Maureen Coleman's Story
Diagnosed 2000. Unknown Primary - Liver metastases.
I was officially diagnosed with Carcinoid Syndrome in the fall of 2000, when I was 52. About 20 years before, in Toronto, I had decided to try to get to the bottom of why I was flushing. I had started flushing deeply in my early thirties. I was now in my late thirties. At that time I was beginning to suffer occasionally from what might be described as Carcinoid crises. When faced with a surprise or shock, I would flush a very deep red all over my face and neck. This would be followed about 20 seconds later by a sensation of extreme tightening, and when I would observe myself in the mirror at that moment I would notice that my face had turned pure white. I would also feel totally drained, woozy, and weak.
In the early days the ‘crisis’ would last a couple of minutes. However, by 1999, one particular crisis lasted for hours, and I was wondering if there was something seriously wrong with me.
I had made a point of having yearly physicals with my GP from the mid 1980s and each time I would tell him I was puzzled by the flushing. He suggested a hypnotist, so I went to see Dr B, who specialized in hypnotizing people out of bad habits.
Not surprisingly, Dr B failed to cure me, and I went on to see his partner, Dr H, a psychiatrist, whom I would continue to see regularly and then occasionally over the next 15 years. Dr H put me on a course of Beta Blockers, which would slow down my heart, and keep me from flushing. I was to take them as needed. I started with one pill, with some success, and ended up after several years taking four at a time, as needed. By then, even after taking four pills, I would have breakthrough flushing.
By 1999 I was regularly flushing from head to foot, without provocation.
I visited a practitioner in Chinese Medicine in 1999. She looked at my tongue, looked concerned, and told me I had ‘thick blood’. She had cured many individuals of serious ailments, and had a book of photos of her most successful cases. She gave me a series of ‘laser’ treatments, which involved lying on a hard table with wires connected to me for an hour. I didn’t make it into the photo book.
I decided around that time to be tested for allergies. After extensive testing no allergies were discovered.
My chiropractor was convinced I had Reynaud’s Disease, which is characterized by a red nose and red cheeks.
I arrived at my GP's office in August 2000 for my annual physical, preoccupied with the flushing, and mentioning it to him, as I always did. At the back of my mind the thought had lurked for some time now that I might have a serious condition.
My GP asked me if I had ever had an abdominal ultrasound. I said I had not yet had the pleasure. He sent me for the ultrasound. Soon after, I was called in to his office to discuss the ultrasound. Spots had been found on my liver, and the radiologist had suspected something very rare called Carcinoid Syndrome, which was kind of, and I quote, ‘cancer like’ but I was not to worry as it was reputed to be very slow growing, and I could have it for the next 30 years. I would most likely die of something else.
Then he hugged me, which was unusual for him and told me he was sorry. He then thanked me for being so persistent, because by this time I had become like a broken record always repeating the same thing.
In the months that followed I went through a series of tests and scans at a Hospital in Toronto. There was an octreotide scan, a nuclear scan, a 5HIAA test (with a score of 136), a bone scan, a heart scan, a brain scan, and a liver biopsy. “Just trying to get a bit of that tumour”, said the technician, as I lay there. ‘Tumour!!!’
I was assigned to an oncologist, who put me on Sandostatin LAR 20, which I started taking around February 2001.
My assistant at the school where I taught was very interested in my condition, and looked up Carcinoid on the web. She told me it didn’t look so great, that sometimes people became really sick, or died. It began to dawn on me, that maybe I had real cancer. I felt at that point that I had crossed over into a different world, the cancer world.
I explored the web, and in a short time found www.acor.org. Exploring the site, I found the ACOR Carcinoid Online Group. I signed up. I read and read. I decided to advertise to see if there were other Canadians out there. Within a very short time I heard from B R, and P R, and before much more time had passed a meeting had been organized by B R, and we were to meet at Wellspring, which ran Cancer Support Groups in a house on the grounds of Sunnybrook Hospital in Toronto. We could have a room, as long as we were out in two hours.
There were five people at our first meeting in May 2001. Along with B and P, I was able to meet L, and Mary B Holland, a young woman, who had been told for years that it was ‘all in her head’. Mary was already very ill, and passed away the following year.
The Southern Ontario/Northern New York group was born. We had more meetings, and more people joined us. I learned more, and found out about other doctors. I heard that Dr Richard Warner in New York was really worth a visit.
Meanwhile I was now my oncologist’s only Carcinoid patient, and I realized that he was not actively engaged with other Carcinoid doctors. He had not heard of Dr Warner, and at that time, in late 2001, he did not see the need for a CgA test, which is a gold standard test for Carcinoid Cancer.
Determined to have a CgA test, which according to the folks on ACOR Carcinoid Online Group, was the definitive test, I found out from one of our group, that another Toronto doctor was seeing Carcinoid patients, and would use the CgA test as a marker. I asked my oncologist if it was OK with him if I discussed my case with a second oncologist, and he said he was fine with this, so in mid 2002 I had a consultation with the other doctor, and also had a successful CgA test, which fortunately had a low score.
I kept having CT scans every 4 months at my Toronto Hospital, which showed many small tumours on my liver, with two or three tumours bigger than the rest.
I kept reading posts on the ACOR Carcinoid Online Group. Getting back to my oncologist, I wondered if something should be done about those 3 by 4 centimetre and 2 by 3 centimetre tumours. My oncologist felt that it was fine to just keep taking the Sandostatin.
I made an appointment to see Dr Richard Warner in New York in November, 2002. Dr Warner’s approach was different from my Toronto doctors. He looked at all my carefully collected information, including reports and slides. ‘Who said you got Carcinoid? How do you know”? He pressed, after a while on the upper part of the right liver lobe. “Yes, there’s a flush. You have Carcinoid Cancer.”
Dr Warner wanted my tumour slides redone by his technician. He asked me questions about my primary tumour. It had not been found. He felt it was important to locate the primary tumour because it would determine the modality of treatment. If it was in the small intestine I would have one treatment, and if it was in the tail of the pancreas I would have another treatment. Dr Warner wrote an extensive report, recommending a radio capsule endoscopy to help locate the primary tumour. One of his other recommendations was to possibly take alpha interferon as well as Sandostatin, depending on the location of the primary tumour.
I showed Dr Warner’s report to my Toronto oncologists, and they read it with interest. Shortly after, I learned from our own SONNY group, about the doctors in London, Ontario, who saw many Carcinoid patients, so I asked my GP, to make an appointment for me. He did, and in the early summer of 2003 I went to London, Ontario, where I met Dr R, and Dr K.
I informed my Toronto doctors that I was also seeing Drs R and K. I ended up going to London in October 2003, February 2004, and October 2004, for Hepatic Lipiodol 131 embolizations. My Toronto doctors felt that the embolizations could help and were comfortable about these procedures for me.
The rationale, the London doctors explained, was to reduce the size of the tumours, and to cut off the blood flow from the hepatic artery to the liver, ensuring that the hormones going into the liver would be lessened considerably, plus the tumours would be killed by the Lipiodol cocktail. It was better to catch the tumours small, they explained, before they got out of hand and did more damage.
I had one problem that emerged in March 2004, which was the discovery by my oncologist, in Toronto, of a thrombosis in a branch of the portal vein. I was to see Dr B in the Thrombosis and Thalassemia Clinic at a Toronto Hospital. Dr B’s direction was that I was to take Coumadin, a blood thinner, as long as I have a malignancy. I started with subcutaneous injections but was to continue with pills, once my blood stabilized. Dr B said that a thrombosis can occur in cancer patients.
My third Lipiodol embolization of October 2004 went ahead successfully after an ultrasound (Mt Sinai) and CT scan (London) showed that much of the thrombosis had dissipated.
Since late 2004 till early 2008 I have been stable with no further tumour growth.
I continue on 20 Long Acting Release Sandostatin every 28 days, and I am on 4 mg day of Coumadin.
January 2008
Updated Story, July 2009.
Since I wrote my story in January 2008 I am happy to report that there has been little change in my condition.
My Toronto doctor has put me on Sandostatin Long Acting Release every 21 days as opposed to every 28 days to ensure continued stability.
We are both interested in where my primary tumour might be located but as yet have not gone on a determined hunt for it. So far no Canadian scan can detect it.
But the idea of locating it persists and a number of studies have been done in North America and Europe which emphasize that finding and removing the primary neuroendocrine tumour can extend a patient’s life. But I realize that in my case I am living well with my undiscovered tumour lurking somewhere and who knows what might happen if I go on a voyage of discovery to find a scanner and scan in Europe sensitive enough to detect it? What are the implications including possible cost implications attached to my quest if the scans in Canada are not sensitive enough to locate it? So meanwhile I feel blessed that my case appears indolent.
I continue to have twice yearly CT scans in London, Ontario, which are put on DVD and subsequently gone over by my London doctors and my Toronto doctor. I also have once yearly MIBG and Octreoscans in London which are also put on DVD and I make sure I periodically go to the London film library and order a DVD of all scans, to be ready for my Toronto doctor or any other doctor to read, as needed. I order an extra copy to keep at home in my care binder, in which I keep all reports and DVDs.
I am pleased that the resolution of my MIBG and Octreoscans in London is acceptable to the European Nuclear medicine community in the event of ever having to be referred out of country to the UK for Lutetium177 or Yttrium90 radioisotope treatment which is currently not available in Canada but has been proven through many diverse European studies to be incredibly effective. I have discovered over the years that not all Canadian nuclear medicine scans are created equally and that the results of the London scans ONLY, out of all Ontario scans are considered by out of country specialists as acceptable for assessment of patient’s particular workup needs while having out of country treatment.
Trying to figure what has kept me stable since my three, unique to London Ontario, Hepatic Arterial Lipiodol Chemo Embolizations in 2003 and 2004, I asked my doctors what they thought. The response from London has been that the London Lipiodol HALCE embolizations (for Hepatic Arterial Lipiodol Chemo Embolizations) have been extremely effective.
Liver Embolizations are recommended when surgery is regarded as not feasible for a number of reasons. Sometimes the position of tumours and blood vessels determine that kind of treatment that is best.
In my case I was regarded as inoperable and therefore a candidate for hepatic embolization, which in the case of the London HALCE is reversible, which means that the hepatic artery is only blocked temporarily. This potential for unblocking, as I understand it, paves the way more easily for further treatments and options than if the hepatic artery were to remain blocked, as happens with some liver embolizations elsewhere.
My Toronto doctor noted to me that it has been observed that being on Coumadin, a blood thinner, as I am, can have a slowing effect on tumour growth. My small thrombosis in a branch of the portal vein determined five years before by my Toronto haematologist as being cancer caused, has been stable in size over the years, which is reassuring.
My next CT scan in London is in September 2009 with a follow up appointment in November 2009 and I hope to hear news that my stability in terms of minimal or no tumour growth has been maintained.