Name: Nicola Packer

Lives: Hampshire

Diagnosis: Barrett's oesophagus then oesophageal cancer 30 years later.

Firstly, thank you for the opportunity to share my story with you and I hope this helps provide some perspective on life with a long term health concern.

By way of a back fill, my name is Nicola Packer and I am a 55 year old mother of two – so far so normal!

Some 30 years ago I was diagnosed with Barrett's Oesophagus, Reflux oesophagitis and a Hiatus Hernia.  This diagnosis was reached after many years of extreme heartburn and reflux. 

I was put on Omeprazole and Gaviscon which increased slowly in volume and strength over the intervening years.  In truth I don’t know whether I was young and therefore invincible, didn’t ask the right questions, or whether there simply wasn’t the information out there but I did not particularly change my lifestyle or worry excessively.  Eating spicy food late was never an option for me and I found “sticky’ foods |(bread, pasta, pastry) irritated my reflux so I ate less of them but never avoided them.  Symptoms carried on pretty much this way for many years, my pregnancies had a negative effect on my ability to control my reflux but, again, I did not radically overhaul my lifestyle.  

Approximately 6 years ago, during one of my routine endoscopes, it was noted that the Barrett's affected section of my oesophagus had changed and it was classed as low grade dysplasia.  I was told not to worry but this is a pre-cancerous condition and it was not a given that it would progress to this.  Endoscopes were stepped up to twice yearly (from once every two years) and we continued in this rhythm for the next 4 years – until it was decided as there was “no change” we would reduce them back to annually.  Again, no massive concern from my end, and I carried on as I always had done.  If I was desperate for that piece of cake I knew there would be a trade off later on in terms of reflux and heartburn.

This all changed at the beginning of 2021 when I went in for a belated endoscope (delayed due to the pandemic) and reported that I was having a few “choking fits”, I coughed a lot and was feeling lethargic, sick and generally a little under the weather.  I reported for my endoscope at 8am and by 10am was told I had a tumour in my oesophagus which was highly likely to be malignant and I would need treatment as soon as possible.  

Fast forward two years to now and I am cancer free – having had daily radiotherapy for 6 weeks, weekly chemo for 6 weeks and a full Ivor Lewis to remove my oesophagus to fashion a new one from my stomach – a massive operation which took nearly 8 hours.

If I could re-live those early years I would definitely proceed in a less cavalier way.  I would be far more strict on my food intake – eating many more wholegrains and much less processed food, eating little and often and paying more attention to how different foods affected me.  I would have regulated my weight far more closely to reduce the strain.  Simply put I would not have accepted this as “my lot”.

I do not want to concern anyone reading this that my outcome of a cancer diagnosis is inevitable and I do not believe that if I had behaved radically different I wouldn’t have got cancer, but I would urge each and everyone to talk to their health care professionals and please do take the very best care of yourself.  There is so much information available for this condition (please be wary of your source – Dr Google is not the answer), there is a strong and flourishing network of support groups where you can get information readily – both for yourself and for anyone who is supporting you and in these groups you will find like-minded people who can share real life experiences and hints and tips.  I learnt, for instance, that papaya is great at controlling heart burn (I cannot explain the science behind it but it just works!).

Persistent heartburn is not just the price to be paid for a late curry, please note your symptoms and present them to your GP and get help.  It may be surprising to hear this, but I consider myself one of the lucky ones – I was already on the “radar” as it were so I was diagnosed at a relatively early stage.  We all know that prevention is better than cure, but we also know that our best chances of survival are early diagnosis and treatment.

With the benefit of hindsight and having got age (and perhaps a little wisdom?) on my side I think I have a duty to raise awareness and help ensure those who follow on from me are equipped with the knowledge to make good informed decisions and not ignore your unpleasant side effects as part and parcel of life.

Pictured above is Nicola's husband Jeremy and their children, Lulu and Freddie. 

Association with HCUK:

Nicola was operated on by Professor Tim Underwood, Surgeon and HCUK Clinical Trustee, and his team at Southampton General Hospital.  Nicola attended and presented at the iCAN event in 2022 with Tim and our Operations Manager Fiona.  This event was mainly attended by Pharmaceutical companies and the purpose was to raise awareness of oesophageal cancer and the impact the disease has on patients.   Nicola is also a member of the Barrett's, Stomach and Oesophageal Cancer Support group (BSOCS) and has shared her journey with the group previously.