BD’s CANCER DIARY
September 6, 2007
I always felt, since I was young, that I was going to live a long life, maybe even hit 100. My great-grandmother lived well into her 90s, as did my great-great aunt and my paternal grandparents. It seemed certain to me that my long lifespan was assured.
In January 2002, at 32 years of age, I moved from Toronto to the Cayman Islands with my husband and our 7 month-old son. Around two weeks after getting there, my stomach started feeling a bit off. My first thought was, “I thought the water here was safe to drink!” After a few days, the mildly odd sensation went away. A couple of weeks later, the feeling returned for around a week, and then disappeared again. When discomfort returned soon after that (in March by this point), my husband insisted that I go see a doctor. Because of the private medicine system in Grand Cayman, I was able to get an appointment with a gastroenterologist right away, and had an ultrasound that day which revealed that I had a large tumour. I think they originally thought it was in my liver, but a CT-scan showed that it was in my pancreas. I was whisked back to Toronto and I was lucky to get in right away to see a well-reputed surgeon, Dr.X, right away at his gastroenterology clinic at X Hospital. While the doctors couldn’t tell if it was cancer or not, the tumour measured 10 cm, and either way, it was going to have to be removed, so they didn’t bother doing a biopsy. It was originally going to be six weeks or so before Dr. X could slot me in for surgery, but I got very lucky that he got a cancellation while we were in the middle of our appointment. I was suddenly slotted for a Whipple operation, “the Cadillac of general surgery,” the following week at the X Hospital. During the Whipple, also known as a pancreaticoduodenectomy, I had the head of my pancreas removed, as well as my gall bladder, some lymph nodes, part of my small intestine and part of my stomach. Even after the Whipple, my mindset about my lifespan hadn’t changed. As far as the pathology went, I was told that it was indeterminate, but in 4 out of 5 cases, “tumours such as these are benign.” So I healed up after a few months and went on my merry way, having two more kids in 2003 and 2005. I had yearly CT scans after that, but they just seemed routine. Year after year, nothing turned up. So at the follow-up appointment regarding my five-year (and supposedly final) CT scan, on May 1, 2007, I strolled into X alone thinking about how very lucky I was to be walking in healthy, in this hospice of cancer patients.
Imagine my shock to learn that I had three small spots in my liver (with a fourth that was later detected by ultrasound). And that I would need to undergo surgery to remove approximately 65% of my liver… that is, if all of the other tests that the hospital was going to perform first indicated that there were no other tumours in my body. If the tumours had spread outside the liver, there would be no point in only removing part of the liver. One of the tests, an Octreotide scan, confirmed that these tumours had metastasized from the original tumour in my pancreas. That meant it was CANCER. It wasn’t pancreatic cancer, thankfully, as that is said to be one of the most deadly cancers. I had “neuroendocrine tumours” which originated in the pancreas. To be more specific, I had a non-functioning islet cell tumour, a very rare form of cancer.
The “good news” was that no other tumours were detected, and Dr. X was able to perform the liver resection on June 27, 2007. I found the healing process much easier than for the Whipple, since my digestive system hadn’t been touched, and truly felt my health improve with each passing day. Within a month, I felt 85% better. The other 15% seems to be taking much longer, as my side is still somewhat sore, and it still hurts if I belly laugh. Dr. X recommended that I should visit an oncologist, but was highly doubtful that he or she would recommend any treatment. After all, there are no tumours left in my body. In any case, neuroendocrine tumours are slow-growing, and chemotherapy targets fast-growing cells.
My appointment with oncologist Dr. X was scheduled for August 21. I didn’t go alone this time, but brought my husband and GP sister-in-law along with me for support. There would be more ears to listen and more brains to think of questions, if necessary. It turned out to be highly necessary. Dr. X and her resident wanted to discuss chemotherapy with me. It was suggested that while there are no visible tumours in me at this point, that doesn’t necessarily mean that the cancer hasn’t spread further. In fact, it is entirely likely that it has spread further, and is at a microscopic level now that can’t currently be detected. As such, Dr. X said this is my one opportunity to try to kill any cancer cells within me. If we wait until tumours grow large enough to be detected, they won’t be able to be eradicated, and everything from then on would be palliative. I was a bit shell-shocked.
Further terrible news was that this cancer is so rare that there is no data on whether the chemotherapy regime that she was suggesting would work on neuroendocrine tumours. The drugs being offered are those that have been used in breast cancer treatment, in different doses, as well as in other cancers that don’t respond well to chemo. So there I was, being offered aggressive chemotherapy that there is no proof works in an attempt to eradicate tumours that we don’t know are there. It seems a bit like a shot in the dark. I was also warned that there are serious possible side-effects of the chemo. Common side-effects that occur during chemo with these drugs are nausea and vomiting, hair loss, easy bruising and bleeding, fever and risk of infection. Long-term results could include organ damage to the kidneys, heart and pancreas. As you can imagine, this was not very appealing to me. I was heavily inclined to pass.
However, Dr. X's words, that this is the one opportunity to kill all the cancer that may be lurking, stay with me. My sister-in-law kept asking me that if I had been given the chance five years ago to stop the cancer from spreading to my liver, would I not have done it? Of course I would have, if I knew for certain that it was going to stop cancer from spreading. But there is no guarantee that these drugs are going to help me, and a chance that they are going to harm me irreparably. Still, I keep thinking of my kids who need their mom. I have to do everything I can to keep myself as healthy as possible for as long as possible. The ironic thing is that despite my two surgeries, I don’t feel like a sick person in the slightest. I am strong and energetic, with no symptoms of cancer. While I have heard that some people with cancer feel like chemotherapy is the one positive thing they can do to fight, I feel like enduring chemotherapy will transform me from a healthy person into a sick person.
We have been on vacation for two weeks since the appointment with Dr. S, and I am only now just starting to do the research that I desperately need to do. I am leaning towards the chemo with the information I have now, but I need to learn more. Unfortunately, I know that there is not going to be a clear answer to this dilemma. We are seeking a second opinion from an expert at Sloan Kettering in New York, but I don’t expect a clear-cut recommendation. Dr. X herself didn’t give us an “opinion;” she and the resident agreed that this is a very difficult decision. Dr. X recommended that if I want to go the chemo route that we should start within three months of the surgery, which is just three weeks away. For the first time in my life, I feel like my plans for a long life have been spoiled. The question has become how long can I survive.
September 11, 2007
I have never been much of a gambler, but I feel like that is what I am doing with my health right now. Abstaining from the gamble is unfortunately not an option. If I do nothing, then I am gambling that the liver resection captured all of the cancer in my body, and that I will live a healthy life from here on in. Because if that is not the case, I have been told that the cancer is not curable if it spreads to areas where it cannot be cut out. If I decide to do the chemo, I am gambling that the prospective outcome, ridding myself of all the cancer that may be in my body at a microscopic level, is worth all of the toxicity risks and potential organ damage that can result from the chemo. Streptozocin can cause possible permanent kidney damage; doxorubin can be toxic to the heart, amongst many other undesirable outcomes. Am I willing to risk that for the slim possibility that the chemo will help? I am finding this to be the most agonizing decision of my life.
November 28, 2007
It has taken me a while to get back to this diary. I was able to get an appointment with Dr. X at the X Cancer Institute in Boston at the beginning of October to seek his opinion. I spent a lot of time researching on the internet, and he seemed to be one of the leading experts in neuro-endocrine tumours, conducting numerous clinical studies to find better treatment options than those which currently exist. I had to send all of my previous test results, doctors’ reports, imaging scans on DVD and pathology slides before going…and unlike in Canada, had to endure a number of phone calls ensuring I could pay for the appointment, despite having given my Visa number upfront. In any case, Dr. X was great. It was his opinion that chemo would not be the way to go, as there is no scientific proof that adjuvant chemotherapy works in my situation. I had already changed my stance since my last diary entry and had decided not to go through chemo unless Dr. X presented a compelling argument in favour of it, so it was a relief to hear that he concurred. The thought of chemotherapy had been weighing heavily on my emotional well-being, and with that visit, I was relieved of that weight.
Since that appointment, I have gone back to living a normal life… almost. Unlike the five years post-Whipple, where I didn’t know I had cancer, I now know that this could re-appear at any time.
I went back to work at the end of September and mostly go about my daily life as usual, with all of its mundane tasks. But I don’t take anything for granted anymore. This is really how everyone should live, but for most healthy people, it’s so easy to forget about the fragility of life. Quality time with my kids is precious, as my biggest fear of this disease returning is the impact it has on them. At ages 2, 4 and 6, they need me. To tell the absolute truth, I am also tortured by the idea that if I were to die, they would inevitably forget me and my wholehearted love for them as they grew older. But I can’t live a normal life focused on this. I am taking each day at a time and enjoying it for what it is: a cancer-free, run-of-the-mill day.
July 20, 2009
A lot has happened since my last posting, I suppose. Less than a year after my liver re-section, a CT scan showed two faint spots in my liver. They did not light up with an Octreotide scan and they were too small for the doctors to determine what they were. After keeping an eye on them for months, I was told in late January that one of these spots was actually nothing – perhaps some scar tissue – but the other had grown to be a 1 cm tumour that would have to be removed. My surgeon recommended another liver re-section, as that is the “gold standard” of treatment, but there was no way I wanted to undergo that again if there was another option. If I could be guaranteed that another liver re-section would cure me of all tumours forever, there would have been no question, but I had had a right hepatectomy and a new tumour was found in my liver less than a year later. One can’t live her life on the sidelines recovering from surgery three months per year! I had researched Radiofrequency Ablation (RFA) when the spots showed up and while the technology had only been in use for perhaps a decade, I found its results to be quite impressive. This is a technique where a needle is placed inside you, heated to absurdly hot temperatures using radiofrequency waves, and burns small tumours away.
I got an appointment with an interventional radiologist and was relieved to hear that he would be able to perform RFA on my tumour. My surgeon had been concerned that due to its positioning adjacent to the stomach, I may not have been a candidate. I went for the outpatient procedure at Mount Sinai Hospital on Thursday, February 25th. The procedure is done guided by ultrasound or CT while you’re awake but heavily sedated, so I remember it vaguely. My doctor strictly used ultrasound, although there was a CT machine there just in case. The main thing that sticks out in my mind is how cold the grounding pads were that were placed on my legs! The amazing thing was that I felt sleepy but otherwise fine when I left the hospital several hours later. Breathing in sharply was a bit painful, but there certainly was no comparison to having major surgery. I marveled at being able to get in and out of bed easily and walk at a normal pace. This was a breeze!
I stayed at home for the first week to take it easy as instructed, although I really felt fairly good. I worked from home on the Tuesday and I felt completely fine, so I returned to the office Wednesday, March 4th. It wasn’t until I went back to work that the problems began. By midway through the first day back, I had the chills and could tell that I had a fever. They do warn you of something called Post-Ablation Syndrome, which could involve flu-like symptoms, but it’s supposed to set in within a few days of the procedure.
Over the next few days, I developed quite a high fever (up to 105˚F). I went back to the hospital and got a CT scan, but no infection was detected. I was prescribed some antibiotics anyways, just in case. The fever persisted at around 101.5˚F, even with the drugs, and finally disappeared after nine days (the day before I left for a March Break vacation with my family)!
For several weeks, I continued to have some mild discomfort in my core when I took deep breaths in or lay down in certain positions, but these became less noticeable with the passage of time. It’s now five months post-ablation, and I feel perfectly fine. I continue to get scanned every 3 months and can only hope that we have miraculously managed to get all of the tumours that were lurking within.