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To Thyroid Cancer and the Inevitable, Wonderful Misconceptions

Post Published: 26 October 2010
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Category: Dear Thyroid Letters
This post currently has 8 responses. Leave a comment

Dear Non-Thyroid Patients, Doctors, and Common-Senseless Individuals,

I’m going to jump right to the point: Thyroid cancer is NOT “the cancer to have” or “the best cancer” or “[senseless babble ensues]”

See my point?

When I was 17, naive, and quite oblivious to the world, I was told by my fabulous and phenomenal surgeon that papillary thyroid cancer was the “best cancer to have” and that I’m “lucky.” Me being 17, naive, and quite oblivious, I grasped at the straws of words that he offered. While I do love and adore this man with all my heart, I have to disagree, almost five years after living the “high life” with this cancer.

I cannot tell you how many people I have encountered with the same cancer or another type of thyroid cancer who have been told the same things. What I can tell you, however, is how disgusted we all are by these fallacies.

To give you an idea of what happens when you have thyroid cancer, here’s a mini list of what I went through during my first year and a half with thyroid cancer:

* 2 surgeries (1 – complete thyroid removal and ten lymph nodes, and 2 – removal of 29 lymph nodes)

* 2 Radioactive Iodine (RAI) treatments of 149 millicuries each

* Hospital isolation for 2 days for each RAI treatment (If you know how outgoing and personable I am, you know this was torture)

* 3 days of remaining 6 feet away from family and friends while being home (Again, major torture) for each treatment

* 4 nuclear scans

* 1 PET/CT scan

* 3 low-iodine diets (Yeah. Do you know how much effin’ food has iodine in it?!)  without medication (Um, hypothyroid, anyone?)

* Countless ultrasounds of my neck

* 5 biopsies total

* Unknown amount of follow up visits with surgeon, endocrinologist, and internist

…Do you get it now?

Oh, and did I already mention this was during my first year and a half?

To make this even more interesting for you, I will let you in on my family thydrama. We have found out, much to our family’s misfortune, that papillary thyroid cancer is genetic. Yeah, like breast cancer. Only, to make this a little more of a pain-in-the-butt, the genetic code for papillary thyroid cancer has not been discovered. So, unlike families who suffer from genetic breast cancer, we lack the ability to blood test for our cancer. Solution? Numerous ultrasounds and biopsies of nodules until cancer is found, if it is found (God forbid).

The total? Six women without thyroids. Yes, one more has joined the batch. Now, whether or not she has cancer like the rest of us five is another story. We won’t find out until her surgery in November. Oh, and unfortunately, as soon as following generations hit puberty, they are strongly advised by our endocrinologists to start getting ultrasounds of their necks each year or so to check for nodules. My little cousins range from the ages of 4 and 15. My godson/nephew is going to be 7 in November. They will all have to be checked as soon as they hit puberty. Two of them already have, which means they are due for ultrasounds. Get the picture?

As you can (hopefully) see, ladies and gentlemen, thyroid cancer is not exactly “best.” After surgeries and treatments are over, there are longer lasting problems that could and often do occur. Ultrasounds, scans, follow up appointments. All of these still happen long after the cancer is “gone.” And, to add just a little tidbit here, thyroid cancer often is never truly “gone.”

After being diagnosed with thyroid cancer, I developed anxiety and panic disorder. I have it under control now, but it was horrendous during my first two years. I also forget things quite often (a bit too often for someone as young as me), and I find it more difficult than normal to retain information. My weight fluctuates more than the economy, and my mood swings literally, well, swing. I take medication every morning at 6AM, and still have little to no feeling in my upper left chest, the left side of my neck, my left jawbone, part of my left cheek, and my left ear from my second surgery.

Still think thyroid cancer is a walk in the park?

Think again.

Ever So Sincerely,

Dorienne Plait

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8 Responses to “To Thyroid Cancer and the Inevitable, Wonderful Misconceptions”

  1. Donna says:

    I feel your pain.
    However, I do believe they have found the code or at least are working on it.. as someone in my support group has a family too saga much like yours and they have been using her family for this.
    I know it is tough .. but hang in there..

  2. Linny says:

    You are and were so unvalidated. Oh very painful for you. Why do people need to say things like this. Liken to putting pecks in a peck board of hight to low! Shockingly sad!
    I will add another uncaring comment that people state like its written in a tablet likened to the 10 commandments.
    That death is rated too.
    My children were 5 and 8 when their father died and disappeared from their life after we left in the morning to go to an all day party.
    Afterwards my inlaws and others would say things like the worst loss is the loss of a child.{ As they lost a 34 yr old child?} Imagine ! Well raising my children after that would cause my opinion to be otherwise. They are adults now but scars remain. They are not resilient! Why do people measure such things? It was horrible for ALL of us.

  3. Amanda says:

    Dorienne,

    People say those “things” because they haven’t lived through them. Even wonderful doc’s say it, but what if they lived through it? I bet the wording would be much different. I hear you completely. Thank you for writing it out, I hope it makes you feel a tiny bit better.

    Even without the cancer, I have gotten so many people with misconceived ideas about thyroid issues. My least favorite was from the nurse at my regular doc’s office: “Thyroid problems are easy, you just take a tiny pill and you are better”. At the time, I thought this was the truth. Now I would like to punch her in the nose.

    Amanda

  4. Dori, you are AMAZING! The way you and your family are dispelling the myths associated with thyroid cancer is so important and inspiring. I’m honored to raise awareness along side of you! I HEART YOU!

  5. EVERY SURVIVOR says:

    awesome words. you have such a gift. please keep writing.

    please keep strong…

  6. This is great.
    I love you for writing this!

    I was diagnosed at 16 (last summer), and I am still waging the war of my fucking life. I hate it. It seems to get better, then worse… Ugh. But enough about me! You are strong, and wonderful, and you totally just inspired me. So thanks!!! And best wishes, as always.

    Brooke

  7. Donna: Thank you! 🙂 Yes, they are indeed working on finding the genetic code. My family is participating in the study at OSU as well. Hopefully they find something sooner than later. I wish you and your family many blessings and much love.

    Linny: Thank you, darling! Oh, honey, I completely agree. What a sick way of competing with one another! It’s very sad how our world has become so apathetic. 🙁 My love to you and yours.

    Amanda: I do understand that, but it still gives them no right to say those things. If someone haven’t experienced it nor gotten a wealth of information, then he/she cannot make a comment about it. I know no one is perfect, but in all honesty, this is one of those situations where it’s just unacceptable and extremely insulting to the person suffering. And what kind of comment is that?! There is so much more to taking Synthroid than these people understand. Levels fluctuate, and at times, the hormones change rapidly. It’s hard to control, even with that little pill. Ridiculous.

    Joanna: You’re unbelievably sweet, and so wonderful! Believe me, the pleasure to fight this battle alongside you is all mine! <3

    EVERY SURVIVOR: Wow, thank you, sweetie! Much love.

    closertotheedge: You are an inspiration. You’re such a tough woman (I can tell), and you have so much to offer to the DT community. Please write a letter if you haven’t already. I'd love to hear your story! Also, feel free to contact me ANYTIME. I’d love to chat with you and help you through your journey with thyroid disease, if need be. I’;m always around. Much love, sweetheart! Keep fighting this stupid disease! Stay strong and keep moving!

    Thank you everyone for all of your thoughts and wishes. I love reading every single comment. It's wonderful to know my voice is being heard. If you haven’t written something to Dear Thyroid, please do so! I want to read it!

    Love always,
    Dorienne Plait

    • Amanda says:

      Dorienne,

      You are 100% correct, people should not offer false promises or uninformed comments. But they do, and that irritates the crap out of me. I don’t want you to think I was trying to make their ignorance “ok”. It isn’t. Ignorance regarding thyroid conditions is just as difficult to deal with as the actual condition, at least in my case. Our best defense is to fully educate ourselves and be ready for the next rude comment from someone who “thinks” they know. More often than not thought, I am caught off guard and my response sounds weak.

      Thank you for writing, contributing and sharing here. I appreciate every word and try to keep as much of other’s shared knowledge as I am able.

      Amanda

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