Giving Thanks

I heard from M a little while ago.  Her melanoma surgery this morning was a complete success!  She said it was a “very superficial cancer.  No treatments or lymph node biopsies.”  Praise the Lord!

I am ready for my appointment tomorrow.  Questions printed and emailed.  (Dr. B’s quick response was, “Lots and lots of good questions,” maybe with the emphasis on “lots and lots?”)  Childcare lined up.

And here, for your amusement, are pictures of my neck!

Now you see it (swallowing):

Lump visible when swallowing 5-5-13

Now you don’t! (not swallowing):

Lump invisible 5-5-13

Note to self:

You can read and re-read all the journal articles about what percentages of Hurthle Cell Lesions are cancerous and what percentage are not.  You can memorize all the factors that predict whether a HCL/N is cancerous or not.  But NONE OF THAT can tell you whether your particular lump is malignant or not.  Only surgery and a good pathologist can make that determination.  YOU ARE JUST GOING TO HAVE TO WAIT TO FIND OUT. STARING AT SCHOLARLY WRITE-UPS ON YOUR COMPUTER SCREEN IS JUST GOING TO GIVE YOU A CRICK.  SO GO TO BED ALREADY.

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.”

Happy Star Wars Day!

May The Fourth Be With You! Happy Star Wars Day! This has always been a favorite “holiday” in our household.

To continue the thought from yesterday, there is a third scenario that I would also REALLY like to avoid—ignoring the lumps in the left side of my neck and perpetually wondering if cancer might be hiding there—or having it show up there later and knowing I could have just had the whole shooting match over with already. I hope I don’t have to decide between the chance of taking out my thyroid needlessly and being confident that I don’t have an unidentified cancer lurking in my neck. But enough about that. We’ll deal with that on Tuesday.

Good news! Eleanor’s new bedtime routine, which I was SO dreading, went really well last night. When it was time to take her to bed last night, she asked if she could nurse. And we talked about it for a little while. I explained that Silas and Elliot don’t nurse. She laughed at that, saying, “Only little girls can nurse!”

I told her that Silas and Elliot used to nurse when they were babies, but then they stopped nursing when they got to be big. This gave her something to think about. She asked if she could nurse on the couch. When I turned her down, she asked if she could nurse in the bed. When I said, “no,” she cried, but just a little.

“But I really want to nurse,” she said. I’ll be honest, I almost caved then. But she didn’t seem hysterically distraught, just a little sad. So we went up to her room. I grabbed two bedtime books off her shelf and we sat in the rocker together—something we haven’t done in a long time—and read together. When we were done, she asked again if she could nurse. I told her that we were going to start going to bed at night without nursing. I also told her that when she was big enough to stop nursing, she would be big enough for me to paint her toenails.

She’s been really fascinated with the pink paint on my toenails since the weather got warm enough to break out the flip-flops and sandals. But I told her that she wasn’t big enough to have paint on her toes. So this offer really got her attention. She said, “I’m big enough!”

“Are you big enough to stop nursing?” I asked.

“No,” she said. But I told her again that when she was big enough, I had some paint I could use on her toenails. I’m planning to keep that talk up as motivation.

So anyway, I put a CD that I had made for her into her brand new CD player, tucked her in and turned out the lights. Rather than lying down next to her, I sat on the end of the bed.

She did amazingly well. Every time a new song came on, she asked, “Is this a lullaby?” And before I knew it, she was asleep! YAY! So that’s our new bedtime routine! Books in the rocking chair, followed by the bedtime CD! The best part is that this is something that anyone who is not lactating can replicate! Please excuse the exclamation points, but this is a REALLY big deal for our family, upcoming surgery aside. But I expect it will make my surgery and post-op time much more manageable, which is the whole point.

If this goes well for about a week, I plan to tackle nap time in much the same way. Then we will just be down to nursing first thing in the morning. To be honest, I’m not sure exactly how we’re going to handle that one. But I’ll figure out something.

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.

My AMAZING Sister(-in-law)

Sarah just called to offer to come and help after my surgery. Isn’t she wonderful? She also has an INCUBATOR with guinea eggs in it!!! I am so jealous!

Just made a bulleted list of questions to take to my appointment. Feels better to have them down. I know I can add to the list if anything else occurs to me. I think I’m going to email Dr. B one or two days before and ask if he would like to have my questions ahead of time.

One Week Obsession Remission…is over

So I have been in obsession remission for several days, and it’s been pleasant. I have been calm. I still feel fairly calm, but I can feel my obsessive tendencies creeping back up on me as my follow up appointment approaches. (T minus 6 days.)

I have a lot on my mind. I have read that when a partial thyroidectomy is indicated, but there are multiple nodules on the other side, the surgeon will often recommend doing a total thyroidectomy (TT). So I am thinking about this. Dr. B’s email did indicate this might be a possible course. Here’s the breakdown: I will be VERY unhappy if I have my whole thyroid out and they do all their dissections and pathology and find there is no cancer in there anywhere.

On the flip side, I don’t love the idea of having half out and then having to have the rest out in a second surgery. Also, I am not happy with the thought of totally ignoring all the nodules (how many are there, anyway?) on the left side. So here’s my thinking. Can we do FNA (Fine Needle Aspiration–what I had done on the other nodules) on at least the largest and/or most suspicious on the left side before surgery? ‘Cause that might make our course more clear. And if I only end up having half out, I’m still gonna be wondering about the lumps in that other side.

{Side note: Silas is practicing his memory verse, “Whenever I am afraid, I will trust in you…” Such good advice!}

Ok, so here’s something else: Am I going to be able to teach my childbirth class that starts next week? If (When?) I have surgery, how long will it take me to recover? This class has very little wiggle room built in because of the couple’s due date. Funny how I was really wishing for more couples to sign up; now I am kind of glad it’s just the one. So should I contact them now and give them a heads-up about the possibility of having to alter or cancel the class? Or should I wait until after my appointment when I have more info—which will be the same day as the scheduled first class. That’s one of the things I’ve allowed myself to look at online…what to expect after surgery. Looks like I may need to borrow a recliner. Recovery time seems variable, but for most at least one week before working again. Of course, I don’t have any idea how soon he will schedule surgery. If he plans it for mid-July, I have nothing to worry about–except that my recovery will run into book rush time.

Would it be really terrible to ask Aunt Sharon to come help me, like she did after Eleanor was born? I feel like I might need some assistance. One of those times I miss Mom, for SO many reasons.

Also, what about lymph nodes? Has anyone looked at these on ultrasound? Will Dr. B be on the lookout for funky looking lymph nodes in surgery?

Weaning. Is going to be. Really. Hard. I need to start…..tonight. May the Lord help me. I just don’t want things to be too difficult on Rusty if I am unable to help with bedtime for a few days after surgery. And if I do somehow end up needing RAI, I really, really need to have my breasts ready for that by being empty of milk.

And at the extreme end of my hysteria is this: I have a very faint sensation of having a lump in my throat. Has it been there for a while, and I notice it now because I know there’s an actual lump there? Or is my lump growing and starting to press on my windpipe? Or is it just in my mind because I am feeling paranoid? You won’t tell anyone how completely insane I’m becoming, will you?

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.

“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.

Questions, Confessions, Speculations

8:10 am
Question: How can I keep myself from being on edge ALL DAY, waiting for a call, even though I know I probably won’t hear until tomorrow? (or later?)

Question: Why didn’t he biopsy the lump in my left lobe?

Question: If I get a call from his office while Rusty is at work, and they tell me I have cancer, should I call Rusty at work to tell him that?

6:10 pm
I hate waiting.

Question: Since the local hospital appears to not have a nuclear medicine department, where would I go for RAI if I needed it? I could call and ask S, a friend who has had RAI for an over-active thyroid, but I haven’t talked with her about my thyroid issues yet, and I don’t want to be a self-indulgent, attention-grabbing drama queen.

I even braved the patient website, to see if my test results showed up there, even though I told myself I do NOT want to find out I have cancer that way.

Time to go make some supper. Quiche, anyone? The hens are really laying right now.

8:27 pm
Confession: I have been scouring the internet for images of thyroid nodules that “match” what I remember. I’m back to thinking I have cancer. Current theory is that the lump in the front is actually a (pretracheal?) lymph node with metastasis from the “unfriendly” nodule. Except that I can’t seem to find whether pretracheal lymph nodes move when you swallow. I will be SO glad when all my speculating can be over with.