My health journey: battling a rare desmoid tumor that stumped the Stanford medical board
The ups and downs of my battle against a rare, aggressive desmoid tumor and where I am today (*spoiler alert, I started writing this story and recently had my one-year MRI — the tumor is back and growing.)
I was 23, and health-wise seemingly on top of the world. I had just graduated college and was already situated in a full-time job. I was living at home, with plans to move out and get an apartment with my boyfriend, Billy. When suddenly the world seemed to halt and I was diagnosed with a tumor growing in my neck — a desmoid tumor. What.
Rewind to around May of 2017. My family and friends noticed it first. When I was turning my neck, I wasn’t actually t u r n i n g my neck. I would turn my entire body. If I were to look at something to the right of me, I’d physically shift my shoulders and body to the right. It wasn’t until someone pointed out that I realized I was doing this. If I were to check my blind spot in the car, I’d physically lift myself over to see behind me.
So I went to a chiropractor to deal with my stiff neck. I found a woman named Dr. Char and she was glad to help. We tried neck adjustments, icing, and buying a new pillow which greatly helped in the immediate.
Fast forward to my annual visit to the ob/gyn in August 2017. It was the usual examination until my doctor checked my thyroid. He (yes, I have a male gyno) palpated my neck and asked me to swallow. He couldn’t feel my throat move as I swallowed which is something you should be able to feel. I felt my neck too — it was hard to the touch, nothing like the right side. I had never noticed it. I got some blood work done to look into any thyroid issues, and the results came back normal.
The mass started growing and Dr. Char pushed me into seeing an ENT. At this point during our visits, she noticed how much my body was overcompensating for not being able to move my neck properly. My head quite literally swiveled and leaned to the left (picture a globe).
I made an appointment soon after. The mass in my neck was definitely palpable now, even visible. The ENT ordered a CAT scan to see exactly what this thing was made of. Nope, not composed of liquid which is characteristic of a cyst. We were entering tumor territory now and cancer was a viable possibility.
I went through a series of needle biopsies. Usually, you’d need one to figure out if the tumor was benign or not but no, my little tumor was stubborn af. They kept numbing, poking, scraping but couldn’t get the definitive sample they needed. After the third try with a more experienced practitioner, we got a sample — the results came back benign, rejoice! Given the sheer size of the tumor and placement in my neck (hello, very vital veins and arteries), the ENT referred me to Stanford hospital. Honestly, he was probably a little afraid of it and I’m so glad he was.
Come around October, I was finally able to have my consultation with Dr. Lee (my bad-ass Stanford otolaryngologist). I was feeling okay, I had noticed that I was always feeling so tired and wasn’t working out as much because of it. But I walked into that office chipper as can be, ready for next steps on how to remove whatever the hell was in my neck and get on with my life. I went to the appointment alone, and wouldn’t ever return to her office alone until a year later.
Dr. Lee reviewed my scans and actually showed them to me. The tumor was HUGE and my neck was not a big space to occupy such a thing. What was more shocking was that she had told me that cancer was definitely not out of the picture; the previous ENT should have never ruled that out. I broke down sobbing with my heart beating so fast it felt like it was going to jump of my chest. Dr. Lee suspected it could be a case of Kikuchi disease, which is a benign lymph node condition often found in young, Asian women. Cancer was still on the table.
I’ve known a few people who’ve battled cancer, my mom being one of them. Not only has she survived breast cancer, but kidney cancer as well. She’s the one I leaned on most during this process and knowing she kicked cancer’s ass twice made me feel a lot better and her knowledge of medical jargon was comforting.
Next steps? An MRI to get a better picture of this thing to determine if it was my lymph nodes or not. Spoiler alert it wasn’t! Following that was a surgical biopsy to actually go in and grab a piece of the tumor.
The surgical biopsy was performed in December 2017. My family and I anxiously awaited the results so we could know what we were actually up against.
No cancer! But what in the HELL was this thing? It was benign and made up of scar tissue? I was officially diagnosed with a desmoid tumor. According to the Desmoid Tumor Research Foundation, “In the United States, approximately 900 people are diagnosed with desmoid tumors every year. This means that out of a million people approximately 2–4 people are diagnosed with desmoid tumors each year.” Dr. Lee and her colleagues had never seen this before. Which is really just the weirdest thing to hear. I crave structure and knowing and even my Stanford doctors didn’t know? Sick.
Dr. Lee went to the Stanford tumor board to figure out the best treatment plan for me. Radiation therapy and surgery were the top two options, but these types of tumor often occurred in the body of people who had colon diseases. So alas, I was 23 and got a colonoscopy. (Another fun part of my health adventure! Drinking that gallon of bowel prep stuff was such a painful process. It was like warm air syrup that made you nauseous. Pro tip: mix with Gatorade, found this out after a liter and 2 hours of crying). But hey, my colon results were *all clear, literally. (*bad pun, couldn’t help it.)
In the meantime, my tumor grew rapidly. It was definitely visible by then, jutting out the left side of my neck. It was the size of a damn grapefruit (see photos below). Blood flow to my brain was restricted (hence the fatigue and lightheadedness) and there was a shooting pain that ran up my neck thanks to the tumor quite literally rubbing my nerves the wrong way.
One breakdown moment I distinctly remember was walking with my boyfriend, Billy, around our new neighborhood. (Oh yeah, we moved in together while this was all happening!) I had made it a block before I got tired and started breathing heavily; I got upset and started crying. I couldn’t do the simplest things, my body wasn’t working with me, and no one knew why — which was by far the scariest part.
Dr. Lee, along with a neurosurgeon who joined my case, moved toward attempting to remove the entire tumor sooner rather than later.
The day for surgery came in March of 2018. I felt good and ready to rid this thing and was confident in my medical team. It was expected to be around 2 hours and my whole family was there to support. My incredibly comforting anesthesiologist gave me a “fun cocktail” and I was out like a light.
I woke up in the Post Anesthesia Care Unit (PACU), and there weren’t a lot of people around. A nurse checked on me and called Dr. Lee in. I was coming off anesthesia and confused, but something else just didn’t feel right. My parents came in and I will never forget the broken looks on their faces. Turns out, my three hour surgery turned into a whopping 12 hour one. Three times longer than the average heart transplant. My doctors explained they had removed nearly all of the tumor (microscopic pieces aside) as well my jugular vein. I also had a couple of blood transfusions and they had managed kept all vital structures intact. My neurosurgeon had stayed the entire time, which even Dr. Lee didn’t expect so shoutout to Dr. Nelson.
The next five days in the hospital were rough. To sum it up: I had two tubes draining fluid coming out of my neck, looked like a 70s slasher film victim, Billy spent the first night with me in this weird hospital basement because no rooms were available in the first two nights, was so so nauseous from the medication and painkillers, passed out during an x-ray and triggered a code-something-or-other, used a bedpan (read: my greatest nightmare realized), ate a lot of Jello pudding, had family and friends visit, and eased my way into standing and walking after four days of bed rest.
Honestly, the worst part came a few days after I was released from the hospital. I will keep this brief. Oxycontin is no joke and neither is coming off of it. This was singlehandedly the most painful thing I have ever experienced, aptly titled by me: “World War Poo: Fecal Impaction.” My best play on words, ever. And now I can never breakup with Billy after this experience (joking, love him).
Over the next several months, my body started to bounce back. My scar started to heal, I got MRIs that came back clear at the one-month, three-month, three-month, and six-month benchmarks. I was left with Horner’s syndrome, which caused my left eye to be super droopy but HEY, the tumor was gone and time heals. I could breathe again, and I mean like really breathe. I felt okay.
Fast forward to an MRI I had a couple months ago, just before the one year anniversary of my surgery. Something finally appeared back on my scan. It’s not a cause for worry just yet, but I’m back on a three-month MRI cadence. We’re monitoring closely, but I’m finding comfort in knowing the surgery will never be as intense as the last one. Next steps are exploring radiation therapy to see if it’s at all possible to avoid another surgery.
Looking back, I definitely should’ve given myself more time to heal. I was just so eager to feel normal again. I should’ve taken another week off work, beyond the two I had scheduled. Also should’ve gotten a second opinion after seeing that first ENT who botched 2 needle biopsies. But things were progressing quickly and I wasn’t confident in owning my health, luckily I ended up in the right care.
Today, I feel great: I’m working out and can manage cardio more regularly. I just turned 25. I have the most solid support system around me, shoutout to my family and friends. I’m ready to face whatever this wild health journey throws at me.
If you or anyone you know is battling a rare tumor like mine, please feel free to reach out. I’m happy to chat through my experience, you’re not alone.
P.S.S. graphics for my Medium page are hand drawn & designed by my talented best friend, Trudy. Check out her website to see more of her work.
My health journey: battling a rare desmoid tumor that stumped the Stanford medical board
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