't needed right now. I think i felt aware that it could all change, but for now we were starting with BCG . I trusted him and felt happy when he said if i ever need to chat again his door is open.

Your world has turned upside down right now . Ask the questions to the team and get the reassurance you need. I wish you all the best and hope you can find some calm in this frightening time xx