Cancer-Free…I Guess.

19 Jul

Today was a very, very long day at U of M. I was really hoping to announce “100% CANCER-FREE!” after my scan. Instead, what I can say is: nothing overtly bad showed up on my scan, and it’s up to me if I want to do any further treatment.

Let me explain…

When most people have papillary thyroid cancer, they follow the protocol below:

  • Total thyroidectomy
  • Medication withdrawl and low-iodine diet
  • Radioactive Iodine Ablation (RAI) for any remnant thyroid tissue (normal or cancerous..it all gets destroyed)
  • Follow-up whole-body scans to look for iodine uptake. Since all thyroid tissue should have been ablated with the RAI treatment, any uptake would be deemed “bad.” No uptake would get a gold “cancer-free” star.

Well, naturally, when I was diagnosed, I weighed all my options and I was not satisfied with the risks associated with the average protocol. I based my decision on the American Thyroid Association Guidelines for Thyroid Cancer Treatment. So my protocol looked like this:

  • Total thyroidectomy
  • Very long wait for Thyrogen injections so I didn’t have to endure medication withdrawl
  • Low-iodine diet and whole body scan
  • Follow up with ultrasound and bloodwork

Today, I had three total scans. The first two were 20 minutes each. I went in feet first, and I wasn’t restrained. I popped two Xanax, focused on my music and I was fine. Afterwards, I met with Dr. W, the nuclear medicine doctor. He said he was concerned about the level of iodine uptake he saw on the first scans, and he wanted me to do 3D image followed by a CT scan. He made it clear that he thought I should have done RAI in the first place.

Hysteria ensued.

I really couldn’t hold myself together. I became irate. I couldn’t stop crying. After waiting for another full hour, I got back on the scan table. This time, they had to restrain me and strap me in. I was told I was not allowed to move. Tears were streaming down my face and I felt like I couldn’t breathe, so I popped another Xanax. I sound like a drug addict, I know…but look at what they did to me! You would need prescription-grade relaxation too!

The nurse acted like I was crazy for needing my iPod. I am so glad I ignored her. I desperately needed it to cope!

After 40 minutes in this God-awful contraption, I got additional information. Dr. W said the iodine uptake was probably normal remnant thyroid tissue that my surgeon left behind. This happens frequently and is nothing to worry about. There was nothing abnormal in my lymph nodes, lungs or liver (where thyroid cancer frequently spreads). However, since he is a nuclear medicine doctor, he thinks I should just do RAI to ablate all the remnant thyroid tissue, whether it is normal or not. This would in no way improve my outcomes, and would not even guarantee that I wouldn’t have a recurrence. But it sure would make the nuclear medicine doctors’ diagnostic job a lot easier.

Dr. W acknowledged that there is good data on both sides of the RAI decision, and left it for me to discuss with my Endo, Dr. E, next week.

So what can I tell you? I have no bad news. And that, my friends, is good news.

Now, I’m off to eat dinner. I have a serious cheese deficit to make up for.

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5 Responses to “Cancer-Free…I Guess.”

  1. Laura Ritchey July 20, 2012 at 8:16 pm #

    Hello-I have been following your blog since I started my thyroid cancer journey. You have made me feel at ease about what is to come and I feel like I am reading my story while reading yours. I, too, am struggling with doing RAI therapy, I don’t want to but there is reasons that the doctors believe I should. Keep up the journaling, it is nice to know all of us ‘crazy’ thyroidless patients are not alone in this world! Lol!

    • sarahyoung1119 July 20, 2012 at 8:40 pm #

      Hi Laura! Welcome to the club no one ever wanted to join! Best wishes for the best of health to you! Keep in touch!

  2. mellyviller July 26, 2012 at 8:04 pm #

    I am also thyroidless..struggling with Pap thyroid cancer that had spread..I so far have had 3 surgeries and an extremely high dose of RAI. I have been through hell over the last 10 months. I hope your treatment is easier for you. Good luck to you.

  3. Tina Robson August 4, 2012 at 11:28 am #

    Hello, I’ve just started blogging and was diagnosed with Papillary Thyroid Cancer 2 years ago. I live in the UK. And look forward to reading more of your blog.

  4. Michelle August 4, 2012 at 8:41 pm #

    Hello~

    Would be interested in becoming a ThyroidChange member?

    ThyroidChange (www.thyroidchange.org) is a grassroots campaign created by thyroid patients to increase access to better treatment methods and testing by uniting blogger, websites, physicians and organization in the thyroid community. We started with a petition, but in 3 months have morphed into a 76 country, 4200+ worldwide network for change.

    We would love to list you as a Member and/or petition supporter. The only thing we ask in return is that you post a link or blog about us. We are trying to reach as many patients as possible!

    Hope to welcome you to ThyroidChange soon.

    Warm Regards,
    Michelle

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