I chose the website name "icuredcancer" because it is technically true that I am a pivotal factor in my healing, and of course it is an appropriately stark and provocative title. But I did not actually cure my cancer, and it is not fully cured yet. It is an ongoing, team effort, with the following essential players: God, the creator and healer (physically, mentally, spiritually) and answerer of prayers, the hundreds of people around the world (family, friends, and even strangers) that care enough to pray for me and encourage me regularly, the amazingly sophisticated human body that God designed with the innate capability to repair itself, the awesome power of nutrition and disease-fighting that God infused into plants as food and medicine, the amazing work of many others who researched and proved and promoted these methods, Al Gore The Benevolent Inventor Of The Internet where an avalanche of life-saving information is available at our fingertips unfiltered by the conventional "experts" and elite gatekeepers as in the recent past, those two conventional doctors (out of about 30 so far since this started back in the day) who ultimately acquiesced to my relentlessness and approved of my methods, the naturopathic doctor who was on board from my first appointment, and my own tenacious diligence and objectivity. I repeatedly attribute my healing progress to God, and in answer to skeptics who prefer to believe the therapy regimen deserves more credit than God, I remind them of God's creative powers and resources described above, and the fact that much of the battle is escaping the "conventional" paradigm, such that it was a miracle that God led me out of that deadly trap. There are tentacles of its grip I'm still discovering and learning to extricate myself from all the time, a process that God continues to help lead me through. And the personal spiritual factors are integral to the journey. Without God's help, I would be at a serious disadvantage, if I would have this progress at all. God is indeed healing me.
My cancer was diagnosed in February 2019. The disease is generally called Zollinger Ellison Syndrome (ZES). When I asked my oncologist for a more specific clinical description of this type of cancer, she called it "metastatic neuroendocrine carcinoma." The tumors themselves are called "gastrinomas." They are "neuroendocrine" tumors, which means their diabolical design is to produce hormones. In this case, the tumors produce gastrin hormone, which is the hormone that stimulates the stomach to produce acid. Normally, the body produces gastrin on a regulated basis, which stimulates the stomach to produce acid on a regulated basis, switching on and off as needed for digestion. But the tumor produces gastrin all the time, which stimulates the stomach to produce acid all the time, and that flood of excess acid causes chronic, severe digestive system distress, primarily heartburn and diarrhea. Those were the symptoms that caused me to go to the doctor to get checked out. I also have a mild level of a complication called "carcinoid syndrome," which means the tumors also produce excess serotonin hormone, which causes flushing/redness of the skin, and even more severe diarrhea; in my case the symptoms of carcinoid syndrome are only intermittent.
This is my second time around with ZES. I originally had ZES in the 1990s. I first started having symptoms in 1992, very suddenly, all at once. I was in the island country of Grenada in the Caribbean, on a one-week missionary trip with my church. About mid-way through the week, I got a bad case of food poisoning, which I think was the result of a certain chicken dinner. I had extremely bad diarrhea, and was a prisoner in the bathroom for most of the rest of the trip. I figured I'd recover soon, at least by the time I got home. But I didn't, the symptoms continued for the next 8 years. I spent most of my life either in the bathroom, or wishing I was in the bathroom. I kept insisting to my doctors that it had to be some sort of parasitic infection, considering the sudden onset during foreign travel. But test results for parasites were negative, and the doctors couldn't believe my description of the sudden onset could be possible. But to this day I believe it was caused by some sort of parasitic or microbial agent, which was either acquired in, or triggered into action by, that episode on that foreign trip.
It took many years to get the correct diagnosis of ZES, because it's so rare none of my doctors believed that could be it, until there was nothing else left to test for after having tested for everything else. (This summary does not do justice to the 8-year drama of reaching the diagnosis and going through surgery; that is a huge story of its own. For the fuller story, scroll down to the section "The First Episode"). The correct diagnosis was finally made in 1999, after the following tests: octreotide scan, secretin stimulation, serum chromogranin-A test, and CT scan. I had a single, 5cm gastrinoma tumor (about the size of an egg) in the abdomen. In most cases of ZES, gastrinomas occur in the duodenum or pancreas. But in my case, the tumor was not embedded in any organ or tissue, it was a self-contained mass tucked in the curve of the pancreas (but not embedded in it). I believe it must have originated in a lymph node, and eventually overtook the lymph node entirely. It was a self-contained, encapsulated mass, occupying its own space. The tumor was removed surgically in 2000. Afterward, the surgeon described to me that all that was connecting it to the body were the blood vessels supplying it, and once he systematically cut all those, he just lifted the tumor out. At the time, the gastrinoma tumor was diagnosed as benign, not cancerous, because it was not in an aggressive-growing state, and it was singular, it had not spread. After surgery, I felt fine for many years.
But then similar symptoms arose again in recent years, again very suddenly. It started in response to taking antibiotics, the label of which stated that diarrhea lasting weeks or longer was a possible side effect. That happened, and it lasted for many years, to this day. However, at first I didn't believe it was a recurrence of ZES, because, after all, it was in response to the drug, and furthermore, it was less severe. But eventually, as symptoms persisted perpetually, I had to accept the possibility it was a recurrence of ZES. So on my first doctor visit to get checked out, I already knew what tests to ask for to check for a recurrence of ZES. The first blood tests showed the tumor markers were off the scale (gastrin, chromogranin-A), much higher than they ever were in the first episode of ZES. So I knew it meant I had a big ugly gastrinoma tumor. The next questions were, where was it, and would it be amenable to surgery? A PET scan answered those questions. It was not a single tumor, there were numerous tumors, which was shocking news. There was a 9cm tumor in the abdomen (about the size of a softball), plus 35 smaller tumors throughout the body, in the liver, lymph nodes, and bones (vertebrae, ribs, pelvis, femurs). In other words, this time it's not benign, it's cancer, and it's stage 4. Maybe it was never really benign the first time; I'm coming to believe there is no such thing as a benign version of ZES. The large tumor is again in the vicinity of the pancreas, this time behind the pancreas, between the pancreas and the spine. Again it is a self-contained mass not embedded in any other organ or tissues. Again I believe it originated in a lymph node. Again I believe it's traceable to a parasite or microbe, which probably lay dormant since the first episode until the antibiotic upset the internal flora balance. As for the smaller tumors, they are embedded in other organs and tissues. But none of them give me any physical pain (except one did for a period of time, as described below). The symptoms I experience are all the result of the tumors' hormone secretions.
It goes without saying that receiving a cancer diagnosis hits you like a death sentence, which sends you reeling as you collide with the reality of your own mortality. Being a Christian did not exempt me from this shock, although it certainly start alleviating it right from the beginning. My first thought was, "I'm going to die." But immediately thereafter, me second thought was, "I'm going to die anyway, so this is fundamentally no different, it's just an occasion forcing me to face the inevitable reality of death." I'll add to this story to describe more about the impact when I have time; this website is a work in progress. But I will say this: I never asked "why me?", I never got angry, I never felt it wasn't fair, I never despaired, etc. The "why me" question answered itself two different ways. First, I accepted the fact that life is hazardous, things happen, nobody is exempt from misfortune, and God's faithfulness remains; it's no more complicated than that, and nothing new. Second, when I learned, contrary to the conventional wisdom, the truth about cancer, that it's not just a random occurrence or genetic bad luck, but a result of identifiable factors within my control, it was no longer a mystery why it happened. I realized my own lifestyle and environment, even though relatively "healthy" by conventional standards, were in fact carcinogenic. The real underlying disease was the conventional wisdom, and my own ignorance, typical of the average person. This not only explained why the cancer occurred, but how to reverse it. Curing that root defect, in other words, liberating myself from the flawed conventional wisdom, was the first step to curing the cancer.
The cancer is a slow-growing type, but eventually it typically becomes aggressive, it's just a matter of time. So I wasn't in an immediate crisis, but still, the matter was serious, and the cancer was, by conventional medical standards, ultimately terminal. It was not amenable to surgery, because the big tumor was too deeply embedded in the abdomen to be reached safely, and the rest of the tumors would remain anyway, so surgery could not cure the disease. My oncologist said that it's "treatable," and the prognosis was that I would have "a long life." When I asked for more specifics on the time-frame, she said "five to ten years," which I don't consider a "long life" at age 52, with a wife and two kids ages 16 and 10. My further research revealed that that's the high end of the prognosis range; the more tumor load in the liver, the shorter the prognosis, and I do have liver tumors. The "treatment" is a drug called octreotide (brand name Sandostatin LAR Depot), which is a hormone-blocker. It blocks the tumors' production of gastrin and serotonin, which prevents symptoms. Octreotide is also reputed to have a tumor-suppression effect, slowing (but not reversing) tumor growth, which supposedly puts off the aggressive phase of the disease, and extends lifespan. It is prescribed continuously for the rest of the patient's life. I was on it for three months, and it does prevent the symptoms. I originally consented to it, even though I was becoming leery of conventional treatments, because, hey, it wasn't chemotherapy, and was supposedly the best and only treatment. But because of the negative side effects I was experiencing and reading about, the existence of other, safer symptom-control options, my research which revealed that the longevity effect of the drug was ridiculously overrated, and my growing skepticism of conventional treatment, I quit it, against my oncologist's advice. I am not receiving any conventional medical treatment for this cancer. Instead, I am applying the natural regimen described on this website, and the cancer is healing. After being off the octreotide treatment for over a year, I asked for a prescription for, and got, a self-injectable supply of it to keep on hand in case I need spot-treatment for severe symptom relief. I still have the supply unused, I haven't needed it. I use over-the-counter H2-blockers like famotidine (or occasional PPIs like omeprazole) to reduce stomach acid production, combined with natural therapies, which keep my symptoms under control.
By conventional medical standards, there is no curative treatment for this type of cancer, the octreotide is only palliative. By conventional medical standards, this disease never diminishes under any circumstances, it typically only inexorably gets worse and is terminal. But that is not happening in my case, due to a lot of prayer and nutritional therapy. My discovery of nutritional therapy was the result of receiving a gift from an acquaintance, a book called "Chris Beat Cancer" by Chris Wark. The theory is that healing cancer involves the following elements: (1) overdose of plant-based nutrition (no animal products), particularly incorporating juicing because it's the only way to get a high enough volume of nutrients, (2) detoxification, (3) exercise/sunshine, and (4) mental/emotional/spiritual de-stressing; prayer and devotion to God are key. I immediately saw the soundness of the theory the first day reading that book; by the time I finished the book the next day I had already radically changed my lifestyle, and have never looked back or slacked off. My healing progress is the result of lots of prayer and the natural therapy described on this website.
My cancer has reversed course and is diminishing slowly but steadily, without medical treatment. This progress is unprecedented, and is blowing my oncologist's mind. Follow up scans show all of the tumors are shrinking; the primary tumor has shrunk 32% in mass so far (as of Dec. 2019), or at worst, the condition is stable, which is also unprecedented. On top of that, I feel fantastic, I lost 50+ pounds of fluff without trying, various aches and pains are gone, and I feel like I'm in my 20s again. This type of regimen is not only cancer-fighting, it's health-promoting in general, and can be effective against a wide variety of chronic diseases. My regimen is intense because it's aimed at healing an active case of cancer. But if a chronic disease is not your issue, a milder version could be used for disease prevention or general health.
Here's one example of tangible progress. One of my tumors is on the lower part of the pelvis bone, right where a leg tendon connects. I had had pain in that spot for about 3 years before my diagnosis, and didn't know what it was. I assumed it was a muscle or tendon strain, and would often try to stretch my leg to work it out. But the pain never changed. Until one day, after several months of being on my new diet, I suddenly realized that that pain was gone. I then connected the dots, realizing that that pain was in the exact spot of one of my tumors visible on the scan. It, like all the rest, had been shrinking visibly on the scans, and now on top of that, I had physical evidence, in the form of the cessation of that chronic pain, that that tumor was indeed shrinking. I figure as long as that pain does not exist, the disease must not be progressing, because I'd feel it if that particular tumor was getting any bigger.
Is the regimen I describe on this website (or something similar but tailored to your needs) difficult to follow? As a practical matter, yes. As a matter of commitment and perseverance, yes. But it all comes down to motivation. Before I was diagnosed with cancer and was compelled to research these issues, I thought of myself as rather conscientious and informed about diet and health. But I have since learned the facts were very different than what I thought; the toxicity in the standard American diet is shocking, the professional complainers (ideology aside) are actually correct. So I have a completely new understanding and motivation. I was liberated from the ignorance I didn't know I had, so I can't un-know what I now know. What made the difference in my motivation is that my very life was at stake. So it was not hard at all for me to make the drastic switch, and stick to it. People ask me if I miss all the stuff I used to eat. Nope, I've never looked back; I simply can't afford to, so I made a choice not to. It's easy for me to not take the bait, because I now see the hook conspicuously sticking out of it. And of course I can't deny the tremendous beneficial results; why would I want to undermine that? It all comes down to realizing what's at stake. If you are in crisis now, you may know what I mean. If you are not in crisis, you may not think you need to make drastic changes; it may take a crisis to shatter your apathy or assumptions. But please take it from me, you are not immune, crisis probably WILL come someday, the odds are against you. But you're now ahead of where I was, because you now know my story of both the crisis and what helped me. Let that be your motivation to commit to a plan aimed at prevention. Here's an example: My oncologist prescribed monthly blood tests, including for liver function (because this disease typically eventually kills the patient by tumors overtaking the liver). I've had normal liver function test results all this time. But my naturopathic doctor said that your liver function could be diminished 80% by the time liver function blood tests show abnormal results. The point is, the human body has a lot of resiliency, and a very wide margin for surviving dysfunction, so you could be slowly declining in health and never know it until it crosses a certain threshold and symptoms appear. In other words, just because you feel healthy, doesn't mean you are, and just because your standard, common diet hasn't killed you yet doesn't mean it's not slowly doing so. You may be in crisis and not know it.
I hope my story will motivate you to re-think what you thought you knew, and motivate you to do some research and make needed improvements. I thought I lived a pretty healthy lifestyle, and never thought I'd face a deadly crisis. I thought I had defeated the tumor monster the first time, once and for all. Then I got incurable cancer, at a relatively young age. I learned the hard way that our assumptions about what is healthy are very incorrect, and the risks we think won't affect us almost always do, it's just a matter of time. Neither the statistics nor the clock are in your favor; I can say with relative accuracy that your deadly crisis is coming, unless you make drastic changes now, and maybe even if you do. Don't let what happened to me happen to you; don't wait for the deadly crisis to arise to motivate you to learn what you didn't know before, and make the necessary drastic changes. Take a shortcut and review the resources I recommend to you now, rather than scrambling to discover them in an emergency. Switch roads now, while you have the most time in front of you. You may already have cancer and not know it yet; it's very common for it to exist for years before being discovered, only when it is so advanced it starts showing symptoms. There's no time to waste, get serious now.
THE FIRST EPISODE
Here’s a more detailed story of the first episode of my 30-year Zollinger-Ellison syndrome (ZES) drama. If, as you read this, you notice my cynicism of the conventional medical approach, maybe by the end of the story you’ll understand why.
I lived a normal life until April 1992, age 25. I then traveled from my home in the USA to the island country of Grenada in the Caribbean, for a one-week missionary trip with my church. The rest of the group stayed in a hotel, but my wife and I stayed in the home of our friends who were missionaries there. As a result, we ate home-cooked meals the whole time. Except once, when we went out to a restaurant for dinner. I had a chicken dish, which later didn’t agree with me, and I had severe diarrhea, obviously food poisoning. It included pain, nausea, and cramping. I figured it would resolve in a day or two. But it didn’t. I was a prisoner in the bathroom for most of the rest of the trip. When we returned home, it was the same story, the diarrhea continued. It continued for a total of 8 years. Yup, it had started suddenly and severely, and never stopped. I spent most of my life either in the bathroom, or wishing I was in the bathroom. It was hard to lead a normal life. I was convinced I must have acquired a parasite or some other kind of microbial infection. What else could explain the sudden onset of these symptoms, while traveling in a less-developed country?
I went to the doctor to get it checked out. All tests were negative, including stool tests, lower GI flex-sigmoidoscopy, upper GI endoscopy, and blood tests. A correct diagnosis was elusive. I saw numerous doctors over the course of time, and none of them could explain the condition or believe my story about the sudden and continuous onset. Because of this futility, I would get discouraged about seeing a doctor, because it was useless, so I went for long stretches without seeing a doctor. Then I’d get frustrated about the lack of a diagnosis, and go back to the doctor and try again to get some answers. This cycle repeated for years.
At one point, my gastroenterologist, trying to encourage me, said, “Well, at least be glad you don’t have Zollinger-Ellison syndrome. If you did, you’d have a tumor, you’d have terrible ulcers and terrible diarrhea, you’d really be in trouble.” He assumed that I couldn’t have ZES because it was such a rare disease, and I didn’t have ulcers. But I DID have ZES. But it took a lot more time and grief to reach that conclusion. There were some simple tests for it, but nobody thought they were necessary, because they didn’t think it was possible I could have that disease.
After I had persistently insisted that I must have a parasitic infection based on the circumstances of the onset of my symptoms, that same gastroenterologist placated me by prescribing Flagyl, an antibiotic applicable for parasites. He further prescribed Zantac (ranitidine), which is a stomach-acid blocker, because he said reducing stomach acid would help the Flagyl work better. So I took both for whatever the prescribed period was, something like 10 or 14 days. This was around 5+ years into my drama. While I was on these drugs, I got complete relief from symptoms; it was like a miracle. I thought we had killed the culprit parasite. But when I finished the course of drugs, the symptoms came back. I had some Zantac left over after finishing the Flagyl, so I took it by itself. Again the symptoms stopped. This proved that it was the Zantac, not the Flagyl, that had made the difference. And that meant that I must have excess stomach acid causing the diarrhea, since cutting the acid production stopped the diarrhea. When I reported this to my doctor, he agreed that excess stomach acid was causing my symptoms, but still didn’t know what was causing the stomach to produce excess acid. So this was a step in the right direction of a diagnosis, but not yet a diagnosis.
The doctor ordered a gastrin blood test, to see if it would reveal elevated gastrin, which would explain the excess acid production (gastrin is the hormone that stimulates the stomach to produce acid). Since a ZES gastrinoma tumor produces gastrin hormone, one of the tests for ZES is a blood test measuring gastrin. The normal range is under 100. My test result was something like 135, and a repeat test was about 150. The doctor noted this was high, but didn’t believe it was high enough to signal ZES, because a typical ZES patient will have a test result of many hundreds. That ended the hunt for ZES at that time.
In the meantime, he prescribed Prilosec (omeperazole) for acid-blocking, since it is a once-daily, time-release formula, much more convenient and effective than 4x/day Zantac. I was on Prilosec for a year, with complete relief of symptoms.
However, there were two problems. First, the side effects of Prilosec were becoming unbearable. It was causing muscle aches, rashes, dry mouth and dry eyes, headaches, and blind spots in my field of vision (it has other serious effects I later discovered). Second, I knew the symptom relief was masking the underlying unknown problem, which needed to be diagnosed. So I quit the Prilosec, and endured the symptoms, with only moderate relief from alternatives like Zantac, Pepcid, Pepto-Bismol, etc. And by this time, I started feeling heartburn and acid reflux, which I never felt in the prior years. I went back to the doctor, committed to not giving up without a diagnosis. I switched to another gastroenterologist because my present one admitted he had no more ideas about what to do. The next gastroenterologist admitted the same thing, except that he also committed to putting our heads together and trying his best to figure it out. That commitment eventually paid off.
The first approach was to try to act directly on the stomach to prevent it from producing so much acid. The doctor suggested a vagotomy, which is a surgical procedure in which the nerve controlling the stomach, the vagus nerve, is severed, thus shutting down the stomach’s acid production to almost zero, permanently. Admittedly it’s drastic, but that’s how desperate we were. So he referred me to consult with a surgeon. The surgeon said a vagotomy could easily be done, and would certainly cut the acid production and give me relief from my symptoms. He also suggested the alternative of surgically removing my stomach, which I refused to take seriously. He then suggested I consult with his colleague for a second opinion, a more experienced surgeon who was the head of the surgery department of that particular clinic. So by the time I met with him, I was very seriously considering the vagotomy. But he refused to advise it. He said, wisely, that all it would do is mask the problem by alleviating the symptoms, giving me a false sense of security as if I was cured, when in fact the root cause remained, probably getting worse. (And I later learned a vagotomy is a terrible idea from a neurological standpoint, since the gut is actually very neurological, even referred to as a "second brain," so severing the link between the gut and the brain is insane.) So he rightly talked me out of it, advising me to keep trying to get a correct diagnosis of the root problem. Back to the drawing board.
Eventually, we ran out of new tests to try, except for tests for ZES. Even though ZES was considered too rare to be a likely culprit, and my symptoms were not squarely typical with ZES (particularly, no ulcers), still, it was the last possible thing on the list of things to test for. So my GI doctor ordered ZES tests. The first one was another gastrin blood test. Again the result was high, but not very high, and so considered inconclusive.
Next was an octreotide scan/scintigraphy. Octreotide is a synthetic version of the hormone somatostatin, which is what the body uses to halt hormone production, it’s a hormone-blocking hormone. If there is a hormone-producing tumor like a ZES gastrinoma, it will absorb the octreotide. The test uses a radioactive version of octreotide, so when the tumor absorbs it, the radiation concentration can be detected by a scanner. At that time in 1999, the scanner does not produce as detailed an image like a CT scan would, it shows a blob of concentrated radioactive octreotide that correlates to the general vicinity of a tumor. If the test is positive, a CT scan (or PET scan) would be the next step to get a more detailed look inside.
As I was laying on the table getting scanned, I had a clear line of sight to the technician’s computer monitor showing the results. There was big black blob on the screen. I asked the technician what that blob was. He knew it had to be a tumor, but of course he couldn’t tell me that. So he made a lot of excuses, saying a lot of organs absorb the radioactive dye in any case, such as liver, spleen, bladder, etc., so one of those could be the blob. Ultimately the doctor called me to give me the results: it was a gastrinoma tumor, it was ZES. Finally the correct diagnosis. That was November 1999, 7-1/2 years after the onset of my symptoms.
The next test was a blood test for chromogranin-A, a protein produced by gastrinoma tumors. The result was definitely high, confirming ZES. I don’t know why this test couldn’t have been done years earlier, it’s just a simple blood test. But nobody thought of it, and I didn't know to ask.
Meanwhile, this would be the point that I should have been referred to an oncologist, because ZES is really an oncological issue, often cancerous (more often than not). But I didn’t know any different, and apparently my GI and surgeon didn’t either. Again, this is so rare, they’ve never seen a real case in their career, they’re just reading in the manual about what to do. And this was 1999, when the internet was just gaining momentum and relevance, and what internet research I did on ZES didn’t reveal much info.
The next test was a CT scan in the vicinity of the blob. It showed the tumor as plain as day, it looked like a spare organ. It was about 5cm long, very distinct, about the size of an egg, and it was tucked in the “elbow” of the pancreas. It wasn’t entirely clear if it was embedded in the pancreas or not. More on that later. A PET scan probably would have been a good idea (instead of a CT scan), because a PET scan is a CT scan that uses radioactive dye that is absorbed by tumors, making them light up on the scan. This might have detected smaller tumors not detectable by an octreotide scan or regular CT scan. But nobody thought of it, and I didn't know to ask.
The next test to confirm ZES was a secretin stimulation; this is really the most definitive test of all, because it can detect the presence of a tumor even if the tumor is too small or indistinct to be detected by an octreotide scan or CT scan. Secretin is the hormone the body uses to counteract gastrin, it shuts off gastrin production. So they set you up with two IVs, one in each arm, one to inject secretin, and one to draw a series of blood samples. They inject secretin, then take blood samples at certain intervals, to check for changes in the level of gastrin. If there is no tumor, the secretin will cause gastrin production to drop. If there is a tumor, it is sensitive to secretin in an opposite way (that’s its diabolical tactic to keep gastrin production high), and increases its gastrin production, which is clearly evident in the blood samples. In other words, it’s a black and white test, after secretin is injected, if gastrin goes down, there’s no tumor, if it goes up, there is a tumor. Again, this could have been done early in the game, but... you know.
So the doctor ordered a dose of secretin to do the test. But over a period of weeks, the supply never came. I finally got a call from the doctor saying there was a shortage of secretin, no pharmacy has it. He explained that the reason was apparently because it had been found that secretin injections benefitted autistic children in some way, so it was being prescribed for that purpose, causing the supply to be all used up. So he was at a loss as to what to do. So he suggested that I call every pharmacy I can, everywhere in the country, to hunt for it. I couldn’t believe he would expect the patient to do that, but that’s all he could think of. So I tried. I got no results calling around. Then I started searching the internet. I looked for organizations that specialize in autism, to see if they had any leads on supply. I finally found a pharmacy in Tijuana Mexico, that had a connection with an organization in San Diego, CA, that appeared to supply it. I called them and inquired, and they said their product was a slightly chemically different version of secretin than what would normally be used for this test, but they thought it would work, and would supply it in response to a prescription. So I connected my doctor’s office with them, and we got the stuff, and it worked. When I explained to my doctor how my internet research had produced this result, he said, “I’ve got to get a computer.” This was 1999, and this doctor had never owned a computer in his life. Unbelievable.
Anyway, when we did the secretin stimulation test, as soon as they injected the secretin, I could feel the tumor tingle. I knew it was the tumor because I’d already had the CT scan and knew exactly where it was located. I even told the nurse about the tingle as it happened. After feeling that tingle, I knew the secretin had stimulated the tumor to produce gastrin, so I didn’t need to wait for the results of the test to know it would come out positive. It did come out positive, exactly as a ZES could would look.
So all these tests confirmed the same thing, I had a gastrinoma. The only treatment option I was informed of was surgery. Today, I have learned that octreotide is a treatment option (for symptom relief), but at the time, nobody mentioned it. And nobody was concerned it might be malignant. Again, I never saw an oncologist. The only thing being considered was surgery. The question was, could this tumor be removed?
I consulted with the same surgeon who originally refused to do the vagotomy. He recommended surgery, but there was a risk of a complication. It was not clear from the CT scan images whether the tumor was embedded in the pancreas or not. Certainly most of it was not, but the head of the pancreas seemed to be hugging it, and it wasn’t clear whether on that side where the tumor and pancreas were in contact, if the tumor was embedded in the pancreas or not. The pancreas is shaped like a question mark laying sideways, with the curved, larger end of the pancreas being the “head,” and the remainder tapering down to the “tail.” The head of the pancreas is the business end of it, that’s where all the ducting is for the enzymes to flow into the intestines.
It’s common for gastrinomas to be embedded in the head of the pancreas, and very uncommon for them to be not embedded in organs. This was a concern because if it was embedded in the pancreas, the pancreas is not very amenable to surgery. The surgeon said that trying to carve a tumor out of a pancreas and sew up a pancreas is like trying to sew wet tissue paper, it just doesn’t work very well. One way to deal with a pancreatic-head tumor is to use the “Whipple” procedure. This is where the surgeon cuts off and discards the head of the pancreas entirely, disconnects the stomach from the duodenum, and re-plumbs the whole system in a different configuration. It’s a complicated, risky, and not often successful surgery. Back when the first gatroenterologist told me to be glad I don’t have ZES, he also described the Whipple, saying, “you think you have symptoms now, if you got a Whipple you’d really have symptoms of severe diarrhea, weight loss, and morbidity.” The success rate of a Whipple is pretty low, at least it was at that time.
So as the surgeon and I were eyeballing the CT scan images, trying to discern whether the tumor was embedded in the head of the pancreas, it just wasn’t very clear. The tumor was tucked in the elbow of the pancreas. The surgeon said he couldn’t tell in advance whether a Whipple would be necessary, so I was in a quandary as to whether to consent to surgery. Everybody thought I needed surgery because it was the only available “cure,” but that Whipple issue was a huge hazard that could make the “cure” worse than the disease. So I asked if I could take the CT images home and scrutinize them more thoroughly, and the doctor said yes.
This was back when the images were on x-ray film (today they are digital). And CT image resolution has come a long way since then; at that time, the images were rather blurry by today’s standards. The images consist of a series of cross-sections. Imagine if my body were a loaf of bread, a stack of slices from top to bottom. Each slice is a separate image. So as I scrutinized the images one by one, over and over for hours, I tried to assemble the images in a stack in my mind to create a 3-D model of the tumor and pancreas in my mind. After hours of staring at those images, I had a pretty good 3-D model in my mind. In that mental model, I could see a distinct margin of separation between the surface of the tumor, and the surface of the pancreas. I was pretty sure the tumor was not embedded in the pancreas, it was just in contact with it, but separate from it. So I believed the tumor could be safely surgically removed without a Whipple.
But I wanted a second opinion. So I consulted with that first surgeon who originally was willing to do the vagotomy. He was also an assistant to the second surgeon, so they were a team. He had no definite opinion about the issue of whether the tumor was embedded. As for surgery in general, he had more drastic versions of the incision pattern he would use to open me up. And frankly, as he would gesture and point to diagrams, his hands didn’t seem very steady. So I wanted a third opinion.
I went back on the internet to see if I could find out if this surgery could be done laparoscopically. I found a surgeon that had pioneered laparoscopic surgery procedures. I consulted with him. He stared very intently at my CT scans, trying to see if he thought the tumor could be reached laparoscopically. He finally said it was impossible, it would have to be an open surgery. So I wanted a fourth opinion.
I inquired of UCLA Medical Center in Los Angeles, figuring they’d have an expert. I met with their top pancreas guy. He was not a surgeon, but he knew pancreases. I showed up with my CT scan in hand. He took one look at it and said, “You’re getting a Whipple.” I rebutted, saying I had scrutinized those CT images and it looked to me like the tumor was not embedded in the pancreas, so could he please take a more careful look at those images? But he wasn’t interested in looking any further at the scan. He was adamant, saying, “That tumor is embedded in the pancreas. I can refer you to my colleague who’s the best Whipple surgeon there is.” He then went on to scold me for having gone off of Prilosec, saying the acid reflux was going to destroy my esophagus. I told him I’d think about all this, and left (escaped would be a better description). As my wife and I were heading back to the car, I articulated what was clearly on her face: “If I let those guys touch me, I’ll get a Whipple whether I need it or not.”
So I went back to my local surgeon and scheduled the surgery. I was confident in my own analysis that the tumor was not embedded, and that a Whipple would not be necessary. I also asked the surgeon to assure me he wouldn’t do a Whipple unless it was absolutely clear the tumor was embedded and could not be carved out. He assured me, saying, once he sees it with his own eyes and handles it with his own hands, the status will be abundantly clear, and the status itself will make the decision, not him. That was good enough for me.
Then, somewhere along the line in my pre-surgery appointments, I asked him two things. First, my wife suggested I ask if I could donate my own blood in advance for myself in case of the need for a blood transfusion during surgery. Neither blood transfusion in general nor self-donating in particular were things he would have raised on his own initiative, but since I raised them, he said yes, I could donate for myself, and he’d make the arrangements with the blood bank. I also asked how much blood he thought I’d need, to make sure I donated a sufficient amount. He said, “two pints.” I then asked what if there were complications, would that be enough? He said, “make it four pints.” Turns out four pints is the maximum you can donate for yourself, because you can give one pint per week, and blood only lasts a maximum of four weeks. So I scheduled to give once a week, for four weeks before the surgery date. So I got a better arrangement as a result of asking a question he never gets asked and never bothers to mention.
Second, I asked him to walk me through the surgery, tell me step by step what he’s going to do. I had no idea what hazards I was looking for, but I just knew, after all I’d been through, I needed to ask what they won’t take the initiative to tell me. So he started describing the steps, one of which was, “and then I’ll remove your spleen.” I stopped him there to ask why. He said, “well, I’m already in there, might as well do it then to avoid having another surgery to remove it later.” This sounded extremely ridiculous, so I probed further, asking, “do you really expect me to need a splenectomy sometime in the future?” He had no good answer, all he could say was, “you never know, so I might as well do it while I have you open.” I then refused consent to any non-essential procedures. I said, “I don’t know exactly what a spleen does, but I know God gave it to me for a reason, it has an important function, and I want to keep it. Don’t remove my spleen, or anything else not absolutely necessary for this tumor removal.” I have no idea what his real rationale was for that, maybe it was in the way, and the surgery would be easier with it out of the way, or maybe he really did believe what he said; I’ll never know. But I do know I saved my spleen, and who knows what else. Just because I asked what I didn’t know to ask. (I have since learned that the spleen is an extremely important part of the immune system, which I really need.) I obtained my medical records after the fact to confirm what really happened, and nothing extra was removed. By the way, get copies of your medical records every time. You may be shocked by what you read. I found many errors. And of course ask questions, including open-ended questions, to cover what you don't know to ask.
I then told him I wanted to keep my tumor in a jar. He said, “no, it has to go to the pathology lab for analysis.” So then I asked for the next best thing, for photographs to be taken. He agreed; I think they take some pictures for the file anyway. And I confirmed with the nurse before I went into the operating room that she was planning to take the pictures. So I have souvenir copies of the ugly pictures of the surgery and the tumor.
On the day of surgery, I had diarrhea one last time an hour before surgery, and that was it (for a period of years). The surgery went without a hitch. As I was waking up in the recovery room, I perked up to ask the nurse, “did I get a Whipple?” She said no, so I slumped back down, content to relax. As I was being wheeled to a regular hospital room, rolling past the waiting room where my family was, my wife blurted out, "you didn't get a Whipple!" Yup, it was a big deal.
A few days later when the surgeon came to check on me, I asked him to describe the surgery. He described the tumor exactly as I had seen it in my mental model. He said it was tucked up in the elbow of the pancreas, and as he peeled back the pancreas off it a little, it would expose blood vessels feeding the tumor, which he’d cut, and he kept peeling and cutting until the tumor fell out; nothing was holding it in place except the blood vessels connected to it. I asked him how much blood he transfused, and he said, “none.”
I spent a week in the hospital. At first, they didn't allow me any food or liquids, all I had was an IV drip. The theory was, because my stomach had been manhandled, it was in shock, and food would make me vomit. Then they introduced foods slowly, clear liquids first, bland foods next, then regular food. The food choices had NOTHING to do with actual health; knowing what I know now, it was ridiculous for them to feed me what they did. They just utilized the regular hospital cafeteria menu. In hindsight, the most ridiculous thing handed to me was pork chops. And none it was any good, it tasted like ... hospital food. So I asked my wife to bring some food from home. Diet and nutrition were NEVER a subject of advice or therapy, which I know now is a catastrophic dereliction. As for pain (which was very severe), a nurse came in with a syringe of vicodin and said she was going to inject me in the belly. Any touch on my belly was super painful, so I said, "NOPE, find another spot." (Did you know you can disagree with the "experts"?) So the buttocks got the stab each time, no problem. Speaking of pain on the belly, when the surgeon pulled off the bandage to inspect the scar, he just ripped it off non-gently; the pain was so bad I had to strain to keep from slugging him. I also had a JP drain, exiting through a stab hole in my abdomen. On the day I was discharged, as they pulled that tube out, I could feel it working its way through my internals, and the skin was being stretched out along the length of it as it exited, and the thing was profusely long. That was also an almost-slugging pain. They manhandle you like a rag doll.
I made a full recovery with no issues, and no more symptoms. Follow up blood tests showed normal gastrin and chromogranin-A. The surgeon said that during surgery he had palpated surrounding tissues and found no evidence of more tumors. He said he believed it was benign, not malignant, and recurrence was unlikely. The pathology report was not quite so optimistic. It said the tumor cells had some malignant characteristics, including the presence of tumor cells in the blood vessels exiting the tumor (suggesting spread). But it was equivocal. The report also noted that gastrinomas are frequently malignant. But still, the surgeon disagreed, reiterating his opinion it was benign, and would not recur.
After I’d made a full recovery from surgery, I went back to the gastroenterologist for a checkup. Of course by this time I was not shy about telling doctors my opinion. I told him, “I have two things to tell you. Number one, thank you for saving my life. Number two, you did a lousy job of it.” To his credit, he sympathized with me, and even refused my thanks, saying something to the effect of, “I can’t accept your thanks, you saved your own life, with your diligence and legwork.”
I felt normal for at least the next 10 years. I had occasional blood tests, always normal. I was convinced the disease was cured permanently. I felt so normal for so long I eventually got to the point that the anniversary date of my "cure" would pass without my noticing it. Thus ended the First Episode.
Then came the Second Episode.