The last three weeks have been filled with doctor’s appointments, trips to the lab and test after test after test as we and our medical team try to understand what we are dealing with.
There are a number of tests used to build a picture of this kind of cancer, and that’s really what I’ve learned they do – together, they are pieces of a puzzle. Each one in isolation tells us something, but on its own is usually not very useful for understanding the whole thing. This is sometimes frustrating – I want answers! Now! What is going on inside my body? What do we do about it? It is hard to be patient. It has become important to me to remember that each result we get, whether ‘good’ news or ‘bad’ news is really just one piece, best understood in the context of the whole, which we are slowly but steadily forming.
So, with all that being said, here are some of the puzzle pieces we’ve been finding.
Chromogranin A – this is a blood test that detects hormones that may be secreted by the tumours, and it was the first test we had done. It came back normal – good news!
5HIAA – This is another test that looks for hormones produced by the tumours, and it also came back normal!
Together, these two pieces seem to indicate that the tumours I have/had are not producing enough hormone to be absorbed into my body. This means I probably won’t need drug therapy to regulate hormones being produced by tumours. A good, encouraging pair of pieces to have.
CT Scan – I had two abdominal/pelvic CT scans done – one with oral contrast dye and one without – to look for large tumours (the CT is not very sensitive and would only pick up big tumours). Thankfully, this scan didn’t find anything.
OctreoScan – This scan has been the standard for identifying neuroendocrine tumours. It uses a synthetic hormone mixed with radioactive isotopes to find and ‘light up’ fast growing cells and hormonally active tumours. Based on my symptoms, we expected this scan to find tumours in my colon, which it did not. There is however, a suspicious area of uptake in my liver. More testing is needed to confirm whether or not the cancer has spread to my liver.
Gallium 68 Dotatate PET/CT Scan – This test is relatively new. It has replaced the OctreoScan as the standard test for NET carcinoids in Europe, and is only available in clinical trials in the USA. We were very excited to learn it is available in Pretoria, here in South Africa, but disappointed when we were told they could not schedule us in before June. We were looking at clinical trial options in North America and were prepared to potentially travel to Singapore to have the test done, if necessary. It is significantly more sensitive than the OctreoScan, finding more tumours at earlier stages, and is actually an easier test to undergo (it takes place over one day, rather than two).
On Wednesday morning (a week before we were to leave), we got a phone call saying that they had a cancellation and if we could be there for 10AM Thursday, I could have the scan. We put all packing for North America on an immediate halt and began to plan a trip to Pretoria (Samuel can now sing “We are marching to Pretoria” surprisingly well, since that became the packing anthem!). Coleman and I left the kids with the grandparents and flew to Johannesburg Wednesday night. We stayed in the airport hotel and took the train to Pretoria Thursday morning. (Coleman says his slightly manic / worried expression in the photo above means, “This is no time for selfies, we have to catch this train!”)
Steve Biko Academic Hospital is enormous. It is the largest hospital complex I’ve ever seen. The staff at the Nuclear Medicine department were wonderful. We had moments of inspiring and encouraging conversations with other patients awaiting various tests, including one man who has NET cancer and was there for the same test I was.
After a long day of waiting, we finally had the test done and walked out with the image discs in our hands. We took the train back to Johannesburg, flew back to Durban, and drove home. It will be several days before we have the report and know the results of the test, but we were able to upload the images to our doctors overseas as soon as we got home.
Getting this test was miraculous. We are so grateful for the opportunity God gave us, to have the appointment, and for the privileges we have that meant we could book last minute plane tickets and get there. Thank you for all of your prayers and love. We are very, very grateful, and are looking forward to this seeing this piece of the puzzle and what it will show us.