Category Archives: Thyroid Cancer

Surgery Scheduled

Rusty went with me to my follow-up appointment with Dr. B on Tuesday.

Dr. B is going to take out the right side of my thyroid on June 7th. That’s a FRIDAY! Which means that Rusty might only have to take off the day of surgery, and maybe no one will have to come and help me.

My friend, A, has been telling me how easy her surgery was (she had the same surgery I am scheduled for), how little pain she had, and how quickly she was able to do her normal activities. Praying for a similar experience.

Dr. B does the “minimally invasive” version of the surgery, which should mean a smaller scar. They will also do initial pathology while I am in surgery, with full pathology completed afterwards. What this means is, there is a possibility they could catch a cancer before they close me up, enabling them to do a complete thyroidectomy without a second surgery. What I have read is that this pathology procedure catches about half of the cancers. The other half would have to come back for a second operation.

I was pleased that Dr. B didn’t think I needed the left lobe out at this point. He said that it looks “almost” normal. I just REALLY don’t want to be thyroid-free if it isn’t necessary.

He said that he didn’t think I will need an endocrinologist going forward, but if he thinks I am going to go around with less than half a thyroid in my neck and NOT see an endo, he has another think coming. :) I talked to S at Bible study last night, and she likes her endo a lot. She suggested I might want to see an endo before having half my thyroid out, but I’m pretty sure that no matter who I see, this is the path in front of me.

Ok, so I feel like we are doing the right thing–taking the best next step.

However, is it ok to say that I am still a little disappointed in my care? Here’s the part where I get whiny. If you would like to skip the rest of this entry, I promise I won’t get my feelings hurt. :)

Whine #1–The pathologist who looked at my FNA samples only made two slides per sample. At some labs, six slides is considered a minimum. Maybe that won’t make a difference, but two just doesn’t seem very thorough.

Whine #2–When Dr. B sent my FNA samples off, he didn’t include ANY clinical history (i.e., sample is from a mixed solid/cystic nodule measuring 2.8x 1.3x 2.9 cm), which is supposed to help the pathologist make a more accurate assessment of what he or she is looking at.

Why I am not going to make a fuss about this: Both nodules are coming OUT in less than a month. So if they’re baddies, they’ll be gone and they can find out for sure after they are out. A Hurthle Cell Lesion has to come out anyway.

A couple more interesting factoids about Hurthle Cell Lesions:

I have read conflicting reports that their malignancy rate is somewhere between 13% and 35%. That’s a pretty big range. I am banking on being under 40, having a lump smaller than 4 cm, and having (possible) Hashimoto’s thyroiditis. (Dr. B says it can’t be diagnosed by biopsy–but that’s not what I’ve read. Yet another reason to go see an Endo. Dr. S, here I come! After all this surgery hullabaloo is over.)

Interestingly, lumps diagnosed as Hurthle Cell Lesions that turn out to be malignant often are not Hurthle Cell Carcinoma. They can be any of the other kinds of Thyroid cancer–Papillary, Follicular, etc.

Enough for now. I am going to try REALLY HARD to quit thinking about this whole thing until my surgery gets here.

Everything you’ve always wanted to know about Hurthle Cells

T minus 2 days until my follow-up appointment with Dr. B. I wanted to compile a summary of what I’ve learned about Hurthle Cells and “Hurthle Cell Lesions,” because I know from experience that although all of this info is really fresh in my mind right now, I will forget it.  And it will be convenient to have it all here in one stash.  I’d like to make a disclaimer ahead of time, just in case this blog ever goes live:  I am not a doctor, or a scientist.  What follows is my understanding based on the research I have done over the past two weeks.  (If two weeks isn’t long enough to make me an expert on Abnormal Cells of the Thyroid, what would be?)

Hurthle Cells are, by definition, abnormal.  From what I have read, there are some theories about why they form, but no one knows for sure. One of the main theories is that they are follicular cells that have transformed due to stress.   They are frequently (some say always) seen in Hashimoto’s thyroiditis, a condition in which the body’s immune system starts attacking the thyroid gland for unknown reasons. They are extra large and full of lots more than normal mitochondria, which gives them a grainy appearance under the microscope.  The mechanism for apoptosis–the process by which abnormal cells know they are abnormal and cause themselves to self-destruct, doesn’t seem to work for Hurthle cells.  Also, unlike most other cells in the thyroid, most Hurthle cells (most sources say around 90%) have lost their ability to take up iodine, which means that RAI isn’t usually effective against Hurthle cell cancers.  On the other hand, theydo produce Thyroglobulin, which makes this a useful marker for recurrence in Hurthle cell cancers, but only if the thyroid is completely removed by surgery and completely nuked by RAI.  Ok, that’s it!

Actually, there is some information about biochemical processes and genetic mutations that I haven’t absorbed yet.  I’m not convinced I need to know all that stuff, since I don’t plan on doing any clinical research on Hurthle Cells.

A “Hurthle Cell Lesion,” what I have, is a group of Hurthle Cells that have all decided to hang out together in one part of the thyroid gland.  If the lesion is composed of more than 75% Hurthle cells, and it’s encapsulated with a distinct border separating it from the rest of the gland, it’s called a “neoplasm,” or tumor.

So here’s the thing.  They can tell from FNA (Fine Needle Aspiration) if the lump/nodule/lesion is composed of mostly Hurthle Cells.  I think they can tell from ultrasound if it’s encapsulated (this is one thing I want to ask about at my appointment on Tuesday).  But they can’t tell if it’s cancer (carcinoma) or not (adenoma) without taking it out.  That’s because most Hurthle cell tumors and lesions just sit there, doing mostly nothing. They aren’t aggressive, they don’t try to proselytize or set up colonies in other parts of the body.  The only way to tell the difference between a benign Hurthle Cell tumor (adenoma) and a malignant one (carcinoma) is to take it out and dissect it, to see if it’s trying to invade the rest of the thyroid through the capsule wall (capsular invasion) or if it’s trying to invade the blood stream (vascular invasion).  If it is doing either (or both) of those things, it’s classified as cancer, or “Hurthle Cell Carcinoma.”  (HCC)

Hurthle Cell Carcinomas tend to occur in people over 50 (not me) with nodules larger than 4 cm (also not me) who do not have inflammation–like Hashimoto’s thyroiditis (also not me, since I DO have inflammation).  So all of those things are WAY in my favor. Yay!  Their prognosis is not as good as for people who have Papillary Thyroid Carcinoma (PTC, also known as “the good cancer,” because of its amazingly high cure rate) or Follicular Thyroid Carcinoma (FTC, only slightly less “good” than PTC), but some people feel that this has more to do with the fact that it usually occurs in an older population than with the actual characteristics of HCC.

Here’s something else.  Hurthle Cell Carcinomas are really, really rare.  So rare that when you go looking for info about Hurthle Cell cancers, because your doctor did a biopsy on your thyroid and found Hurthle Cells, and you are freaking out, trying to figure out what on earth a Hurthle cell is and if you should be worried or not, what you will mostly find is scholarly journal articles.  Maybe a few posts on message boards.

The books about thyroid problems and even about thyroid cancers might have a sentence or two about friendly Hurthle Cells and their malicious carcinoma counterparts.  Maybe even up to a paragraph.  What they will mostly say is that Hurthle Cell Carcinomas are like Follicular Carcinomas, except that they don’t usually take up RAI, and they tend to metastasize more aggressively.

Those bloggers and memoirists (is that even a word?) who write about their thyroid cancer journeys almost all have Papillary Carcinoma (PTC), because 75-80% of thyroid cancers are Papillary.  I might have found one person with a thyroid cancer story whose thyroid cancer was of a Hurthle cell variety.  I’m actually about to go see if I can find that blog again… ETA:  I did find that blog by the guy I thought had HCC, but he didn’t; he had PTC.  But I also found this guy, who has written a very nice blog about his HCC journey.

Ok, so there are probably a few more details that I could cram in here (PTC variants, etc.), but I am not sure I could do them justice.  If you want to read a scholarly article that covers all of this and more in some detail, try this one.  I have found it to be pretty comprehensive, and I’ve actually printed it out to put in my file with my test results and other paperwork.  You can also get lots of useful articles by googling terms like “Hurthle Cell Adenoma,” “Hurthle Cell Lesion,” and “Hurthle Cell Neoplasm.”

One day closer to follow-up

I still have not started weaning Eleanor. Oy. I dread the tears, the sadness. Must start tonight.

I am combating “irrational” anxiety/irritability today. Using my oils. Peaceful Child, Clary Sage. They are helping. I don’t know why this happens every time I approach an appointment or the due date for test results—although from reading other people’s stories, it is pretty normal (although I hate to think of feeling like this for the next four days). Still, I want to have better control of my emotions. Especially since I am working on Silas so much to help him control his emotions. He is very volatile these days. I think he’s turning into a teenager. Double Oy.

I emailed my childbirth class student about our class that is to start on Tuesday night and gave her a heads-up that I will probably be having surgery in the next few weeks.

For some reason Elliot has cut a chunk out of the front of his hair. Now that he’s seven.  Isn’t that kind of thing usually reserved for toddlers?  (Don’t get any ideas, Eleanor!) I never know what that child is going to do. Time for summer buzz cuts.

Ok, I am going to say this, because I think it will help me to get it out. Here are the two things I feel like I cannot deal with: 1—having really bad cancer—anaplastic, or bad metastases—where it looks like I won’t live long. I feel like I cannot leave my children motherless. And 2—having my whole thyroid taken out and finding out that there was no cancer in it after all, and I would be dependent upon a daily medication for the rest of my life for nothing. Either one of those situations would make me FURIOUS. I feel like anything else is manageable. Even metastatic cancer that is controllable for the next few years, I think I could deal with. May God have mercy on me and protect me from those “worst-case” scenarios.

Plans, Questions

I got Eleanor a CD player for her room today, step 1 in my weaning plan. I’ll work on that…sometime soon. :) I have two different things to try. One is a “Toddler Sleepy Time” Hypnobabies track. The other is just plain, old-fashioned lullabies.

I found out today that M, a friend of mine,has been diagnosed with melanoma and is going to have some kind of surgery related to that. Yet another reminder that I am not the only one with trouble in my life.

I called today and got my follow-up appointment changed to Tuesday, May 7th. That way, I don’t have to wait as long (yay!) and Rusty will be able to go with me. I want him there since we will be talking about surgical stuff.

I looked up oils that are supposed to be good for Hashimoto’s. Looks like lemongrass is #1, and also myrrh and frankincense. So I made myself up a little blend. I am starting to like this blending thing. I think it’s so interesting that I have been so drawn to lemongrass already—I was just telling K the other day that it was one of my favorites. There are many people who think that our noses will usually lead us to what we need most.

I’ve also been thinking about what else I can do to decrease the inflammation in my body. Of course, the number one thing probably needs to be cutting out sugar. *sigh* I am NO good at that. But I have known for a long time that I needed to do it. I am able to do it for a while, and then I fall off the wagon and find it SO hard to get back on. But this is now not just a matter of diabetes prevention (which should be enough), but also taking care of my thyroid. Especially if I’m only going to have half of one.

One thing I really don’t want to think about is Hurthle Cell Carcinoma. It was easier to contemplate Papillary Carcinoma cheerfully because it seemed SO curable—more like something that would change my summer than something that would change my life. Having HCC is more like having…cancer. It is harder to treat, usually resistant to RAI, and tends to metastasize to places like bone, lung, and “central nervous system.” Yuck. The good news is that it seems much more common in people older than me (and more aggressive for them, too). I hope it is just a bunch of Hurthle cells hanging out in my thyroid, just for fun. They are more the Rook-playing, movie watching crowd than the kind who go out knocking down mailboxes with baseball bats and forking people’s yards.

So should I ask Dr. B for my complete report? I feel like I already know what I need to. I think I would obsess more over the details. And STILL I am tempted to ask. But I am not going to, at least not until my appointment. I am working on my list of questions, though:
1—Which nodule had which diagnosis?
2—Where will the excised half of my thyroid be dissected and analyzed?
3—Why didn’t we biopsy at least the largest nodule in the left side of my thyroid? Should we do that before surgery, in case it turns out that I really do need to have my left lobe removed too?
4—If I need RAI, do they do that at our local hospital?
5—How long is recovery from surgery?
More questions to follow, I am sure.

Just because all the bloggers have cancer, it doesn’t mean you do, too.

It’s funny. I am mentally moving away from assuming that I have cancer. I’ve been thinking a lot about why I have assumed that I do, and I think it’s because I have read several stories—both in book and blog form—of people who even after their biopsy were not really worried, because they knew that only 5% of lumps are cancerous. And then they turned out to have cancer. There need to be some stories—lots more stories—of the scenario that happens far more often—that people get their biopsy results back and find out that the lump or lumps are benign. But that story line isn’t dramatic enough to blog or write a memoir about, so it isn’t really out there. Maybe if my biopsy comes back negative for cancer, I can help fill that need.

First Real-Time Entry

(Up until now, I’ve been summing up what’s happened without dates.  From here on out it’s live, on-the-scene reporting of the thoughts in my head.  Exciting, I know.  From this point until May 4 –the day I copied all these older entries into the blog–I have edited the time stamps to match the dates on which I wrote each entry, so that they will appear in order.)

It’s Saturday. Such a beautiful, amazing Saturday. We ran to Lowe’s and got some mulch, composted cow manure—the good stuff, right?—and of course, plants. When we pulled up, Eleanor actually said, “Is this more plants, Daddy?” Smart girl.

I actually did something today—I mean outside of the bare minimum house maintenance and cooking I’ve been up to lately. I weeded my porch garden. It was nice to clear out the beds, and wonderful to discover lots of earthworms in there. I’m about to go out there and plant some garlic.

I also caught up this journal thing. It’s funny, because I might find out next week (I almost typed Monday, and then I stopped myself. But surely next week, right?) that I don’t have cancer at all and I have wasted all of this time obsessing and journaling and whatnot. Except that I am really glad that I have learned about thyroid cancer. It is, after all, the fastest growing cancer today.

I am trying to hold back from assuming I have cancer. Wouldn’t that be awesome, if I didn’t? But I admit I do kind of assume it. I also have a lot of random thoughts bopping around in my head. Here are some of them:

What if I am dependent upon artificial thyroid hormones, and the economy collapses, and the drug manufacturers quit making it? I know that’s far out. But it has occurred to me.

I am dreading weaning Eleanor. She really likes to nurse. I have already cut out all breastfeeding except for first thing in the morning, nap time, and bedtime. I contemplated preemptively starting to wean her, but decided that I wouldn’t make a real effort unless I got a cancer diagnosis. However, once a diagnosis is made, I am going to work determinedly on it, to get it done as quickly as can be humanely done. The reason is that besides the fact that I can’t let my baby have radioactive breast milk and would have to be isolated from her for at least 10 days if I had RAI treatment, iodine collects in breast milk, and then the last thing I need is radioactive material concentrated for a long time in my breasts. Having RAI would already increase my odds of breast cancer. I don’t intend to help it along.

Also, I keep running over the list of the times I’ve had x-ray radiation on my neck. What I’ve read indicates that diagnostic x-rays don’t deliver enough to cause thyroid cancer, but does that mean just one diagnostic x-ray? How many? At least one study suggests that there may be a link between dental x-rays and thyroid cancer. So here’s the run down, as I remember it:

  • As a newborn, my head was x-rayed a few times to make sure my skull sutures hadn’t already joined. I wonder if Dad remembers how many times.
  • I’ve had several sets of dental x-rays, from child hood up until…the last time I went to the dentist. I can’t remember for which of these, if any, my thyroid was protected by a lead shield.
  • I had scoliosis when I was in junior high school. I know of at least two x-rays of my spine, including my neck area, were done at that time. The irony is that I remember my doctor shielded my breasts at that time. However, since he was going for a image of my vertebrae, shielding my neck was not what he wanted to do.
  • I was in a car wreck with a minor head injury when I was in my early twenties. I know I had at least one x-ray at that time.
  • Dr. R, my chiropractor did x-rays when I first became his patient. I remember discussing whether it was a good idea, since I have always been against unnecessary radiation at any time. He told me that the radiation was minimal and that the x-rays were important to my treatment. I insisted he shield my ovaries, saying “All the eggs I’ll ever have are in there.” Again, getting a shot of my neck vertebrae was part of what he was trying to do, so shielding my thyroid wouldn’t have made sense.

I think that’s all the x-rays of my head and/or neck area that I’ve had. One thing I’ve been thinking about is that I have no idea if my children have had their necks shielded when they’ve had dental x-rays. You had better believe that I will be super vigilant about that from now on.

I guess that’s what I’m most thankful for in all of this right now. Whether I have cancer or not, I have learned a lot about thyroid cancer. I have become aware. And as the continuum concept folks are fond of saying, “Once your consciousness has been raised, it cannot be lowered.”

Getting the Family Up to Speed

All this time, I hadn’t really talked to Rusty about what a cancer diagnosis would mean in terms of what would happen next. I had avoided talking about my situation too much, because I knew it would stress him out. But I was starting to feel the need to let him know what we could be looking at over the next few months.

So Wednesday afternoon, while the boys were playing down the street with a friend, I sat in the grass while he worked in the flower beds, and I filled him in a little—surgery, radioactive iodine, quarantine. He took it all in, a little incredulous about the radioactive mommy part. But I think he was also relieved that chemo would not be on the agenda.

I told him what I had already been saying—I wasn’t that scared of cancer. But I was not looking forward to the upheaval it would cause for the family.

“Oh, we’ll be fine,” was his response to that. He was in his rock-solid-supporter role just then. I knew it wouldn’t be fair to expect him to always be so confident and to never need reassurance himself, but it was nice to hear at that moment.

After Bible study that night, T, a friend who I hadn’t caught up with lately asked, “So how’s everything in your family?” I just looked at him a minute. I could not say, “Oh, it’s fine,” knowing it was possible I would be announcing a cancer diagnosis the following week.

“I had a biopsy on my thyroid yesterday,” I finally answered. He nodded. I knew that there was a lot of health-related drama going on in his family, too. He told me he would be praying for me. M, his wife walked up. I told her about it, too. “Oh, I knew you had had a test of some kind,” she said, nodding. So I knew that at least some people outside the circle I had told knew I had something going on. She, too, offered to pray for me.

Thursday I went back to ladies’ Bible study. Afterward, I talked with Y a little more about my situation, telling her what Dr. B had said about probably having a thyroidectomy sometime. I asked her about her experience. She said that it had mostly been no big deal, except that her voice was slightly damaged afterwards and had required a few months to recover. I knew that vocal cord damage was a possibility, as was injury to the parathyroid glands that controlled the body’s calcium levels. But that seemed too far out of my control to dwell on.

Yvette had offered me the loan of a couple of thyroid books. They were sitting on the console between me and Silas as we drove home.

“Why do you have these thyroid books?” he asked.

“Mrs. Y loaned them to me,” I said, trying to sound casual. Rusty and I had not discussed the situation with our kids. We seemed to have an unspoken agreement that it was better not to worry them needlessly, especially since they had learned all too well the past few years about the transience of life. Within a three year span, he had lost two grandparents and three great-grandparents.

“Does your doctor think you might have cancer?” he asked.

Doesn’t miss anything, I thought. Should have been more careful. “Did you hear me talking to Mrs. Y?” I asked.

“Yeah, I have ears like a fox,” he said. The boys had been playing video games, and I had honestly forgotten that they were within earshot while I was talking with Y. I replayed the conversation in my head, assessing what he had most likely heard. The good news was that I had reiterated my “I am not scared of it being cancer” mantra, as well as quoting that there was about a 90% survival rate for 30 years, joking that I didn’t even think the general population had odds that good.

“Well, It’s nothing to be very worried about,” I said.

“Yeah, I heard you talking about that. It doesn’t sound too bad.”

I filled him in a little on what would happen if I did get a cancer diagnosis, answering his questions about what a thyroid did and how I could live if it was taken out. He seemed to think that having a radioactive mom would be really cool. Something to brag to his friends about for sure. I was relieved. I could tell he wasn’t scared.

Obsessed as I was, I perused Y’s books that afternoon. Both were more generally about thyroid disorders, but they each had a chapter on thyroid nodules and cancer. One of them was particularly interesting to me, because it had been written in the late 90’s. It mentioned that about 15,000 people were diagnosed with thyroid cancer each year. I had recently read somewhere else that the number was now more like 35,000, and that thyroid cancer was the fastest growing variety, in terms of new cases each year.

I went on the Thyca (Thyroid Cancer Survivors) website to check the actual figure. I was floored. In 2013, the projection was that there would be over 60,000 new cases reported, a 6% increase from 2012. I told myself that even if I don’t have cancer, I am going to start promoting thyroid cancer awareness, putting a ribbon on my car, wearing a “check your neck” t-shirt, posting on social media. Thyroid cancer might be the rarest kind, but at this rate, it won’t be for long. This is something people needed to hear about! I am going to wait until I have an answer one way or another, however.