SCI and Bladder Cancer
I received a big shock in March 2012 when I was diagnosed with bladder cancer after a routine scan. My doctor said that dealing with the cancer would be a bigger challenge than dealing with my quadriplegia, which I obtained in a car accident 29 years ago. That may be an exaggeration, but it has certainly involved a lot of changes to my life, wholesale changes to my lifestyle, diet and exercise routine, as well as dealing with the surgery and other medical appointments and procedures. I had surgery to remove my bladder in April 2012, and all the scans since then have shown no sign of any cancer returning. That is a relief, but there remains a chance cancer will return, so I have to remain vigilant with my scans and keep myself as healthy as possible.
"The steps that can be taken to minimise the chances of cancer recurring are usually the same as those that minimise the chances of contracting cancer in the first place... Knowing what these steps are could be of particular interest to those with a spinal cord injury (SCI), because bladder cancer is more common for us."
The steps that can be taken to minimise the chances of cancer recurring are usually the same as those that minimise the chances of contracting cancer in the first place, as well as maximising health and well-being in general. Knowing what these steps are could be of particular interest to those with a spinal cord injury (SCI), because bladder cancer is more common for us. I have done a lot of research, gone on various retreats, and consulted with a wide range of conventional as well as complementary and alternative practitioners, and I feel I have learnt quite a lot that may be of interest to others.
In this first blog post, I will talk about why it is that people with SCIs are more prone to bladder cancer, and then I will talk a little about my own experiences with being diagnosed, going through the surgery and the recovery process that followed. I like to back up claims that I make with references to the scientific literature, but I will try not to make the discussion too dry!
Many studies over the past decade or so have found an increased risk of developing bladder cancer for people with SCIs compared to people without . On average the bladder cancer develops from 20 to 30 years after people acquire their injury but it also occurs earlier or later [2, 3]. It used to be thought that the increased risk and the amount of time between the SCI and developing bladder cancer was due to the long-term use of indwelling catheters . However, the findings from recent studies suggest that this is not the case, instead the increased risk is likely due to the characteristics of a neurogenic bladder experienced by people with SCIs .
"Many studies over the past decade or so have found an increased risk of developing bladder cancer for people with SCIs compared to people without."
A “neurogenic bladder” can refer to a broad range of problems but for people with SCI, the most common bladder problem is an underactive bladder due to a lack of nervous stimulation . This means that higher than usual volumes of urine can accumulate in the bladder and that it is static, which is different to a fully functioning bladder where the muscles of the bladder wall keep urine in constant motion. The high volumes and static nature of the urine cause chronic irritation to the lining of the bladder, as do indwelling catheters and the chronic urinary tract infections which often impact people with SCI.
"There are often no obvious signs of a developing bladder cancer for people with or without a SCI but the most common symptoms that people should be aware of are any blood in their urine, and any other changes in how the bladder empties."
It is chronic irritation, of any kind, which can lead the cells of the bladder to change and become abnormal, sometimes changing in ways that create cancer cells.
There are often no obvious signs of a developing bladder cancer for people with or without a SCI but the most common symptoms that people should be aware of are any blood in their urine, and any other changes in how the bladder empties . Any of these occurrences should be reported to your GP or specialist. Even in the absence of symptoms, annual surveillance, using methods such as ultrasound, is essential for people with SCI because evidence also suggests that bladder cancer development can be more aggressive in us and early detection is the best defence [2, 3, 6].
In my own case, I had few symptoms, and I certainly did not suspect that I had bladder cancer. I did have some extra sweatiness in the evenings or late in the day that I would normally associate with having a full bladder or a flare-up of a urinary tract infection. I mentioned my symptoms to my specialist SCI GP and he asked me how long it had been since I had my last ultrasound. I said that it had been over a year, due to a delay in my annual review, and he suggested that I have it as soon as possible. I had the ultrasound of my kidneys, bladder and urinary tract a few days later, which showed a mass in my bladder that they suspected was a tumour. A sample of the mass was removed the following week and testing confirmed it was bladder cancer. The good news was that a further scan indicated no signs that the cancer had spread beyond the bladder.
"In my own case, I had few symptoms, and I certainly did not suspect that I had bladder cancer... I had the ultrasound of my kidneys, bladder and urinary tract a few days later, which showed a mass in my bladder that they suspected was a tumour."
The medical team strongly recommended that I have surgery to remove the bladder as soon as possible to prevent any spread. I agreed and went ahead with the procedure a couple of weeks later. In the operation the bladder was removed (a cystectomy) and replaced with a urinary drainage system called an "ileal conduit". I will not go into the details now, but suffice to say that as a urinary drainage system it actually works better than my old system of using an external catheter, in that I have fewer leaks and episodes of sweatiness, and I have not had a single urinary tract infection.
The other piece of good news is that it seems that as long as the cancer has not spread within 12-24 months of surgery, then long term survival is good. One Melbourne-based study found that all patients surviving 24 months post-surgery were still healthy 5 years later . It has been over two years since my operation, and all the imaging scans (MRIs) since then have been clear, so things are looking hopeful, although I will keep having MRI scans every year to check the cancer has not returned. In my future blog posts, I will focus more on what I have done, and am currently doing, in my attempt to remain healthy and cancer free.
- Welk, B., et al., Bladder cancer in individuals with spinal cord injuries. Spinal Cord, 2013. 51(7): p. 516-21.
- Cheng, J.N., et al., Cystectomy in patients with spinal cord injury: indications and long-term outcomes. J Urol, 2010. 184(1): p. 92-8.
- Kalisvaart, J.F., et al., Bladder cancer in spinal cord injury patients. Spinal Cord, 2010. 48(3): p. 257-61.
- Groah, S.L., et al., Excess risk of bladder cancer in spinal cord injury: evidence for an association between indwelling catheter use and bladder cancer. Arch Phys Med Rehabil, 2002. 83(3): p. 346-51.
- Jasmin, L. Neurogenic Bladder. MedlinePlus 2012 22/05/2012 06/05/2014]; Available from: http://www.nlm.nih.gov/medlineplus/ency/article/000754.htm.
- DeSouza, K., S. Chowdhury, and S. Hughes, Prompt diagnosis key in bladder cancer. Practitioner, 2014. 258(1767): p. 23-7, 3.