Zebra stripes are used in the logo for the Neuroendocrine Tumours (NETs) patient support group. Why?
“If you hear hooves don’t automatically assume it’s a horse. It might be something else like a zebra,” says Mark McDonnell, who was finally diagnosed with NETs in 2011.
“That’s what we’re asking consultants to consider when making a diagnosis – could what the patient has be something more rare like a neuroendocrine cancer? If you don’t suspect it you can’t detect it.”
Many of the symptoms of NETs cancers are similar to conditions like irritable bowel syndrome (IBS) or Crohn’s disease – diarrhoea, gas, stomach cramps – and patients, on average, can see three consultants before they get the correct diagnosis, Mark says.
Mark McDonnell with RTE's Tommie Gorman
“Early diagnosis is key, as with all cancers. Doctors are trained to go for the obvious and if something is obvious you go for the obvious solution, but unfortunately we really need them to think outside the box. Many of the rare cancer support organisations use the zebra symbol for that reason,” he adds.
Late diagnosis is a huge problem with this disease, he states.
“Over 50% of people have stage four by the time it is diagnosed, which means the cancer has spread. Once that happens it’s not curable. You manage it and hopefully you have a long life ahead of you and there are great medicines out there, but you have it for life.”
Delayed diagnosis
Mark, a semi-retired software engineer, is chair of the NETs patient support group and soon to be president of the International NET Alliance.
He was finally diagnosed with neuroendocrine tumours on his liver in 2011 after the illness wasn’t properly diagnosed and followed up on in 2002 during a routine medical. He was 46 at that time.
“I had a routine medical through work and they noticed that there was a problem with my liver function tests so I went to a specialist and was referred on to another and various tests were done. I was told I had a fatty liver, that it wasn’t working perfectly and it was left to my GP to monitor, but after a while I lost touch because there was no change (I had no symptoms).
“In 2011 I had an issue with my toe and went to my GP and in recounting my history, I mentioned the liver function tests in 2002 and the fatty liver. He said I should see a liver specialist.”
Prodding and pushing
Mark suspected something serious was wrong when he was having the ultrasound scan.
“The technician was prodding and pushing and really taking a long time. Eventually she called a doctor. He said, ‘You’ve got a shadow there that needs investigation’.”
The situation became even more alarming when his specialist called him that afternoon and when he was booked into hospital next day.
“It hit home then! It was all so quick. I had no symptoms but when I finally got the diagnosis he said the tumours had been growing inside me for at least 10 years, which went right back to the liver function tests in 2002. That was an indicator which unfortunately wasn’t picked up.”
Two types of NETs
There are two types of NETs – functioning and non-functioning. The first type, because extra hormones are created by the tumours, causes symptoms like flushing (going red), diarrhoea, gas and stomach cramps. Those who develop non-functioning NETs, like Mark, experience no symptoms.
“They could see that there were tumours on my liver but they didn’t know where the primary (tumour) was. I didn’t even think about cancer until the oncologist introduced herself in the ward.”
Mark was told that it was a slow growing cancer and at stage four, but that because of his age the approach could be to monitor it but not be proactive. A second opinion was also offered.
“When I heard I had cancer I thought ‘I’m going to die, how is my family going to fare’ and so on. It is such an enormous slap, to be honest, and my mother had died of cancer aged 50 and I really thought this was the end, but that’s 10 years ago now and I’m living a full life. The second consultant was proactive in trying to target the disease with surgery and treatment options and give me the best outlook possible. I just wanted it out of there.”
Part of liver removed
Mark had surgery two months later. 65% of his liver was removed and 13 tumours identified, 12 on one lobe and one on the other.
“They removed the one with 12 tumours during the first surgery and then brought me back in later and took away the other tumour on the other lobe. They also identified that the primary was in my small bowel and they were able to remove that as well.”
Mark came out of surgery still not knowing much about the disease.
“I had never heard the term NETs,” he says. “I knew nobody who had it other than having heard that the head of Apple, Steve Jobs, had died of pancreatic NETs.”
It was when Mark later attended a conference about rare cancers held in Cork that he found out more.
“It was such an eye opener. Tommie Gorman was there and about 40 patients and family listening to the specialists talking. Tommie had been fighting this cancer for 15 years at the time, going back and forward to Sweden for treatment.
“He was trying to set up this patient organisation so I volunteered. I really feel that the interaction between patients, helping one another and talking to each other really helps you to deal with the disease. They know what you’re going through. The conference also gave me so much hope.”
Stressful symptoms
For many NETs patients, symptoms are a real problem and restrict their freedom.
“So many patients have problems with flushing (going red) and diarrhoea and are having to toilet map when they are out, which is very stressful. It’s difficult to live your life and people end up staying in a lot. I have non-functioning NETs, which means even now I don’t have the symptoms. It’s a hormonal disease and you can get flushes, hormones rushing around your body, uncontrolled. That’s what gives you the symptoms of the flushing or the diarrhoea or bad gas or stomach cramps.”
Life today
“Ten years later I’m living a full life and it’s great. I had some new tumours identified in the summer, but I’m still at early stages with them and I’m well looked after. I got what I call a ‘reset’ when I had my surgery 10 years ago which I’m so delighted for. Surgery isn’t an option for many patients because of the spread of the tumours around your body. I was very lucky that it was possible for me.”
Mark recommends that anyone newly diagnosed with NETS should contact the support group. See netpatientnetwork.ie/
Centre of Excellence for NETs in St Vincent’s
There is now an internationally recognised NETs centre of excellence in St Vincent’s University Hospital, Dublin led by Professor Dermot O’Toole.
It is hoped that peptide receptor radionuclide therapy (PRRT) will be available there by the end of 2022.
“This treatment is very successful in stopping or slowing the growth of the disease,” Mark McDonnell says.
“Patients in Ireland up to now have always gone abroad for PRTT, usually to Sweden or Rotterdam. Usually a patient would get four bouts of this PRTT with six to eight weeks between bouts. For the first session you could be 10 days abroad. Currently the cost of this is covered by the EU Treatment Abroad Scheme. Having the treatment available here will make life so much easier for Irish NET patients.”
Research about NETs
New research conducted by Ipsen (the cancer drug manufacturers based in Blanchardstown) highlights the current challenges facing patients suffering from NETs across Ireland.
Sixty per cent of patients suffering from a neuroendocrine tumour require several referrals before correct diagnosis.Almost 25% of patients wait five-plus years for a diagnosis.Over 90% of patients had never heard of NETs before diagnosis.Almost one in five (18%) waited one to five years for an accurate diagnosis.Almost half (41%) of those diagnosed with NETs cancer in Ireland last year had already progressed to stage IV NETs.There are currently approximately 2,400 patients living with a neuroendocrine tumour in Ireland, and it is estimated that approximately 140 patients are newly diagnosed across the country every year. According to those suffering with NETs, urgent action needs to be taken to support improved care for the NET patient community.
Lambing: risk to pregnant women
If you are pregnant and working on a farm, protecting yourself from the zoonotic disease toxoplasmosis is very important at lambing time. It can be present in sheep birth fluids so take care to avoid contact with these, up close and on clothes worn by those who are near the ewes that are lambing.
Remember that cat faeces can contain the toxoplasmosis parasite which can be transferred from animal to human and cause blindness in a human baby.
Get someone else to clean litter trays daily or use gloves. Also wear gloves when gardening to avoid contamination from the soil (parasite in faeces).
Avoid contact with sheep, cattle or goats when they are giving birth too or with clothes/boots/items worn by others that may have been in contact with birthing fluids.
Read more
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The most common rare disease you’ve never heard of
Zebra stripes are used in the logo for the Neuroendocrine Tumours (NETs) patient support group. Why?
“If you hear hooves don’t automatically assume it’s a horse. It might be something else like a zebra,” says Mark McDonnell, who was finally diagnosed with NETs in 2011.
“That’s what we’re asking consultants to consider when making a diagnosis – could what the patient has be something more rare like a neuroendocrine cancer? If you don’t suspect it you can’t detect it.”
Many of the symptoms of NETs cancers are similar to conditions like irritable bowel syndrome (IBS) or Crohn’s disease – diarrhoea, gas, stomach cramps – and patients, on average, can see three consultants before they get the correct diagnosis, Mark says.
Mark McDonnell with RTE's Tommie Gorman
“Early diagnosis is key, as with all cancers. Doctors are trained to go for the obvious and if something is obvious you go for the obvious solution, but unfortunately we really need them to think outside the box. Many of the rare cancer support organisations use the zebra symbol for that reason,” he adds.
Late diagnosis is a huge problem with this disease, he states.
“Over 50% of people have stage four by the time it is diagnosed, which means the cancer has spread. Once that happens it’s not curable. You manage it and hopefully you have a long life ahead of you and there are great medicines out there, but you have it for life.”
Delayed diagnosis
Mark, a semi-retired software engineer, is chair of the NETs patient support group and soon to be president of the International NET Alliance.
He was finally diagnosed with neuroendocrine tumours on his liver in 2011 after the illness wasn’t properly diagnosed and followed up on in 2002 during a routine medical. He was 46 at that time.
“I had a routine medical through work and they noticed that there was a problem with my liver function tests so I went to a specialist and was referred on to another and various tests were done. I was told I had a fatty liver, that it wasn’t working perfectly and it was left to my GP to monitor, but after a while I lost touch because there was no change (I had no symptoms).
“In 2011 I had an issue with my toe and went to my GP and in recounting my history, I mentioned the liver function tests in 2002 and the fatty liver. He said I should see a liver specialist.”
Prodding and pushing
Mark suspected something serious was wrong when he was having the ultrasound scan.
“The technician was prodding and pushing and really taking a long time. Eventually she called a doctor. He said, ‘You’ve got a shadow there that needs investigation’.”
The situation became even more alarming when his specialist called him that afternoon and when he was booked into hospital next day.
“It hit home then! It was all so quick. I had no symptoms but when I finally got the diagnosis he said the tumours had been growing inside me for at least 10 years, which went right back to the liver function tests in 2002. That was an indicator which unfortunately wasn’t picked up.”
Two types of NETs
There are two types of NETs – functioning and non-functioning. The first type, because extra hormones are created by the tumours, causes symptoms like flushing (going red), diarrhoea, gas and stomach cramps. Those who develop non-functioning NETs, like Mark, experience no symptoms.
“They could see that there were tumours on my liver but they didn’t know where the primary (tumour) was. I didn’t even think about cancer until the oncologist introduced herself in the ward.”
Mark was told that it was a slow growing cancer and at stage four, but that because of his age the approach could be to monitor it but not be proactive. A second opinion was also offered.
“When I heard I had cancer I thought ‘I’m going to die, how is my family going to fare’ and so on. It is such an enormous slap, to be honest, and my mother had died of cancer aged 50 and I really thought this was the end, but that’s 10 years ago now and I’m living a full life. The second consultant was proactive in trying to target the disease with surgery and treatment options and give me the best outlook possible. I just wanted it out of there.”
Part of liver removed
Mark had surgery two months later. 65% of his liver was removed and 13 tumours identified, 12 on one lobe and one on the other.
“They removed the one with 12 tumours during the first surgery and then brought me back in later and took away the other tumour on the other lobe. They also identified that the primary was in my small bowel and they were able to remove that as well.”
Mark came out of surgery still not knowing much about the disease.
“I had never heard the term NETs,” he says. “I knew nobody who had it other than having heard that the head of Apple, Steve Jobs, had died of pancreatic NETs.”
It was when Mark later attended a conference about rare cancers held in Cork that he found out more.
“It was such an eye opener. Tommie Gorman was there and about 40 patients and family listening to the specialists talking. Tommie had been fighting this cancer for 15 years at the time, going back and forward to Sweden for treatment.
“He was trying to set up this patient organisation so I volunteered. I really feel that the interaction between patients, helping one another and talking to each other really helps you to deal with the disease. They know what you’re going through. The conference also gave me so much hope.”
Stressful symptoms
For many NETs patients, symptoms are a real problem and restrict their freedom.
“So many patients have problems with flushing (going red) and diarrhoea and are having to toilet map when they are out, which is very stressful. It’s difficult to live your life and people end up staying in a lot. I have non-functioning NETs, which means even now I don’t have the symptoms. It’s a hormonal disease and you can get flushes, hormones rushing around your body, uncontrolled. That’s what gives you the symptoms of the flushing or the diarrhoea or bad gas or stomach cramps.”
Life today
“Ten years later I’m living a full life and it’s great. I had some new tumours identified in the summer, but I’m still at early stages with them and I’m well looked after. I got what I call a ‘reset’ when I had my surgery 10 years ago which I’m so delighted for. Surgery isn’t an option for many patients because of the spread of the tumours around your body. I was very lucky that it was possible for me.”
Mark recommends that anyone newly diagnosed with NETS should contact the support group. See netpatientnetwork.ie/
Centre of Excellence for NETs in St Vincent’s
There is now an internationally recognised NETs centre of excellence in St Vincent’s University Hospital, Dublin led by Professor Dermot O’Toole.
It is hoped that peptide receptor radionuclide therapy (PRRT) will be available there by the end of 2022.
“This treatment is very successful in stopping or slowing the growth of the disease,” Mark McDonnell says.
“Patients in Ireland up to now have always gone abroad for PRTT, usually to Sweden or Rotterdam. Usually a patient would get four bouts of this PRTT with six to eight weeks between bouts. For the first session you could be 10 days abroad. Currently the cost of this is covered by the EU Treatment Abroad Scheme. Having the treatment available here will make life so much easier for Irish NET patients.”
Research about NETs
New research conducted by Ipsen (the cancer drug manufacturers based in Blanchardstown) highlights the current challenges facing patients suffering from NETs across Ireland.
Sixty per cent of patients suffering from a neuroendocrine tumour require several referrals before correct diagnosis.Almost 25% of patients wait five-plus years for a diagnosis.Over 90% of patients had never heard of NETs before diagnosis.Almost one in five (18%) waited one to five years for an accurate diagnosis.Almost half (41%) of those diagnosed with NETs cancer in Ireland last year had already progressed to stage IV NETs.There are currently approximately 2,400 patients living with a neuroendocrine tumour in Ireland, and it is estimated that approximately 140 patients are newly diagnosed across the country every year. According to those suffering with NETs, urgent action needs to be taken to support improved care for the NET patient community.
Lambing: risk to pregnant women
If you are pregnant and working on a farm, protecting yourself from the zoonotic disease toxoplasmosis is very important at lambing time. It can be present in sheep birth fluids so take care to avoid contact with these, up close and on clothes worn by those who are near the ewes that are lambing.
Remember that cat faeces can contain the toxoplasmosis parasite which can be transferred from animal to human and cause blindness in a human baby.
Get someone else to clean litter trays daily or use gloves. Also wear gloves when gardening to avoid contamination from the soil (parasite in faeces).
Avoid contact with sheep, cattle or goats when they are giving birth too or with clothes/boots/items worn by others that may have been in contact with birthing fluids.
Read more
Salt: think about shaking the habit
The most common rare disease you’ve never heard of
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