Rosemary’s Story: Carcinoid Cancer
Category:Cervical Cancer Tags:Carcinoid Cancer, Rosemary's Story
Rosemary's Story: Carcinoid Cancer By admin
Hi. My name is Rosemary and I am 48 years old. I live in Minnesota in a suburb of the Twin Cities, a suburb of Minneapolis. I am single, have no children, but have a great companion named Guinness, a black and tan cocker spaniel, and believe it or not, he's brought me a lot of comfort over the years. To just give you some background about my story, it's kind of an interesting story because I suffered from some symptoms that were unexplainable for nearly three years. In January 1996, I started noticing that I was flushing, having red flushes and having diarrhea and I just assumed it was probably menopause. I was in my early 40's and I knew some of my sisters had gone through menopause early, so I just assumed that was probably what was going on. Tests Inconclusive Despite Extreme Pain and Symptoms After a while, I went and made an appointment at the Clinic and told them what my symptoms were and asked to have the test for menopause done. Well, it came back that I wasn't in menopause. So, I thought--oh okay. As the symptoms continued and as the diarrhea became worse and I was losing more weight, my doctor and I decided that we needed to do some other tests. I wasn't concerned, really, at that point. We thought, maybe I had some intestinal parasite or something that I'd picked up when I'd been on a recent trip to Mexico. So we started with the tests where you do a stool collection and they test that, and the only thing that they could determine through those tests was that I had no bacteria in my gut. Well, now, I assume it's because I was having such ferocious diarrhea, nothing was staying inside me long enough to grow any flora or bacteria. So I was told to eat yogurt. Well, I tried that. It didn't help any, and so we continued with--he wanted to do some more tests. So he scheduled me for a colonoscopy. For some reason--well, I'd been told I have a kinky bowel, and the colonoscopy was quite painful for me, even despite the doctor administering pain medication throughout the procedure. So they did remove one polyp, and that was fine. It was benign and after that I really didn't want to have any other tests because it was such a bad experience--the colonoscopy. So I just suffered for several months with the symptoms. I was working full-time as a training director, and led a very, very busy active life. I just kind of tried to push this out of my mind, even though the flushing was getting worse, the diarrhea was getting worse, I was losing more weight, and then I had really severe heart palpitations that were pretty disturbing. I just eventually agreed to do more tests because I knew something was wrong. So we did other diagnostic tests. I had a small bowel biopsy, I had an endoscopy and a number of other tests, none of them all that pleasant, but also none of them were that terrible either. I have to say they weren't that bad, but you know, I'd get my hopes up that they were going to find something and there would be an explanation for these symptoms. And every time the tests kept coming back that everything was fine. Everything was fine. And I had also consulted with some other doctors. I went to see a couple ob-gyn doctors to ask their opinion. Could it be menopause? Because they kept testing me for menopause and thyroid and all these other things, and everything was normal. One doctor put me on clonidine, a blood pressure medication, thinking that might help the heart palpitations. It didn't really help. It just made me really thirsty. [laughs] But I stayed on it for--oh, I don't know, probably a year and a half, I bet, up until the time I was diagnosed. I also consulted with a retired oncologist, a name somebody had given me, and he gave me the name of a pathologist who specialized in gastroenterology. So I talked with him and I explained to him that I did a 24-hour urine test called 5-HIAA that's used to test for carcinoid cancer, a rare neuro-endocrine cancer, and it came back normal. Flushing and diarrhea are symptoms of carcinoid syndrome and I was just concerned. Was that accurate? And the pathologist said, "Well, probably that was accurate," and I didn't have this disease but he urged me to get a CAT scan, and so did some other doctors. So I pushed and pushed with my primary care physician, who I had been seeing throughout all this, and I finally was scheduled for a CAT scan the end of--I believe it was December 1996. This was the same year I had had all these problems and all these other diagnostic tests. Well, lo and behold, the CAT scan came back fine. Nothing. They just noticed something near the uterus, and I ended up having an ultrasound for that, which didn't indicate any problem. So by this point it was like, okay, I thought I was just becoming a hypochondriac or something. These symptoms were really bothering me, but I thought, well, there's obviously no health problem; nothing wrong. My doctor was convinced there was nothing wrong because all these tests said there was nothing wrong. Tireless Persistence Leads to Diagnosis So I continued to just go about living my life as best I could, even though these symptoms were getting more and more distressing. So I went through 1997 and in 1998. My husband, who I had only been briefly married to for a couple of years, he decided that he wanted a divorce. And that was fine. He had a serious drinking problem and that was for the best. We had an amicable divorce but that stress was obviously making my symptoms worse. Trying to go through a divorce, trying to sell my house myself and buy another house. Meanwhile my symptoms were to the point where I was having thirty of these severe hot flashes every day, from head to toe, where I turned almost purple, shortness of breath, the heart palpitations that would just stop me in my tracks. I just about wanted to collapse. As I described it to my doctor, I felt like I was going to have a stroke. My blood pressure was off the charts, and the diarrhea and the weight loss. So anyway, this was all obviously distressing but I was then diagnosed with low thyroid beginning in 1998, and I was also diagnosed in full-blown menopause. So it was kind of odd how all of a sudden these tests that we had been continually checking for showed that I had these two endocrine events happening almost simultaneously. So anyway, I thought, Oh great! Give me the medication for the low thyroid. Give me the medication for the hormone replacement therapy. I'll try anything. So of course, I was looking for some relief from my symptoms, but didn't get any from those medications. In 1997 he [my doctor] had said, "Rosemary, I know it's not cancer or anything serious. The CAT scan and all your tests were normal." Well, that was unfortunate, because I think he convinced himself that it wasn't anything serious, even though he was really good about being persistent and pursuing all these different tests. It would have been nice maybe to have a fresh approach--for him to maybe refer me to somebody else just for a fresh pair of eyes and a fresh viewpoint. But that didn't happen until I convinced myself there was something serious, and I assumed it was liver disease because my legs were swollen, my belly was swollen. Even though I was losing weight, I couldn't fit into my clothes, they were tight around my waist from my distended belly and the legs and the ankles and the feet. I had been doing medical research for quite a while and I just knew something serious was wrong. I was not feeling well, I didn't look well, and I finally thought, well, I'm going to go to Urgent Care--which is like emergency ER. It's a clinic that's open on Friday nights and through the weekend. I went on a Friday night, May 7, 1998, and kind of concocted a story so that they would see me and not think I was some kind of nut case. I said I was having abdominal pain and this and that. I finally got ushered in to see the doctor and explained my concerns. The physician had me lie on the exam table and she palpated my stomach and abdomen and told me that my liver was enlarged and I needed to get to my doctor right away. Well, that was a Friday night and that was the longest weekend of my life. I was in such agony; in terms of worry, concern, not knowing who to tell. I was supposed to go on a walk for Race for the Cure, the breast cancer walk, that weekend with a group of women friends. I thought it was pretty ironic but I still wanted to do that. I called one of my close friends that was going to be doing the walk with me and explained to her that, emotionally, I wasn't in a very good place because I had just received this news about my enlarged liver and I was worried. Somehow the word got out and more people found out about this, but at that point I was just kind of being quiet about it. So on Monday I got to see the doctor right away, and he didn't seem overly concerned but he scheduled me for a CAT scan right away. I had a CAT scan within a day, and I called him, and he said, "Well, why don't you come in and let's review this." And I knew that wasn't good. And I went in and sat in the exam room, and I waited and waited and waited. I knew that wasn't good because he was seeing other patients, trying to clean out the clinic, I kind of suspected, before he came in, to give me enough time. I was alone and he walked in and he said to me, "Rosemary, it looks like you have cancer throughout your liver." And I couldn't believe it! I mean, even though I had prepared myself mentally, I thought, for this kind of news. I don't think you can ever really be prepared. I felt like I'd been hit by a Mack truck is how I described it to him when he asked, "Well, how do you feel about this?" He showed me the actual report, and it said there were lesions all throughout the liver, too numerous to count. And I just went, "Oh my God! I'm too young to die!" I was, I think, 44 at the time. So anyway, it was just a whirlwind after that, having to go for liver biopsy and mammograms and this and that, because they didn't know where the primary started. They thought, maybe, it had started in the breast or the colon. The tests all came back fine, the other tests. And they ran all the battery of blood tests trying to determine where this cancer had originated and how it spread to my liver. So the liver biopsy, I was pretty frightened about that, not knowing what to expect. But one of my sisters is a nurse, and she helped me research some information about the procedure. I had called a couple family members and friends to ask them if they could drive me to the hospital, because I needed someone to take me to the hospital and someone to drive me home. After a liver biopsy they don't want you driving, and I couldn't find anybody to take me! I think everybody--people were just in shock or avoidance or denial. I was just stunned that I couldn't find someone and I called a number of people, and finally I just went, "Okay." So, I asked this little dear old lady that lived next to me if she could drive me to the hospital, it wasn't that far away, and then another friend of mine offered to pick me up after the procedure. But, it's very difficult going through these things alone, but most of it, I have gone through alone. I'm very independent. I'm very research-oriented. I am a very active participant in my care. But, it would be nice sometimes to have somebody with me. But generally speaking, I've gone through this alone. Anyway, I went and had the liver biopsy, and it came back with a diagnosis of adenocarcinoma. I was referred to an oncologist right away, after Memorial weekend, and I really liked him instantly. We clicked. He was a young, enthusiastic, cheerful person. Two of my sisters came along, which didn't work out as well as I would have hoped. It's hard when other people that are unfamiliar with medical terms and whatnot are trying to listen, and they don't necessarily hear what's being said. I know they say have another person along, but I think you have to be really careful about who you invite. They more or less said, "We're coming", you know? [laughing] So I saw the doctor alone, and then he asked them to come in. He tried to talk to them about what was going on and that they didn't know for sure what kind of cancer I had. I remember one of my sisters saying, "Well, can't you do chemotherapy?" And he said, "Well, if it's adenocarcinoma and it's all over her liver, she's only got a couple months to live. It really wouldn't benefit her to go through chemotherapy." So he says, "But, I think she has carcinoid, a rare cancer, neuro-endocrine cancer." Finding the Right Treatment is a Process So he ordered all the tests again, and that 5-HIAA, that 24- hour urine test I talked about earlier and they all came back inconclusive, just questionable. So he said, "Rosemary, I need to send you to Mayo. I'd like you to go to Mayo. There's a specialist down there I'd like you to see." So we had to work with my insurance company to get special permission, and they pushed it through and approved it within, I think, a week. Originally I was told it would take a month, but as my doctor explained it, I might could be dead in a month. So I got down to Mayo, and I was there I think for four days, going to appointments and tests, and a lot of the tests I had before I went down there. But I did have a nuclear imaging scan called an OctreoScan(r) that's used to detect neuro-endocrine tumors. And the hope was that they could find where the primary tumor was, that that would light up on the scan. Unfortunately, it didn't. It just indicated that the liver was full of tumors and the mesenteric lymph nodes around the stomach and bowels. So that was a disappointment, because I really wanted to know where the primary came from. But as my doctors have explained to me, the important thing is, it's in your liver and you can't live without your liver, so that's what we have to treat and deal with. So they re-did the biopsy slides at Mayo, and they came back saying it was islet cell carcinoma or carcinoid, and the specialist that I saw said it was carcinoid, the syndrome. The syndrome being the flushing and diarrhea, and not everybody gets those symptoms that have carcinoid. So anyway, I was started right away on some injections, I would do three a day, and it was called sandostatin or octreotide. It's manufactured by Novartis Pharmaceutical. And that helped immensely, but I had to increase the dose, almost as soon as I got home. The other thing I did while I was at Mayo was I just--all the off-time I had where I wasn't having an appointment, I sat in their medical library and read every oncology book and every endocrinology book I could get my hands on. That just benefited me immensely to educate myself about the disease. So with the sandostatin, I came back and pretty much lived a normal life. But I took care of writing out my will, saw an attorney and did my last will and testament. I worked on my Living Will and Advanced Directive, and that was very difficult but I was quite relieved when I finally finished it. It took me a couple months to get all that accomplished, but I wanted to be prepared. And then I took a trip to California later that summer, I didn't know how long I was going to be living and I wanted to have some fun. I continued to work full-time throughout this, but your view, your outlook changes when you know that you're staring cancer in the face; your priorities kind of shift. I think I had a good head on my shoulders already, and a good outlook on life and how it should be lived. A couple of favorite mottos of mine are "carpe diem--seize the day." And also, "knowledge is power." And I have approached my life after cancer like that, and I knew, I was told this was incurable but that I might be able to live from five to seven years with it. So, you know, I thought, okay, this is okay. At least I had a diagnosis after all these years of struggling and all. And then, after about six months, seven months, I started to not feel well again and having more of the symptoms, so we started to do some more testing. And I talked to--I was always trying to consult with other specialists around the world-- carcinoid specialists around the country. And one of the doctors I spoke with, when he heard about my various symptoms and responses to the medications, he asked me, "Well, have you ever had your gastrin checked?" And gastrin is like what all of us produce in your stomach, for example. And I hadn't. So I came back and told my doctor to check my gastrin. It's a blood test, you have to fast for it for twelve to fourteen hours, and it came back quite high. So then we knew the tumors were producing gastrin, and that would be more common for an islet cell carcinoma-- pancreatic islet cell carcinoma, which is a neuro- endocrine tumor. But carcinoid tumors can produce gastrin as well, but they are not as likely to produce the amount that my tumors were producing. So anyway, eventually, after consulting with various doctors and my doctor and I talking, the decision was made. I was getting very sick. I was starting to get--when I would have these episodes of the flushing and all this, I was starting to black out. I was shaking. I was having nausea. I was having dry heaves. It was very scary, and you can die from those symptoms with this. So we decided I should start on a bio- medicine called interferon. The flu-like symptoms are probably the biggest bother for people, the chills and the body aches and all that, and I was concerned. I didn't want my quality of life to deteriorate. But I did start on it and I handled it very well. For the first six weeks I did have some symptoms and I was able to manage them. You know, the fatigue--I took a nap. I'd take the shot in the evening and take some Advil and go to bed, and you drink plenty of water. And then, I don't know, I lost some weight because the loss of appetite, but within six weeks I was feeling fine and I gained back the weight. I've been on Interferon since, I think, it was June or July of 1999, and I use a daily injection. I do a shot of three million units every night and that really helped to control my symptoms. It was remarkable. And that worked for ten months. In fact, we were overjoyed to see--my doctor and I--that my tumor markers dropped. The chromagranin-A blood test is a tumor marker that we use, and my gastrin and the CAT scan showed that about 50% of the liver tumors were gone. So it was very remarkable and I was very pleased and so was everybody else. Tumors Return: Rosemary Quits Job and Readjusts Priorities But after about ten months, last summer, the summer of 2000, I had helped to coordinate a national carcinoid conference here in Minnesota and was very involved and busy with that, and thought maybe the worsening symptoms were just related to the stress of doing that. But we could tell the CAT scans were starting to not look so good, and the blood work, and so finally it was--we knew that I had to do something. And in the meantime my doctor left and was recruited by Mayo. He left the Twin Cities and went down to Mayo, and I had to find another local physician here. He referred me to a great oncologist who I really like, but I still consulted with this doctor at Mayo and a number of other physicians. And, as things worsened, I decided to pack all my slides up, my CAT scans, my medical reports, and send them to a doctor in Sweden who is a specialist, and he reviewed everything and came back and gave me his opinion. And so the decision was made to try chemotherapy. Chemotherapy is usually not effective with these rare neuro-endocrine cancers, but it was to the point where we had to try something. I started on a low dose of 5-FU with streptozocin and leucovorin, and I handled it, tolerated it extremely well. I was on that for thirteen weeks, but unfortunately it didn't have any effect. Then we switched to DTIC, dacarbazine, another chemotherapy, and I handled that, tolerated that actually better than the first one. The first chemo gave me quite a bit of fatigue. But the second one, I just had one dose of it and then I was supposed to have another dose in 28 days, but my blood counts were too low, so then we were going to wait five weeks. In the meantime, my test results came back and my gastrin was up to 19,000 --normal is 100 or below for fasting--and my chromogranin-A was up to 361. So they were very, very markedly elevated. So the assumption was that the chemo was not working, so that was discontinued. I just had my CAT scan and tumor markers done at the end of September. They do not look good. The liver is full, packed with tumors again, and then also my markers are way up. The gastrin is up to 23,000. So I started on thalidomide, anti- angiogenesis medication. I also am taking oral chemo medication, Xeloda(r), and I'm not optimistic. I guess I'm willing to try just about anything as long as it doesn't impact my quality of life too much. I'm tolerating these very well, but I'm trying to be very realistic that the end may be, not far off for me. But that's okay. I've had a lot of time to adjust to the idea of dying. Back in September, last September, I was told by my doctor that things didn't look good, and I was advised to quit work. I did quit work and I have enjoyed the last year traveling and doing whatever I wanted, and that's been great. I was having a lot of grief and loss and sleeping problems and my family doesn't really want to talk about it. I've always been the strong one, the one that holds the family together and organizes all the family doings, and they just-- it's very hard for them. I look healthy. They look at me and they just don't want to believe what I'm telling them. So, that's hard. You know, you want to talk about it, it's important to talk about it. But thankfully I have friends that I can talk to. And my family; I try and give them the information that they can handle, but that's probably been one of the most difficult issues for me. I ended up calling my insurance provider and asking to see a therapist to deal with the grief and loss issues and some of the other issues, and that has been extremely helpful. I also started a carcinoid cancer peer support group in Minnesota in 1999. We have over forty people diagnosed with carcinoid who come to our meetings. We meet every other month, and the first hour of the meeting we have a speaker--a physician or some other health professional, or a comedian--just a variety of speakers and just high quality, great! Then the second hour we do networking and talk amongst each other about how things are going. This group has been phenomenal because all of us thought we were out there all alone with nobody else diagnosed with this, and here we are. We get to come together every other month and people come from out of state, even, to attend these meetings. So that's been wonderful for me. It's given me a purpose in life, and I feel like I get to use and share what I know, because I have done a lot of research on this. I also have the skills because of being a training director and having run a correctional institution. I have a lot of good experience and I am being able to share that experience, share what I know with others--not just patients and their caregivers, but physicians too. Because physicians, mostly, are very unfamiliar with this disease and they need to be educated too and they can always learn more about this, I think. So it's been a valuable group. I know that these people have helped me immensely and I know that I've helped them. So, a lot of good things have come out of having this cancer, I have to say. I wouldn't have met all the fabulous people I have met were it not for having this diagnosis, this cancer. And I have also been invited to participate in the patient advisory board and will be going to New York to serve on that board. Being asked to participate in this personal story with the Cancer Survivor Network, is just another example of how wonderful it is to be able to take something that you think is going to shatter your life, and turn it into something positive. I'm very happy to be able to share my story and I hope that it's helped you in some way. I really would encourage you to seek out support and be an active participant in your care. Research as much--even if you don't have a rare cancer, try and research about the cancer and about your treatment options. I know that's why I'm alive today, because I have been very active and involved in my care and my treatment, and researching and consulting with a variety of doctors and other patients. That's why I'm alive today and why I have had a great quality of life. So thanks, and have a great day, and "carpe diem"!