Patient Stories

David Eaves Story - a member of the OPA Leeds Branch

Click here to read David's Story in a PDF document.

Keeping it in the Family

Can examining family history bring improvements to patient outcomes in oesophageal cancer treatment?

David Eaves is a member of the Leeds branch of the Oesophageal Patients Association since October 2012.  Here he discusses his experiences, his work, and a topic close to his heart: whether there are hereditary factors.

I underwent my surgery in Leeds in June 2012 following diagnosis in February and treatment in April and May.  Classic symptoms (difficulty swallowing, having to bring it back up, hiccups, pale appearance due to massive iron loss, fatigue) actually began in the previous October, and I knew then what they were and what it meant. Nonetheless, I didn’t want to be undergoing treatment over Christmas, because my mum was coming to visit from Stornoway where I grew up and she still lives.  I managed to conceal the symptoms during Christmas dinner, which was quite an achievement.  But how did I know, and why would I go to those lengths?

In August 2009, Dad died from oesophageal cancer.  Symptoms first presented earlier in the year but not knowing what it was (and being a Scottish man in his late 50s, not wanting to bother the doctors), he tried to manage the symptoms himself – cut food up smaller, chew more times before swallowing, eat more slowly, change diet.  Eventually it could not be self-managed, prompting in November 2006 a call to NHS24 (the Scottish equivalent of 111), an overnight hospital stay for monitoring, and tests the next day.  Diagnosis was essentially immediate with a “terminal” prefix shortly after, but he stubbornly took all the treatment offered to him until two weeks before he died, when he wrote his final diary entry “No more chemo”, the last day of my holiday back home, and the last time I saw him.

Of course, it made no difference what time of year it was when I’d tell Mum that it was my turn.  It is still the single hardest thing I’ve ever had to tell anyone, and because she was 500 miles away it had to be over the phone.  A lot less than ideal.

Thoughts invariably turned to what caused it.  Random bad luck?  Chernobyl, since the fall-out in 1986 affected the North West of Scotland?  Lifestyle?  Hereditary?  I asked at clinic and it was thought then that no, it wasn’t.  My tumour was right at the oesophago-gastric junction and Dad’s was further up, and if it was hereditary it might have been expected to have been closer.

Since my involvement in the OPA, though, I’ve come across many more people who have relatives who have been affected.  A retired magistrate in London whose father sadly succumbed many years ago, who himself has had successful surgery in the recent past and whose son was at that time facing treatment; a lady from Lincoln whose mother had been ill and whose daughter was suffering from Barrett’s; and word just a few hours before beginning to write this of a recent patient in North Yorkshire whose brother was facing surgery too.  Are we the unlucky families?  My father’s uncle died long before I was born.  In those days cancer wasn’t as openly discussed as now.  Was that cancer and what kind was it?  My brother was recommended by a GP friend of mine to have a pre-emptive endoscopy.  He hasn’t, but his GP knows that if he feels one is needed it will be prioritised.  We know that for many cancers there are known and definitive familial links, including breast, ovarian and stomach cancers.  Is it the same for oesophageal cancer, so closely related as it is to stomach cancer?

Statistically we have less-than-fantastic survival rates.  If you’re a patient who’s survived surgery and are still going through the mill learning how your new “you” copes with what used to be the most simple of things, you are one of the extremely lucky and successful ones, even if it doesn’t feel like it.  I know this, all too well, but it isn’t always easy to believe.

Because of these survival rates and the poor detection rates for oesophageal cancer, especially historically, there might not be as much information that would help or have helped those of us who have had family members go through this before us.  If data were collected when our mothers or fathers or aunties or uncles were diagnosed, it might not be that vast or of good quality.  I don’t think there’s ever been enough of us to be studied.  But the data are there now and both quality and quantity have been improving year on year.  If a study is done and a familial link found, our sons and daughters, nieces and nephews should be able to benefit from earlier intervention.

Every visit to an NHS or NHS-funded service results in vast amounts of data that are collected and collated by NHS Digital(1), the part of the NHS where I now work.  The data are used for many reports and statistics, never attempting or needing to know who any of the individuals are.  But research organisations and charities and other organisations can apply to have data sent to them for specifically agreed purposes and under strict conditions, including length of time the data may be used and stored.  Under certain restricted conditions, where individuals in studies have consented(2), data for these patients can be sent encoded in such a way to allow these organisations (and only those individual organisations for those specific purposes) to identify those patients (and only those patients).  Hospital data, in-patient, out-patient, emergency care, maternity care, mental health data, prescribing data, births data, mortality data, a patient’s entire journey through the NHS, and only ever those who absolutely need to know, and are legally permitted, being able to determine who those people actually are.  The possibilities are vast.

One important use of these data, and most relevant to us, is Clinical Audit.  Every year CARMS, the Clinical Audit and Registries Management Service in NHS Digital, collects and collates data from many sources for audits for many different areas: the National Diabetes Audit, the National Bowel Cancer Audit, Pulmonary Hypertension, Out-of-Area mental health Placements, and of course the National Oesophago-gastric Cancers Audit (NOGCA).  Because of the similarities of stomach cancer and oesophageal cancer and their treatment regimes, these two are studied together.

NOGCA collects data from all patients diagnosed with OG cancer and links it to other data, such as mortality and chemotherapy data.  This rich data source is analysed and report published each year.  Over time, this audit has led to improved practices at hospitals where cancer treatment takes place: centralisation of cancer services was supported by audit findings; standardising of treatment plans; two or three rounds of Chemo- or chemo-radio-therapy prior to surgery; all supported and driven by clinical audits, improving patient outcomes.

The latest annual report was published recently and is available, along with previous reports and other resources, on the NOGCA website(3). Some key findings include:

  • There is a need to investigate how to improve early diagnosis and investigate the reasons for high rates of diagnosis after emergency admission. (4)
  • There is still a need to improve times between referral and treatment (5)
  • CT scans have increased, as have PET scans as EUSs have decreased, though with some regional variation (1)
  • There are regional differences when comparing the number of patients with a curative treatment plan and those who have surgical records, and with the rates of palliative patients receiving the best supportive care (2)
  • More patients, where suitable, should receive chemoradiotherapy rather than just chemotherapy before surgery.  Other countries’ studies have shown this to have some benefit.  A study is ongoing in the UK (3)
  • There is still a high standard of surgical care in England and Wales (4) although with a rare increase in 90-day mortality in one area. (5)

By examining previous reports and data it’s possible to see how the improvements in practice recommended by these audits are improving patient outcomes; for example:

  • [Comparable statistics from previous audits]

These reports are, of course, generally aimed at the clinical community and for nearly everyone reading this (apologies for the sweeping assumptions) they will be difficult to understand.  The charts are also unhelpful if you don’t understand the specific data behind it and what they mean, so please don’t start looking at them and start panicking.

A welcome innovation for the 2017 report was input from patients and a dedicated patient-focused supplement.  This report is available on the NOGCA website.   The latest at the time of writing is still the 2017 one; the 2018 patient report is not yet complete but will be released in due course.  The OPA are developing stronger links with the audit and hope to be able to influence additional areas to study through increased patient experience feedback.  You can begin to take part now by discussing this in your regional meetings and emailing OPA.AuditFeedback@icloud.com.  CARMS have indicated they’d be willing to talk to other regional meetings about the audit, and I would be happy to discuss how we as patients can help.

Links

NOGCA main website [https://www.nogca.org.uk/]
NOGCA 2018 Audit Report [https://www.nogca.org.uk/reports/2018-annual-report/]
NOGCA 2017 Audit Report [https://www.nogca.org.uk/reports/2017-annual-report/]
NOGCA 2017 Patient Report [https://www.nogca.org.uk/reports/2017-patient-report/]

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(1) in full compliance with all laws and guidelines; primarily for patient care but also for payments, costings and performance
(2) Patient Objections. For more information, please see http://nhs.uk/your-nhs-data-matters
(3) Relevant weblinks are available on the OPA website.
(4) NOGCA 2018 p39, Key Finding 2 and recommendation
(5) NOGCA 2018 p39, Key Finding 3 and recommendation
(6) NOGCA 2018 p43, Key Findings 4 and 5 and recommendations
(7) NOGCA 2018 p49, Key Findings 6 and 7 and recommendations
(8) NOGCA 2018 p50, Key Finding 8 and recommendation
(9) The report does not cover Scotland, Northern Ireland, Channel Islands or Isle of Man
(10) NOGCA 2018 p55, Key Finding 9


Ceri's Story

My partner Neil and I, went travelling around S America for over 4 months to celebrate his retirement as a GP. Just before we left, Neil went down on one knee and proposed, so suddenly we were planning a huge wedding as well as our great adventure. It was a wonderful trip which we labelled our ‘pre-wedding honeymoon’.

During our travels, I started getting problems swallowing food, and returning back to the UK, this became quite frequent, so we decided I should see my own doctor. She immediately referred me for an endoscopy at our local Exeter RD&E hospital, and the story begins.

Whilst taking the endoscopy examination, the physician also took a small biopsy from the base of my oesophagus which was tested and confirmed that I had oesophageal cancer. It’s a funny feeling because, in a way, I’d already guessed. My mother died of throat cancer when I was 20 and I was identifying similar problems, so the diagnosis confirmed my suspicions. I’d suffered from reflux most of my life, so I was aware that my oesophagus was being damaged in some way.

Now!! The wedding? We had 220 people, some of whom had booked flights from as far as Australia, USA, Uruguay and more. We couldn’t cancel, and we didn’t want to. No matter what state I was in, we decided the wedding would go ahead.

As the wedding day approached, I couldn’t believe how well I felt. My medical ‘team’ were all very happy with my fitness levels at the start of all this which was a great help apparently. I had chemo every Tuesday and radiotherapy 5 days a week, Mondays-Fridays.

The day of the wedding was the happiest day of my life and the most successful wedding. I was marrying this wonderful man I’d lived with for 7 years and we felt the whole world was happy for us.

I feel very lucky to have my new husband Neil holding my hand though all this. My 2 children have been wonderfully supportive, as are all our family and friends. The medical staff all through have been a fantastic and cheerful support and became so excited about our wedding. I’ve also met some lovely fellow cancer patients who may become friends when all this is over. I hope so.

Life is most definitely for LIVING!!

Maggie Haynes

Can you remember what you were doing 10 years ago in January 2007? Well I certainly can; I was organising my own funeral!

In the previous September, aged 39, I was diagnosed with oesophageal cancer, after having difficulties with swallowing and was given the 3 possible outcomes: do nothing and I would have 9 months to live; if chemotherapy was the only other option, then I could have 18 months; if I were to be a suitable case for surgery....then who knows!!

I ended up having chemotherapy and then lifesaving surgery at Colchester General Hospital. I thank God, I’m still alive albeit with certain limitations regarding energy levels. I’ve also had to make some quirky little lifestyle adjustments but, in the grand scheme of things, that’s nothing compared to what the outcome could have been!

I always knew I’d do a fundraising event to celebrate 10 years post-surgery and came up with the idea of holding an afternoon tea. On the 21st Jan 2017, 100 friends joined us to mark this fantastic occasion. There was a glass of fizz to welcome all our paying guests then I did a little talk about my diagnosis and treatment. My husband spoke about the support we received from the OPA and St Helena’s hospice based in Colchester. Our local hospice offers therapeutic intervention which is what I benefitted from. The hospice is also a place for the living as well as ensuring a ‘good death’. Attending the hospice empowered me and gave me the confidence to start building a future for myself and my husband, albeit on my long road to recovery.

We also attended the OPA meetings at Guys Hospital where it was beneficial to meet other people in my situation and exchange coping strategies etc. My fundraiser was a way to raise the profile of both these charities because without fundraisers and other forms of giving these charities may well struggle in the future.

Our guests were served a selection of different filled sandwiches accompanied by endless cups of tea using lovely bone china. Numerous homemade cakes were followed by scones with clotted cream and jam accompanied by live background music and lots of chatting and laughter. After an hour or so, the remainder of the afternoon was rounded off with an extensive raffle and an auction.

None of us know what’s around the corner health wise and even if you believe you’re fit and healthy sometimes a curve ball is thrown and you’re trajectory in life changes. As a Christian, I had a lot of prayer and support which got us through a lot of tough times plus I feel my positivity and having had a good wholesome lifestyle helped me come through.

SIBO - Small Intestine Bacterial Overgrowth - Brian's Story

I had the SIBO breath test under Dr Jervoise Andreyev at the Marsden in October. It confirmed small bowel bacterial overgrowth. A short course of antibiotics (Ciprofloxacin – no side effects suffered) almost immediately cleared all the debilitating symptoms I had suffered in the 18 months since my Ivor Lewis operation and adjuvant chemotherapy. I entered into a brave new world, free of abdominal pain, bloating, absence of appetite, irregular bowel movement and persistent weight loss. Seven weeks later, I remain free of symptoms: should they recur, they should again be readily treatable.

The reversal is remarkable. My weight had fallen from 92 kilos to 58 kilos. Appetite collapsed. Malnutrition was severe enough for enteral feeding and a stay as an in-patient to be necessary. I had a bout of pneumonia and chest infections, and persistent abdominal pain. I am now eating hungrily, and am pain-free with normal bowel movements.

What may, perhaps, also be of interest is that the recommendation to see Dr Andreyev came from a consultant in a quite different field (a cardiologist, in fact) at a different hospital. It may be that my case is exceptional. But the SIBO test is so simple, and the result can be so life-enhancing, that it seems remarkable that such gastroenterology is not better known.

SIBO Follow up - from the Chairman

This is wonderful news for you, Brian, and thank you for sharing it with us.

In fact, two of the OPA’s committee (both oesophagectomy patients) have recently been battling similar symptoms and both of us have been diagnosed with SIBO. I started with prolonged severe diarrhoea episodes in November 2012, accompanied by bloating, vigorous churning and gaseousness in all directions – my wife described my abdomen at night as like the Olympic stadium while Mo Farrah was running!

Yet another Committee member, another oesophagectomy patient, had had similar symptoms ten or more years ago and his had been sorted (without this diagnosis) by the antibiotic Ciprofloxacin. My Doctor agreed to my suggestion that we try it too, and it worked, but not for long. Over a few months I became antibiotic dependant, with symptoms returning very quickly at the end of each two week antibiotic course.

In the end, after it was agreed that SIBO was the cause, it was sorted by an aggressive campaign of three different antibiotics, continually over three months, Ciprofloxacin, followed by Doxycycline and then Erythromycin, the latter to be accompanied by the prescription probiotic, VSL3. After that I was encouraged to undertake the (rather onerous – but successful, in my case!) FODMAP diet, to remove any foods that would ferment if the bacterial imbalance persists.

I personally believe that there is another factor at play here. There is some evidence out there, I believe, that it is the long term heavy use of PPIs such as Lansoprazole and Omeprazole that may contribute to, or even cause, the bacterial imbalance in the first place, by subduing stomach acid to the extent that there is no control on those bad bacteria! There is no way I could stop using PPIs, nor would I want, but I have settled down, comfortably, to one Omeprazole MUPS 20mg tablet each afternoon.

So now, since August 2013, I have regained digestive stability and I am just crossing my fingers that this will continue!

Patricia Massey

Hi my name is Patricia Massey, I’m 78 and live in Sneinton, Nottingham. I help run the Nottingham OPA in the Maggie’s centre at the city hospital, every third Thursday of the month.

In 1995, I was enjoying lunch out with a friend, when my food got stuck, wasn’t choking, but could feel it. My friend pointed at me and said “go and see a doctor”, I said “why”, “just do” she told me. So, as I live next door to the surgery, I went in, the doctor saw me straight away. He sat there looking at me, I thought, he thinks I’m mad. “Take this to the hospital now” he said, “now” I said, “yes now!” he said.

So off we went to the hospital, I was told there was a 6 week wait for tests. But the next day I got a phone call, to come straight in. This was the end of April, they did lots of tests, it was now they told me I had oesophagus cancer, I didn’t know I had a oesophagus, to me it was my gullet. I was booked in for 22nd May, had my op on the 26th. It took 11 1/2hrs, was cut from the middle of my shoulder blades, under my left arm and finished under my bust, and down the front, I lost nearly all my oesophagus, 3/4 of my stomach, my spleen, and a rib. Was in intensive care 12 days, then onto a high dependency ward and finally on to a normal ward. Home June 17th.

The only information I was given, was stop eating before you feel full, because 20mins later you will feel full and be ill, and don’t drink with food. Also you can’t lay flat in bed, try and be propped up. I didn’t know when I was feeling ill it was dumping syndrome. I could never gauge when I was full, so had dumping syndrome a lot. When my husband died, my son who is a landscape photography, said “mum if I go anywhere do you want to come”, to which I replied “I’d love to.” This year we had two weeks in the Lake District, and two weeks on the Isle of Skye. I met some great people and made many friends, including my special friend Mary.

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