Scanxiety and other ramblings

I only have to wait two more days until my annual full body PET/CT scan which is part of my routine follow up for stage III melanoma. The photograph above is from the CD images of a prior scan. That's as close to naked pictures as I'm likely to come on my blog unless I take photographs in a museum. Bright and early Friday morning I will be scanned from head to toe and after that I hope that I will be able to officially proclaim myself 3 years clear of cancer. I will probably leave the hospital with the CDs from the scan because I need them for my March appointment at another hospital. I started getting scans last year at a cancer center close to home which is much better than driving an hour in rush hour traffic to the cancer center where my melanoma specialist (surgical oncologist) is. After I started being followed by a medical oncologist in my home town, I was given the option of getting the scans done here.
I probably won't hear the results until next week and at that point I'll pick up the radiologist report to take with me to my appointment in early March. Let me just say that if they do give me the CDs when I leave on Friday, I will try not to look at them on my computer. They are less than meaningless to me. I see all sorts of thing because we have all sorts of organs. That's a good thing. I wouldn't know the difference between a prayer cap and a brain. I think the top of my head, in the image I began this post with, looks like the prayer caps children used to wear to chapel at the Episcopal elementary school I attended as a child. That prayer cap is my brain, I think.
There is much debate amongst melanoma clinics as to the best follow up and they all do it a little differently. Some centers don't have any asymptomatic scans thinking that the tension from scans and false positives, out weight the benefits of catching a recurrence before it becomes symptomatic. My main melanoma doctor has an annual scan as part of his protocol, although this is the first time I've gone a year before getting a scan. The issues I've had since my lymph node dissection make it hard for me to know if I'm symptomatic. I have a new name for my issues. I was looking at my last sheet from my pain doc and noticed the diagnosis was unspecified hereditary and idiopathic peripheral neuropathy and unspecified myalgia and myositis. Odd that hereditary would be used for something that started after my LND and for something that no one in my family has. I'm sure there is something I'm missing. It could be as simple as coding for insurance companies. Since some people have the problems I have after the surgery I had, I'm not sure why they can't just say the issues are following surgery. I've read that some doctors think the percentage of patients who have ongoing side effects following the groin LND are higher than previously reported. I wonder how many others, like me, with ongoing side effects aren't included in the stats for future reports. I signed the forms to be included in a data base of patients my surgical ONC is following but I have no way of knowing if my issues get chalked up to chance or to the surgery. My surgical ONC acknowledged that a percentage of patients do end up with chronic pain after that surgery. However, during appointments with NP in his group, she has been quick to say my problems aren't related to the surgery. Never have figured out what's up with that.Back to the scanning issue, I went through a cycle of three month repeats on scans because I had an imaged mass which eventually went away. The assumption is that mass was connected with my dissection and was a benign thingie, for want of a better word. The scan I had a year ago was the first one which was clear and therefore, I didn't need a repeat for a year. Because this is the longest I've gone without a scan, that may account for my increasing nervousness. The problem for me is that I have had to stop listening to my body. While a cancer patient should be alert to changes and let their doctor know of new symptoms, I have had too many symptoms and they change. I have to tune out pain and I have to have pain management. Much of the past year, I have been telling myself to get on with my life and ignore the issues I have to learn to live with. When something new happens I try to ignore it. I tell myself, you had a clear scan in March of 2007 and everything is fine. I did ask to go ahead and get my 2008 scan sooner rather than later which is why it's scheduled for February 1. Hopefully this scan will be clear and I can start trying to put this all behind me.