Jen Mackay from Burra in NSW was 44 years old when she was diagnosed with tongue cancer after repeated visits to her Dentist, GP and an orthodontist.
During a follow up appointment she was told by her specialist that her story was not unusual – most people with Head and Neck Cancer have seen at least four people in the medical profession before finally being referred to a specialist.
Determined to raise awareness Jen is sharing her story as part of Head and Neck Cancer Awareness Month this July. Watch Jen's video or read her story below.
My name is Jen, I’m 44 years old and before June 2022, I’d never heard of Tongue Cancer.
In December 2021, I had a sore patch on my tongue so I went to my dentist. The dentist smoothed off a tooth and advised me to come back if it was still sore. Two weeks later I returned to the dentist and had the same tooth smoothed off again. My tongue healed and I moved on with my life.
In May 2022, an ulcer developed on my tongue, which just wouldn’t go away and was getting increasingly angry and sore, so I went back to my dentist. After looking at the ulcer and my teeth, the dentist recommended I get a crown. This just didn’t sound right to me, so I booked an appointment to see a doctor. The doctor prescribed antibiotics, which I happily took, hoping things would improve.
After the course of antibiotics was complete, things were getting worse, the ulcer had grown and was still very sore. I went to another doctor and was told I was too young and I didn’t met the profile for the ulcer to be anything sinister, so I should just go and get my tooth fixed. Again, this really didn’t sound right as the pain was getting worse, so I sought yet another opinion.
I made an appointment with an orthodontist. By now it was the first week of June. The orthodontist advised me that the ulcer looked nasty and could be cancer. I have to admit, I didn’t take this very seriously – my doctor had told me it couldn’t be anything sinister - but I was happy to get an urgent referral to a specialist, as the pain was becoming an issue, making it difficult to eat.
After receiving the referral, the specialist saw me straight away, he looked at my tongue and said, while he hoped he was wrong, he was certain I had Squamous Cell Carcinoma and the tumour was large. Squamous Cell Carcinoma – that’s cancer – it wasn’t an ulcer - it was a tumour - and I’d need major surgery, urgently.
I don’t think the shock of that diagnoses really had a chance to sink in, as the following days were spent getting a biopsy and going to various scans (PET, MRI). Once the diagnosis was confirmed, there were pre-admission appointments, further appointments with surgeons, the list goes on.
During a follow up appointment, the specialist told me my story was not unusual – most people with oral cancer have seen at least four people in the medical profession before finally being referred to a specialist.
Given the aggressive nature of this cancer, this needs to change.
My scans showed the cancer had spread to the lymph nodes in my neck, but hadn’t spread further. Given the size of the tumour, I was extremely lucky – any further delay and I may not have been around to tell this story.
The worst part was having to tell my parents. My younger sister had only just recovered from major surgery and finished treatment for Breast Cancer and my even younger sister had come through non-Hodgkin’s lymphoma a year before that.
Three sisters, three years, three different types of cancer. It had already been a pretty rough ride for my family and I was about to make it a whole lot rougher.
Less than two weeks after diagnosis, on June 28 2022, I was admitted to hospital to undergo an 11 hour surgery to remove half of my tongue and reconstruct it using tissue from my thigh. I also had a neck dissection to remove the lymph nodes from the left side of my neck.
As part of the surgery, I needed a tracheostomy and a nasogastric tube so I could breathe and get nutrition while I was swollen. I woke up in the Intensive Care Unit and spent 15 nights in hospital.
Once I returned home from hospital, initially I was unable to eat and survived on prescribed nutrition supplement drinks and pain killers. However, over the following weeks, things started to gradually improve, as the swelling went down. My energy levels slowly increased, I even managed to start eating soft foods - like yoghurt and over cooked pasta - and I began to feel better every single day.
I wish this story ended here, however the real cancer battle was about to commence.
Radiation Therapy & Chemotherapy
While in hospital, I was told the cancer was HPV-16 positive and classified as stage 3. I’d need radiotherapy to both sides of my mouth and neck and I’d also need chemotherapy. Around 6 weeks after surgery, I was admitted back to hospital for day surgery, to insert a feeding tube (PEG) into my stomach to support me through the next phase of cancer treatment.
I started chemotherapy and radiotherapy in August, around 7 weeks after surgery.
Radiotherapy for head and neck cancer is extremely brutal and chemotherapy has a bad reputation for a reason.
The first blast of chemotherapy treatment made me very, very ill, however despite being so sick, I still needed to undertake the 1.5 hour round trip to the hospital each weekday to attend radiotherapy. It was horrible and every day was a struggle, but you do what it takes to kill the cancer.
By the second week of radiotherapy, I was again not able to eat and by the third week my mouth and throat were starting to suffer from the side effects of radiation. Again, I was back to surviving on nutritional supplements, this time through the PEG tube as I was unable to swallow without tremendous pain, despite the insane pain medication.
At the start of week four I had a second large dose of chemotherapy, after which I could barely function, but still went to the hospital each weekday for radiotherapy. By week five I was unable to drink any fluids - even water was too painful - due to the ulcers in my mouth and the blisters down my throat. It’s a very strange feeling, being thirsty but being unable to drink and having to satisfy the need for water, using a tube going into your stomach.
By week six I was no longer able to talk due to the swelling and pain, I communicated via whiteboard and ‘text to talk’ phone apps, exactly as I had when I was in hospital with a tracheostomy.
After seven weeks of Radiotherapy, at the start of October 2022, I finished cancer treatment. However, the side effects of radiation continue which meant healing didn’t begin until mid October. I was a broken wreck, but I was extremely glad it was over and I could finally just rest, rather than commute backwards and forwards to hospital.
I am writing this in March 2023, around 6 months after treatment finished and around 9 months after surgery.
While I am now extremely happy to be cancer free, I do experience the ongoing impacts of this cancer and the treatment.
Having half a tongue makes talking difficult. I speak with a pronounced lisp and probably always will. I also can’t feel the reconstructed side of my tongue, which means I need to be very careful not to unknowingly burn or damage it. Talking for long periods is painful and with half a tongue, moving food around my mouth is a challenge. I can no longer kiss my partner properly or stick my tongue out (which is a shame – it’s two different colours, so it would definitely shock!).
The worst side effects though are from the radiotherapy. My salivary glands have not recovered (they may never recover, only time will tell). Saliva is wonderful and undervalued, it helps to breakdown food and assists in the process of swallowing, without it, I find eating very difficult and swallowing is almost impossible, I need water on hand to help the process along. I can’t eat most foods and what I can eat is generally soft. I desperately miss pizza, hamburgers and bacon! I also wake up during the night, every night, with an extremely dry mouth.
I have nerve pain from the surgery and the radiation damage. I have lost 20 kilograms and need to monitor my calorie intake so I don’t lose any more and being unable to eat much, this is a daily battle. I have fibrosis around my neck and under my chin. Half of my face has been aged dramatically in the process of treatment, due to the skin damage radiation causes. I have prominent scars from the neck dissection and tracheostomy and a really impressive scar that runs from just under my hip bone to just above my knee, from the reconstruction site.
Above all, I am very, very tired, with ongoing fatigue being a major issue – I’m yet to return to full time work and I’m unsure when (or even if) I’ll be able to, this has financial implications, which can make things tough.
However, things will continue to improve with time – I’m regularly told that it is ‘early days’ - and no matter what, I’m alive and very grateful to be!
I hope to use my experience to raise awareness of this dreadful disease in both the community and the medical profession, to ensure no-one falls through the gaps and no-one else has to fight to get a diagnosis.
There is no screening for Head and Neck Cancer: early detection is key.
Thanks for reading,
Thank you so much for sharing your story Jen. Learn more:
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