Papillary Thyroid Cancer

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Papillary Thyroid Cancer
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    I'm new here!

    Hi, my name is Carli. I was diagnosed with Orthostatic hypotension in 2017. I knew I had it - my spouse was diagnosed with MSA in 2010. His main symptom has always been OH. My doctors searched and searched for answers to my OH - and all they could find was a hypertrophic adrenal gland, which they tested over and over again. My cortisol and ACTH was dreadfully low, and my endocrinologist decided to do a carotid artery ultrasound on my neck. They found nodules and biopsied them. They turned out positive for Papillary thyroid cancer, and I had surgery. 2 years later, my diagnosis has changed - from OH to POTS. Before my surgery my heart rate hit 176. Now, my high is 118. Still working on it. But I’m thankful my doctors never gave up! My symptoms were total exhaustion, hot and cold, and weight loss. They’re the same symptoms my spouse has, with MSA, and now I see the progression. POTS, OH, MSA. Best, Carli

    #MightyTogether

    #OrthostaticHypotension

    #ThyroidCancer #POTS

    #PapillaryThyroidCancer

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    🌈Silly Topic Of The Day🌈 What would you want to find at the end of a rainbow?🌈

    <p>🌈Silly Topic Of The Day🌈 What would you want to find at the end of a rainbow?🌈</p>
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    1 Week Later

    <p>1 Week Later</p>
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    Mutations and variants

    It seems that the further down this journey I go the darker the tunnel gets the dimmer the light seems at the end of the tunnel. Is there even an end to the tunnel anymore? First I was diagnosed with #PapillaryThyroidCancer , (okay, lies, first it was Lyme disease.... that was wrong) - it's a slow growing lazy cancer they said. After my thyroidectomy, I was told that maybe it's a little worse than that, but it'll be okay still.

    The pathology report comes back that my cancer is tall-cell variant (TCV) with a BRAF mutation. This means that my is more aggressive, grows faster, and has a higher reoccurrence rate. Oh, and it's metastasized to a few lymph nodes, maybe further, we don't know yet.

    Variants and mutations, and now I'm waiting to schedule radiation. I do research, cause I've learned through this process that I have to know all the facts, I have to know what all the pathways are in front of me. Somehow that knowledge makes me feel like I have even a tiny bit of control over my own health. I'm in a pretty small percentage, and every time I receive results back, that percentage seems to get smaller. Unfortunately it's not the same percentage as the x-men, and the radiation won't turn me into a superhero either.

    So then some bloodwork comes back, and my levels are all off. And I can tell, it's easy for me to notice when I'm in a hypothyroid state. My tumor markers are much higher than they should be post surgery. Another sign of an aggressive, mutated, variant, metastasized, not going to go away forever monster inside my body. But maybe for a little bit I'll get a break from it, maybe the radiation will work, maybe the whole body scan will show it hasn't spread past my lymph nodes... maybe. That's the dim light I'm seeing right now.

    Ryan Buckley

    My Thyroid Got Cancer

    My thyroid got cancer some time ago. The doctors can’t say when because there was no way to determine a growth rate. It might have been thirty years ago when my throat was X-rayed during a bout with really bad  croup , but nobody knows. On January 29, 2017, a  talented surgeon  removed my cancerous thyroid. For those of you following me professionally, this was four days after Scripted’s final layoff, when we went from  15 down to 6 employees . For those of you who know me personally, this was also two months after my second daughter was born. When people notice the scar on my neck, I tell them that my thyroid got cancer, that I had it removed, and that I’m OK now. My prognosis was and still is very good. The cancer my thyroid got,  papillary thyroid cancer, is probably the least scary of them all. It’s still cancer though, and cancer sucks. I hadn’t had a physical in a couple of years when I went into the doctor’s office last November. My last physical was two years earlier, when my first daughter was born. I wanted to make sure then I was in top form. I also saw a nutritionist because I was working out a lot and gaining weight. My conversations with him led to my  Huffington Post piece  about the benefits of sleep. I changed my diet, the loose fat went down, and the muscle I’d built up stayed. I felt much better. In fact, since my first daughter was born two years ago, I’ve been on a two-year-long running and pull-up binge. I feel better at 34 than I did at any point in my twenties. On my 34th birthday my wife bought me some nice size 34 jeans. I had a 36 waist for so long I didn’t realize that all of my pants were too big. As we prepared to welcome my second daughter to our family late last year, I chose the primary care doctor at the local center that was available at my preferred time slot and headed in for my physical, expecting only good news. The first part of the physical was routine. There were no problems with my blood pressure, and I had no pains or other ailments to mention. Then the doctor began to palpate my neck. This is the technical term for the awkward neck massage I recognized from past doctor visits. The doctor was feeling for enlarged lymph nodes and kept returning to the left-middle of my neck. With an inquisitive look he pressed a little harder, trying with both of his hands. “I’m pretty sure you have a nodule on your thyroid,” he said. “They’re very common, and it’s probably no big deal, but I’m going to refer you to get an ultrasound so we can measure it and see if it’s solid or fluid.” I left that appointment disappointed and anxious to google what the heck a thyroid nodule is. I confirmed what the doctor told me: they are common, almost always benign, and therefore nothing to worry about. A few days later, the woman who ran the ultrasound machine told me the same thing. I remember also talking to her about my new daughter, how strange it is to have two kids, and how happy we are that we left San Francisco and  landed in Walnut Creek . After a few minutes she let out a small sigh and told me that the nodule is solid (not a great sign) and 2.4 cm wide (also not great) but again said it’s probably nothing. Most people develop solid thyroid nodules at some point in their life. A biopsy was required though, and she described the fine needle aspiration procedure they’d do to see if my thyroid had cancer. It was raining when I drove to the sprawling facility in Martinez that houses the endocrinology department.  My dog Blue  stayed in the back seat of the Camry, fogging up the windows as I scurried across the parking lot to the main entrance. Walking through the facility I saw a lot more signs about cancer and patients who looked more infirm than at the local hospital in Walnut Creek. It was clear this facility was for more specialized, serious problems. I met my endocrinologist and had another round of casual introductions. I normally dislike small talk, but I was getting good at it. It helped calm my nerves, too. This doctor was also very friendly and told me how rare it is for these biopsies to turn up cancer, especially since I had no hypo- or hyperthyroid symptoms. I hardly felt the needle as it went into my neck. She took several samples and sent me on my way. The rain had stopped and Blue greeted me with a wet kiss and a thumping tail against the seatback cushions. How could I get bad news now? I thought. Blue would have known if something terrible was about to happen. I went to a nearby shopping center and found a Round Table Pizza with a pizza and salad buffet. It’s not something I’d normally do, but why not, I figured. It’s not like binging on cheap pizza is going to change anything now. A couple of days later, on my BART commute home, standing with one hand in a stirrup and the other thumbing through my iPhone, I got this message from the endocrinologist. If you want to know what it’s like to be told there’s cancer in your body, here you go: The moment I found out my thyroid had cancer. I wonder how common it is these days to receive shocking news while completely surrounded by strangers. I couldn’t gasp, break down, or ask for a hug from someone. Instead I swallowed the news, hard, and switched over to mobile Safari to google this new term that I would get to know very well: papillary thyroid cancer. What I read was relieving, for the most part. I probably wouldn’t die from this but I would need to have a major surgery to remove my thyroid. Without a thyroid, I would need to take a replacement hormone pill every day for the rest of my life. A small price to pay, I suppose, to prevent my thyroid’s cancer from spreading anywhere else. I stared blankly out the window for most of the ride home. I inspected the people around me, curious if any of their body parts had cancer too, or any terminal illnesses in general, or if any of them got worse news than I did today. If they did, they didn’t show it. I tried not to show it either. On the two-mile bicycle ride home from the Lafayette BART station I started thinking about how I would tell my wife and the rest of my family, especially my parents. I was already much calmer, almost at peace with it. The crisp winter Contra Costa air was pacifying. It always had that effect on me as I cruised home on the slight downhill grade from downtown Lafayette deeper into the suburbs. I told my wife, after our kids were in bed, that the biopsy results came back and that I got the best of the bad news. “Jesus Christ,” she said when she read the message on my phone. She too swallowed, hard, and held back tears. “Well, let’s get this taken care of as soon as possible,” she said. I scheduled my surgery for the following week. Even though my thyroid was safely removed, I still can’t say with certainty that the rest of my body is cancer-free. I may never be able to say for sure. A nearby lymph node got some microscopic cancer, which isn’t great, but doesn’t change my prognosis. The cancer data say it’s very likely that was the only place it went beyond my thyroid. Still, for the rest of my life I may have trace amounts of papillary thyroid cancer cells traversing their way around my body. If they land somewhere, I’ll just have to hope it’s a place easily accessible where my doctors can see or feel the growth before I have any symptoms. My family has been touched by cancer many times. Several men in my family have had cancer on their prostates. Another family member survived cancer on his kidney. Sadly, my aunt recently died from multiple myeloma, a cancer in her blood, that she battled for several years before she died. Cancer is random and it can be vicious. Fortunately it is also very well studied and expertise is available if you need it. I’m humbled by the fact I survived a thyroidectomy only because an untold number of people died from thyroid cancer or from complications due to this surgery when it was a new procedure. I’m also lucky to have seen a primary care doctor who felt my thyroid nodule through my skin and freckles with his bare hands. The facility in Walnut Creek has three doctors who perform somewhere between 50 and 100 thyroidectomies a year. My neighbor, a radiologist, told me head and neck surgeries are among the most difficult because this region of the body is compact and complex, with major nerves and blood vessels running everywhere, connecting your brain to your lungs and heart. A surgical mistake can be devastating. I was glad we had this conversation after it was done. I couldn’t help googling some pictures of thyroidectomies and confirmed it’s miraculous how a surgeon is able to peel a thyroid off of a windpipe with only a two-inch incision. When I had my post-op appointment with the surgeon a couple of weeks after my surgery, I shook her hand and told her that I appreciated her work, that it was amazing what she’s able to do in such a small space. She laughed and said the scar is small because the skin is very loose and stretchy around the neck. “You’ll discover this when you’re older,” she joked. Yes, when I’m older. Because this isn’t going to be what kills me. I’ll still get to watch my daughters grow up. I’ll still have a long career in both the private and public sectors. I’m fully, 100 percent recovered from the surgery now. I take that little pill first thing every morning and don’t think about my thyroid again until I wake up the next day. There is an impact, perhaps subconscious, in my transparency in writing and talking about business and personal matters. I have less patience for correctness around what should or should not be said. I seek truth and want to share it whether it’s comfortable or not. Since there’s a lot of posturing about entrepreneurship and I’ve had some interesting experience with it, I’m writing more on that topic now. My life after Scripted will likewise be a little bit edgier, riskier even, but an embodiment of the way I value my time and the life that leads me to live. I got some bad news that day on BART, but it could have been much worse. It could have been really, really bad. I can’t help but play that mind game: what if my thyroid’s cancer was late-stage, metastasized, already in my blood, throat, or lungs. What would I do differently in my life right now? The answer, honestly, is not much. For that I’m very grateful. This post was originally published on Medium. We want to hear your story. Become a Mighty contributor here .

    Ashley Ross

    Receiving the News That I Likely Have Papillary Thyroid Cancer

    A little over a month ago, I turned 30. It was a quiet, simple birthday, and I told myself I was going to have a great year. I have a new job I love, I’m a member of several groups working to make a positive change in the community, and I’m relatively healthy, or so I thought. Less than a week ago, I received the news that I likely have papillary thyroid cancer (PTC). In two months, I’m having surgery to remove the left lobe of my thyroid as well as the connective tissue, called the isthmus. Hopefully nothing has spread to any lymph nodes, which would complicate things a bit. Really, all of this began a year ago during a routine checkup by an endocrinologist, recommended to me by my former boss. She decided to perform an ultrasound on my thyroid because I have Hashimoto’s and I’d never had one. The doctor found a small nodule with some calcification, and sent me to get a biopsy at a clinic I wasn’t fond of, and whose reputation was poor. I fought with her to get my records because she refused to refer me to a world-renowned cancer clinic right down the street from me. So, I referred myself and an appointment was scheduled for two months later, in April. Another ultrasound was performed along with a biopsy, and the results came back as non-diagnostic without anything alarming present. The clinic scheduled me to come back in a year for a follow-up. Several months ago I noticed my voice was becoming a bit hoarse. I’m a docent at a local museum; when I would end my tours after an hour or so, I could barely speak. I very rarely had trouble swallowing my medication or food. I didn’t think anything of it until my checkup in June. Since the last ultrasound, the nodule grew and developed some “worrisome characteristics.” Another biopsy last Tuesday yielded results suggestive of PTC. By Friday, I was scheduled for a pre-op appointment and surgery. I didn’t cry until yesterday evening. For a week, I’ve been on a vicious rollercoaster of emotions. First, shock and disbelief, followed by anger, sadness, and fear. Sometimes, they hit me all at once without warning. Despite the fact that statistically at my age, this is a highly treatable form of cancer with an excellent prognosis, it doesn’t come without risks. The chances of recurrence aren’t non-existent, and all surgery comes with potential complications. Acquaintances and friends have said things like it’s the “good type of cancer,” “at least you don’t have to get chemo,” or even “you’ll be fine.” Not only did comments like that anger me, they made me feel guilty for even being upset in the first place — almost as if I don’t really have cancer because it isn’t as deadly. Thankfully, my husband, close friends, and family are extremely supportive. I hope if you’re reading this and you’ve recently been diagnosed with PTC or are awaiting results that you know you’re not alone, and whatever you’re feeling, whether it’s anger or sadness or fear — it’s perfectly OK. There’s a great online support community at www.thyca.org. There, you can find information on thyroid cancer types, stages, and treatments. The next two months are going to be nerve-wracking, and I’ll probably have several more bad days. But I’m determined to make 30 an amazing year, cancer diagnosis or not. We want to hear your story. Become a Mighty contributor here . Thinkstock image by NanoStockk