Cancer Free or Not Cancer Free?To this question, I have half an answer. Or even slightly more than half, but nothing definite. Basically the most annoying maybe ever. I feel mostly better but a lot frustrated and a dash fearful still. It would be really nice to know for sure. My scan is negative and my doctor felt confident enough to tell me that (a week later, following begging and tears). However, my thyroglobulin level is 2.5, which is "low", but not low enough to get an all-clear yet. A 2.0 or below is usually the strong indicator of no recurrence, so the best my doctor could do was say "so far so good" and he'd get back to me when he had written confirmation.
The frustration I've been experiencing, for those of you not playing along, is largely stemming from the fact that to even get HALF of my results has been like trying to stuff a cat in a dress (notice how few kitty-outfits are sold in pet stores). I have been put off for a week-and-a-half now, mostly by callous answering machines. After having been told I would get my results Wednesday, Thursday, Friday and Monday (yesterday), I finally had it. I had already left three new messages for my doctor's nurse, so I tried calling the operator (even though the answering service makes it clear this is for doctors and hospitals only). The first operator immediately transferred me BACK to my doctor's nurse's answering machine (every bit as confusing as it sounds).
So I called again, this time on the verge of tears and the second operator took pity on me when I begged her not to put me through to a machine. She told me my nurse was right there, talking to a patient, and she would put me on with her as soon as they were done. And unlike all the other people making promises to me, she kept her word. After ten more minutes I talked to the nurse who told me my scan was clear, and everything looked good, but the doctor would need to confirm and she would have him call me before the end of the day. A few hours later he did call and told me basically the same thing, but in a little more detail. No one has been very clear on WHY my results have been so difficult to get a hold of. The doctor expressed his own confusion, saying something about how they had been sent to an outside lab and he wasn't sure why. So far the excuses have been: We don't have them yet; The lab is broken; You should have called; Oh, you did call? Well, I was out of the office; They can only send three or four tests at a time; I need to check with the doctor; and I'm waiting for confirmation. Over six days....
Anyway, I called again today, hoping to shut this thing down once and for all, but no banana. No return call either. I am beginning to wonder if I will ever get an all clear.
And even though I will only be "cancer-free" for a year, this period of relief has become more and more desirable to me with every trip to the hospital and needle injection and unanswered phone call. A whole year of pseudo-normalcy and health? I'll take it. While a recurrence would certainly not be the end of the world, I very much dread undergoing the whole surgery-radiation-hypothyroidism process again.
REVISION: I am still rather confused about calculating chance of recurrence and what constitutes a good thyroglobulin level. Hopefully I will have a doctor explain this to me soon so I can relay the information to you.
From what I have read, I have anywhere from a 30%-80% chance of recurrence. Most articles I have read predict the lower end of the spectrum, saying that low risk thyca patients (young, white, female, no metastases) have a 10% chance of recurrence and high risk patients (older than 45, larger tumors, metastases, male, "certain other demographics"). Since my cancer had already metastasized to my lymph nodes by the time of my surgery, I am considered high risk.
Here's where I get confused. A few articles say that higher risk candidates have an 80% chance of recurrence. The first that I read, a 2005 article on thyroglobulin tests, states:
'We were surprised to find that even with relatively low thyroglobulin levels, and even when there is no sign of a tumor, about 80 percent of patients had a recurrence of their cancer within three to five years,' says first author Richard T. Kloos, associate professor of internal medicine and of radiology.The strange thing about this article is how there are no qualifications to this argument. To say all patients have an 80% chance of recurrence seems unlikely, since doctors only take special measures to annually monitor those in the high risk category.
Another study, discussed in a 2011 article of Clinical Thyroidology, says that I am at an 80% risk not because of my metastases as much as my thyroglobulin level:
In the second study, 107 patients with thyroid cancer treated at The Ohio State University were studied. All patients underwent thyroidectomy followed by radioiodine treatment. All had thyroglobulin stimulation testing with rhTSH and were divided into the following groups: Group 1 - thyroglobulin ≤0.5ng/ml, Group 2 – thyroglobulin 0.6-2.0 ng/ml and Group 3 - thyroglobulin > 2.0 ng/ml. Thyroid cancer recurrence rates were as follows: Group 1 - 3%, Group 2 - 11% and Group 3 – 80%. This study demonstrated that a rhTSH stimulated thyroglobulin threshold of 2.5 ng/ml or greater indicated a high risk of thyroid cancer recurrence.Again, I do not have the full story on my cancer testing yet, but when I spoke with my doctor he said that a 2.5 thyroglobulin level was low. Not low enough, but still low. And yet the study above suggests that this is the highest level and highest risk.
I am obviously going to have to talk to someone with a medical degree to get this sorted out.
Tomorrow I am going with my mom to her biopsy appointment. I will do my best to document her experience; it will be interesting to get a second perspective on the experience.
Now I'm off to harass my doctor with more harrowing phone messages. I leave you with some thoughts on the current quality of healthcare: