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Life Redefined My Cancer Story

Post Published: 09 March 2010
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Category: Column, Life Redefined, Thyroid Cancer in Young Adults Column
This post currently has 24 responses. Leave a comment

Written by Joanna Isbill: Editor, Life Redefined (Thyroid Cancer in Young Adults Columnist)

It was Wednesday, October 8, 2008. Just a few days after my 24th birthday. I woke up with an ache in my neck. I reached up and felt a large knot on my thyroid. Something inside me told me it was cancer.

The next day, I saw my primary care physician. He ordered blood work, sent me to have an ultrasound, and referred me to an endocrinologist. The ultrasound showed three nodules on my thyroid—one on the left and two on the right. The blood work indicated Hashimoto’s thyroiditis. I met with the endocrinologist. He told me that the chance of this being cancer was very small. However, he still recommended I have a biopsy to confirm what the blood work suggested. Another endocrinologist in the practice performed the biopsy. It was less than pleasant. Afterward, I heard him talking to my endocrinologist about the appearance of the nodules. They were talking in hushed tones about calcifications. I later learned that calcifications are commonly seen when cancer is present.

On October 21 I got a phone call from a medical assistant at my endocrinologist’s office. She told me I needed to come in the next day to get the results of my biopsy. Who calls and asks you to come in to tell you everything is benign and you’re in better health than ever? ,  After this phone call I broke down and cried for a long time. Even though I had known in my gut all along I had cancer, that phone call still hit like a brick. I will never forget the emotions that coursed through me that day.

The next day, my endocrinologist confirmed what I already knew. The biopsy indicated papillary thyroid cancer. I had a total thyroidectomy and central node dissection on November 5, 2008 followed by RAI a few weeks later.

I’ve been through several different frames of mind since I was diagnosed with cancer (which I’ll discuss in further detail in future installments). Relief. Denial? Fear. Acceptance. The day I was actually diagnosed with cancer I felt relief. I was relieved because, although I knew in my gut I had cancer, the actual diagnosis confirmed my instincts. During the two or so months after my surgery, I think I was in shock. I don’t know if it was denial or not, but I do know that I had not yet absorbed the fact that cancer was no longer something that happens to other people, but something that happened to me. Once I absorbed this, the fear set in. The fear that cancer brings is crippling. It is absolutely all-consuming. After I got over the fear, and I did eventually work past it, I was left with acceptance. I accept that I have cancer, and I accept that it’s something that has changed my life.

Throughout the weeks and months after getting my biopsy results I was bombarded with emails and cards full of encouraging messages. Many of my friends who sent these messages told me they hoped I could soon put this all behind me. If only. Cancer is not something that I can put behind me. I carry it with me every single day. It has changed every single part of my life. As much as I fought the change, it happened. I am a different person. And so it will never be “over…

Cancer left my life in pieces. But when I tried to put them back together, I realized they no longer fit the same way they once had. It’s a work in progress, but I am trying to figure out where everything goes, redefining my life.

I’m looking forward to walking this road with you, because it’s not a road that should be walked alone.

xoxo,

Joanna

joanna@dearthyroid.org

Read Joanna’s Bio.

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24 Responses to “Life Redefined My Cancer Story

  1. Lolly says:

    Joanna,

    Lovely honest truthful from the heart letter. I can’t say I understand what you are going through or went through well that is a lie because I too had the scare of cancer large nodule right lobe that had 5 FNA’s and not one coming back conclusive, only option to be sure was to remove the whole thyroid, it turned out benign but it didn’t take away the fact that if I had left it it could have been cancer and worse it could have spread or leave it could turn into cancer.

    I was releived but also sad to lose a part of my life that I was getting under control only to find that it hit me with a large nodule that wasn’t normal. I don’t regret my decision I couldn’t take that risk what I do regret is all the FNS’s I underwent and for not positive or negative result maybe I would still have a thyroid today.

    I hope that you can come to terms with it,although it will always be part of your life, in time it will be just a memory. I know they say that if you get thyroid cancer it’s one of the easiest to treat caught early enough but that doesn’t take away the fact that it is still cancer and if you are predisposed to it in the thyroid why is it then that it can’t manifest itself somewhere else that would be my way of thinking, no doubt you have thought the same at times.

    I wish you all the best and look forward to reading more from you.

    Lolly

  2. Joanna says:

    Lolly, I can’t imagine the anxiety you must have felt going through all those FNAs but not getting conclusive results. I think the waiting game is one of the hardest things to deal with. It’s like you’re stuck in limbo. So if you could do it over, would you have opted to have your thyroid removed earlier instead of continuing to try to get a conclusive biopsy?

    Thanks for sharing!

  3. Dear Thyroid says:

    Lolly – Thank you so much for your wonderful support and for sharing more of you with us!

    xo

  4. Mary Shomon says:

    You’re strong, brave, an old soul in a young body, AND you are also a lovely writer, Joanna. I look forward to reading more and learning more as you share your story.

    — Mary

  5. LizSchau says:

    Joanna,

    OMG — I absolutely love this line, “Cancer left my life in pieces. But when I tried to put them back together, I realized they no longer fit the same way they once had.” That is so poignant and so beautiful and so true. Whether it be living with, or coming out of an illness, it’s true that it changes us. Hopefully, your pieces will fit back together better than before, but I know that is no simple task.

    Welcome to the team! Glad to have you!

  6. Dear Thyroid says:

    Mary;

    Thank you so much for your stunning comment and support.

    xo

  7. Dear Thyroid says:

    Liz;

    That was my favorite quote, too. Regardless of disease, I think we do all relate. Our disease redefines us, new pieces emerge and the puzzle is so much more complicated.

    You’re a honey. Love your support and comment, just beautiful.

    xo

  8. Jennifer says:

    Hi Joanna,

    I experienced the same going to my PC and then finally seeing an endocrinologist…ran bloodwork,did the sono and right away I noticed he was taking several pictures of one side of my neck and the initials put were INF(inflamed)I as well was diagnosed with Hashimoto’s but my doctor says there is nothing to worry about. She says my bloodwork just shows some inflammation and it is too early for hormone therapy. I am afraid of cancer as well and want to seek a second opinion since it does run in my family.

    Thank you for sharing your story,life will never be the same for you and I have no idea how I would handle cancer so you just sharing and moving on shows how much of a survivor you truly are.

  9. Hi Jennifer;

    Thank you so much for stopping by and having the courage to share a bit of you with us. Joanna will respond. I (Katie) just wanted to let you know that we’re all here for you. We hope that you get great results. I/we are so sorry that you have to go through this… You are a fighter, clearly and a survivor!

    Please let us know how the test results go and how you’re doing and feeling.

    Take Care,
    Katie

  10. Lolly says:

    Joanna,

    It took over 5 months FNA nearly every 6 weeks because that’s how long each result took or a follow up appointment in the UK to see the ENT surgeon. I had no local to numb the area and each time it got that little bit more painful, in the end he said he didn’t want me to go through anymore. Had the results come back negative I think I wouldn’t have opted for surgery on his recommendation, but just kept an eye on the nodule. but as nothing came back conclusive I had those nagging doubts because of the size of it. I didn’t make the decision lightly but in the end I had to concede.

    I was just getting my thyroid under control and had come off medication so I was heading for remission with GD.But that nodule and the size of my goiter was visible and interfering with swallowing.

    The other things is also FNA’s are good but not 100% accurate so cancer can still be missed. I opted to keep having the FNA in the hope that I would be able to save my thyroid gland as for being without it I prefer to keep the thing under control, now it is totally out of my control having to rely on inadequate medication and crap docs who can’t even read thyroid lab results correctly. I live in hope of convincing my new endo to at least try me on a combo of T3 and T4 which should have been done after surgery when it showed I wasn’t converting correctly it will be 3 years since my surgery this month and still none the better for having it.

    You had no choice and thankfully your instincts paid off, sometimes we do have to listen to our inner selves and go with what we feel is best for us or what we suspect maybe serious even if it isn’t. That is life and it is sent to try us.

    You are so right about the waiting game being the hardest part 6 weeks is a long time to wait for results and 5 times at that. I couldn’t go through anymore.

    Just like Mary I think you are a beautiful writer love what she said and old soul in a young body.

    Lolly

  11. MEL says:

    dearest joanna,
    I know exactly what you are going through i have had my right thyroid lobe taken out when i was 28 due to a nodule turning cancerous then at 30 had the left lobe taken out with the same diognosis.

    When i first found out that I had cancer i too broke down and suffered anxiety attacks and depression. But i was lucky in a way because i had 3 children under 3 which kept me very busy during the day so i wouldn’t think much about it till night fell.

    I am now 31 and have been given the all clear so far and living life to the max and enjoying every minuite of it.
    The next chapter in my life now is trying to get my levels right and learn how to clear this thyroid fog as they say.

    Good luck with everything 🙂

  12. dearthyroid says:

    Hi Mel –

    Thank you so much for your beautiful comment and for sharing more of you with us and with Joanna. I’m so glad your children served as a loving distraction.

    Regarding memory issues; we had a discussion about this regarding one of our community member’s Dear Thyroid letters and there is some great info from other patients http://dearthyroid.org/a-thief-in-the-fog/. Check it out if you get a minute. I’d be curious to know if your memory issues are similar. check out the comments, too. Lots of resources from other patients.

    Please keep us posted on your progress. CONGRATULATIONS ON BEING CANCER FREE!

    Take Care,
    Katie

  13. Cindi Straughn says:

    Joanna,
    Your writing is wonderful…I felt like I was “feeling” your emotions.
    I too love the “puzzle” sentence…and that accurately describes how so many of us feel after our “diagnoses” that change and alter us. Hubby reminds me all the time I just have a “new normal”. But i still whine for the “old normal” some days.
    Thank you for sharing this. It touched me and I would love to read more from you.

  14. Joanna says:

    Mary, thank you so much for your support. And thank you for all you do for us!

  15. Joanna says:

    Thanks, Liz. Diseases change us so very much. Accepting the change is the hard part, in my opinion.

  16. Joanna says:

    Jennifer, thank you so much for sharing! I’m sorry you’re having to go through all this, but I am glad you’re part of our thymmunity! Let us know what we can do to help! Please keep us posted.

    xo,
    Joanna

  17. Joanna says:

    Mel, CONGRATULATIONS on being cancer-free!!!! Thanks so much for sharing. I love what you say about your kids. I think kids are a wonderful distraction. I love being with my niece and nephew because they make me forget I have cancer!

  18. Joanna says:

    Thank you, Cindi. It’s hard to adjust to the “new normal,” isn’t it? It’s easy to look back and pine for the way you once were.

  19. Michelle says:

    Joanna, I totally relate to everything you said. I’m 38 and my thyroid cancer was discovered last Ocotober, surgery 8 weeks ago. My experience feels exactly like what you shared. Our pieces may not fit the same way anymore, but we have new pieces that match others’ on this same journey. Just today I met someone who had a friend with the same thing and even had my surgeon. This weird, unknown territory is more normal when you see others walking it with you.

  20. Joanna says:

    “This weird, unknown territory is more normal when you see others walking it with you.”
    YES!!! You hit the nail on the head. Walking into the unknown is much more bearable when others are walking with you.

    How are you doing now?

  21. HD inOregon says:

    Great letter Joanna!

    You’re not walking alone. The dreaded “C”-word and the thyroid-meds-roller-coaster are easier to bear when you have others that know exactly where you have been. –

    Take care,
    {{{ Hugs }}}

    HDinOregon

  22. Joanna says:

    Thanks, HD. You are so right in what you say…much easier to bear when you are part of a community rather than going at it alone.

  23. Jon says:

    Hey Joanna,

    I think I have read about those symptoms on Web MD. Sounds a lot like senioritis to me. Yep, senioritis. Perhaps you should be posting on dearsenioritis.org.

  24. Joanna says:

    Thanks so much for your support, Jonathan. You’re such a swell guy.

    FYI–Jon is my brother. He likes to tell me I have malignant senioritis. My family and I use humor as a coping mechanism.

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