Stories

This is Susan Vujcich's story. Susan is from Northland and was treated in Auckland last year after a tortuous path to diagnosis. The photo is of Susan not long after her treatment ended.

In June 2017,  I was diagnosed with squamous cell carcinoma of the lymph gland, secondary to a suspected primary cause in the throat.

Path to diagnosis

Cancer was not new to me.  In 2010 I was diagnosed and surgically treated for early follicular neoplasm of the thyroid resulting in a total thyroidectomy. That previous cancer experience proved to be a walk in the park compared to this latest journey I have been on.

I remember the day my diagnosis was given to me. I felt numb and completely devoid of emotion.  In fact I laughed with my GP at the absurdity of how many different types of cancers a person could get in their life.  I realise now that I was actually in complete shock at the enormity of what I was faced with. It was some months later before I could allow myself to cry.

I had first noticed a lump in my neck.  I thought it must be a swollen lymph gland due to a virus I’d picked up.  I monitored it for some months thinking that I would ask my GP about it on my next routine visit.  

In hindsight, I should never have delayed getting this checked out.  When I showed it to my GP she thought it was probably just a reactive lymph gland and nothing untoward, but due to my history,  she would arrange an ultrasound. This took some weeks before I could get an appointment.

The result of the ultrasound was that it warranted further investigation with a biopsy, leading to a months-long wait that that appointment.  

The result of the biopsy was squamous cell carcinoma.

Thereinafter followed a chain of events that was not for the faint-hearted.  It was a whirlwind of procedures over the following months. 2017 was to become a year to write off and the hardest challenge I have met in my life to date.

I was already recovering from elective abdominal surgery in June and was still fairly immobile. However, it became a priority to find the primary cause of my cancer. Following my biopsy, I had a PET scan in Auckland which showed avidity (uptake of glucose)  in the throat and right neck area.

I had a full  bilateral tonsillectomy, pharyngoscopy and further biopsy at Whangarei Hospital in July 2017.  

Unbelievably the results did not show any cancer.  

I was therefore referred to Auckland City Hospital multidisciplinary meeting  (MDM) with an “unknown primary” cancer. The MDM was one of the most daunting experiences I have experienced in my life but the panel of medical professionals were very thorough and completely focussed on finding the primary site of my cancer.  

During a very prolonged and uncomfortable scope of my still-recovering throat, one of the professionals spied an abnormal vascular pattern on the right base of my tongue.  

I was to become very thankful for their thoroughness that day, because a further biopsy, and reanalysis of the entire previous tonsil specimen by the Whangarei Hospital, found the primary site in the right tonsil.  Hallelujah !

I was fully diagnosed with T1 N2b P16 positive squamous cell carcinoma of the right oropharynx in August 2017.

Treatment

Next I heard my treatment plan.  I was to have chemoradiation therapy in Auckland City Hospital.  My thirst for knowledge had me researching all available avenues for information regarding what I was up for. I firmly believe that knowledge is power.

Joining The Head and Neck Cancer Support Group on Facebook gave me a wealth of knowledge from previous patients, survivors and carers of head and neck cancer patients with cancers exactly like my own.  

I discovered I needed to expect one heck of tough gig.  

On 4 Sept 2017, I commenced 35 fractions of radiation (over 7 weeks) and two cycles of Cisplatin chemotherapy (final dose omitted due to concerns around hearing loss).  

The treatment was gruelling and the side effects were horrific.  I developed terrible anxiety, not lessened by the claustrophobia I experienced from having to wear my mask every day whilst in the radiation bunker.

The anxiety really affected me.  I was away from my home and farm, husband at times, my three school age children, and I severely doubted my mental and physical ability to get through my treatment.  

Thankfully my wonderful extended family recognised my lack of strength and came from afar (Tasmania and Gold Coast) They, along with my husband and a psychologist appointed to me by the hospital, took me under their wing and pulled me through.  

There was lots of mindfulness and meditation needed and a concoction of antidepressants, anti-anxiety and sleeping tablets taken.  It had basically come down to whatever I needed to pull myself through the next seven weeks.

I felt disconnected from life itself; it was like a living nightmare. Nausea from the chemotherapy and side effects from the anti-nausea meds were the first hurdle, followed by taste changes and metallic mouth.  Then came the pain in the throat from the radiation burn, ulcers, no saliva, mucositis, constipation, weight loss and exhaustion.

With dogged determination and a raft of morphine based painkillers I kept on eating through the pain, such was my aversion to the thought of having a PEG feeding tube inserted.

Recovery

I left Auckland for home on 20 October 2017 without a PEG tube but a wreck and very worried that I would have a serious addiction to morphine,anti-anxiety meds and sleeping tablets.  The next two weeks were my worst of the whole treatment phase. I basically lived on sips of Ensure and water. I lost more weight. My total weight loss was 10Kg (from 58kg – 48kg).

Little by little, day by day, week by week, the pain subsided, my energy levels improved and I could eat little bits of soft food. My post treatment checks with Oncology went very well. They were very pleased with how well I’d pulled through.  My PET scan at three months post treatment showed no avidity and Oncology were very pleased to inform me that I am, at this stage, 100% treated.

I am now starting to patch my life back together.  I have put on a kilo of weight and am now eating a wide variety of food.  The pain in my throat is now non-existent. The lack of saliva continues to be a problem though and is possibly with me for life.  

So armed with a water bottle wherever I go and salt and baking soda mouth rinses still my best friend, I have a newfound motivation to achieve new things.  I have joined the local gym, taken up a dance class and enrolled in distance learning University study. Life is good post-treatment and post-cancer.

What caused it?

I am left pondering how on earth I ended up with cancer in my throat/neck from the HPV virus. I have been in a mutually monogamous marriage with my husband for 29 years.  I certainly knew that the HPV virus can cause cervical cancer in some women and I was in agreement that our daughter should be vaccinated against it when called up at high school.  

I did not know that HPV is the cause of some throat and neck cancers.   I did not know that HPV is so common that almost every person who is sexually active will get HPV at some time in their life if they don’t get the HPV vaccine.  I never knew that most people with HPV do not know that they are infected and never develop symptoms or health problems from it.

I guess fate had it that I was one of the unlucky ones.  My diagnosis and treatment were life-changing.

Paying back

I now recognise how precious life is and I feel blessed that I get another shot at it. I am keen to assist in being an advocate for the HPV vaccine in both boys and girls in NZ and in becoming a mentor for future HNC patients.

For me, during this phase of my life,  knowledge was strength. If I can impart some of my knowledge learnt during this period to others, then it will be very rewarding.

Diana Ayling

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