Category Archives: Thyroid Cancer

Out of the Woodwork

It’s really amazing how many people have problems with their thyroid.  It reminds me a lot of when I was trying to have my children and had multiple miscarriages along the way.  It was astonishing to me how many people came up to me and said, “You know, that happened to me, too.”  I’m finding the same thing happening now; it seems like everyone knows someone who had thyroid cancer.  Plus I know a LOT of people in person that have other thyroid problems.

For example, while I was on the phone with my friend K talking about my diagnosis and what I was going to do next, another friend of hers texted her and said that she’d been diagnosed with a large thyroid nodule and her doctor wanted to take it out because there was a good chance it was cancer.  So now I have connected with her–my new friend R.

My Dad’s cousin Eugene is having a thyroid lobectomy this week for thyroid cancer.

My Dad emailed me to tell me that my Great Aunt “Teen” (Christine) had surgery for thyroid cancer a LONG time ago.  It’s funny, because growing up I knew she’d had surgery on her throat and that her voice was affected.  I might have known it was for cancer, but I had forgotten all about that until Dad reminded me.

And it seems like the list just keeps going.  Mostly the moms or aunts of my friends, it seems.

So I’m in good company.

I decided yesterday to go “live” with my blog.  So I guess I’m yet another one of those bloggers I wrote about a few weeks ago who has papillary cancer like everyone else.  Sorry Hurthle Cell, Follicular, Medullary, and Anaplastic Carcinoma patients out there.  Who knows if anyone will read it anyway.  As of right now, I have NO intention of sharing the blog with my friends.  I’m doing this mostly as a journal, but also in case I can be of ANY encouragement to someone else out there who’s found themselves on a thyroid journey of their own.

Oh, and guess what? Eleanor is weaned.  Saturday was the day after my diagnosis.  She woke up early, and Rusty, still taking care of me in my post-surgical and post-diagnosis state, got up with her and fed her breakfast.  When I got up a couple of hours later, she was watching TV, but she immediately ran over and asked if she could nurse.  I said, “Let me go get some coffee.”  I kept putting her off that way to see how far I could push it (“Let me eat some breakfast…”).

Then I pulled out the big guns.  People, I got out my pedicure supplies.  I didn’t say anything to her, I just started painting my toenails.  Immediately, Eleanor propped her little tootsies up on the table and said, “I want to paint MY toenails!”  I asked her if she was ready to stop nursing and she said, “Yes!”  So I painted her toenails purple, and we went and showed Daddy, who knew full well what this meant.  He went right along with me and told her how pretty her toenails were and how she looked like such a big girl.  We went to the store and got cupcakes and a Dora balloon, and party hats and paper lanterns and a present.  We came home and had a “no more nursing” party, and sang, “No more nursing for you, No more nursing for you, You’re a Big Girl now Eleanor, No more nursing for you!” and had a grand old time.  And we are DONE.

She has asked a few times since then to nurse but is easily put off when I suggest taking her balloon and presents back to the store.

Being done is good.  I am hoping I will not need RAI, but I need to do some research on how long after weaning it’s safe.  I do not want radioactive iodine accumulating in any traces of milk my body might still be making.

There is so much more I want to talk about, but there are other days ahead, Lord willing, and this entry is already long.

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It’s the good kind….Really!

“The Good Kind” is a catch phrase/byword in the thyroid cancer world.  Thyroid cancer (thyca) in general and Papillary Thyroid Carcinoma (PTC–which makes up about 75% of thyca) specifically are known as “The good kind” of cancer or, “if you’re going to have cancer, that’s the kind of cancer to have.”  There’s a reason for that….the survival rate for PTC is better than just about any other kind of cancer out there.  Some question whether it should really even count as cancer.

I know that some people hate this generally optimistic feeling about thyroid cancer, mostly because they feel that it minimizes their fears and the difficulties that treatment involves for them personally.  Also, there are some types of thyca that are not nearly as easy to treat as PTC and whose outlooks are not nearly as favorable.

So today I found out I had Papillary Thyroid Carcinoma, not Hurthle Cell Carcinoma, as I feared. And my first reaction when I saw that lab report was relief.  Because I know that PTC actually is “the good kind.”  Because HCC was really a scary thought for me.

Wanna know the crazy part?  The PTC was in that ugly looking nodule with the calcifications, the one that I originally “knew” had to be cancer.  The one that tested benign on FNA and frozen section.  The Hurthle cell lesion was just a big lump in a lumpy gland.

I guess that’s my only real whine at this point.  Why couldn’t we have just found it on the first biopsy and gotten all the surgery over to begin with?

Possible reasons:

  • I needed, for some reason, to not go around knowing I had cancer in my body for that period of time from FNA to first surgery–It was better to find out after it was out.
  • I needed time to work on a gentle weaning process for Eleanor.  More on that later…
  • I needed to be really afraid of having HCC so that PTC wouldn’t seem bad at all to me.
  • Something I haven’t even thought of yet.

Whatever the reason, I am going to trust my journey because I trust my Guide.  He knows what I need and what I can handle.

He answered my prayer to be spared HCC. He let me have a big benign lump in a visible place so that I could find the cancer that was hidden farther back in the gland.

I embrace the label “The Good Kind,” because this is NOT my mother’s cancer.

Ok, so here are the details:

  • PTC Nodule was 1.2 cm.
  • It was completely encapsulated.
  • It had no vascular invasion.
  • It was widely invasive of the capsule. (So glad it is O-U-T!)
  • It looks to be unifocal and confined to the thyroid. (That would make it stage I. This could change after the findings of the 2nd surgery.)
  • Also, I have Hashimoto’s Thyroiditis (or at least I do for the next few weeks.  I think surgery will “cure” me!)

Here’s the plan:

  • Have a great VBS.
  • Go to camp and have a GREAT time!
  • 7/11, have the rest of my thyroid removed.
  • recover
  • meet with the nuclear medicine doctor and talk about whether or not I need RAI.

Somewhere in that plan I need to include finishing Eleanor’s weaning.  Rusty got up with her this morning (bright and early) and fed her some breakfast before I made an appearance.  She has asked me to nurse a couple of times, but I have been able to put her off so far.  We’re going to see how far we can go with this.  I may go get my nail polish in a minute and work on my own toenails, and see if she wants me to do hers.

Macrophages

Ok, so I couldn’t leave well enough alone.  I HAD to keep on researching.

Let me back up.  Here is the word-for-word write up of FNA of the the larger nodule on the isthmus of my thyroid:

Hurthle cell lesion–see comment

COMMENT:

The specimen consists of numerous Hurthle cells and fragments of Hurthle cell epithelium, with a population of macrophages.  The differential diagnosis includes Hurthle cell change in a background of thyroiditis or a hyperplastic colloid nodule versus a Hurthle cell neoplasm.  Clinical correlation recommended and follow up as indicated.

So that actually didn’t sound too bad, especially the idea that it could be “Hurthle cell change in a background of thyroiditis.”

But I couldn’t leave well enough alone.  I wanted to know what, if any, meaning the macrophages had.  I had some vague memory that macrophages were immune cells, maybe a type of white blood cell?  I knew that certain cell types like lymphocytes tended to point towards a benign nodule.  So I went looking, using “macrophage” as a term in combination with “Hurthle cell lesion,” “Hurthle cell adenoma,” “Hurthle cell FNA,” etc. ad nauseum.

I found one case study in which two different patients had similar FNA samples that included Hurthle Cells and macrophages.  One ended up being a Hurthle Cell Adenoma (benign) and the other a Hurthle Cell Carcinoma (malignant).  So I know that macrophages could be present in either.

Then, for whatever reason, I searched for “macrophage thyroid cancer.”  From that I learned that macrophages are generally present in tumors (benign or malignant) and that a certain type of macrophage, known as a Tumor-Associated-Macrophages can sometimes make up up to 50% of a tumor, and that their actions tends to help the tumor grow and spread.

I found this article.  The title alone almost sent me into a panic attack.

I had a little freak out moment, feeling SURE that the “population of macrophages” meant my nodule is FOR SURE cancer. I have reeled it in a bit, and I’m now back to the recognition that “tumor-associated” doesn’t have to mean “cancer-associated,” and that, once again, I cannot find out if my nodule is cancer or not by doing research.  Still, I am not comforted.

I’ve also learned that “hemosiderin-laden” macrophages are usually associated with benign tumors; they “digest” red blood cells when a colloid nodule (always or almost always benign, from what I understand) undergoes “hemorrhagic decay”.  My FNA report didn’t say whether the macrophages were “hemosiderin-laden” or not.  So I really have no idea where I stand.

Before I made my macrophage discovery, I sent Dr. B an email to ask how long surgery should take (45 minutes to an hour)  and where pathology would be done (right here in our local hospital).  I have now looked up the pathologists on staff and am considering sending them gift baskets the day before my surgery, to make sure they do top-notch work for me.

Also, my sweet, sweet Aunt Sharon has said that if I need her, she can come for a few days.  We are going to play it by ear to see how things go.  And UK is in Uganda, preaching.  Love it.

Ok, I REALLY, REALLY need to forget all about this until maybe a few days before June 7th!  Although, I think it would be good to work on some things that would be helpful to accomplish before surgery. I am going to put my “folder” (containing my lab reports, surgery instructions, etc.)  somewhere out-of-the-way.

Should I Google “Hashimoto’s macrophage,” just to make myself feel better?  You see how sick I am?

ETA:  I did Google some more.  I am back to the realization–full realization, not just what I’m telling myself to think–that macrophages don’t mean I have cancer, and very well could point to a Hurthle Cell Lesion associated with Hashimoto’s.    Must.  Stop.  Googling.

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.