Last week the papers seemed to be full of cancer stories and one that particularly caught my eye was that cancer had climbed to second place on the list of the world’s biggest killer diseases. The statistics were captured between 1990 and 2013 with smoking, obesity and living longer apparently contributing to the rise. Heart disease still has the top spot. It got me thinking about how unlucky it would be to succumb to both? I then remembered I knew something about a type of Cancer that can actually lead to heart disease.
Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. The most common type of Neuroendocrine Tumour, known asCarcinoid, can be accompanied by Carcinoid Syndrome which if not diagnosed and treated early enough, can lead to an additional complication known as Carcinoid Heart Disease. However, very late Carcinoid diagnoses can present with Carcinoid Heart Disease already in place.
Excess serotonin, a hormone released by Carcinoid Tumours into the bloodstream seems to be the prime and lead suspect for causing thick ‘plaques’ or fibrosis tissue within the heart muscle and damage to (mainly) the tricuspid and pulmonary valves on the right side of the heart which can become ‘tightly narrowed’ or ‘leaky’. Other substances associated with Carcinoid Syndrome may also be involved (e.g. tackykinins). The presence of liver metastases may allow large quantities of these substances to reach the right side of the heart without being filtered out by the liver but the primary and other secondaries can still contribute to the problem. It’s important to note that the damage is nearly always caused by excess secretions of substances from malignant neuroendocrine cells rather than any direct metastatic involvement of the heart.
Patients with carcinoid heart disease normally present with symptoms such as breathlessness (dyspnea), fatigue, ascites, swollen ankles (edema). However some patients can be asymptomatic. The left side of the heart is relatively protected, with the pulmonary circulation filtering out the majority of the serotonin and other substances produced by the tumours. However, involvement of the left-sided valves can sometimes be seen in patients with very active metastatic disease, bronchial carcinoid or those with an existing heart condition known as Patent Foramen Ovale (hole in the heart).
When I was diagnosed in 2010, I was displaying symptoms of carcinoid syndrome and had to undergo a plethora of tests including something called an Echocardiogram – a sonogram (ultrasound) of the heart. Note – it is NOT abbreviated as ECG, which lay persons often use as an abbreviation for an Electrocardiogram – a totally different test. Carcinoid heart disease is a relatively late manifestation of neuroendocrine tumours; however, it has an important impact on the prognosis of these patients. Thus, early testing is vital for each patient presenting with carcinoid syndrome so that treatment can be considered. Whilst there are certain biomarkers which might indicate the potential for Carcinoid Heart Disease to be present, Echocardiography is the gold standard for detection. Depending on the results of the Echocardiogram, two further investigatory tests may be ordered up – transoesophageal echocardiogram and cardiac catheterisation. Patients without symptoms can undertake a blood test called NT-proBNP which can function as a screening test.
If you ‘google’ Carcinoid Heart Disease, be careful where you look as there are some statistics to be found in terms of incidence. I suspect they may be out of date and have yet to catch up with improvements in the latest diagnostic and treatment techniques. Either that or they fail to mention the disease might only be clinically significant in much smaller percentages.
On a positive note, I sense major strides in worldwide awareness campaigns which should lead to earlier diagnosis and therefore earlier treatment for Neuroendocrine Cancer. Combine that with new and innovative treatments in debulking/removing/shrinking tumours and controlling syndromes – particularly the use of somatostatin analogues with the latter, should mean that fewer people will succumb to this additional complication. I don’t see a lot of Carcinoid Heart Disease posts on the various forums which hopefully is a good sign.
Although ‘Stable’ is my new normal, I still undergo an Echocardiogram on an annual basis and am very happy to have this one in my ‘test golfbag’. I actually had the test done yesterday which has prompted this post. The procedure is painless and takes around 20-30 minutes. My results have always been OK but I now await yesterday’s test output ……. but if you remember I have No Fear :-)
Make sure you ask your specialist about this test on initial diagnosis and as part of your regular checks.
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Thanks for reading my patient view of Carcinoid Heart Disease – if you have time please check out this excellent video presentation on Carcinoid and Your Heart with cardiologist Dr. Jerome Zacks from Mount Sinai Hospital and the Carcinoid Heart Center, both in New York City – click here Thanks to the NorCal CarciNET Community and Carcinoid Cancer Foundation for alerting me to this video.
Ronny
