A carcinoid odyssey – 1985-2007
I started to have digestive problems in the mid 80’s, the symptoms ranged from heartburns to episodes of liver crisis – indigestion with nausea and abdominal cramps. These cramps were so bad; my abdomen was as hard as rock and I could feel the pain inside my guts when I was walking. I went several times to the doctor and was told it probably was nothing serious, just the odd indigestion problem. I was also told that sometimes stress and worry could bring on abdominal pain. The pain just would not go away and would keep recurring. Several times I went to emergency the pain was so bad. The staff could not find anything wrong; they would give pain killer and tell me to see my family doctor. By that time I was convinced something was really wrong with either my liver or my gallbladder or my pancreas. Then the pain increased and I decided to investigate further. In 1986, I was diagnosed in France with a very rare skin disorder called Granuloma Faciale – looks like granulome on the skin. I had seen several dermatologists in Canada who told me, it was nothing, it was old age – (I was in my mid 30s!). Once I had the diagnosis, the dermatologist in Canada treated me with laser. But basically there is no known cure for it. In retrospect, I think it is tied up to the carcinoid tumor.
While on vacation in France, I went to have radiography, a cat scan and some blood test targeting potential problems with the liver. Apparently, nothing was found out except there were traces in the liver of mononucleosis disease, characterized by great fatigue. I told the doctor I had been unaware of it, and had blamed the lack of energy on my digestive problems and later to the harsh hot climate in Dubai. This was now 1994.
I recognized a pattern whereby I would get indigestion, feel nauseous, get abdominal cramps and then unable to eat for a few days. This pattern would first manifest itself every 4 months or so, each time the cycle would last longer, 4 to 5 days as opposed to 2 or 3 days, and the pain would be more severe. I could not find a connection between what I ate and getting sick. While in Dubai I went to the American hospital where they had the latest facilities and the best medical equipment money could get. It was a state of the art hospital; the only problem was that the personnel competence did not always match the latest technology. I went through a series of test, MRI, CAT scan and was told that the liver presented some fatty matter but otherwise everything was fine. This was now the year 2000. I still thought there was more to it but I did not know what could be my next move.
I came back to Canada in 2001. I would still go to the hospital emergency when needed, I had a new family doctor and she told me basically what I had been told all along, I had a fragile digestive system, stress could provoke severe abdominal pain.
Coming from a culture where once you check with your family doctor everything is taking care of to reach a diagnosis, you did not have to ask to see a specialist, you do not have to suggest to have a cat scan, an MRI or whatever else is available for diagnosis, I did not have the reflex to suggest anything to my doctor. Although I had doubt and what my family doctor told me did not convince me it was just a “nothing serious condition” I feel I actually failed to stand up for myself.
Since I have been diagnosed, I realize how much prepared you have to be as a patient in this country. You have to be informed about the best available treatments; you have to suggest strategies to your doctor… In other words, you do not rely on your doctor, you do not put your trust into your doctor, and you must carry the burden and responsibility of your own disorder and become incredibly knowledgeable in the matter. I am really flabbergasted about the knowledge some of the carcinoid patients have about their own disease, at first I thought they had been medically trained and thought I was talking to nurses or doctors. And as if this was not enough, when you change hospital or oncologist, you become responsible for making sure that everyone shares the same information. Officially, your doctor just has to call the previous doctor to have the file sent over but when it comes to CAT scans, which everyone wants to see, it is up to the patient to contact the health or film record, get the CD in person from the hospital and give it to your new oncologist. Another problem is that whenever you change hospital or doctor, all the tests have to be duplicated. In my case, my primary oncologist was at……. then I was sent to …. for some experimental treatment, and finally I was accepted by……… where other experimental/pharmaceutical studies are also available, so I had to go through 3 sets of all the tests.
The way I see it, there is a need for revising all existing structures within the health system not only for diagnosis and access to treatment but also for having a central data bank for every patient where all previous ailment, treatment are detailed. When the word holistic is very much heard in the medical field these days, it seems having a health history available in a data bank makes a lot of sense.
In 2002 I moved from Toronto to Vancouver. Once there, I could not get on the provincial health service because I had lost my citizenship card and I was told a passport was not enough, I needed to get a new citizenship card to apply for health services. It took a full year to get a copy of the citizenship card even though I had been a citizen for over 20 years! So for a full year I had no access to health services. My correspondence with governmental agencies, MP and ministries that year was significant but was not successful in speeding things up. Anyway, the symptoms by that time, were become more frequent, more severe, and lasted longer. I suffered also from psoriasis for over a year, and then it went away by itself. Again I think it is tied up to carcinoid tumor.
I went to France in 2005 for a vacation. I was now experiencing hot flashes (they started in September 2005). I was baffled because I had gone through menopause four years ago without any problem and never had any hot flushes. Menopause had never been an issue. I thought the hot flushes were somehow catching up with me and I started to take medicine for it. Went to the doctor and told him I did not understand where they came from. Then in December I was hospitalized for 10 days with a viral heart condition, pericarditis. At that point, I knew there was something extremely wrong with me. Once out of the hospital, I asked the doctor in France to see a gastroenterologist.
The specialist listened to what I had to say. I find most doctors in Canada, do not really listen to the patient but reinterpret what they hear according to their past experience. This specialist took note of the recurring pattern, of all the symptoms and sent me for an ultrasound the very same day and within 2 days sent me for a cat scan. He was baffled by the results; there was a discrepancy between the biological test (blood) and the images. He told me he did not know what we were dealing with but that it was very serious and that I should go for colonoscopy. The colonoscopy showed nothing unusual but the specialist told me that we needed to investigate more for a diagnosis. He said the next step would be a biopsy of the liver as the liver presented numerous metastases and was probably the secondary site for cancer. In his own way, he was preparing me for not so good news. I told him I was going back to Canada. He joked with me and told me the only thing he knew about Canada was the movie the Barbarians and that the health system over there did not seem very efficient. He stressed how important it was to check right away with an oncologist.
Back in Canada in March 2006, I had to go through the whole health maze of family doctor, then tests for the heart, a mammography, an ultrasound of the uterus, well I had to see every specialist of every organ to identify the primary site of the cancer, if it was cancer, my family doctor did not believe it. Finally I saw a gastroenterologist who referred me to an oncologist Dr. X at Hospital A.
When it came to diagnosing the cancer Dr. X. did an excellent job. When I told him the most debilitating symptom was the hot flushes and went on describing them, he told me he knew of a very rare condition that most doctors would never see in a lifetime of practice, it was called Carcinoid tumor. He sent me for a liver biopsy and then arranged for a 24 hours urine sample. The diagnosis was confirmed. It was now August 2006.
My treatment from then on consisted mainly of sandostatin. Now in December 2007, I take 60 ml of long lasting shot every 28 days and 5 ml subcutaneous shots daily. In December 2006 Dr. X. told me about an experimental treatment. Treatment proposed was Systemic Radioisotope therapy in combination with chemo.
However, the liver presented some rapidly proliferative tumors and from June to August 2006 I completed chemotherapy consisting of four cycles of etoposide/platin.
The chemotherapy was not successful. “Tumor continues to be poorly avid for either indium-11 octreotide or MIBG, hepatic arterial therapy should not be considered. The last 5-HIAA in June 24 is elevated at 495 (previously 840). Since chemotherapy CBC shows decreased hemoglobin 107, albumin dropped to 24, liver show an increased AST to 43, alkaline phosphatase to 190, gamma GT to 508, LD 191”.
All this medical jargon and its implication go over my head, I would have to start with the basis: what is hemoglobin, albumin, AST etc… what does it do, how does it work? I feel overwhelmed by all things I should do, as it is, just to work out my schedule for tests, coordination drives back and forth, preparing the daily shots, taking my medicine, keeping diarrhea, hot flushes and water retention into check, keep me very busy. Actually, I would say being sick takes a lot of time!
So, I disqualified for the Systemic Radioisotope therapy treatment since it only works on slow growing tumors. The only other option was an experimental drug RAD 001. The problem with this drug is that it is not on the market, it is available only as a blind study. It would also require that I cut in half my dose of sandostatin. I really cannot imagine this scenario as some the hot flushes have become excruciating. Also I might be on the placebo and not the real drug and I would not benefit at all from being on the study.
During the last consultations I was told that time was of the essence. That the tumors on the liver were rapidly proliferating and that I had to make up my mind because we would reach a point of no return. As it was, my liver was not functioning properly and t I had only 30 % left. When I asked what was meant by time of no return I was told it meant the time when the liver would cease functioning. I told the doctor that was a very serious problem and what time frame were we looking at, he told me one week, one month at most. I was in shock because I understood that if the liver no longer functions, the next step is going into a coma and basically dying. I had a hard time processing the information.
The next consultation occurred after a cat scan and I had decided to agree to go on RAD001 given the urgency of the matter. The doctor told me I had now only 20% left of my liver according the latest CAT scan. When I finally agreed to go on with the study, I was told to come to receive the drug or the placebo. That time, I was told there was something really wrong with my heart. To make a long story short, I had described how painful some of my hot flushes had become. Heaviness in both arms, radiating pain in the back, problem breathing, such excruciating pain I was drained of all strength and thought I would either die or pass out. I suppose it sounds very close to what someone might experience with a heart attack but according to the cardiologist there is nothing wrong with my heart except for a leak in the right valve, nothing serious according to him, and not a reason for being disqualified for a drug, but every drug has its protocol.
I relate this episode because here we are talking about being confronted with dramatic news for the patient. When asked about the tumors growing rapidly, I was told I had time to deal with that. Right now, I had to check with my own cardiologist the very next day for more tests. So the tumors were no longer an issue, apparently I had more time than I was told I had. In the meantime, and on a more personal note, my partner had developed rashes all over his body, sick with worry and the prospect of a Christmas without me.
Miscommunication is not actually that surprising given the time frame for each consultation. There is no time to absorb all the details. He barely has time to read your file before, so he may ask you the date of your last chemo session, or the dose of your medicine, and you better have all the details right. A condensed version of your situation and your options. You sit there stunned trying to choose the most important point for you to discuss. You better ask the right question too.
Right now, since the beginning of December, I am a patient at…... I had two consultations.. The arguments about the RAD001 study not being the best one for me sounds right to me. I know the doctor will also be rushed for time during consultation. I understand that within the two weeks I had my first consultation the doctor did not really have the time to read my file thoroughly.
Some of the criticisms I have voiced have more to do with the actual structures of the health system than with the doctors themselves. The unfortunate thing is that it is the patient that has to take the brunt of it. Access to treatment is difficult when you have to request to see a specialist through your family doctor who might disagree with what you actually tell him or her. Listening skills are most lacking in the profession. Patients usually take extra care in explaining their symptoms but they are brushed over by professionals who think their experience is more important to the diagnosis than listening to patients. We need doctors to help us restore or maintain a comfortable and manageable level of health; only the patient experiences the array of symptoms and can relate them. I also wish the time will come when some of the burden of being sick will be lifted from the patient’s shoulders, easier access to information, options, treatments, a more efficient system to regroup all health information in a data bank, better coordination between different specialists, doctors and medical institutions, thus increasing chances of an early diagnosis. As for the financial burden, it would be a completely different topic especially when long term disability comes into play. There is great room for improvement. And this issue was also part of my odyssey.
Jacqueline Mallet
(Jacqueline passed away in February 2008)