Category Archives: Hashimoto’s

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.

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Vitamin D, Naps, and Nursing

There may be a connection…but that’s not where I’m headed. :)

First…I got my Vitamin D levels checked after learning that Hashimoto’s is linked with low Vitamin D.  My levels came back as 23.3 ng/mL, which is considered “insufficient.”  Deficient would be anything below 20, and “good” levels are anything from 30-100.  So I got me some good Vitamin D3 supplements to take. I found a good deal on Vitamin Code D3 with probiotics on Amazon. Is it possible that I feel better after only 3 days?

Weaning is….going.  We’re making some progress.  The beach idea did NOT work out.  It was not pretty, people.   But yesterday I just decided that we were GOING to do this.  I picked out four books that I thought she would like and told her they were “nap time” books.  I basically tried to mimic her successful bed time routine.  We read the books, then I put her in bed with her lullaby CD on, and I sat on the end of her bed.  Day 1, Wednesday, it took 2.5 hours from the time we sat down to read until she fell asleep. I was DETERMINED not to leave that room until she fell asleep.  Day 2 was today, and it took one hour from start to finish. I am praying that it continues to get easier over the next several days.

I need to decide if I should cut out her morning nursing before surgery, if I should let surgery be the thing that ends the morning feed, or if I should continue it for a little while after surgery.

Part of making that decision will be how well she is doing with the change in her nap routine over the next few days.  I also need to find out how soon it would be safe to nurse after having general anesthesia, and how pain meds will affect things too. I don’t want Eleanor to be stressed by weaning too fast at the same time that her access to me is going to be limited by my surgery and recovery. Also, if I quit the same day as my operation, I will probably have to deal with engorgement for a day or two at the same time that I’m recovering from surgery. Not fun.  So I have lots of factors to consider.

Tomorrow is one week until surgery.  Y texted me and asked if she could put it in the church bulletin on Sunday.  My first though was, that’s kind of early, isn’t it?  Then I realized it was going to be less than a week before my surgery.  So I let her do it.  It really is almost here.

Mama the Grouch

I think Rusty is worried that I’m going to be Grouchy Mommy (or possibly worse, Weepy Mommy) after my thyroid surgery.  He keeps making lighthearted comments to that effect.  One example:  I was telling him that I was thinking about giving up coffee. He joked something to the effect of “No coffee AND no thyroid? Is that a good idea?”

Now, it’s very possible that he’s just trying to keep things light.  However, in my experience, there is always some truth at the bottom of humor.

To be perfectly fair, I am a little concerned about how I will feel with only half a functioning thyroid, and that half possibly impaired by an autoimmune process.  But I feel like with a little thyroid hormone replacement, I will probably be able to sort it out.

Google remission for several days now.  I feel much better.  Just waiting for June 7th.

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.”

“Either way, you will be fine.”

11:45 am
They’re cutting down the Toomer’s Corner Oaks today. One of them (the one on the left) looks like it’s already down. Watching on and off on the webcam. Wondering if there will be something else to mark this day as significant for me.

I am fighting edginess today. Have yelled at the kids several times. Thank you Lord for Clary Sage. I am really, really, really trying to Remain Calm. I also need to get my head around the possibility that I may not hear anything today, even though today is when the news is “due.” I will not die from waiting.

6:30 pm
Biopsy results are back.   I sent Dr. B an email this morning, and he answered me this afternoon.

One of the nodules tested as benign with inflammatory cells, which Dr. B says is consistent with Hashimoto’s thyroiditis.

The other nodule was a  “Hurthle Cell Lesion.” This can be because of Hashimoto’s. It is probably not cancer but since there is still a small chance it is, they usually recommend “surgical excision.”  He says we need to talk about whether to remove part or all of the gland.

“Either way, you will be fine,” he said.  I appreciate his reassuring words.  He laid out the facts, but isn’t lacking the human factor to go along with them.

Pretty Hi-larious how far off I was in my latest theory! Should teach me not to speculate. But of course I have already started looking at Hashimoto’s and Hurthle Cells on the internet. Really haven’t found much to tell me any more than Dr. B’s email. And I still have to WAIT! :) It’s probably good for me.

So I still don’t have a yes/no answer on cancer, and I will probably need surgery this summer. Some good news, for me, is that Rusty can go to Utah on his business trip this weekend without the stress of leaving behind a cancer-diagnosed wife at home.

So should I go ahead and start to wean Eleanor anyway, knowing that I will probably at least need surgery? I think I will.