CT results

Hi frank123

I thought the CT scan was to check that the cancer hadn't spread to other parts of the body. I'm no expert but I expect you could get an all clear CT scan and have muscle evasive BC. Hopefully more experienced people will be able to assist better than I can.

To me it seems strange that you've been booked in for a pre op but not had the operation date yet. I've had my pre ops the same week as my operations.

Just for a heads up, I had to have a second operation (TURBT) before they could get clearer results. I understand this is fairly common. Hopefully you won't need to. 

I met my consultant a couple of weeks after my second and had a treatment plan put in place. 

Sorry for not being able to clarify the CT scan situation.

Best of luck and hope things get in place for you soon.

Hi BFG,You don’t always get the surgery date prior to the pre op.When I had my cystectomy I had the operation date by letter a couple of weeks after the pre op.The same has happened in the past with other procedures.I usually had my ops within a month of a pre op.I prefer to have a date first though.I find it less stressful.Best wishes Jane 

Hi Frank123,You should know the full details once the biopsy results are back.A multi disciplinary team ( MDT) made up of medical staff will discuss the results from histology and scans etc and then you get to see the consultant.I got given the type of cancer,the stage and the grade at that appointment and the plan for treatment.It is all a lot to take in at first and the waiting is never easy.Best wishes for the pre op and the follow up TURBT.Jane 

Hi Winkers60.

Ah okay,. I've had all four of my pre ops just before the operation (within the week).. Always known the operation date when having the pre op.

Will make a mental note this isn't always the case.

Thanks again.

That’s good and preferable.I’m glad you haven’t had to wait too long.I think they aim to give you a date beforehand but it doesn’t always work out like that.Jane

Hi BFG 

I’ve had all my pre ops without ever knowing the op date for my cancer-in fact one had to be done again because the op itself was more than 12 weeks after the pre op and the pre op was “out of time”! I think I’ve had 5 now, as I had non cancer related surgery a couple of months ago.

It would have been much less stressful knowing the date of surgery in advance.

Sarah xx

Hi Sarah,That is a long time to wait.I think the cut off date is similar at my hospital but they do try and get you in within a month.I have waited 8 weeks before for a urology procedure.I was thinking earlier it’s 40 years since I was first referred to urology and there have been a lot of changes over that time.I agree it’s much better to have a surgery date before the pre op.Love Jane x

Hi Jane, yes I was a bit annoyed it had to be redone. When I went for my pre op for my gallbladder op they didn’t even know I’d had my bladder removed. I mentioned it as I considered it important since one of the incisions was to go right beside my urostomy and the nurse didn’t seem to believe me because it wasn’t noted in my records! 

Lack of communication has a lot to answer for, and wasting time going for second pre ops! My fil still hasn’t had his pathology results since his cystectomy on 1st September, nor a follow up. I notice big changes in just the past few years and unfortunately usually not for the better.

Sarah xx

Oh that is bad.I had a similar experience in the health centre not believing I had cancer as they never received my discharge notes.One ofthe gp’s  was looking at the wrong scan and saying what is this rubbish about you having cancer.I had to point out if she put up the later scan the cancer would be clearly visible.Oh yes you do have cancer she said but no apology for being made to feel as if I was making it up.I preferred the days when there was not so much reliance on technology as the communication is so bad between hospitals.I hope fil hears something soon,he really hasn’t had the best treatment from what you have said.Love Jane x

That’s awful Jane! And no apology…what is wrong with these people? My surgery won’t even give me an appointment despite having had recurrent cancer. Last time they wouldn’t see me in person but diagnosed me over the phone and gave a prescription for antibiotics, I ended up in an ambulance and could have died if I hadn’t got to hospital. My gp just told me I am remarkable and the other one phoned me when I had been admitted, still insisting I had a urine infection when even my scalp was yellow with the jaundice from my blocked bile duct. He didn’t seem to believe me when I told him I had acute cholangitis. Still insisted the surgery was right, not the hospital gastro doctors who had me in front of them with the CT scan results! 

I’m actually scared of being ill again because I have no trust left in any of them. 

Sarah xx