Hello all,
Long time no speak, so thought I'd check in and say hello to you all, including the newbies.
Since I last posted a while back, things have been going amazingly well. I've just finished my 3rd week of Radiotherapy. I was on Chemoradiotherapy, but after the first week of Capcetabine, I was having issues with my bowels. To give an idea of what was happening without being to graphic, let's just say I was petrified if I felt I need to fart!
I had a review today, and a junior oncologist thought she'd come and do it after reading my notes. Without meaning to blow my own trumpet, she wanted to meet this patient that fought the surgeons and blatantly refused to have his bladder out - and in her words "to pull away from the clutches of the surgeons".
She specialises in Urological Cancers, and is a very strong advocate of more modern methods of treatment, such as Radiotherapy and Chemoradiotherapy, and she explained to me clearly that these methods are working, that these methods are giving patients not only a life, but a quality of life too, and that surgery shouldn't be the first resort, and it should in fact be the last.
As some of you I've interacted with previously are aware, I did all I could to resist having surgery, (for the newbies, I'm only 44 btw), and yet, it felt like I was being made to feel by the surgeons, by my CNS, and even my Oncologist, that I was being bullied in to it. Every time I mentioned wanting bladder preservation, I was constantly being told surgery is the way to go.
Now, from my experiences at least, dealing with what now appears to be a younger generation of doctors and treatment staff, the mindset of the hospital I'm now at is very different to my original hospital. My original oncologist has left, and I now have another one, who is younger, and more willing to advocate and try the alternatives first. Hopefully, times are a changing, and Cystectomy won't be the routine, and perhaps mindsets are changing as to what the standard procedure will be in the future when the next generation of Urologists and Oncologists come through.
Of course, even now, as a patient, the final choice is ultimately yours as to what line of treatment you take - but perhaps we'll see in the near future, the uptake of patients going for bladder preservation increase, with the advances in Chemotherapy medicine, combinations of chemo, along with radiotherapy, and survival rates matching, if not exceeding surgery.
If not for the power of this site, and Rily especially, after he told me about himself going down the radiotherapy route, as well as carrying out my own research in to the pros and cons, I may well have also just swallowed it and had bladder removal - but I didn't, and 7 months after diagnosis, my Grade 3 Stage 3 cancer has GONE - and my bladder is still here.
Question your surgeons, question your Oncologist - and make an informed choice.
The end of the road is in sight for me, I have 5 sessions of radio to go - and a return to work date of 15th of July - but for those about to start your journey, have just started it, are part way through it, or coming to the end - I wish you all the best in whatever you decide to do, what pathway you take - because it's ultimately your body, your life, your quality of life-but whatever you decide, make sure it's an educated one, and the one that's right for you.
Of course, I'm under no illusions that sometimes, this nasty disease can be too far gone to have anything but a Cystectomy, but if it's not - consider your options, because remember- when you're bladder has gone, it's gone for good. If the radiotherapy doesn't work and the cancer returns - well you've got the option of removal further down the line.
Hopefully, those people at NICE can see that times are changing, and that sometime in the future, the removal of the bladder isn't the standard treatment.
Hi . Nice to hear from you and great to know things look promising for you. I was fortunate to meet an oncologist who is a great advocate of bladder preservation where possible. Recently been moved to annual checks after reaching the 5 year mark. Wishing you all the best going forward.
Cheers Rily - lets hope its then another 5 years for you, then another 5 then another 5 and so on 
Nick. Well done on getting through it. You may start to feel a bit wiped out for a while as it catches up with you, but it is normal. As you say, the body starts to heal itself after all the trauma. It will be several weeks for your flexi as things need to settle down. Wishing you well. Best wishes.
