My Cancer Chronicles, Volume 1
The origin story
Hi. My name is Katie. Welcome to My Cancer Chronicles, the newsletter I never expected to write.
On January 11, 2023, I was diagnosed with Stage IV Thymoma, a rare thoracic cancer.
Like most people reading this newsletter, I had never heard the word “thymoma” until very recently. When it came up as a possible diagnosis on my recent CT scan, I had to Google its meaning. For anyone else who has tried to navigate the world wide web searching for information on this rare, elusive cancer, I feel your pain. The results are confusing, contradictory and, many times, out of date. Fortunately, I live down the road from some of the world’s leading thoracic cancer specialists, so let me answer some common questions.
1. What is thymoma?
Thymoma is a cancer that originates from the thymus gland. The thymus gland is a small organ located directly behind your breastbone. Before you are born, the thymus produces white blood cells known as T cells. By the time you have reached adolescence, it has created all the T cells you will ever need.
There are only about 200 diagnosed cases of thymoma each year, partly because it has very few symptoms. A cough, some chest pain, maybe night sweats — but nothing extreme enough to concern a family doctor. (More on how we caught my case in a future newsletter.)
Thymoma has both a stage and classification. The classification helps doctors figure out how to attack the cells and the stage designates how far it has spread. My thymoma is classified as B1/B2, meaning the cancerous cells closely resemble normal T cells in terms of pathology, making it more challenging to diagnose. My thymoma has reached stage IVA.
2. What is Stage IVA thymoma?
Stage IVA thymoma tells us that the cells have spread to other organs. In my case, the cancer has spread to my lungs. Initial scans found two “red flag” nodules on my right lungs, but we’ll be doing additional tests in the near future to see just how far it has spread.
I won’t lie, hearing that I have Stage IV cancer was unexpected and terrifying. But my doctors quickly told us that Stage IV thymoma “is not a death sentence” in my case and we quickly came up with a plan to attack the problem.
3. So, what is the plan?
I am insanely lucky. I live down the road from the Inova Schar Cancer Institute, home to some of the world’s leading thoracic cancer specialists. That will be my home away from home for the next few months.
My care team has been assembled and includes oncologists, pathologists, radiologists, cardiologists, neurologists and cardiothoracic surgeons, all of whom are experts at fighting cancers of the chest. We also have a designated Care Coordinator, who works with each team to schedule my appointments and answer all of our questions. She is my new favorite person.
As a team, here’s what we’ve decided:
Next week, I will have additional surgical biopsies on my lungs to see just how far the cancer has spread.
In two weeks, I will have a mediport implanted in my chest to receive chemo.
Over the following six weeks, I will have two rounds of aggressive chemotherapy, with three weeks of rest in between treatment. After those two rounds, we will do additional tests to see if the chemo is doing its job.
A secondary diagnosis that often goes hand-in-hand with thymoma cases is something called myasthenia gravis, an autoimmune, neuromuscular disease that weakens the muscles. My bloodwork has indicated the presence of myasthenia gravis so I’ll work with a neurologist on a care plan for those symptoms if and when they arise.
Once the cardiothoracic surgery team is satisfied with the progress we’ve made, I will have surgery to remove my thymus (the main source of the cancer).
4. What does the surgery entail?
This is where things get slightly tricky. One of the complicating factors in my case is that the tumor has attached itself to my heart. Because of that, I am not a candidate for a minimally invasive surgery.
The surgery I will likely have is akin to open heart surgery. A team of cardiothoracic surgeons and cardiologists will split my breastbone to access the tumor, remove it and close me back up, all without damaging my heart. (I know — so fun.) But first, we need to stop the spread.
5. How are you doing? What can I do to help?
I am honestly doing OK. Once again, I am so insanely lucky. I have an incredible support system in my family, friends, colleagues and care team. My company’s incredible health coverage and generous support has made it easy for me to get the care I need without worrying about anything related to my work or our finances. Tim’s work has been equally gracious with his time, allowing us the space we need to process this news together.
Tim has been my rock. We are currently in planning mode, cleaning and organizing the house as we prep for chemo and surgery. My sweet mom is headed to D.C. later this week to help out as well.
So right now, the only thing we need is love — through happy thoughts, funny cat videos, prayers, whatever moves you. There may be a time when meals or Amazon gift cards become useful, but we’ll let you know through this newsletter when that time comes. We’ll likely send out updates weekly, with family and friends stepping in as needed to take over the keyboard.
In the meantime, thank you for subscribing and for being such an important part of our support team. It means the world to me, Tim and the rest of our family and I can’t wait to celebrate my remission with you.
❤️ Katie
You weren't kidding when we spoke about loving the series, "Wednesday"! Definitely will tune in to your next update to learn more about how Jenna Ortega saved your life. She will want to know too! Thank you for taking the time to write this -- I can imagine how much effort this took but as always, you are prepared with the answers even before I could think of the questions. Much love to you.
Sending love, encouragement, and Hope from across the stage 4 cancer interwebs. My dad just went through 8 rounds of chemo for metastatic bladder tubule cancer from December through February and his scans from last week now show no tumors in his kidneys and lungs.