Actually, I quickly tired of waiting and decided to follow a friend’s very wise advice. “Please don’t be afraid to advocate for yourself,” she told me. “You will have to wait at times but there is also a place for you to pick up the phone and ask for results, action, a timeline.”
On Monday morning, I called Dr. F’s office to find out when the CT scan of my chest would happen. October 2nd, I was told! Are you kidding? Two more weeks of waiting just to get a scan done and then more waiting before I’d finally get to the cancer clinic? I don’t think so! After all, when I had my abdominal ultrasound and the radiologist thought he saw cancer, I had a CT scan done within half an hour and got the results the following morning!
I immediately picked up the phone again and called the Cross Cancer Institute. I soon learned that I didn’t even need the CT scan and that a whole series of appointments had already been set up for me at the Cross! Phew! Open ended waiting was stressful and I was becoming increasingly anxious but now that I know what comes next, I’m much more at peace again.
When next Wednesday arrives, this round of waiting will be over and life will suddenly become quite hectic as we’ll be at the Cross three days in a row! Fortunately, our youngest son lives in Edmonton and we’ll be able to stay with him. We start with a new patient orientation session on Wednesday morning followed by a some very specific tests to determine the extent to which my cancer has spread. I will be injected with two different radioactive materials, one on Wednesday and the other on Thursday. These substances bind themselves to cancerous deposits anywhere in the body and show up on scans that will be done 24 hours after each injection. “Timing is everything,” explained the nurse who called me. “Otherwise, it’s like looking for a white Cadillac in a snowstorm!”
I will be radioactive for a period of time after these tests so I hope I don’t end up glowing in the dark! I’m supposed to avoid non-essential contact with children and pregnant women for 48 hours and I need to remember to ask for a travel letter as I could set off very sensitive radiation detectors in airports for up to three months afterward! I’m not sure if we’ll be going anywhere during that time but we’re still hoping to make a quick trip out to Vancouver before long if my treatment schedule allows it.
I will also undergo a number of other lab tests next week to look at hormone levels and gather other pertinent information. In addition, I’ll have an echocardiogram to look at how well my heart is functioning. Apparently, neuroendocrine tumours can produce an abundance of hormones that can have a number of negative effects including high blood pressure.
On October 2nd, our 37th wedding anniversary, we’ll return to the Cross for a consultation where we’ll learn the results of next week’s tests and discuss a treatment plan. At this point, I’m not trying to guess what’s going to happen but I hope we come away from that meeting with reason to celebrate.
In the meantime, it’s time to learn more about this cancer of mine so that I can ask the right questions and discuss the situation with some level of intelligence. When I talked to the nurse from the Cross, she was actually pleased that I hadn’t started searching the web for information yet. So much of what you’ll find there is inaccurate, she told me. She also suggested that I stay away from most American sites as treatment protocols there are driven by insurance companies and are quite different from the approach taken here and in Europe. I’ve read through the information that she sent me and will start exploring the recommended websites tomorrow. In case you’re interested, I’ll post them below.
So what do I know about neuroendocrine cancer so far?
- it’s very rare
- it can appear in many different parts of the body including the bronchus, esophagus, lungs, liver, stomach, large and/or small intestine, and even the appendix
- it’s usually slow growing
- it often goes undiagnosed for a long period of time because the symptoms are usually vague and are often similar to those caused by other everyday health problems
In other words, I might have had cancer for a long time already without even knowing it! Isn’t that a creepy thought!