In this episode I’m showing you my CT Scan I had at Pinnacle Imaging in June 2019 (so that’s two months before I’m making this video). I don’t know much about what’s in those images, but I’ll try my best to talk you through the interface and what those grey blobs (might) mean. Bottom line is: I’m healthy – that’s all that counts 🙂
I’ve recorded the above video in November 2017, shortly after I was discharged from my penultimate surgery, and just after I got the “all clear”. It’s probably a little long as a promotional and snappy opener, but it tells my whole story in some detail.
Started exhibiting symptoms of painful urination and frequent diarrhoea. Ultrasound revealed a “mass” in my abdomen.
A CT Scan revealed an inflammation in the area that required treatment with strong antibiotics, administered via PICC line (Zosyn, Merrem and Invanz)
Colonoscopy revealed a blockage at 15cm, mostly likely cancerous
At Baptist Hospital, open surgery revealed a 20cm tumour, prompting a complete sigmoid colon resection and partial resection of several peripheral parts. Diagnosis was stage 3 colon cancer. Fistulas to bladder, appendix and caecum were also removed.
Chemotherapy was scheduled for April. I was given a temporary colostomy.
One week after discharge, a tennis ball sized tumour was discovered in my bladder and resected during a cystoscopy. As a result, chemotherapy was postponed by one month.
Genetic Testing revealed that my cancer was caused by Lynch Syndrome. In addition, it was found to be K-RAZ positive and MSH-2 high. Bummer!
FOLFOX chemotherapy was administered, but didn’t work.
After 8 infusions, the tumour had regrown to another 12cm monster while I was on Oxaliplatin and 5FU. The tumour was resected again on the inside of the bladder, however it was still present on the outside of the bladder.
The only recommended course of action was a radical cystectomy. But because Baptist Hospital could not perform this procedure at the time, we were refused further treatment and advised to go “elsewhere”.
We found Mount Sinai Hospital, who were happy to try an alternative approach, deeming a cystectomy as too radical.
At Mount Sinai, radiation therapy in conjunction with FOLFIRI chemotherapy shrank the tumour from 12cm to 6cm.
A fistula developed between my disconnected rectum and my bladder. As a result, I was now urinating from my rectum. Because of the fistula, we stopped the radiation therapy, but kept the chemotherapy going.
After a total of 8 FOLFIRI treatments, the tumour didn’t shrink any further despite increasing side effects.
Stopped FOLFIRI in preparation for possible surgery
The tumour started growing again instantly and a second fistula developed from my small intestine to the bladder, leading to a heavy abdominal infection.
To avoid sepsis, I was put on a cyclic TPN. At the time, surgery was deemed impossible.
My life was now a painful nightmare: I couldn’t walk anymore without the help of a stick and/or a wheelchair, had to urinate under extreme pain every 10-30 minutes and couldn’t sleep as a result. A full pelvic exenteration was on the cards, but due to my severely weakened condition couldn’t be performed.
Hence, my oncologist chose to give me a somewhat experimental treatment called immunotherapy.
Started treatment with KEYTRUDA. No detectable side effects.
Started feeling slightly better every day: less pain walking and less pain during urination. Started sleeping again. Felt fit enough to walk again.
Felt fit enough to start cycling again, including rides to and from our home to Mount Sinai Hospital (about 8 miles in total).
Spontaneous weight gain of 2-3lb per week, even though I was still on TPN and therefore controlled amount of calories. Suspected side effect was inflamed and probably fried thyroid. Otherwise I felt better than ever.
Surgery was scheduled to reverse my colostomy and remove any residual tumour tissue, including a possible cystectomy depending on what an open procedure would reveal. Previous cystectomy in January showed plenty of necrotic bladder tissue, so the surgery required both a colon surgeon and a skilled urologist
The procedure was performed at Baptist Hospital and – to everyone’s huge surprise – revealed NO RESIDUAL TUMOUR TISSUE.
Fistulas were removed with minimal bladder resection. My colostomy was closed and a temporary ileostomy was placed. The TPN was stopped, and after 8 months I started eating again.
In a second surgery, the remaining ileostomy was closed. Plumbing was now fully restored.