Hello fellow forum members from a male with a new diagnosis

True, just that one poster thought I may not due to age.

Hi, I was 66 when I had my RC. I read several studies on suitability for RC and the general rule is that it is not so much the age of the patient as much as it is the general fitness. Certain comorbidities make the surgery more dangerous. They would do a complete work up on you to see if it’s suitable.

I hope I did not give the wrong impression when I mentioned age. Just my thoughts about what I might choose if older. Orillia did make an exceptional recovery with neo - you just have to be aware that it is not guaranteed. The surgeon will only offer neo if they think it feasible. Worth making sure your surgeon has plenty of expertise, too. 

Re upstaging - a biopsy of tissue removed will be done, as well as visual check during surgery. Some patients find their stage is increased as a result. That means that if they didn't need/have chemo before surgery, they would be offered/advised chemo after surgery, or more tests might be necessary to determine the extent of any spread. Follow up checks might be different too. 

Sounds like a while before you need to decide on neo or stoma, or even radiotherapy instead (if an option), if you are having chemo first. Plenty of time to be getting your bungalow into shape!

Thanks Teasswill

Mine was upstaged.Initially told it was T2 but after cystectomy it was T3b.You should find out whether neo bladder is an option when you meet the surgeon.I’m quite glad I didn’t have choice as it’s so much harder having to decide.Best wishes Jane 

Hi all,

Well I finally found some contact numbers as a result of which a Urology Clinical Nurse Specialist phoned me to say: Your MDT meeting was supposed top be last Tuesday but because of the Bank Holiday, it will be this Tuesday. I said that the Doctor who released me said it was muscle invasive. She said, the Doctor would not know if it was or wasn't at that stage. Said continued to say that I would be invited to a meeting where my case would be discussed with me. The meeting would be with the Urology CNS nurses and when I asked about the Consultant she said there were not enough available to be present at that time. However, depending on my results I may get to see a Consultant after the CNS meeting.

I appears on the face of it that my future is discussed and decided without me being present. Maybe the CNS nurses are weeding out those who agree for the 'Standard' treatment in respect of their diagnosis. That is fine if those who prefer to choose an alternative are permitted to seek Consultant advice, no matter how well the CNS are trained.

All will be revealed next week. However, if the MDT could have been last week, I may be able to get my diagnosis now, giving me time to cogitate. I hope so.

Hi makem 

MDT meetings are made up of medical professionals only and do not include the patient. It is usual for the mdt to discuss each case and then for the patient to meet with the relevant consultant to discuss the proposed individual treatment plan. It’s honestly not about weeding out patients.

You have every right to question any decision made about proposed treatment and voice your opinion, just as you have the right to refuse treatment if you’re not happy with what is proposed. 

Sarah xx

Hi SarahH21,

I never did expect to be present at the MDT, however I did expect the Consultant to be present when I was given an appointment following the MDT to discuss the outcome of the MDT.

Hi makem 

My apologies-I must have misunderstood when you said your future was being decided without you being present. I thought you were referring to the mdt meeting where treatment decisions are discussed. Yes, I would expect a consultant to be presen5 at a future appointment too. 

Sarah xx

I would expect you to see a consultant too.That doesn’t sound satisfactory to be leaving it all to the nurses to discuss with you.I hope you can get to see a specialist.