Around 2009/2010 at age 61 years I suffered from back pain when exercising on the floor lied on my back – during Pilates or doing sit ups – and had weird sensations and pain in my lower abdomen when swimming. I also had frequent worrying painful abdominal episodes which seemed to come out of the blue. I was given anti-spasmodic tablets which did nothing to help and was referred to hospital in 2010. It was thought after numerous tests that the pains were related to IBD (having suffered previously with Crohns) but scans and x-rays proved there was nothing wrong in the bowels. The tests showed small stones in my gall bladder but I was not happy to have an operation to remove the gall bladder at that stage and instead agreed to be monitored whilst reducing fat in my diet. I returned to my GP in 2011 with pains and blood in my urine, which was deep maroon in colour, and was then referred to Urology. A CT scan showed a chronically obstructed right kidney and the proximal ureter was dilated. Cancer was suspected. It was frightening. The tumour, I was told after Ureteroscopy procedure (a stent was inserted), was large but appeared contained.
Surgeon at the Great Western Hospital treated my ureteric/uterial cancer in August 2011 by removing the ureter and the attached kidney which was dead. The procedure is known as a nephro-ureterectomy. This was open surgery when two incisions were made. One made in my side just below my lowest rib going around my back to remove my kidney and another just above my groin (using an old appendectomy scar) to remove the ureter and tumour. The operation was successful and my stay in hospital was 10 painful days. Sutures were clips and a total of 52 clips were removed after 12 days – Ow!
Tests to stage and grade the cancer cells were performed to determine any need for adjuvant therapy such as chemotherapy or radiation therapy. The cancer that affected my ureter was transitional cell carcinoma (TCC) such as can develop in the ureter, bladder or renal pelvis. Mine is classed as a primary cancer meaning it started in the ureter and not elsewhere in the body (when it would be secondary or metastatic cancer – good news having had treatment for Ovarian cancer in 2004) – and it was contained only in the ureter. The tests showed it was stage 3 meaning fast growing so further precautionary surgery in Dec 2012 took place to remove the stump of my ureter but no cancer was found there and no chemotherapy required.
Recovery from the operations was painful and slow but successful with no infections or other immediate risks associated to this type of operation. Recovery was approximately 6 months in all before I felt myself again. Unfortunately an incisional hernia developed but this was not life threatening and was tolerable and it was left. - my decision
As the cancer can recur (I am told about 20 to 30% people with cancer of the ureter or renal pelvis will develop bladder cancer 5-10 years later) I have regular follow-up appointments to detect any new cancer growth. The follow-up sessions have been and continue to be annual cystoscopies, during which a Consultant Physician inspects my bladder with a small telescope to detect potential recurrences, and I have occasional CT scans – next one due October 2015. So far so good all is well - phew! This year 2014 I have plucked up the courage to have a further operation to fix the Incisional Hernia, which has also been successful if painful.
I have written this experience down now after being asked, as it may help others with similar problems, I hope it does. I remember looking on the web and I found no experiences in this category so I have agreed to write this up from notes I made at the time. I was told this is a rare cancer and cause unknown. In my case I suspect it could have been caused by my working with and using hair dyes over 50 years. Such that my hair is now white and will remain white – but who knows what caused it.
