On the day before my daughter's 14th birthday, I'm visiting with my parents when I get a phone call from my doctor's nurse. "Hi Hope. What's up?" I had no worries, for I just had my biopsy a few days prior on my thyroid, and the doctor doing the procedure assured me that the tissue seemed normal. "Anne, the test results came back and you have thyroid cancer. Doctor suggests that you see an endocrinologist as soon as you can, and make it sooner than later." My parents later told me that they saw me turn white when I heard the news. I didn't know what else to do other than hang up and tell my parents the test results. This unexpected phone call left me speechless, and I didn't have sense enough at the moment of the call to ask questions, so I was left at 6:52 p.m. on a Friday evening without any answers until Monday morning. This dreaded phone call is one you never want to receive; especially when it's a rare cancer and past office hours on a weekend!
I don't know how many times I heard people tell me that "I hit the jackpot of cancers" and "thyroid cancer is the easiest cancer to treat with an amazing survival rate!" That can be true if you have papillary or Follicular Thyroid Cancer, but Medullary and Anaplastic Thyroid Cancers are a different ballgame all together. I remember calling a friend of mine who had Papillary Thyroid Cancer, for she was well educated in the different types, and she gave me the information she had. At this point, I didn't know which kind I had, and I just remember her saying that Medullary Thyroid Cancer (MTC) was tricky to control, but do-able. So, when I called my doctor up again on Monday morning, I just prayed that it wasn't the one that started with a "M" or an "A" (I couldn't remember the names then--they were all foreign to me at the time). When I heard Medullary, I again broke down. "Why? Why me?" I couldn't figure out what God's purpose was testing me with cancer. Five years prior, I had lost my 44 year old husband to a severe asthma attack. Last year, I had two total knee replacements. Being a fairly new and young widow and now a single mom with a very small family (my daughter, myself and my parents), I was in panic mode wondering who was going to care for my daughter if I died. My parents are in their late 70's, with their own health and mobility issues, and my daughter was only 14 at the time. To admit it was a very terrifying time in my life is an understatement for sure!
Now I'm the type of person who is terrible with research. Not that I can't do it, I just don't LIKE to do it. So, I put my mom to work helping me research treatments, surgeries, doctors, etc. I was referred to a local endocrinologist, and was fit into his busy schedule immediately. This doctor responsibly admitted that he wasn't familiar with MTC at all and he quickly referred me to Dr. Michael Yeh, the head of Endocrinology at UCLA. I believe this same day was when I joined a Facebook group for Medullary Thyroid Cancer, which I later realized was a Godsend for me. Because of the expertise of the members of the MTC Facebook group, who were all living with MTC, everything started to fall perfectly in place for me due to their recommendations and advice. First, I was told NOT TO PANIC! MTC is slow growing and I had time to do my research and find a doctor from the "Center of Excellence Page" that this group had compiled of expert surgeons that actually knew how to treat this rare cancer. Second, I was given a medical booklet of guidelines that surgeons need to follow to treat this cancer, which was helpful in helping me understand what was going to be happening to me with treatment. Third, many people shared their stories with me, and reassured me that this wasn't a death sentence. Some had been living with MTC for over 40 years, and still felt fine! And most importantly, they referred me to Doctor Julie Ann Sosa, up in San Francisco. She is apparently the guru of MTC in this Facebook group, and everyone referred me to her for her expertise Because of my family situation, I was unable to travel up to San Francisco from Orange County. So, on October 3rd, I decided to send her an email and ask her opinion about Dr. Yeh. "Is he qualified to do the surgery? Is he an expert in MTC? Can you recommend him for this surgery?" I was happily surprised that 40 minutes after I sent my email, she responded: "Dr. Yeh is a friend and experienced colleague. I just spoke with him here at the American Thyroid Association in Washington DC and he has heard about your case." Seriously, what are the chances? I send an email to a doctor I don't know, a total stranger, and she just happens to be sitting right next to Dr. Yeh at a conference in Washington DC as I'm pressing "send" -- and, he already heard of my case? I'm a strong believer in "signs", and I knew at that moment that Doctor Yeh was sent my way for a reason.
Dr Yeh's office was able to quickly get me in for a consultation. At this point, I already had all the blood tests I needed. Everything seemed to be happening very rapidly (appointments set, blood test ordered, scans scheduled) that it actually made me fearful that it was more advanced than I originally thought. My blood work came back with pretty startling results. My Calcitonin was 980 and my CEA was 65.5. I had a 2.2 x 1.5 x 1.4 cm nodule in the mid left thyroid gland. It wasn't looking good. I believe that I was considered Stage 3 at this point due to the size of the nodule. Dr. Yeh performed an ultrasound on me, as tears dripped down my face. There were many lymph nodes that the cancer had metastasized to, that spread down into my chest area. That day I was scheduled for surgery in November, which seemed an eternity away. I wanted the cancer out and I wanted it to happen immediately! Luckily, there was a cancelation, and my surgery was rescheduled for October 30, 2018 -- less than a month away!
Going to work being newly diagnosed with cancer is tough. I teach Transitional Kindergarten, and most of the day is upbeat and very fast paced. I found that every time I had a little "down time", where I could think of my inevitable demise, I would break down crying. I needed to be at home and just try to relax and prepare for my surgery. My principal was so understanding, and I was able to take the week off before surgery to mentally prepare myself for the upcoming surgery in a week.
Finally, surgery day came. My best friend drove my mom and me to the hospital and they both sat for a few hours waiting for Dr. Yeh to come out from surgery. My mom recalls doctor Yeh coming out with a big smile on his face, so pleased that he felt that he got all of the cancer! Out of the 34 lymph nodes I had removed, 17 were malignant. I had a total thyroidectomy and central neck dissection. I was lucky, Dr Yeh didn't feel that I needed to put a drain in my neck. That was a big relief for me! I was able to leave the hospital on Halloween (the next day). At this point, my spirit had been uplifted with Dr. Yeh's satisfaction in the surgery, but I was still scared and would be until I got the blood work results a few weeks after the surgery.
I could go on and on with this story, but I will cut it off here with my current progress and most recent blood work results. As of October 6, 2019, my Calcitonin has remained steadily at
Tags: calcitonin, Cancer, Dr. Michael Yeh, Endocrine, Endocrine Surgery, endocrinologist, Endocrinology, medullary thyroid cancer, papillary or follicular thyroid cancer, papillary thyroid cancer, patient stories, thyroid cancer, UCLA Endocrine Center