I’ve officially been given, a neuroendocrine cancer diagnosis. Primary carcinoid tumours in the colon and secondary metastasis to the liver.
As detailed in my cancer diagnosis video above, I’ll spend some time explaining the appointments, steps and tests that have taken place, leading up to my neuroendocrine cancer diagnosis.
What appointments, tests and medical scans have I undertaken to arrive at my cancer diagnosis?
After experiencing my associated neuroendocrine cancer symptoms, the following events have taken place in this order to assist in my cancer diagnosis:
1. I visited my family doctor – 16th October 2015
I booked a visit with my family GP to discuss my cancer related symptoms with him, which at this point in time, was only some abnormal change in my bowel habits. I did have some mild abdominal discomfort but nothing intense like what happened later on in my journey.
He referred me onto the gastroenterologist department at Royal Perth Hospital here in Perth to seek an urgent colonoscopy, primarily because of my prior history of bowel cancer.
My doctor also sent me to have a range of blood tests, with the laboratory results to accompany my referral letter to the gastroenterologist.
See my urgent gastroenterologist referral letter here
See my blood test laboratory results here
2. Colonoscopy Procedure – 15th December 2015
I had a colonoscopy procedure performed at Sir Charles Gardener Hospital.
Findings: views to 5cm into the terminal ileum. Normal ileal mucosa. A few scattered diverticulae. In the rectum a 4mm pedunculated polyp snared and retrieved. Brisk bleeding treated with clip with good haemostasis.
You can read my full colonoscopy procedure report here
Important Note: You’ll notice in the findings from my colonoscopy report, a 4mm pedunculated polyp was snared and retrieved. There was never any histology finding sent back to my GP for the polyp that was removed.
3. I visited my family doctor again – 29th March 2016
I visited my family GP again, because my symptoms had progressed and intensified quite badly at this point. Along with my abnormal bowel habits, I had acute pain in the side area of my stomach that had become unbearable.
A referral was made to see the gastroenterologist, this time at St John Of God hospital in Midland.
Before attending that appointment, a CT scan was ordered.
4. CT Scan of Abdomen & Pelvis – 29th March 2016
CT Scan was performed on my abdomen and pelvis. I received a copy of this CT report from my family GP, to accompany my referral letter to see the gastroenterologist.
Reading this report was really the first moment in this current cancer journey, that I was confronted with the possibility that I might have cancer.
You can read the copy of my abdomen and pelvis CT scan report here
5. I visited the gastroenterologist at St John of God Midland – 4th April 2016
This was my first visit to the gastroenterologist this time around. I was told at this appointment that it would be remiss of them not to let me know, that they are treating my case as though they are dealing with a cancer diagnosis and most likely a secondary live cancer.
Their course of action for the proceeding scans and tests, is to identify where the primary source of my cancer is located in my body.
My next steps, in my pathway towards a diagnosis is to have a second (more detailed) CT scan complete and also a colonoscopy and endoscopy.
6. Second CT Scan – From my Neck Down – 5th April 2016
The first step the gastroenterologist wanted to take was to complete another CT scan. He wanted to scan parts of my body, not already previously reported on in my first scan.
He particularly wanted to gain scans on my lungs and bowel region, considering the first CT scan only really covered my abdomen and pelvis region.
I don’t currently have a copy of this CT scan report to share with you, but the findings suggest that there is a small 3cm tumour growing on the lower, exterior wall of my bowel, down near the rectum cavity.
7. Colonoscopy & Endoscopy Procedure – 11th April 2016
I went into St John of God Hospital in Midland and my gastroenterologist performed the colonoscopy and endoscopy procedures during the same operation.
Read my colonoscopy report here
Read my endoscopy report here
8. Second visit to the gastroenterologist – 20th April 2016
After completing a second CT scan and my colonoscopy and endoscopy, I attended a follow up visit to the gastroenterologist.
Thankfully, my colonoscopy and endoscopy procedures both reported positive results. There were no troublesome areas to note from their findings.
However, as a result of the tumour they have observed on my exterior bowel wall from the second CT scan, they are now highly suspicious that my primary source of cancer is coming from the colon.
To further diagnose their findings, they have sent me to get a full body PET scan done, which will provide a lot more indication to them as to what we are dealing with.
9. PET Scan Imaging Procedure – 28th April 2016
I had to wait 8 days to get this procedure done, as there is a very high demand for PET scan procedures to be performed because there is limited imaging equipment available here in Perth. I’m blessed in a way, because most people are waiting between 4-6 weeks to have this procedure done.
My PET scan images have confirmed what the gastroenterologist has thought up until now. The areas that have shown up on my PET scan images as being suspicious, is the tumour on bowel as well as widespread areas on my liver.
10. Call from the gastroenterologist – 6th May 2016
The gastroenterologist called me late in the afternoon. He essentially discussed with me the basic findings from the PET scan procedure without going into too much detail at all.
Although brief, he did explain that my next steps from here would be to perform a needle biopsy of my liver (likely in multiple places), to determine the exact type of cancer and to be able to provide me with an definitive diagnosis and prognosis.
He also sent me to get some blood tests taken, to check the coagulation levels of my blood. Unfortunately, due to prior angina and heart disorders, I have taken anticoagulants for some time and my blood no longer coagulates normally by itself.
11. Blood Tests for Coagulation – 9th May 2016
I went to St John of God Hospital in Midland and had my blood tests taken.
12. Third visit to the gastroenterologist – 10th May 2016
I went to see the gastroenterologist and we had a very lengthy discussion about my situation. My entire family was there for this appointment, all 5 children and my three daughter in-laws.
The summary of this visit pretty much provided my family and me with the following points for an impending diagnosis and prognosis:
- A biopsy of my liver is required in order to give me absolute confirmed cancer diagnosis and prognosis.
- It is highly likely that my diagnosis will be primary colon cancer with secondary liver Metastases.
- Highly unlikely, but a slim possibility that the cancer is primary to both my liver and my colon.
- Extremely unlikely, but still possible, that neither area is cancerous.
- They do not expect my treatment options to provide a cure and will only be designed to prolong my life expectancy.
- My discussion about my prognosis was cantered around my highly likely diagnosis – primary colon cancer with secondary liver Metastases.
- 3 Month Prognosis – this is the worst-case prognosis and would be relevant if the cancer in my liver has moved into (or obstructed) the liver bile duct. He sees this as unlikely based on the PET scan images and previous tests and scans that have been completed.
- 2-3 Years (with treatment) Prognosis – if the liver cancer has not touched the bile duct and does not spread to other parts of my body in the meantime.
13. Liver Needle Biopsy – 18th May 2016
I was admitted to day surgey at St John of God hospital in Midland to have my liver biopsy performed. I spent nearly 18 hours in the hospital, as I had to be transfused with platelets and plasma to help my blood to coagulate.
The procedure itself was not too bad, it was like a really thin needle being injected into my stomach area, almost like a gun being fired into the area. They took four biopsies, from different parts of my liver.