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?
Hello Akira101 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.
Best wishes to All, rily. What is a Community Champion ?
Thank you for the reply.
Yes I had a biopsy on April 15th and for the results on 10th June and they told me the grade. Do you know the difference on T1 and PT1, I only seem to see T1 in other posts.
Also the TURBT. do they grade it again on what they remove? Is it a long surgery?
I was in such shock on Monday I forgot to ask somethings.
Kind Regards & Many Thanks
Hi Akira101 . 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.
Is the grade 3 not a big problem?
I had a CT in Feb, Chest, Abdo, pelvis and it was clear even though I was passing a lot of blood.
The bladder biopsy in April showed this cancer, amazing that it didn't show in the pelvic CT. That is why I had some hope it wasn't cancer and perhaps Radiation Cystitis as Oncologist thought.
I really wish they had just suggested bladder removal, this way I konw the cancer would be gone but consultant wants to try the BCG treatment first.
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.
Hi Ellie, mine was pta grade 3, I had 15 BCGs, I was diagnosed over 6 years ago and been clear since, I’m under no illusion it won’t come back but as of now my bladder and I are doing fine, I have check up every 6 months. As Rily says it’s a personal choice how you go but my thinking is I’ll hang on to my bladder as long as I can. Good luck X
The p that is often added to T/G means pathological, i.e. Determined by path report from a specimen. It sounds as if the tumour was removed & the next TURBT is to confirm not yet muscle invasive. It will be fairly brief but the anaesthetic can take a couple of weeks to fully clear.
I had a TaG3 diagnosis & my surgeon gave me the choice of RC or BCG. I did opt for surgery & have no regrets, but it's not an easy decision - both options have pros & cons.
Thank you for the reply. That gives me a bit of comfort that the BCG treatment can work. I would prefer to keep my bladder too. Fingers crossed this works for me.
I will keep you all posted.
Thanks for replying Teasswill. I guess it is in the hands of the consultant. They want me to go the BCG route first, so time will tell.
I am very nervous about it all. So different from the other cancers I have had.
Welcome to the group Akira101,
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.
A medical close family member told us that she would recommend hanging onto the bladder as long as possible too. It's great that it's possible to live without and several ways of doing this if it's unavoidable, but the Macmillan info if carefully read will give anyone offered the choice enough reasons to be very cautious. Possibly relevant thought: my optical dispenser friend, with awful eyesight herself, says she will not consider the much advertised sight corrective surgery until the eye surgeons are having each other do their own eyes-which they are not.
All the very best, Denby
Certainly RC is entails its own risks, but so is not having it. The gamble with G3 is that it can easily progress & may become incurable, whereas with early RC there is a good chance of cure. So you have to weigh up the pros & cons of each treatment option related to one's own priorities, life circumstances etc. Listen to those in urology/oncology who have the expertise & can give you accurate information, rather than someone from a different speciality.
It isn't at all the same as sight corrective eye surgery which would be regarded as cosmetic - it's certainly not a matter of life or death. BTW I'm an optometrist & I do know ophthalmologists & optometrists who have had it done, although i wouldn't consider or recommend it myself.
I had my TURBT Friday and got home from hospital yesterday with catheter that will be removed Tuesday.
Was in terrible pain Friday mostly from foley and now not so bad with ordinary catheter installed.
Now the waiting game for results. They tell me around 3 weeks.
I see some clots of blood in catheter bag but I assume this is normal?
You can expect clots for several days, it takes a while for the wound in the bladder to heal. Later, for several weeks, you can expect to see brown scab tissue when you pee.
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