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One random symptom led to shocking diagnosis

John McFarlane didn't have the 'usual' symptoms we associate with oesophageal cancer.

John McFarlane, by his own admission, wasn’t a man who liked to bother his doctor. He estimates having only ever been to see one, around three times in his adult life.

However, during Covid, he began to suffer from random episodes of excessive burping. As a sufferer of heartburn all his life, John knew what his triggers were, but these new episodes didn’t seem to correlate with any particular food or drink he had taken.

John’s wife had actually encountered the OGCancerNI stand at Belfast City Hospital and after a chat with some of the volunteers, she came home, urging him to get his heartburn checked out.

He got an appointment with his GP who gave him medication to relieve the indigestion but “looked blank” when John enquired as to what might be the cause. When the indigestion relief failed to alleviate the problem, John’s wife urged him to seek a second opinion.

This time, during a telephone consultation, the new doctor brought John in to see him that day as a matter of urgency.  He checked John over and assured him that it wasn’t his heart. But yet again, had no real answers when John asked as to what the cause was behind these burping episodes.

He did however mention to John that it could be escalated to getting a camera down for a look, but it was November time and John was extremely busy with work, so refused. He does admit though that when he got out to the car, he did feel like it was a mistake, but armed with new meds, he decided to see how things went.

The new year came and as he was still suffering, John decided to bite the bullet and go for the camera test at Belfast City Hospital. They initially unofficially diagnosed him with Barrett’s Oesophagus. However, he later received a letter requesting he come to see the same consultant. When John and his wife arrived, the consultant said he was going to have a nurse sit in on the meeting and when the nurse entered the room carrying a box of tissues, John said that was a “major red flag”.

The consultant told John he had cancerous cells in his oesophagus, something which he described as “completely blindsiding” both himself and his wife.  He said, “At the time, I felt great, bar the burping, I had no symptoms at all, I hadn’t lost weight, I felt fine.” In actual fact, John had weighed himself in the waiting area and his wife, who is a nurse, told him at that stage he was technically obese given his weight and height!

Whilst still coming to terms with the shocking news himself, the next difficult task was telling his two adult children. John said: “My son is a doctor; a research scientist and I rang him that night and told him I had these cancerous cells. When I came off the phone, my wife was standing there, and she said “Why are you saying you have cancerous cells? John, you have cancer” and to be honest, that was the first time that it really hit me.”

“I was referred to Dr Inder Mainie who I was told could do this procedure which had a 97% success rate. However, on the day during the procedure, I sensed a complete change in his body language, and I could see it wasn’t working. He was so determined, but at the end he just completely slumped down. He advised me that he thought it was still early enough for surgery, so that was my next step.”

Dr. Kennedy carried out John’s surgery at BCH and at his three-month post review, he was overjoyed to be given the all clear. However, John couldn’t resist asking what the outcome would have been for him without it, to which Dr. Kennedy replied, “your demise would have occurred within 12 months.”

John is grasping his second chance at life with both hands, he says: “I have a new job, I walk every day and get out in the fresh air. I knew in my heart of hearts that something was wrong, but I suppose like a typical man, I didn’t want to make a fuss. The NHS were brilliant though, every step of the way with me.

“My advice to anyone having any sort of random symptoms is to get it checked out. Listen to your body, you know your body better than anyone else, so if something doesn’t feel right, get it checked sooner rather than later.”

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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