Jarrod Massuger

In late January 2021 I noticed an ulcer on the left side of my tongue.

I didn’t think much of it at the time and put it down to work stress and having a one-year old. My wife, Julia, says I grind my teeth in my sleep, so I thought I might be catching the side of my tongue. The ulcer healed and disappeared.

But in late March/early April it reappeared in the same spot. 

As a fit, non-smoker with no family history I still didn’t think much of it but I started to develop pain radiating to my left ear and the ulcer grew larger and harder. 

At this stage my swallowing ability was still fine, eating was a bit painful and my speech was a little slurred. Julia suggested I go to see a doctor.

My Diagnosis

I didn’t have a GP as I never get sick, so I googled a bulk billing centre close by and saw a doctor there. 

The GP didn’t know what to make of it, but as it was persistent he thought it was best referred to a private oral surgeon. That call was a life-saver.

The oral surgeon examined my tongue and declared it a 50/50 chance of something sinister. He wanted to do a biopsy straight away and I thought it best to rule out cancer early and move on. When he asked if I wanted a general anaesthetic I thought, “No, how bad could it be?” Bad move! It was really painful under local anaesthetic. There were large needles in my tongue and the back of my jaw, and he cut a 7mm tissue sample from the left side of my tongue. It swelled up immediately.

My tongue swelling from the biopsy was so severe I couldn’t breathe out of my mouth that night. I took a few days off work as my job requires me to talk. I now work as a Sales Representative / Specialist in the Orthopaedic Medical Device Industry and spend a lot of time in the operating theatre talking to the surgeons and nurses as they operate, so I need to be articulate and loud enough while wearing a surgical mask.

At the time, I thought the biopsy was the worst of it done. I still wasn’t losing any sleep.

One week later the oral surgeon’s receptionist called and said I should come in… and I should bring my wife along as well. I dropped the phone. I can’t explain how shocking that was to hear. So we left Mack with my parents and drove into the surgeon’s rooms. As soon as I saw him I asked, “Is it cancer?”, he confirmed it was Grade 3 Squamous Cell Carcinoma. That was June 29, 2021. My diagnosis day.

I think how you react to something like this is independent of yourself, there’s no right or wrong way to go about it. I made an early call to smash it out. Almost immediately I asked, “Well, what are we doing about this? Let’s get moving.” I had cancer, I needed to act swiftly.

The surgeon suggested with this type of cancer the public system is ideal as it requires a Multidisciplinary Team. 

As a former Emergency Nurse, I’m a big advocate for our public health system. I was sent for scans that very day. So instead of going home and talking with my family about it I had a CT and MRI.

I was referred to the team at Monash Health and was seen within a few days. The Monash Multidisciplinary Team was made up of Head and Neck; ENT; Oral Maxillofacial and Plastic Surgery. You see them one after another and they assess you then discuss the next recommended steps. My medical background helped with these conversations, and I was able to explain it all to my wife and family afterwards.

The initial scans showed enlargement of the lymph nodes in my left neck, possibly a cause for concern that the cancer had spread. I had an urgent lymph node aspiration under CT, basically a large needle in the side of my neck. I went into surgery not knowing the results and wondering if the cancer had spread to my lymph nodes, but in the end they were enlarged due to the swelling in my tongue.

I kept working full-time until the day before my surgery, a great distraction. I thought I’d only be off work for three months but that was a bit hopeful…

My Surgery

As it was during Covid lockdown they couldn’t guarantee a surgery date, but as a category 1 patient I only waited two weeks, so July 26, 2021 was my surgery date - I’ve since learned that’s the day before World Head and Neck Cancer Day on 27 July. My tumour was 2.5 x 1.6cm on the left lateral tongue. I had a left tongue partial Glossectomy, tooth extraction and a left Neck Dissection with removal of 29 lymph nodes. In the end I lost 50% of my tongue. I had a flap reconstruction to replace the tongue that was removed, a muscle graft taken from my right calf. I’m left with a large scar that runs from the bottom of my hamstring to the bottom of my calf with a decent divot in my calf.

In the lead up to my surgery I was full of mixed emotions, then my parents told me about an episode of ABC Catalyst: A Story of Hope featuring another young guy who had the same cancer as me. 

I didn’t know anyone who had gone through what I was, so to see him come out the other side looking so well was really helpful and gave me hope. He even talked about eating a cheeseburger at five weeks post-op, so I set myself the same challenge. If I could eat a burger, taste it, and have reasonable speech after my operation I would be rapt.

My surgery, at Dandenong Hospital, lasted 11 hours. Two surgeons from ENT did their thing, then two surgeons from Head and Neck, two from the Oral Maxillofacial team, then two from Plastics. They all do their part and work as a team, pretty impressive.

I had a tracheostomy for ten days which was horrible. It doesn’t actually feel like anything but you can’t talk as it’s below your vocal cords. After surgery they need to wake you every hour for 48 hours to check the graft site and locate a pulse. It’s exhausting but it’s important because if there’s no pulse it may mean that it has failed (which is rare) and you have to go in for surgery again.

I was in ICU for 2.5 days on pretty high pain meds. A few days later with my trachy in and a nasogastric tube for feeding, I used a speaking valve. You start with the valve on for one hour so you can speak, then increase it over time. It’s an exhausting process but once you can make 24 hours with the valve on they remove the trachy. For me that took 10 days and I was stoked to get rid of it. 

After 11 days (the day after my trachy came out) I was discharged home. I was meant to be in for far longer, but the specialists were happy with my progress. I hadn’t seen Mack the entire time, so going home to recover with him and Julia was great.

My Treatment: Radiation and Chemo

The plan was to commence radiation therapy at six weeks post-op: five days per week, 33 doses. It was the roughest thing I will ever go through in my entire life, far worse than the surgery.

The lab results showed that part of the tumour had grown along a nerve. It was described as a finger shape growing out of the tumour, reaching as close as 1.6mm to the resection border. As you need a 10mm clear border of non-cancerous tissue, it meant I needed chemotherapy as well. I felt like I couldn’t catch a break

Before starting radiation therapy on your head or neck you need a dental check. 

Their biggest concern is osteoradionecrosis (devitalised bone due to radiation) of the jaw after the radiation therapy, so it’s monitored closely.

The set up for radiation is pretty full on, a shout out to the team at Peter Mac who looked after me so well. You need a plastic mesh mask fitted tight to your face and you’re strapped to the bed. You get a tiny tattoo in the middle of your chest that is lined up with a laser so that you’re in exactly the same position every time. It needs to be millimetre perfect. I also needed a bite block which is a tube to breathe through. You only have a bell at your finger to communicate and sessions take between 7 – 10 minutes.

As well as radiation therapy my chemotherapy was once per week every Tuesday at Moorabbin Hospital and involved sitting with an IV for five hours.

The radiation has a delayed effect and for the first two weeks I felt fine, even like I could go back to work and trying to eat as much as I could to gain weight. The radiation team said I’d probably need a nasogastric tube because of the side effects so I took that as a challenge.

When the pain from radiation therapy hits it feels like third degree burns inside and out. Also, when I was in the machine, I vomited a lot due to chemo side effects. I was losing weight fast and after two weeks the nasogastric tube went back in.

You need a higher caloric intake than normal even though you aren’t exercising but I got to the point where I couldn’t speak due to the pain, ulcers and bleeding and ended up losing 15kg in about four weeks.

Despite being on high doses of Morphine the pain was intense. One day my Dad was dropping me off for a radiation session and asked if I was OK, offering to get me a wheelchair. I collapsed in the foyer, code blue from pain.

I was readmitted to Moorabbin Hospital for pain relief and was on large infusions of Morphine and Ketamine. It took a week and all of my concentration to get through the last three radiation sessions as I was so sick. I also had to stop chemo due to hearing loss in one ear, a side effect of the chemo drug Cisplatin. So my last chemo dose was a different drug which made me incredibly sick for five days. Due to Covid regulations Julia, Mack and my family could only come to see me at my hospital window, but I couldn’t talk to them anyway. It’s probably the sickest I’ll ever be.

My Rehabilitation

My treatment finished in late October 2021. I still had the nasogastric tube for a couple more weeks then in late November I started on supplement drinks and then progressed to puree foods. 

With very little taste and a reconstructed tongue I essentially had to teach myself to eat again. Now I always have a glass of water when I eat to help me swallow.  

My brother got approval during Covid to come back from Canada in mid-December, so I set a goal that I would eat a burger and have a beer with him on his arrival. And I did!

As soon as I started to eat I felt more energetic, like I finally had some control back and was becoming human again. When I was first able to eat mashed potato and pumpkin I was stoked. 

Pumpkin was the first thing I was able to taste, and I thought it was the most beautiful taste in the world. 

I remember saying to Julia, “What did you put in this pumpkin?”. It tasted so good.

I wanted to get my fitness back, so I started with an exercise physiologist who specialises in post cancer strength training. 

The first time I went back to the gym I was so weak. I couldn’t lift 10% of what I used to. But I kept at it and, once I was eating more, I went from strength to strength. 

My specialists had told me I wouldn’t be back at work for a year, but I returned full time in mid-January after five and a half months off. I wanted to get as close to normal life again as fast as possible.

What Does the Future Look Like?

I now get checked every two months. I go back to the same Multidisciplinary Team at Monash Health. They put a camera down my nose to keep an eye on my radiation scars and have a poke and prod and ask if I have any problems. I will be seeing them for five years. I think we’re so lucky to have access to this type of healthcare.

Financially, all of my treatment was covered by Medicare, but the medications were expensive. Luckily I had sick leave and annual leave owing and my beautiful work colleagues donated a total of a month of their own sick leave to me, I cried when I found that out. My sister Steph and brother Chris also set up a GoFundMe. I don’t even know some of the people who donated – it was really overwhelming. The money meant that we didn’t have to stress about our finances, but it was the incredible waves of support from near and far that got us through.

I keep a close eye on my teeth because I have reduced saliva from the radiation therapy. Dry mouth increases the occurrence of decay, so I use special toothpastes and moisturising sprays as well as visiting the dentist twice a year. 

In April I had a PET and CT scan, and on May 5, 2022, was given the results - all clear! So May 5 is my day.

I can talk like I used to, taste everything and eat anything I want. My quality of life is top notch and I’m very grateful for it. I’m super clear on the important things in life and very proud of how I went about the entire journey. I never had any days where I gave up. I just wanted to keep moving and get past it as quickly as possible. 

I still weigh less but I’m actually stronger, mentally and physically. I feel like I’m a better version of myself.

Thank you for sharing your story Jarrod. 

Jarrod has generously offered to speak to anyone who has been recently diagnosed with Head and Neck Cancer, and especially with Oral Cancer / Tongue Cancer, to share his experience and to support others.  Please contact us if you're interested. 

To learn more about Oral Cancer click here.