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.”

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