Some of the scariest words you will ever hear.. You have cancer. I immediately felt like I just lost the big coin toss. The worst part about cancer is just not getting to know if it is over. The doctors are going to do what they can and put you on watch. It feels like a life of unknown, but a perfect life was never promised anyway right. Life is full of the unknown and no one knows what tomorrow will bring. All that being said this has definitely stopped me in my tracks. It feels like the enemy has breached the castle walls and made its way inside. I feel under attack.
I have Papillary Thyroid Cancer with a B-RAF mutation. When medically minded people here that they say, “You have the best one”. Great news. I have the best cancer (I say lacking any joy). Even though so far I do feel a little lucky in that. From the stories I hear and what I know about cancers now I can feel a little more optimistic for my own outcome. But while I feel a little bit better for myself I feel awful for those who have it worse.
So far my story goes like this. Spring 2018 I had a few swollen lymph nodes on the back of my neck. The area was sore to the touch and something I have never experienced before. I went into to a local clinic to have a look. The doctor thought they were a leftover symptom from a cold but ordered a CT scan to be sure. The lymph nodes were not large by scan standards and shortly after returned to their normal size. While reviewing my scan it was revealed that I in fact had a thyroid nodule. Thyroid nodules are not uncommon, however most people don’t know they have them. By age 60 there is about a 50% chance you will have one too, but about a 90% chance yours will be benign. Hearing this news was bothersome but ultimately fine. After discovering the nodule I made a few appointments and landed with a thyroid surgeon. The primary care doctor I meet with said this was a good idea for tracking the growth of the nodule with ultrasounds and then should the time come this doctor would perform a fine needle aspiration to test the nodule.
After about a year with Dr. Bridget Brady that time did come for me. My ultrasound during my appointment on July 3, 2019 did show some growth. My nodule was a total of 1.1cm (the growth was only .1 of a cm which is very subtle). In order to biopsy a nodule it needs to be over a centimeter and I was just barely over. So the decision was mine to make but of course I was seeking council. Dr. Brady did say if I had a clean biopsy I wouldn’t have to have any more scans for a year. Looking into her eyes we just felt like it was a good idea. A week later I got news that my cells were irregular and my tissue was now being sent in for genetic testing. She gave me at a 40% chance of cancer and a two week time frame for test results.
Life happens when it happens. One week into my two week wait I was set to travel with my husband to Japan. We were planning on dropping our kids with grandparents in Southern California to travel to Japan for a few weeks to celebrate our 10th wedding anniversary. I had a few days to pout and then I had to pack and get us ready to be gone for two weeks. So I put cancer in the back of my mind and asked my doctor not to contact me. I made arrangements to call when I was back in California. Once back in Austin I had an appointment with an Endocrinologist and again with my surgeon. We all decided I would be a good candidate for partial thyroid removal. My cancer is small and seems to be contained. If able to preserve natural organ function I can take less synthetic hormone and it is worth trying. While in surgery the doctors will test the nearby lymph nodes for signs of cancer and then again in a secondary lab in the following weeks. If the first test shows any signs of cancer cells in the lymph nodes then they will most likely opt for a full thyroid removal. It could be that the second test shows something that the first didn’t and that would result in another surgery one day. So this is a risk but one we feel is low probability. (Low probability is apparently as good as it gets in cancer talk.)
Questions People often ask:
Will I go through radiation?— Currently no. We are working with the above plan. If I have a full thyroid removal due to cancer spread then I might take a radioactive iodine. Your thyroid cells (including cancerous ones) absorbs iodine and the radioactive property would kill it off. This would be similar to being near a nuclear blast zone. I would truly be radioactive and in isolation. You must keep away from people especially small children while this is ongoing. But, don’t worry I’m working on my playlist and first up is Imagine Dragon’s…. I’m Radioactive… 🙂
What is the recovery like? — Typical surgery. A few days in bed with medication. Painful neck and throat. An unpleasant week? Risk of voice loss.
Did I have any symptoms?— Of the cancer.. no. I am also taking medication for Hypothyroidism which I felt I experienced symptoms of. Symptoms that slow you down and include; fatigue, brain fog, depression, weight gain, and hair loss. No I didn’t have them all or as bad as others. My TSH levels are higher than we prefer but still just below the line of abnormal. On a scale of 4 I’m like a 3.8 and my doctor says she want to bring me down to a 1.
Why am I not getting a full thyroid removal?— The standard of care around thyroid cancer has been evolving recently. Various clinical studies, including practice at the Mayo clinic have found that the long term prognosis for many stage 1 thyroid cancers is the same with a partial as well as a full thyroid removal so the recommended care is to go for a partial thyroid removal in these cases. It would be nice to be able to get a full removal and then be certain of being cured, but unfortunately it doesn’t work that way. If I have to live with doubt, better to live with the same doubt and part of a functioning thyroid.
Surgery date… September 27th, 2019
See ya on the other side,