Suzanne’s lump in her neck – lymph node and tonsil cancer

My Lymph Node and Tonsil Cancer Symptoms

In 2018, I had a lump in my neck which turned out to be the secondary cancer, my primary tumour was in my left tonsil and the secondary with in one of my lymph nodes. I had a biopsy and a scan through my private medical insurance and wasn’t initially told what type of cancer I had. but was immediately referred into the NHS system.

My Diagnosis

My NHS consultant confirmed that I had indeed got lymph node cancer and this was a total shock as I was told that this was the secondary and that they needed to find the primary. A camera was inserted through my nose and down my throat to locate the tonsil cancer (known as a nasendoscopy). We were introduced to lots of people who included; oncology consultant, maxillofacial surgeon, dietician, head and neck nurses, speech and language specialist and we didn’t really know what all these people were about to do! We didn’t know anything about tonsil cancer but we were in a whirlwind of activity. We were in shock.

More appointments followed for PET scans, mask fitting and dentists where I was to have most of my bottom teeth removed.

My Treatment

I was informed that I would be having radiotherapy and chemotherapy after I had had a neck dissectomy and tonsil removal operation that would last 9 hours. The PET scan had shown that I had cancer under my tongue and at the back of my nose as well as in my neck and my tonsil. Fortunately during surgery it was found that these were anomalies in PET scan, but I had a nodule in my chest, hence why I needed radio and chemotherapy. I was to start that 2 weeks after I had had my teeth removed.

Having my teeth out was done in 2 stages, the 9 hour neck dissection surgery was a dream compared to the teeth removal! You have to have the teeth removed due to the damage that the radiotherapy does to your jaw and so this a preventative measure to avoid future problems.

My radiotherapy was done on a daily basis and I had chemotherapy weekly. I was also asked if I would have laser treatment in my mouth as part of a research project to tackle the Mucositis which is caused by the radiotherapy. Every day I put my make-up on and I went to the hospital for my treatment. I felt terrible but people thought I looked really good despite the treatment!

It was a very stressful time for all the family with all the things that were going on alongside my illness.

3 weeks into my treatment I had to have a nasogastric feeding tube fitted as I couldn’t eat properly. I had mouth ulcers and my throat was showing signs of burns from the radiotherapy. I had so many different medications to help me cope with the treatment, for things like swallowing, ulcers and other side effects. Mucositis started after 5 weeks of treatment and this was “horrific”, as your body produces this green mucus that you want to get rid of as it smells disgusting.

Post Treatment reflections

When I finished my treatment I thought I would start to feel better but I didn’t, I went downhill! My consultant and nurses were fantastic but I became so ill I was nearly hospitalised because I was sick so much and lost so much weight. My husband and my mum were the greatest nurses and got me through it by doing my feeds and my meds. I slept most of the time for 5 weeks after my treatment whilst my body healed itself.

After 3 to 4 months, I started to see light at the end of the tunnel. I had lost well over 4 and a half stone in weight. I had hope. I’d been positive throughout my treatment and I think that is the one thing that got me through it all. That positive outlook really, really helps. I went through some very dark days post treatment. I was extremely weak from the lack of nutrition but I made the effort to get up in time for my sons coming home from school and my husband coming home from work.

Once the mucositis started to subside, my eating improved and I started to get stronger. I couldn’t use the pump with my feeding tube, I had to have my husband syringe the feed through the tube. My first “meal” was a teaspoon of yoghurt and that was such a relief from the tube. The salvia glands weren’t working and my taste was wrecked. Every day things would taste different. My speech and language therapists were incredible to help me recover and my husband had 6 months off work to look after me.

My medical team were amazing throughout and even now they keep in touch 4 years down the line. You have to do your exercises on your swallowing and tongue even though you are so weak, but they are vital to you getting back to “normal”. Whilst it was a terrible experience, I’m still here and I have experienced so many incredible things with my family since my illness. I am so thankful to all the people who helped me and I want to help others who are going through a similar journey.

Advice for Patients and Carers

My advice to everybody is to do regular checks and that if you find a lump, get help quickly. It doesn’t matter that you may think you’ll be wasting someone’s time, it’s worth getting a pharmacy, dentist or GP to look at you. If you’re still not happy, get a referral to a specialist such as Ear Nose and Throat doctor or Maxillofacial surgeon.

For those going through the treatment, keep positive and you will get better. There may be a new normal for you, but you will get through it. Use the full medical team around you and always have someone with you at your appointments as there is so much information given to you and things to remember that it helps to have some else remember what was said. Take a notebook to make notes to help you remember what was said.

Above all, stay positive, you will get there!