Are You Given All the FACTS?

Despite what you may read about bladder cancer...are you given all the FACTS?

Within 2 weeks of being diagnosed with bladder cancer, I was admitted to hospital for surgery to remove the tumor. The operation is called a transurethral resection of the bladder. The procedure, once explained by the urologist, seemed pretty straight forward. The cystoscopy showed a tumor present that needed to be removed and tested for staging and grading to establish how aggressive the cancer had become. The surgery was done under general anesthetic with access through the urethra into the bladder. Coming around after surgery apart from the anesthetic wearing off can be very uncomfortable and daunting as you have a catheter in your bladder to drain your urine into a bag. The nurses on the ward will encourage you to drink plenty of fluids and when possible take a walk. I was unable to walk after my surgery and struggled mentally to deal with the tubes coming out of me. The pain and feeling of the catheter was unbearable for me so I took to laying on my back only and welcomed the morphine on all occasions offered to ease the pain.

In most cases after your first surgery you will be given chemotherapy into the bladder. I was told you would not feel the normal side effects of the chemotherapy as it was administered straight into the bladder, which in my case was true. In order to be discharged the nurses monitor the condition of your bladder, which as a result of the surgery is filled with blood. They need to see that the urine starts returning back to its normal color. Once this is achieved they will remove the catheter. The removal of the catheter for me was painful, uncomfortable and completely unnatural. It was very difficult for me to deal with anything being put in or taken out of my bladder whilst conscious. You then have to pass water, which again was very painful and impossible for me to do without sitting down. The surgeon will pay a visit to let you know how the procedure went, but cannot clarify the prognosis of the removed tumor until they receive the results from the biopsy. In my case they were slightly concerned at the size of the tumor removed, but was confident that it was fully removed.

Recovery after surgery…not to be taken lightly

It's important that you understand the severity of the surgery that you have just been through. The pain relief given didn't do anything to stop the pain when passing water. The pain is immense prior to going to the toilet and for a period after. It's mentally difficult to comprehend what your body has been through because the trauma is all internal. I completely underestimated my recovery time and couldn't believe that four weeks later I was still in immense pain whilst passing water. Taking on fluids is vital to enable the bladder to heal, but as a result of this your frequency and urgency increases dramatically. The blood in my urine lasted for up to 2 weeks and I regularly had to change underwear that were soiled with urine and blood with the lack of control over your bladder. During this recovery period it is crucial that you plan any visit outside of your home with pre-knowledge of where you can go to toilet. I took to carrying a urine bottle because you have very little time between wanting to pass water before you have to go and getting caught out is very easy.

I remember a couple of weeks after surgery sitting down to watch a movie at home which lasted about 120 minutes. During this movie I passed urine on 6 occasions. Looking back now it felt like my life for over 4 weeks was totally consumed by the drinking of water and coping with the pain of passing water.

How to decide on what treatment when the choices are few… or are they?

Post the surgery your (MDT) multidisciplinary team will discuss your case and results. I was told 2 weeks after my surgery that my cancer was T1 non-invasive, which meant it had not entered into the muscle and was contained within the bladder lining. I was then however told that it was high grade, which meant the cancer cells grow quicker and was more likely to spread. This meant that to be sure there was no tumor remaining they would carry out the same procedure as before. So, for 4 months you are subject to surgery and recovery, which I've learned is common for people with bladder cancer. Eventually you get to the stage when you have to make a decision on your treatment. The options presented to me were minimal although you are able to seek a second opinion if not satisfied.

On research I learned that there were newer treatments and clinical trials. I was offered the most common treatment, which was BCG vaccine straight into the bladder. There was also the option of chemotherapy, again straight into the bladder or the removal of the bladder. On paper it seems that the BCG or the chemotherapy, which is given once a week for six weeks is the most obvious, but it's not without risk. There is a possibility that during these treatments your cancer could escape outside of the bladder lining. Whereas if you opt for the bladder removal that risk will be eliminated. However, the latter of these options is a major life changing procedure. They can create a new way for you to pass urine through a urinary diversion, but this is major surgery and can come with complications. I felt irrespective of my previous surgery that I was still physically fit and complete so took the option after discussions with my wife and kids to go with the BCG vaccine. This is not the option my wife wanted me to take, but I felt confident with the medical team and full of optimism that I would respond well to this course of treatment. It's very important that the decision you make is yours. Feeling positive about your treatment will aid in your recovery