How I Came to Have a Radical Cystectomy
So after 12 months of getting progressively more poorly, weight loss, extreme fatigue, loss of appetite, repeat UTI's, blood in urine, high temperatures and profuse sweating. I went to a different Urologist for a second opinion. At that appointment he did a urine test and yet again I had a UTI. Antibiotics were issued along with an appointment date for 2 weeks later for a cystoscopy.
This is a procedure where an endoscope with a small camera at the end is put into the bladder through the urethra. It was during the cystoscopy that I was finally diagnosed with bladder cancer. It was September 14th, 2017. A day I will never forget. I didn't panic or cry when I saw on screen, that perfectly formed, little tree like tumor, wafting around in my bladder, in fact I wasn't even shocked. If I'm honest it was a relief, I finally had answers as to why I had been feeling so rotten. So how was this "little beast", this tumor in my bladder going to be eradicated?
The first plan of action was to perform what is called a TURBT. This is an endoscopic treatment where a transurethral resection of the bladder tumor (TURBT) is performed and is the first-line treatment performed to diagnose, stage, and treat visible tumors. This procedure was performed around two weeks later. For me it was a relatively painless procedure and I didn't really suffer with any after affects. Just some mild discomfort that was sorted with paracetamol (Tylenol). I then had to await "the results". That for me was the worst part, waiting around for that appointment that would determine what would happen next.
Getting the results
The day finally arrived to go back to the Doctors office. I was informed that I had a high grade, aggressive bladder tumor. Grade 3, stage 1, not yet muscle invasive, but that another TURBT would be necessary in around 6 weeks time. I felt in limbo and hated the feeling of knowing I was walking around with this "tumor thing" inside of me, I just wanted rid of it!
Anyhow a few days later the Doctor rang me at home to say that he had in fact reconsidered my case and in fact wanted to do the second TURBT sooner, 4 weeks instead of the 6 weeks he had originally suggested. Without hesitation I agreed.
4 weeks later the 2nd TURBT was performed. As the Doctors office was quite a distance from my home I asked if it would be possible to phone me with the results, he agreed. Around 10 days later the phone call came. My Doctor advised me that the TURBT hadn't been successful in removing the tumour and in fact it had progressed. It was still grade 3 but now stage 2, just about breaking through the bladder wall. He advised that he wanted to discuss my case with colleagues and would call back in the next few days with my options.
BCG or radical cystectomy
3 days later the awaited phone call came. I'd been carrying the phone around with me everywhere waiting for this moment. I was stood in my living room when I answered that call. My Doctor advised me that the group decision was that I could either undergo a number of BCG treatments, with no guarantee at the end that I would be "cured" or a Radical Cystectomy. The Radical Cystectomy would not only involve the complete removal of my bladder, but also some of the urethra, a number of lymph nodes plus other surrounding organs including my cervix, anterior wall of the vagina and appendix, luckily for me I had, had a hysterectomy a number of years earlier, else that would have to have been performed as well.
It was almost without hesitation that I chose the Radical Cystectomy. For me it was an easy decision to make as I just needed to be rid of this cancer as soon as possible. I felt that cancer had already robbed me of almost a year of my life and I wasn't prepared or willing for it to steal anymore. I underwent a Radical Cystectomy 2 months later. Yes, it's a major operation and yes, I would have "a bag for life," but for me that was a small price to pay for ridding myself of this cancerous tumor and, more importantly, getting my life back.
It's now nearly one year since I had that epic, life changing surgery. It's not always been an easy ride, and it's most certainly been a rollercoaster of emotions but I can honestly, at this moment in time say I have no regrets. I am alive and well and have been backpacking around SE Asia with my husband for the last six months. My surgery has given me back my life, but more importantly a future, a future that l can plan and enjoy and for that I am eternally grateful.
Have you talked to your doctor about navigating sex with bladder cancer?