Hello All,
In 2012 I had full hysterectomy (private) due to womb cancer G1 S1 no follow up treatment apart from the usual check ups that consisted on an internal examination.
I never has ny follow up scans, blood tests etc.
In 2013 I began to have bladder problems, urgency, couldn't make it on time a lot and what I can only explain and matter that looked like coffee granules in urine occasionally.
I told this to my consultant who did an ultra sound of my bladder and said he though it was most likely bladder damage after surgery but he did refer me to a uro/gyne consultant in 2015 who prescribed me medication that didn't work by this time I no longer had medical insurance so it was NHS.
The problem got progressively worse and in June 2017 I was still complaining about the bladder problem and requested another referral to a urologist.
In December 2017 I got the appointment.
During an internal examination they discovered a 2.5cm lesion that after biopsy was discovered to be vaginal cancer and I underwent Chemo/Radiation but had the bladder problem throughout and after treatment finished in March 2018.
In May 2018 I noticed blood in my urine and told my doctor who contacted oncologists for an appointment. CT in early May was clear so I eventually got an appointment in Jan 2019. The oncologist said most likely Radiation Cystitis and arranged another CT in Feb 2019. It came back clear.
A week after CT in Feb I started passing blood heavily and this lasted for 7 weeks and I think had a cystoscope in March and a lot of red patches were visible so I had a biopsy on 15th April and was called back Monday 10th and told I had bladder cancer PT1G3 and am going in for a TURBT on 14th and he said this would most likely be followed by BCG and if this didn't work then it would be Cystectomy.
I normally take things in my stride, but I am so worried this time.
Can anyone give me some advice on what to expect?
Many Thanks,
Ellie
Hello Ellie and welcome to the group. Sorry to hear about your previous problems and now this. It is not uncommon for ladies in particular to be late in being diagnosed. Did they take a biopsy when you had your cystoscope as this is how they would have determined the stage and grade? A TURBT is a fairly routine procedure under general anaesthetic. Usually done in day surgery on an overnight stay. Some discomfort when peeing for a few days afterwards. T1 is early stage and BCG treatment can be very successful in these cases. If there is anything we can help with , please ask. Best wishes.
Hi . The surgery itself is fairly short depending on how much they have to shave away. It can be less than an hour. They keep you in for several hours to recover from the anaesthetic. You will probably have a catheter in until the bladder clears. The bag starts off looking like Red wine. It gradually turns to Rose, and when it looks like Chardonnay, they let you go, once you can have a pee on your own. T1 and PT1 are the same. The P just stands for Pathological, meaning it was biopsied in the path lab. It's not always used. They will likely do a further biopsy to give them a bigger picture. At some point you may be sent for a CT scan. This is more preventative than anything else just to rule anything else out. Best wishes.
Ellie. The grade 3 is the more aggressive type of abnormal cell, but the most common. I was G3. Early stage BC which is sitting on the bladder lining is difficult to pick up on a CT scan. A flexibly cystoscopy is the best test. Some people choose to go for a cystectomy, it is a personal choice. I am sure others will be along with their experiences. Best wishes.
Welcome to the group ,
I also had T1 G3 tumours, I was offered BCG, they didn't mention bladder removal to me. After 3 x TURBT I've now completed my first 6 doses of BCG. Had a break and I have 3 more booked BCG doses in for July.
Keeping my fingers crossed for you.
xx
