Pommy doesn’t want to see them. Last night after dinner, he politely declined when I asked him if he wanted to look in the envelope. (Hmmm… maybe right after dinner wasn’t the best time to suggest a thyroid cancer tissue viewing.) I’m not offering to let Jack see them, and he hasn’t asked. He’s only 8 years old, and I think that’s too gross for him.
Since my diagnosis some 14 months ago, I’ve wondered if I should pursue a second opinion of the pathology from the original surgery. Lately I’ve felt with more clarity that I should get a second opinion. With everything lately, I have a clarity of purpose and a decisiveness that has been lacking most of my life, but even more lacking in the last few years.
God has been telling me to wait for the pathology report from this Thursday’s biopsy (technically a fine-needle aspiration or FNA) to decide whether to pursue a second opinion of the original pathology and diagnosis. If the pathology from the FNA says straight papillary carcinoma with no variants (some of the variants of papillary are follicular, Hurthle cell, tall cell, columnar, insular, etc.), I think I’ll skip the second opinion on the original pathology. As a very dear virtual friend of mine recently said via e-mail, “Quite honestly, it seems to me to be more important to know what you have rather than what you had, though I certainly understand the desire to know. On the other hand ...while it is likely that whatever variant may show up in this FNA would probably be the same as your original cancer, it might also not be. I think I would wait to see what the upcoming FNA shows, and take it from there. If this one is also malignant and straight papillary, I would probably let it go at that. Unless you find yourself thinking about it a lot, in which case it's worth the price just to put the matter to rest.” This gal is someone I “met” via the thyroid cancer listserv I’ve been frequenting over the past 16 months. This is where I’ve gotten a lot of my information on thyroid cancer itself, treatment protocols, endocrinologists, and a lot of other guidance, too.
Anyway, I had been thinking about waiting for the biopsy results, and God had been pointing me that direction, too. There are a lot of “on the other hand”s, but the fact remains that I need to deal with what I know, and I know that Irvine Regional Hospital doesn’t have any reputation—good or bad--as far as thyroid cancer pathology, and it can be a very specialized diagnosis. If you don’t know what you’re looking for, you could miss some characteristics that would deem the cancer a variant of straight papillary thyroid carcinoma, and having a variant of papillary thyroid carcinoma sometimes changes the course of treatment. Sometimes it changes the course of treatment dramatically.
The Good Cancer? Um, Not So Much
Papillary thyroid carcinoma is known as a slow-growing, fairly “good cancer,” a misnomer that most people diagnosed with the disease resent. Although they might not mind the phrase “good cancer” when they’re diagnosed (let’s face it—it’s sort of comforting!) most thycans eventually come to dislike it.
It’s ironic to note that lots of us also inadvertently perpetuate that “good cancer” label in the beginning (I sure did) because we don’t want family and friends to worry about us. I remember telling people right after my diagnosis, “Don’t worry—if you’re going to get cancer, this is the one to get” and I also told people what my ENT/otolaryngologist had said to me: ‘If God called me and said “I have to give your mother cancer; which one do you want Me to give her?” this is the one I would give her.’ After I told people about my diagnosis, these well-meaning words definitely seemed to make people feel better about my prognosis, and they made me feel better about the whole thing, too.
But being typically slow-growing and thyca patients typically having a good prognosis does not a good cancer make. I’ve come to see that there really is no such thing as a good cancer. It’s an oxymoron—the terms are mutually exclusive.
Surgeons, endocrinologists (the endocrine specialists who treat and follow thyroid cancer patients after diagnosis and for the rest of their lives) and primary care physicians are wont to pat us thycans on the head after diagnosis and tell us “You’ll be fine [my oncologist for 7 months]. You have the good cancer [my ENT/otolaryngologist, who originally sent me for an ultrasound of the lump on the middle of my neck]. You’ll live 50 more years [the surgeon who performed my original thyroidectomy].”
I don’t harbor any bitterness toward two of the three doctors I quote in the previous paragraph. I do have some residual anger at the oncologist I saw for 7 months, who initially said he could handle my case but in the end said he was out of his depth and referred me to some bozo endocrinologist that my own primary care physician had already warned me “doesn’t know what he’s doing.” I still have a little anger toward this particular doctor because once he made me wait an hour and a half in the waiting room, an additional half-hour in the examination room, and then he came in, let me talk for a minute or two, excused himself for 20 minutes to take another patient’s phone call (I heard him on the phone right outside the exam room door), and then when he came back in to let me finish telling him how bad I was feeling on the lower dose of Synthroid he had prescribed, he promptly fired himself from my case, saying that he thought he could handle my follow-up but that he could not.
This was the same doctor who, during a previous office visit, had patted me on the leg and said “How cute” about the fact that I kept well-organized copies of all my thyca-related medical records in a binder, which I brought with me to all my appointments.
To take ownership of that failed doctor-patient relationship, though, I have to admit that when I took him as my doctor, I had done enough research to know that endocrinologists, not oncologists, typically treat and provide follow-up care for thyroid cancer patients. I had gone to the oncologist out of sheer desperation after my original endocrinologist had not provided adequate or informed care. I was a little rushed trying to find a new endocrinologist, and in my haste, I thought an oncologist might be a better fit. Now, many months later, many doctors’ appointments later, and at least $650 in out-of-pocket expenses for an out-of-network second opinion later, I finally have an endocrinologist who knows as much as I do (possibly even more than I do) about thyroid cancer.
No surprise here: God led me to my new endocrinologist.
Variants of Papillary Carcinoma
Papillary with a follicular variant
Hurthle Cell
Tall Cell
Columnar
Insular
Warthin
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