The Latest Path in Our Journey

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The last few weeks, we have found ourselves walking down a very unexpected path.  The short story is that I have a nodule on my thyroid for which I am about to undergo a second round of testing to hopefully rule out cancer.

The longer version of the story goes something like this:  Two years ago (or so), while I was pregnant with Zara, we noticed that my thyroid was enlarged.  I had a discussion with my midwife about it and we decided that I should call my family doctor to make an appointment to get it checked out.  I called my doctor’s office, but since it was Nantucket in the summer when there are a lot of people and not very many doctors, the office decided that the best thing to do was to send me for blood work first, then schedule an appointment if necessary.  I went in and had blood drawn; a couple of days later, they called me and said that my thyroid stimulating hormone (TSH) was a little low but my other levels were OK, so they didn’t think is was anything to worry about or that it was worth trying to fit me into the schedule.  I started taking a kelp supplement to make sure I have enough iodine in my diet (since we don’t use iodize salt or eat many processed foods) and promptly stopped worrying about it.  Last year, I had a physical with a family doctor in Gillette but didn’t think to ask about it and she never said anything about it either.

Then, this spring my mom and grandmother came to visit and we were talking about how I have a family history of thyroid cancer and they convinced me that I ought to get it looked at more closely, despite the fact that two doctors had not seem very concerned.  I did my job as a dutiful daughter and made the first available appointment with a family practice doctor for May 20th, not really worrying about a thing.  On April 30th, I took Zara into the same office I was intending to go to and when the practitioner took time out of Zara’s appointment to talk to me about my thyroid, things suddenly changed from nothing to mildly worrisome.  No, she said, I was not waiting until the 20th to have it checked out, she wanted me to come back the next day for my own appointment and she would fit me in her schedule.  Hearing that gave me my first dose of urgency.

Since the end of April, I have had blood work done, an ultrasound, an appointment with a specialist, and a fine needle biopsy.  My blood work came back normal, but I then was informed that blood work is usually normal for people who have thyroid cancer (which sort of makes me wonder why my doctor’s office in Nantucket relied on that as an indicator of telling me I did not need to make an appointment).  The ultrasound revealed a relatively large nodule that, combined with my family history made them suspicious.  Last week’s biopsy results came back as inconclusive, meaning that they were able to see some cellular changes but they weren’t able to tell the nature of those changes.  After a discussion with the specialist, we have decided to go ahead with another biopsy and gene expression analysis to see if they can get a better idea of what is going on in hopes of me hopefully avoiding unnecessary surgery and treatments.

I mentioned that the last few weeks have been a little scary for me.  I’m doing my best to not worry until there is something to actually worry about.  On the plus side, at least the first biopsy results did not come back immediately malignant; there is still a good chance that this is nothing.  And, even if it were to come back as malignant, thyroid cancer is very treatable and certainly has better outcomes than a lot of other types of cancer.

That is what I’m trying to focus on – the positives — but I’ll admit that there have been moments in the past few weeks when I have been close to tears thinking about what the treatment for this might look like.  Surgery is moderately scary to me, but what has really shaken me up is the possibility of having to do radioactive iodine treatments which would mean having to wean Zara before we are ready and, even worse, not being allowed to be around my daughters for literally weeks at a time.  My family member who had thyroid cancer has to do radioactive iodine treatments once a year for 5 years, during which time she cannot be around other people, especially children, for three weeks.  In Nora’s 4.5 years, I have spent one night apart from her.  I have never been away from Zara.  I cannot imagine what it would be like for me to have to be away from them for three whole weeks.  I know we would get through it, I know we have a lot of friends and family members who would make my absence easier on Chris and the girls, and I know that there are certainly much, much worse outcomes when a doctor starts using the word cancer in reference to your health, but for the mom in me having to be away from my girls that long would be awful.  On top of that, there are also still a lot of questions about what radioactive iodine treatments would mean for our ability to have additional children.  This could potentially completely change how Chris and I are envisioning our future.

I don’t mean to go on and on.  As I said, I have been trying to remain as positive as I can be and to not freak out.  Despite that, this has been weighing heavily on me since the beginning of the month and it feels like it might be helpful to have a place to put it all.  So here it is.  I very much appreciate the loving thoughts everyone has been sending my way even without any details.  The second biopsy is going to take longer than the first to get results, so it may be a couple of weeks before we know more.  In the meantime any positive thoughts offered up to the universe for a benign diagnosis would mean the world.

 

Comments

  1. Theresa Montague says

    Praying and sending good thoughts your way. I just had to have a biopsy done a couple months ago for a different reason and the waiting time for answers is agonizing. I also just had surgery a couple weeks ago and am healing slowly. Not really something I wanted to do with two little ones but I’m looking at just getting through so I can get better. Please keep us posted. Hugs!

  2. Mary Krembs says

    Amber you are in my thoughts and prayers. I am sending positive energy your way. I hope this turns out to be nothing, but should you have to undergo the treatments you describe, while it will be difficult on all of you, you have laid a strong foundation of love and trust with your girls, and a strong foundation of healthy eating (for you!) to boot. That foundation will see you through all of this. Remember it is your love for them that matters most of all. And no radioactive substance or sickness can shake that. Yes, stay positive, and keep being the great wife and mother you are. XOXO

  3. Thyroid geek says

    If the specimen had too much blood the biopsy result can be altered.
    Are your cervical lymph nodes normal?
    Did cytologist do the smears?

    • Amber says

      I asked about sending it for a second opinion but they said that the person who read the results was the best person in town for thyroid stuff and the most experienced. We are not yet sure about the lymph nodes.

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