Cancer in the Age of Instagram

This is a story about Jen Taylor, a 29-year-old who was diagnosed with osteosarcoma, a rare bone cancer in her upper jaw. Osteosarcoma usually occurs in long bones like legs. More than 75 percent of cases are diagnosed in people under the age of 25, usually associated with teenage growth spurts.

Jen wrote on August 7, 2022, “Today I became a statistic. A pretty important one. It’s been exactly five years since I waited for the dental specialist to tell me the words I wasn’t expecting to hear: ‘You have cancer.’” Even as her oncologist called her “stoic,” Jen actually had a lot to say and decided to publicize her ordeal through social media.

Initially Jen was diagnosed with an abscess from an old root canal, even though she told the dentist she had never had a root canal. “Now I love my teeth. I take very good care of them…” she said. When an x-ray showed she was correct, they went ahead and did a root canal anyway.

The swelling remained.

Almost two months later, a biopsy revealed a high grade chondroblastic osteosarcoma. Jen is nothing if not sanguine as she said, “I suppose you can’t expect an every day dentist to know how to spot a very rare cancer in a very rare location. I suppose he did everything he could, everything within his realm of expertise.”

I disagree. But let’s give Jen’s dentist the benefit of the doubt. If the nerve of the tooth had tested as “non-vital” and unresponsive, then a root canal may be warranted. If, however, the tooth tested normal, then the dentist should’ve looked a little harder. After all, dentists ARE trained about mouth cancer. 

The first step of her cancer treatment was a grueling 6-cycle, 7-month chemotherapy regimen. This reduces the chances of metastasis and controls the local cancer growth, although ironically, it does nothing to shrink this tumor because it’s in bone rather than soft tissue. 

Jen wrote, “Mouth ulcers are a bitch…you don’t even remotely understand how bad they can be until you have chemo ones!”

One month after chemotherapy, Jen had half her upper jaw removed. And part of her nasal bone. Skin was taken from her back and bone from her shoulder blade to reconstruct the defect.

Several months of healing followed the surgery, during which Jen’s diet consisted primarily of liquid and pureed foods and the use of a kiddie toothbrush. “But I could at least drink beer, thank goodness!” Jen quipped.

Seven weeks postoperative, Jen wrote, “Not being able to breathe through your nose is really not nice even for one day, let alone a year. My mouth and throat are constantly dry and burning. Also my cheek is attached to the flap. So like… Imagine your cheek was superglued to your teeth for most of the top jaw of your mouth (obviously I have no teeth but that’s how far the flap extends). I keep biting my cheek every time I try to bite anything. Added with not being able to open my mouth very wide. Eating is hard work.”

“But I’m alive.”

Three months later MRIs and scans confirmed no tumor reoccurrence. It was time to give Jen some teeth. Using implant planning software and a combination of virtual modeling and a 3D printed replica of her upper jaw, a total of five implants was proposed. Jen had to do jaw stretching exercises daily so she could open her mouth wider for better surgical access.

Two years since her initial symptoms, implants were placed into Jen’s right and left cheekbone and the lower border of her eye socket. A couple of the implants were two inches long! Jen was then fitted with temporary teeth two days later.

Imagine functioning without teeth for over a year. Jen shared, “Occasionally voicing my desperate wish for teeth gets brushed off with an ‘oh, that’s not an issue, teeth don’t really matter, you’ll get them when you get them’. Would they think being without teeth is inconsequential if it were them?” 

Jen appeared on BBC TV to discuss her lengthy and ongoing journey. 

3D printed replica of Jen’s upper jaw

Jen after implant surgery

During the implant healing phase, Jen was fitted with some trial teeth. Disappointed by their large size, she wrote, “You pin all your hopes and dreams on looking a bit more normal with teeth and you see them and all you can think is ‘they’re not my teeth… Who’s teeth are they?’” At the risk of being overly demanding, Jen asked for a revision. When she put in the new teeth, she “really smiled. I felt relief wash over me. The dentist said she was glad that we went for smaller teeth and that she has to remember that they’re my teeth. Maybe the big teeth do look better on paper but it’s important for them to look good on me.”

Dentists have a preconceived ideal of how teeth should look. But not every patient wants to appear Hollywood perfect. Most people just want to look like themselves. In other words, unique.

At long last, months later, Jen got her final teeth. Her reaction was mixed – and complicated. “I used to love my dainty little teeth, my teeth were probably my favourite thing about me, my favourite physical characteristic.” While it may seem like “just teeth,” to Jen it meant so much more. She praised Drs. Andrew Dawood and Hannah Fullerton and the entire dental team for their efforts and fantastic job. She understood that hers was a difficult case.

“There were hugs and photos, they were happy, but no one asked if I was happy… They keep saying I’ll just get used to whatever they give me so I guess that’s the end of it.” Jen was struggling, trying to come to terms with everything that had happened.  

Perhaps she put it best: “It’s natural to grieve the person you’ve now permanently lost.”

In November 2020 Jen learned that her cancer had returned. And it was aggressive. She would lose her right eye the following Monday. 

The cancer progressed opportunistically near her sinuses and northward toward her brain. Technically Jen was a five-year “survivor,” but she acknowledged, “The truth is that I am on my third diagnosis, my cancer incurable, my last grasps of treatment palliative, in the worst pain I’ve ever been in.”

On September 8, 2022, Jen posted, “I haven’t died yet…” along with this wonderfully optimistic photo.

Author’s note: All photos courtesy of Jen Taylor. Go to https://thecancerchronicles.blog/ to find out more about Jen. She’s also on Facebook at https://www.facebook.com/thecancerchrons and Instagram @jen_eve.