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Persistence Pays Off For Oesophageal Cancer Survivor

Like thousands of other people, Lorraine Pinkerton had suffered from heartburn and acid reflux on a regular basis. But when

Like thousands of other people, Lorraine Pinkerton had suffered from heartburn and acid reflux on a regular basis. But when her heartburn began to be more persistent than usual, Lorraine began to make regular trips to her GP surgery, and it was her persistence that was to prove vital.

 “I have a long history of oesophageal reflux,” said Lorraine, “and I also have a hiatus hernia, so by the time I was diagnosed with oesophageal cancer seven years ago, I had been on medication for maybe ten years. I also had the camera or scope test done several times. 

“The scopes weren’t done on a regular basis; I wasn’t brought back routinely for them, but over the course of 2012, my reflux symptoms had got worse and had become more persistent. I went to my GP because it didn’t seem to be settling and he sent me for a scope test, where a camera is put down your throat and into your stomach. It came back totally normal.

“Despite the fact that the test put my mind at rest that there was nothing sinister going on, I was still badly affected by the reflux. Over the course of the next year, I gradually had more and more symptoms, so I had done things like adjusting my diet to really bland food and cutting out wine because it was irritating the reflux. Then, in August 2013, I started having really bad indigestion and really bad burps. The indigestion pain was also going into my back, so it was obvious that the reflux was progressing and not getting any better. The following month I started getting pain when I was swallowing. The food wasn’t sticking in my throat, but it was causing me pain as it was going down. 

“I went back to the GP because I was getting anxious about it and also I was getting closer to a long-haul holiday and was concerned that I couldn’t go that far because there was definitely something not right.”

Lorraine, 66, from Moira, had every reason to fear that something was wrong since, almost twenty years before, she’d had to battle breast cancer. 

“It happened when I was forty,” Lorraine said. “We have a hereditary gene in our family – the BRCA gene – and unfortunately a few of our family had died of breast and ovarian cancer, so I was actually being seen regularly to get checked out. As a result, the breast cancer was picked up really early, so I was very lucky.”

Lorraine’s GP tried to reassure her that it was very unlikely to be anything sinister as she’d had a normal scope less than a year ago. However she remained convinced that there was something wrong and repeatedly went to the surgery. Her persistence was to pay off.  

“The GP said it couldn’t be anything serious because I’d had a scope, so we tried a different medication,” she said. “The following week I went to another GP and they more or less said the same thing. The main things they were going by were the scope and the fact that the food wasn’t sticking. Three times I went to the GP and three times that was their response, but eventually, on the fourth occasion, I was referred for a scope. By the time I went to the scope my food was sticking, so it had obviously worsened over a short period of time. 

“When I had the scope in October 2013, I suppose at the back of my mind I expected that there was going to be something, but when the scope was done, rather than telling me at the bedside what the result was, they took me into the office. Then my husband arrived and I just knew. They’d found quite a big tumour in my oesophagus.

“I went home in a bit of a blur. There was such a sinking feeling. One of the hardest things with oesophageal cancer is that they do a lot of tests before they say what stage it’s at and whether they can treat it. I’m the sort of person who, even if there’s something wrong, I can cope with it if they need to do something, but for a few weeks it was one test after another. It felt like an eternity. It also occupied my mind 24 hours a day because I couldn’t sleep either. When you don’t know what’s going to happen, you just feel that your life is on hold.

“For quite a while they didn’t know whether it was going to be curable or not. And there were also some queries about node involvement, so that was tough. Then the word curative was used – which meant that it could be cured – and that just changed everything.

“Before I heard the word ‘curative’ I was in an awful state and so was my family, but once we knew it was curative, I just went back to being more myself and I just thought, ‘Bring it on, let’s get this sorted’. Once I had the information I knew that, although it was a dreadful situation, I could not only work with it but fight it.

In February 2014, Lorraine had an oesophagectomy, in which her oesophagus was removed. Prior to the surgery, she underwent two lots of chemotherapy, which enabled her to swallow again. Seven years later, Lorraine has been signed off by the hospital and is in remission. 

“The thing about oesophageal cancer is that a lot of people don’t know about it,” she said. “Despite the fact that I had a nursing background, I knew nothing about the disease and had never known anyone, who had experienced it. 

“I really think that people need to know that if they think there’s something wrong, then they need to persist. The thing is at the minute people are so reluctant to go to their GP and bother them, but I just definitely persisted. My motto is that if your symptoms are persistent, then you must be too. If your symptoms keep coming back, then you must keep going back to your GP.

“Oesophageal cancer is on the increase and, whereas before the disease was typical of a man in his sixties, a lot of younger people are getting it now. More people need to be made aware of oesophageal cancer so that those affected have a better chance of survival thanks to early diagnosis. It’s also vitally important that family members bring it to the attention of anyone they see in the family, who is experiencing the symptoms that affected me.” 

For further information go to ogcancerni.com, follow #OGCancerNI, call 07568 157450 or make an appointment to see your local GP today.

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Information for Supporters

OGCancerNI were unfortunately informed about a cyber incident involving Beacon, the third-party system that we use to help us manage our donors' and supporters' information. Beacon published its Final Cyber Security Incident Report on Thursday, 3rd September; for further information, see https://www.beaconcrm.org/incident-report.

In August OGCancerNI reported this matter to the Charity Commission for Northern Ireland as a serious incident. We're sorry this happened. We want to explain what we know and what it may mean for you.

What Happened?

Beacon informed its customers that an unauthorised third party had gained access to its systems and that data held within the system may have been accessed and copied. The incident occurred within Beacon's systems, and OGCancerNI itself was not individually targeted. Beacon CRM holds 1,500 charity accounts; all have been impacted.

What information may have been involved?

This information may include your name and personal contact details, donation information and information contained in records or attachments held within our Beacon database.

Please note that we do not store any bank or payment details in Beacon, nor do we store any specific clinical information. However, we may record you as a patient or a volunteer.

What has OGCancerNI done?

The Trustees have been working to establish exactly what happened and the potential impact on the people whose information we hold.
We have reviewed the information provided by Beacon and the Charity Commission, sought independent professional advice, and reported the incident to the appropriate authorities.

We have engaged an appropriately qualified Data Protection practitioner and have assessed the potential risks and have taken immediate steps to prevent further unauthorised access.

We are also reviewing our own procedures and our continued use of Beacon.

What should you do?

We recommend you remain alert to unexpected emails, text messages or phone calls.
Do not click on unexpected links or provide personal information to anyone.

If you receive a communication claiming to be from OGCancerNI and are unsure whether it is genuine, please get in touch with us directly using our usual contact details.

At present, we are not aware of any evidence that your information has been used fraudulently.

We understand this information may be concerning. OGCancerNI take the trust placed in us very seriously, and we are very sorry that information we hold about you may have been affected.

If you have any questions or concerns about this incident or the information that OGCancerNI holds about you, please get in touch with us at [email protected] or by phone at 07568157450.

We will continue to review the situation and will provide further information if anything significant changes.

With best wishes

The Trustees
OGCancerN

Read Beacon's final incident reportClose