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I figured it was about time I posted about my current situation with my cancer follow-ups. I have been seeing my endocrinologist every 6 months since my second surgery, which was November 2007. Up until about four years ago, my thyroid levels have shown little to no cancer evident. Four years ago, my numbers began to creep up. I went from below 0.5 to 1.9, to ~3, to 4.3, to 4.5. I just had blood work done yesterday, so I don't know my levels just yet. I'll update again with those along with the next steps that my endocrinologist wants to take.
My endocrinologist is amazing. Dr. H is straightforward and very proactive with my treatment. She has helped me become more independent and to take control of my treatment. She welcomes questions and answers them. I really appreciate her and all she has done for me throughout my cancer journey.
She told me she's ambivalent about biopsying and "cherry-picking," as she calls it. What she calls "cherry-picking" is going through my neck to biopsy and (eventually) surgically remove any lymph nodes that show any level of cancer, no matter how small. My numbers are not high enough just yet. The "magic number" is a thyroglobulin of 10. Dr. H told me she feels comfortable "sitting" on me and waiting. This has been her decision the last three years, so I'm not completely shocked. This time around, though, she is unsure if she wants to do a stimulated thyroglobulin test. A stimulated thyroglobulin means that the patient receives shots of thyrogen (right above the butt - Yay!) and at the end of the week, gets more blood work done to compare to the initial unstimulated thyroglobulin. If the numbers are higher, it means there is thyroid cancer still in the body. This test is much more sensitive in finding any leftover or recurrent cancer cells. When my numbers come back from this test and if they are higher than before, then she will do a stimulated thyroglobulin test.
I jokingly call it "cancer limbo." It kind of is, really. You're just sitting around waiting for something to happen. If it doesn't happen, you're happy (of course). The problem is the foreboding feeling. It's always there, in the back of your mind.
"Will today be it?"
"Where is it, and where is it going?"
"Why can't they just find it and get it out?"
"What's taking this so long?"
I just want it over.
These are just a few questions and thoughts that run through my head. I know other cancer patients and survivors can relate. The feeling that this appointment, this scan, this ultrasound, this blood test -- could be what shakes our current "normalcy" and turns it upside down once more. This has been my thought process since my last (second) surgery in 2007. I had 22 lymph nodes removed from the left side of my neck, two of which were malignant metastatic papillary thyroid cancer.
I've always told people that I'm just waiting for the ball to drop. The response I get more often than not is, "Don't jinx it! You're asking for it to happen."
Am I, though? Am I being dark and depressing, or am I being realistic? What's wrong with waiting for something to happen? Of course I'll be happy if my numbers never increase to the "magic number." The last time I felt like this was over was when my endocrinologist gave me the thumbs up after my nuclear scan post-radioactive iodine treatment. She said I was cancer-free and in the clear. All that needed to happen was get low numbers in my blood work. Guess what? They were not low enough.
Call me crazy, but I do not feel it is wrong to be ready for either event. If the ball drops, fine. I'll get through it just like the last two times. If it doesn't, fine. I will continue to live my life as best I can, just as I have in the 9 years since my diagnosis.
Feel free to leave comments with your opinions. Do you agree? Disagree? Do you experience the same roller coaster ride? Let me know!
As always, friends, I wish you love, happiness and -- most importantly -- good health.
Dori
My daughter has had four surgeries, virtually no lymph nodes left in her neck, and has been in a watch and wait pattern for two years. Her numbers are much higher than yours, but she has numerous ultrasounds, biopsies, CT scans and one PET. Nothing shows except the elevated TG. Roller coaster ride is kind of an understatement, more like pergatory. But she is asymtomatic in all other ways, feels fine, and just kind of keeps living. She may never be clear, but right now, stable is as good as it gets.
I understand the pergatory statement. I'm sorry that's happening to your daughter. It does suck. I'm so glad she is living her life and is asymptomatic. How old is she, may I ask? What kinds of things does she like to do?
Love and blessings to you both!
My daughter is 22. She just graduated college in May, on time, even with all the surgeries and RAI. She really didn't miss a beat and was diagnosed at 17. Not sure what she wants to do in life yet. She is going to Europe for six weeks since she could never study abroad with all the medical crap. A real free spirit. She doesn't really think about her cancer. It's in her nature not to. She figured her doctors will take care of her.
Good for her! Her story basically aligns with mine. Diagnosed at 17, graduated on time in May 2010. I give her a lot of credit. It's wonderful that she's going abroad! Tell her Congratulations for me!