Trying to get all information possible

Hi . Bladder removal is not always the only option. My oncologist was a great advocate for bladder preservation, I was T3/G3 and was given the option of removal or chemoradiation. I chose the radiotherapy route and still have a normal bladder over 8 years later. Although radiation makes you infertile, everything works in the sexual department for me. Best wishes.

What a frank, honest, and straight up reply there Rily. How fantastic for you. 

Thank you Rily, this was the only option offered but this was from a surgeon who did the turbt. He now being referred to oncology and a different surgeon as he said this is what was discussed in the MDT. So I guess we will have to wait. Can I ask what follow ups have you had for the last 8 years? The surgeon we spoke to said as it’s aggressive then removal is what is needed with radiation therapy first. G3 PT2. I think once we get to speak to oncologist we may be able to speak better about our concerns. We never felt this surgeon listened at all. I am inpatient so o kinda want this to all hurry up. I do worry with no treatment it’s spreading all the time. But after loosing a child I know I can panic at the slightest thing too. Ct scans showed it hasn’t spread so far but that was a month ago. The tumour itself was very large covering all the right side of the bladder and blocking the tube. He said he removed it. I do appreciate every comment and advice. Thank you 

The more I read on this forum the more I get the impression that RC is a choice rather than an inevitability. Obviously not applicable to all situations but in some, where RC is the medically optimum solution. You can chose a different route and keep going. 

Hi . Sorry I missed the question in your earlier post. For the first 3 years I had flexible cystoscopy checks every 3 months with annual CT scans and urine cytology. Then moved to 6 month checks but still with annual scans. Recently after a clear flexi and CT, I have now been moved to annual checks for at least 10 years. The benefit of these checks is that any clear are a relief, but if something new shows up it can be dealt with early. Best wishes.

You give us hope Rily. Can I ask did you have any complications with radiotherapy or long lasting effects? The only worry is they said if RC is after radio then it is more difficult. After seeing oncologist she said he was G3 pT3 not T2 which the first surgeon who saw us said. We constantly talk about each option and are now glad that this is an option as his sex life is very important to him but not as important as staying alive. They both have risks. They both can’t give any guarantee of the cancer not coming back. The chemo now will give him thinking time and time to ask more questions. 

• Hi . I was also G3pT3. The p just stands for pathology, meaning results were determined in a path lab. So far no long term effects. Although no problems throughout treatment the short term effects after treatment finished were erratic bowels and bouts of fatigue which lasted a couple of months, but gradually subsided. Something you may like to do is ask to be copied in the meeting notes of all consultations. I have all the notes from my consultations, and it makes things easier when you see things in black and white rather than trying to remember what is said. Best wishes.

Hi. Sorry you’re both having to go through this.

A couple of things: a neo bladder doesn’t necessarily mean you have to self catheterise. My husband (late 40’s) hasn’t needed to once yet.  We discounted radiation as, as you say, if you need to have your bladder out at some point, it reduces the ability to be able have neo bladder (this was important for my husband)  

Best of lunch with your decision. As Riley has shown, chemo radiation can be successful