G3T1 with Squamous Differentiation?

Hi Tortoise .When you have had your follow up TURBT next week, you will have more accurate information to help with your decision. I hope all goes well. Best wishes.

Hello, I have my second TURBT 25th this month.

I was given the same options and quite frankly I don't want either ;) however, early thoughts are BCG as I still want my bladder. Although both  options don't sound fabulous.

I am 47 and mother to two young ladies 13 and 10, I must have treatment for their sake as I want to be there for them

difficult decision aren't they

When is your second TURBT?

Hi Pegasus.

At the outpatient appointment after the first TURBT I was given the option of BCG or RC. Think it was as I said my preference was to retain the bladder (I.e. BCG) that I was scheduled for a second TURBT which I had last week. Glad I have had this as was informed by the surgeon pre op that they didn't get muscle last time (wasn't told this in the OP appointment), but as my bladder wash on the first was clear throughout, should have suspected this was the case. They need muscle to stage it correctly.

Post 2nd TURBT, lots of clots in bladder wash. Was also told post op that they removed a further 2 very small growths as well as extending the margins of the 3 they removed initially.

Have pushed for early OP appointment this time, so now have it booked for next week, which is when I need to make the decision. Like you, would prefer not to be in this situation as both options not ideal, but its either pick the most appropriate treatment, or let it run its course, which isn't an option for me. Likely to go with RC to give best long term chances, but need full and frank discussion with the consultant first.

My main issue though with this whole saga is this should have been picked up by the GP a year ago when I complained of urgency. Was told by GP that I needed to strengthen my pelvic floor, even though I didn't have control issues, and even had to push for PSA test, which came back normal. Didn't know anything about bladder cancer at this time. 6 months later noticed blood in urine which started me on the current journey (though took a month to get a GP appointment).

All the best with your decision. Whatever you choose is right for you

RE OP appointment, after 1st TURBT, discharge letter said OP in 3 weeks .. had to wait 4.

Pushed to get 2nd TURBT as soon as possible by calling hospital urology department, but still had 2nd TURBT 7 weeks after 1st.

Was told by surgeon that OP appointment would be quicker after 2nd TURBT so this time after 2nd TURBT discharge letter said 2-3 weeks, I called consultants secretary after 1 week and booked in at the 2 week point. Hoping pathology will be in place by then. 

I too went to the GP for urgency difficulties. I then spent a year with a nurse for bladder training. I too knew nothing about bladder cancer. I then found blood in my urine but was also bleeding daily with a spotting period which never ended so I was unsure if I was getting it right. I was sent for an ultra sound where the lump on my bladder was found. Nothing was discussed at the time. I was then contacted by a doctor at my surgery who stated over the phone "sorry but you need to go for more tests as you may have cancer". I think this was around May 2023. I was left in shock but tried to be positive. a month later I was in surgery TURBT.

The following week I was having an appointment to assess the reasons for constant vaginal bleeding (this department we female and wonderful) they found polyp and removed whilst adding coil I asked her about the TURBT and she looked on my record to say that their was a specialist meeting booked in for two weeks time.

I waited and called but got no further with Urology. Three weeks later I called again was told they could not tell me the results as it needed to be a specialist. 

6 weeks later a meeting was set up, as the time had elapsed I assumed everything was okay. I was then told I had high risk non muscle invasive cancer. options same as yours and I had a week to decided. 

They gave me a number to call, no one ever answers this number and I left a message stating I wanted to keep my bladder. They said they would ask for my decision on the following Tuesday, no one called. They had taken my answer message as my decision.

I know the NHS are under pressure and the people who work there are lovely caring people but there is not enough staff and the staff who are there are over stretched and stressed. 

As I work full-time I need more notice of procedures, it is only because I called every week that I knew about the appointments. 

I think being told and giving a few leaflets is not enough, I think I would be lost if I didn't have this site. Thank you McMillan for give us this site.

How do you get the secretary's number, I feel like I am going in blind with all this at the moment.

Did you say you are going for the whole operation?

Hello Tortoise

Diagnosis for me is G3 pT1 

I looked up the urology department of my local NHS Trust to get the contact numbers for consultant secretaries, appointment/surgery bookers and local Macmillan support nurses. Just looked through the Urology pages until I found what I needed. To get the secretary's number, just clicked the link for the specialist who saw me at the first OP appointment. 

To push the 2nd TURBT forward, talked to the waiting list coordinator. arranged pre OP a week earlier, and group and save bloods so that I could be admitted next day. Note that the pre op blood grouping (group and save) is normally only valid for 7 days, so got a second request form so I could repeat this if I wasn't pushed forward. Asked for any cancellation.

Also found out that although the clinical nurse specialists / Macmillan nurses, whilst there is a number listed, if I call it goes to another department who then have to email the CNS's to contact me later. 

G3pT1 is the same .. mine just has an additional comment of  "a potential squamous differentiation focus" which I think makes it more aggressive. 

BTW.. I asked for the OP meeting (and all other) notes which the secretary should be able to give you. Can see mine on the hospitals outpatients portal alongside the discharge notes,  ultrasound, flexible cystoscopy and CT scan reports. Can't see the actual pathology report, but will be requesting this when I meet with consultant, hopefully next week. 

I do agree a few leaflets just don't cut it. I have learned so much from this site.

My OH has managed to keep his bladder, which for him was very important, after being told that Mitomycin was 'an equal' option with more BCG or complete bladder removal. I do understand people have very different attitudes to it, but he could so easily have been tipped into something he didn't want due to poor support for decision making. FYI his was G3 Pta but there were a heck of a lot of tumours- his whole bladder, as he saw it on the screen.

Good wishes, 

Denby

I was considered young (56) at time of diagnosis. Mine was only TaG3, but was given the same choice. G3 is always risky, and I think the squamous element even more so. My surgeon said 50% people choosing BCG end up with surgery, sometimes with chemo as well. Some having BCG will be cured with BCG alone, some will develop an incurable recurrence. The problem is not knowing which group you will be in. 

For various reasons I opted for surgery as the better of two unpleasant options. I worked out that total time off work for BCG (over 3 year course) would be about the same as for recovery after surgery. If I had BCG & later needed surgery, that could mean early retirement. I also had an elderly mother who might need more of my time. My priority was best chance of cure & to get on with my life with peace of mind. That settled me on surgery.

Then I had the difficult choice of stoma or neobladder (reconstruction). Neither was very appealing, with different issues for each. In the end I plumped for neo. No complications, started going out to leisure activities about 6 weeks post op & phased return to work at 3 months. By 6 months was doing all normal activities but about 8 months before shed end of the day fatigue. It was tough at the time, training neo & gaining continence, but 12 years on, I am happy with my function, am fit & well.

You are absolutely right, no right or wrong answer, just what is most appropriate for you, given your own personal circumstances & preferences. Best wishes making your decision.