Follow up after cystectomy

That doesn't sound at all right, you should have had routine follow up appointment(s) with the urology department, and probably the Oncologist. A basic CT scan should certainly have been done after say 6 months, or even sooner, if they were really on the ball.

In my case, the CT scan showed disease had spread to lymph nodes, so successive PET CT scans and Consultant appointments, have now established a baseline for the disease progression, to see if any apprecialble benefit, now I've started the immunotherapy course. (just yesterday in fact!).

I have an appointment already set up with the oncologist in early October to see how i'm getting on with the treatment. Then I expect a PET CT scan after the 3rd 3 weekly drug session, to see if any change in progression. 

So bearing in mind how asymptomatic I have been all the way through this process, I would urge you to contact your medical team on an urgent basis to say you haven't had the routine follow up that you expected. 

I think it does depend a bit on risk level as to what tests are done, but I would have thought the frequency of appt should be the same. I had loads of appt in the first year, for various reasons (partly monitoring neobladder). After that seen approx every 3 months the next year, then 6 monthly for 2 years & annual thereafter. I am on low risk follow up so just bloods & chest X=ray each visit, plus ultrasound on kidneys. 

Probably worth contacting the consultant via secretary to enquire. My hops has 'My Chart' which is good for seeing all the results of tests (which happen after routine clinic appt) - after last Sep, I never had a sign off letter saying all OK. I'm currently waiting for an appt, which will probably be short notice!

That seems far too long. I thought everyone had at least annual scans for a few years. Can you contact your Urologist's secretary? 

Thank you all.I shall chase this up.I have had regular scans the last being in April.I had no letter with the results though and no urology phone appointment.I’ll only be referred back to my oncology surgeon if there is a problem.I’ve been under the care of the urology team at Yeovil since 1998 and it won’t be the first time I have had to chase them up.I have no complaints about my treatment they have always been good but communication is not the best.Love Jane x

After my RC & a few months to recover, I started immunotherapy treatments. I think this was because they gave me only a 20% survival chance (down from 80% before the op).

But at the least, you should have been getting regular CT scans? At the least every 6 months - I get them every 3 months. My contact for this is my oncologist, not the urologist dept.

Hi Coojee,I have been having scans.I had no written report on the last one and no urology phone appointment.I intend to chase this up.Best wishes Jane

OK understood. After each scan, I get a phone call from my oncologist after about a week. I think it's oncology you need to chase.

That definitely  is not right Jane.

I have my scan and Consultant appointments as regular as clockwork twice a year.  

I hope this gets sorted soon

Love Inanna x 

Thanks Inanna,I chased it up this morning and am waiting to hear back.Love Jane xx

One of the urology nurses has phoned.I should have had more follow up,she was apologetic.She has spoken to the secretary and they are going to send out a urology appt,it will probably be a phone call.Love Jane x