Category Archives: Papillary Thyroid Carcinoma

Follicular Variant Papillary Thyroid Carcinoma, Second Surgery Today

Just as I did when I had done research on Hurthle Cells way back when I was diagnosed with a Hurthle Cell Lesion and wanted to understand what that meant, I want to put down here some of what I have learned about the particular variety of cancer I was diagnosed with after my first surgery:  Follicular Variant Papillary Thyroid Carcinoma, FVPTC.

The very first things I read indicated that FVPTC pretty much behaves the same and is treated the same as “Classical” PTC (cPTC).  Since then I have read a good deal more, and have found that this is not always the case.  In both cPTC and FVPTC, it makes a difference if the tumor is encapsulated or diffuse (spread out with no clear margins in the tissue).  Just like you might think, diffuse tumors tend to spread more readily and are considered more “aggressive.”

There is also an “in between” type that is not encapsulated but is not diffuse–From what I have read, it tends to behave more like encapsulated tumors and is, as these authors love to say, more “indolent.” I haven’t found much about that, so cant say more.

Then there is a great deal of research published within the last two to three years that examines encapsulated FVPTC (EnFPTC) versus unencapsulated.   See this, this, and this.  The basic takeaways are two-fold.

One is that FVPTC tends to behave more like FTC (Follicular Thyroid Carcinoma) rather than PTC.  That means it is more likely to spread distantly through the blood than to reoccur locally in the neck (in lymph nodes, etc.)  It also means that a totally encapsulated FVPTC might even be considered benign.  In FTC, malignancy is determined by capsular or vascular invasion.

The other take-away is that encapsulated FVPTC is generally very non-aggressive.  It seldom spreads anywhere.  There is a good deal of debate about whether it warrants a total thyroidectomy if there is no vascular invasion.  Even with capsular invasion, some authors believe a total thyroidectomy is not worth doing.

Then there is an alternate point of view, that encapsulated FVPTC can have vascular invasion that is so microscopic as to be almost undetected, and that in such cases a tumor that looks to be harmless could end up with distant metastases years later.

So all of this was what I have waded through since my diagnosis, what I’ve struggled with as I decided whether to have the completion surgery or not. What it comes down to is that I do not believe completion surgery will change my prognosis, but it will lower my risk of recurrence and make it easier to be monitored going down the road. I put my trust in my God to continue with me down this path, wherever it leads me.

And in a few minutes, I’ll be headed over to the hospital for my surgery.  Last time I was anxious about having surgery–since I’d never really done that–and about what they would find.  This time I know what to expect and the procedure doesn’t worry me.  I don’t really expect them to find any more cancer, but know it is a possibility.  This time, I am more concerned about adjusting to life without a thyroid, life on a daily med.  Again I put my trust in the Father to take me forward one step at a time.

See you on the flip side.

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Water Under the Bridge

VBS and Rustic Youth Camp are done.

VBS went very well, I think.  I ended up not doing quite all that I planned, but that was ok, and a good lesson to learn in not biting off more than I can chew.  Usually, if I don’t end up achieving all that I hoped to on a project, I blame myself for not working harder.  Maybe, finally, I am coming to realize that some of the problem is that I tend to have grand ideas–bigger than I am able to pull off sometimes.  This season in my life is teaching me that I don’t have to do amazing and spectacular things to be effective.

Camp was wonderful.  It was so much fun to have Sarah and the kids there.  It was a blessing to see so many good friends and to make new ones, too.  I need to work on the way I interact with children, including mine.  I have a tendency to be more stern than I need to be–to jump to sternness instead of letting gentleness be my trademark.  I don’t think I did a bad job as a teacher, but I could have done better.  Always more to learn.

To review my last post, I was anxious because I wanted to have an ultrasound done on my neck to look for suspicious lymph nodes.  The American Thyroid Association and the National Comprehensive Cancer Network both recommend such an ultrasound prior to surgery for Papillary Thyroid Carcinoma (PTC) because it spreads to lymph nodes so frequently, and it’s better to get effected lymph nodes out in the first surgery if possible.

I was going to try to just accept that Dr. B hadn’t ordered it and it would be ok, but I couldn’t let it go, so I emailed him to ask him about it.  He said that he would be glad to do it, and I told him I would take him up on it.

Then I kept on reading–I wanted to learn more about the particular variant I was diagnosed with–Follicular Variant Papillary Thyroid Carcinoma (FVPTC) and even more specifically, encapsulated follicular variant (EnFVPTC).  What I learned was that EnFVPTC is much less likely than PTC to spread to lymph nodes. (More about that in my next post.)  So then I felt a little silly about requesting the ultrasound.  I decided that if they called and told me it was scheduled during camp week I would just cancel it rather than rescheduling.

And that’s what happened.  Dr. B’s nurse called and told me my ultrasound was set for July 3rd.  I told her that I would just cancel it, since I would be out of town. Then ADI–the place that actually does the ultrasounds–called to pre-register me.  I cancelled with them as well.  Then, while I was gone, ADI called the house REPEATEDLY to pre-register me, and Dr. B’s nurse called me again to tell me that my ultrasound was actually July 2nd, not the 3rd.  All this was kind of confusing to me, since I had told Dr. B’s nurse that I was cancelling the ultrasound, since it was at my request anyway.  I am sure that Dr. B is going to think I am a complete nut job before this is all over.  The only thing I know to do is to be as sweet as possible to them.

Also behind me is another crisis on this journey. I had to decide whether or not to have this surgery done.  I’ve already outlined my anxieties about it.  For a few days, I was seriously considering calling it off.  Ultimately, I decided that I would do it.

The main reason for me to not have the surgery was fear of an apocalyptic future event that would leave me without medicine.  What I decided was that in such an event, my survival was unlikely anyway, and I couldn’t base my decision on speculation.  If I kept half of my thyroid, my chances of recurrence would be much higher.

I have also been anxious about adjusting to life without a thyroid–again, the message boards add fuel to the fire.  There are so  many over there who have struggled to adjust to life on thyroid replacement.

And the honest truth is that I know myself, and I am a person who likes to keep my options open.  I don’t like making irreversible decisions.

Anyway, my completion thyroidectomy is scheduled for Thursday, July 11th, three days from now. After all of that, I feel that it’s the best decision I could make for my circumstances.  I’m hoping all of these anxieties can just be water under the bridge as we move forward.

Message Boards and “The Big C”

I have been more emotional the past few days.  Not bad over all, but I have had a few moments when I could not hold back the tears.  Maybe it’s all part of the process of coming to grips with this thing.

I think it kind of started when I signed up on the ThyCa message boards over at Inspire.  Message boards can be very helpful–they give you a chance to talk to other people who are dealing with the same thing you are.  I remember when I had my second miscarriage, going on message boards and talking to other women who had gone through the same loss was helpful for me.  It’s good to be able to ask if your experience is normal (i.e., common to many), or what to expect, etc.

One of the problems with topic-specific message boards is that they are inherently unbalanced.  Occasionally people come on to share good news, but generally, people post when they are worried or upset.  It’s good that they have a “safe place” to go for reassurance, among people who understand.

But as a reader of message boards, you are exposed to a disproportionate number of negative experiences–In the case of thyroid cancer, to make a specific example, you hear a LOT about people who are facing metastasis, problems balancing their thyroid hormones, doctors who are uncooperative, family and friends who don’t understand what they’re going through, and so on.  In other words, it can be very easy to get the impression that for most people, the thyroid cancer journey is really rough.

So I was on the boards, and I read about several people having “lymph node mapping” prior to their surgery.  Basically, it’s a detailed ultrasound of your neck looking for suspicious lymph nodes prior to surgery so that you can have them out the first time around rather than having to go in for another surgery later.

I looked into it–I have not had a formal “lymph node mapping” done.  I know That Dr. B looked at my lymph nodes a little on ultrasound when he did my FNAs, And I know that he inspected my “central compartment” lymph nodes during my first surgery and didn’t see any that looked worrisome.

So I emailed him about it.  I am trying not to abuse my email privileges with Dr. B.  It’s so rare to find a doctor who INVITES you to email him with any questions you have.  I don’t want to make him regret the offer.

Basically, he said what I already knew about the inspection he had already done, and he added that he would take the lymph nodes in front of my trachea for sampling, which he said would be considered “more than adequate” in my case.

What he meant by “in this case” is that I had a very small carcinoma.  At 1.2 cm, it is barely large enough to call for the removal of the other lobe (>1 cm is the guideline), and is therefore considered, at least right now, to be low-risk.

And he said something else, which I already knew.  He said that “we know that we over-treat these small thyroid cancers most of the time.”  And this lead me to thinking again about how much I really don’t want to lose the rest of my thyroid.

So here’s the picture, people.  I am, on one side, almost in tears over having the rest of my thyroid out and being dependent on medication for the rest of my life (not to mention, thanks to the message boards, very concerned about how difficult the adjustment will be to life without a thyroid), and on the other hand, anxious beyond measure that my surgeon has not inspected my lateral lymph nodes for possible metastasis. (Which is what ThyCa, the NCCN, and the ATA all recommend–I’m not crazy for wanting this.)

[By the way, here’s a picture of the different lymph node regions of the neck, if you are wondering what on earth I’m talking about:

F1.medium

Dr. B was saying that he always thoroughly checks out the central compartment (VI), whereas guidelines recommend ultrasound inspection of regions II, III, and IV as well, from what I have read.]

Ok.  So let me sum up–I want to both ramp up AND scale back my treatment.  Which is IRRATIONAL, people.

So here’s my action plan.

  • “Unfollow” all the messages I’m currently following on the ThyCa message boards so that I don’t keep getting emails encouraging me to check in.
  • Generally, try to stay away from thyroid cancer boards, blogs, etc., at least for a while.  (Not necessarily including this one–I am finding it very useful to “talk” through my issues here.)
  • Pray that God will help me accept the loss of control (or at least the illusion of control) posed by having my thyroid gone.
  • Remind myself, repeatedly, of all the reasons why it’s better to have it out.
  • Let Dr. B do his thing–which I do believe he’s very good at–and not worry about the rest.

The best thing to come out of the message boards, for me, at least, was a comment by one of the posters who was trying to encourage someone with a new diagnosis.   She said,

“For me, I have had to learn that cancer is my little “c” and Christ, who I lean on when scared, is my big “C”!

So I am going to remember that Christ is the only “Big C” in my life.  And he can totally handle the “little c.”

Weaning, Whining, and Well-Wishes

Alliterative titles: cutting edge or passe?

First weaning–it’s been rocky, people,  but I think I have found the solution: Chocolate.  A couple of mornings ago, Eleanor was crying, begging to nurse.  I almost started crying myself.  But then my wise, sweet husband rescued me by offering Eleanor a precious treasure:  A Thin Mint Girl Scout cookie.  She took it and was fine.  So now, when she is asking to nurse, I offer her a piece of chocolate instead, and it is getting us over the hump.  She is asking less.

Whining–well, we can save that for later…

Well-wishes.  I have the very, very best friends and family–including my family in Christ–in the world.  I have gotten some of the sweetest cards.  The food offerings have been amazing.  A sweet sister called me on Monday with an offer to order pizza for our family.  I told her I had “canceled” the rest of our meal list because I was doing so well and knew I would need help again after my second surgery.  She said, “Well, I’d like to help you out now and later too.”  So Monday night we had pizza.

Ok, this doesn’t fit into my neat, alliterative title, but the mom of the two boys down the street with whom Silas and Elliot play almost daily came to the door yesterday to pick up one of her sons.  We don’t meet face-to-face very often–our boys usually just run up and down the street to visit with each other, and A (the mom) and I text or talk by phone as needed.  So she hadn’t seen me since all this thyroid business started.  She saw the bandage on my neck (actually a scar-reducing patch) and asked me what was going on.  I saw she had a scar on her neck too.  Because she had thyroid cancer about a year ago.  Same process as me–lobectomy, completion thyroidectomy, then RAI (which I’m hoping will NOT be part of my process) and is now on thyroid replacement.  She sees Dr. S, whom my friend S recommended to me.  I may have to still look him up, but I am going to give Dr. G a chance as my “manager” first.  It’s just one more of those “out of the woodwork” experiences for me.  (There’s the alliteration I missed–Woodwork!)

Ok, now the whining.  As always, feel free to skip the rest of this post if you don’t want to hear me complain.  I will never know the difference! :)

I don’t want to lose my thyroid.  It freaks me out.  I don’t want to deal with the process of trying to adjust my meds so that I feel right.  I don’t want to be dependent upon a drug manufacturer for my life.  I know that this is what we need to do.  I’ve read enough stories over on the Thyca boards to know that even Papillary Carcinoma can spread and grow and make my life awful, and it’s better to get the whole thyroid out and pray no lymph nodes are affected yet.

But I do. not. want. to. depend. on. a. drug. for. my. life.

I am just going to have to get over it.  But I don’t know how.  May the Lord help me overcome my anxiety.  I just have to remember that this life is not what it’s all about.

 

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.

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.