My Journey with NET’s began back in July 1997; I was 29 weeks pregnant at the time. My problems started with tooth and jaw ache eventually making it nearly impossible to open my mouth. I became very disoriented, my GP came out to check on me, she asked if I had been drinking as she described me as having drunk 2 bottles of whiskey!, at this point it was decided I needed to be admitted to the maternity ward of my local hospital. After some tests had been carried out it was established that I had pre-eclampsia and being so early term wise I needed to be somewhere that they had neonatal bed for if the baby was delivered early.

In the early hours of Saturday 26 July 1997 I was transferred by ambulance to Aberdeen Royal Infirmary, shortly after arrival my daughter was delivered by emergency caesarean section, weighing 3lb 2oz she was placed in an incubator in the neonatal unit and I was placed in intensive care.

Bloods were taken and it was revealed that I had dangerously high calcium levels of 5.87 mmol/l (normal range2.2-2.26), I was given lots of fluid and Pamidronate to reduce my calcium, the treatment worked as it brought it down to below the normal range. After 2 days I was put on the ward and stayed in hospital for about 3 weeks, Amie my daughter, was still in hospital when I was discharged and came home at the end of September.

This was just the beginning of the tests and screening to find out why this had happened and after about 18 months of still having elevated calcium a CT scan was carried out and finally revealing a 9 centimetre tumour in the tail of my Pancreas. In October 1998 I had an Octreotide scan and biopsy done diagnosing my tumour to be a Nero Endocrine Tumour.

The tumour was removed in November 1998 but unfortunately my Spleen had to be sacrificed in the process due to the way the tumour had grown around the blood vessels. There was no sign of spread which was a huge relief. My case was being discussed with a doctor in Liverpool, who concluded that my tumour was producing PTHrP(Para Thyroid Hormone replacement Peptide), this is a hormone similar to but not identical to Parathormone. This controls the levels of certain hormones in your body.

All seemed well after that and my calcium levels stayed in the normal range, we were using them as a sign of recurrence of tumour. I had my 5 year check up and my calcium levels were raised again, a subsequent CT scan revealed multiple tumours had returned in my Liver. By now 2003 and I was living in the Nottingham area, I was admitted to Nottingham City Hospital for fluid treatment to bring my calcium levels down, this did the trick. But they continued to go up and down and another admittance to hospital was needed this time Pamidronate was used to lower the levels.

For the next 2 years I spent many a time in hospital, by now my care had been transferred to Nottingham Queens Medical Centre liver team who maintained my levels with fluid and Pamidronate.

In 2004 I had transarterial embolization of the right lobe of my liver, but post discharge I suffered with stomach pain and fever and was admitted to my local hospital where I was treated for sepsis. A few days a later I was admitted to Lincoln hospital with heart flutter which was corrected with drug therapy. A CT scan showed that there was no further tumour growth or spread.

In January 2005 I was again admitted to hospital with elevated calcium of 3.36mmol/l, this was treated as an emergency and again had fluid treatment. By now I was also on sub-cutaneous Octreotide injections and was being changed to deep sub cut Lanreotide injections.

At this point it was decided to ask what the long term prognosis was and to my horror I was told that it was not good and would probably only have between 3-5 years to live. My daughter was now 8 and I was just separated and getting divorced, so all in all it was not the best day of my life.

A second opinion was required and through the help of Cancer Research and my friend we found Dr Martyn Caplin and his team at the Royal Free Hospital. I first saw Dr Caplin in February 2005 and he recommended a whole range of blood tests and scans, which he believed would show the extent of my disease and what treatments was the best for me. This was not going to be easy as my hospital in Nottingham where not keen to carry out these saying that the disease was the same as it had been 8 years earlier and therefore they knew how to treat me! We had to contact my local MP to get them to carry out the tests which they did very quickly, the MP said as I was only 33 and I deserved the very best chance to get better.

The tests did get completed and showed that my PTHrP levels were once again high proving that the tumours in my Liver where indeed doing the same as the one in my pancreas had done. Fortunately my bones showed no signs of weakening, but the biggest surprise was that the tumours did not take up the Octreotide in the CT scan so it was repeated at The Royal Free and confirmed they were not Octreotide receptive. I had a FDG PET scan and this was positive.

Whilst all these test were being carried out it was being discussed as to what was going to be the best long term treatment.  Which concluded in a liver transplant, again I was shocked at this as I believed that it must be far worse than I thought or I would never need anything as dramatic as a transplant. I won’t lie it was a very emotional and stressful time to make that decision to go forward onto the list. The operation itself was a major thing and had its own risks. Many more scans were carried out  to prove the tumours were confined just to my liver, but after each scan something new would show up to prevent me going on the list, it would either be a lymph node in my armpit or something in my ovary. So every time I thought the decision would be made it was put back another month while the scan was redone and checked to make sure it was not the cancer spreading. Oh how I wished that just for once in my life my body would behave normally. In between all of this I had started having meetings with the  liver transplant team and had a week’s work up to see if I was fit enough to go on the list if we ever got to that stage.

All the while I was getting weaker and weaker as my body was fighting so hard against the cancer and the hormone in balance. It was with great relief and excitement when it was decided on 28 November 2005 that I could go onto the transplant list. I was told that at that current time people with my build and blood group were waiting about six months!!

One of the silly things that comes into your head is that how will you handle every time your mobile rings is this going to be the call, so because I did not want to have to deal with that it was decided that the call would go to Jayne.

It only really hit me how ill I was at New Year 2006, we had decided to go out in London for the night, we went and had a meal and on the way back to the hotel I fell asleep in the car and was being called boring and miserable. It wasn’t until New Years day when I got up that I realised that I was very poorly, my speech was slurred and I couldn’t get my words right. My jaw was also hurting which I knew was a very bad sign from the previous tumour, so as we were in London we called Hassel ward at the Royal Free, they told me I would have to come down to A&E but they would let the duty liver doctor know I was coming in. When I arrived they took blood and when the results came back my calcium was dangerously high at 4.6mmol/l, so I was admitted to the ward and spent the first week of 2006 in hospital.

I suppose this was my wakeup call as to how ill I had got, it is a very difficult thing to deal with and without realising you can be snappy, angry and nasty to the people who are closest to you, I was not a very nice person to live with never sure what you would find when you got home whether it was a good day or bad day, the bad days got worse and therefore I got more angry and worried as to what was going to happen. It was hard as well as we never actually talked a lot about it because no one wanted to broach the subject as it was upsetting for them and me so we all just walked around on eggshells all the time. It is times like this where you ask why me but there is not an answer to that and the only way forward is to be positive.

After my stay in hospital at New Year my stays in hospital became more frequent in February 2006 I had some Trans arterial chemo embolization to try and control the production of the hormone and make the control of my calcium easier. At this point I was still receiving 3 weekly 120mg Lanreotide injections.

By the end of March it was decided that if I kept having high levels of calcium, I would need to have some more embolization. But fortunately before we got to that stage I got the most wished for call you could want at 1am Sunday 16 April 2006(Easter Sunday) to say that they had a match and I was to make my way down to the Royal Free. It had been agreed that if the call came at night Jayne’s daughter would come and stay with Amie until the morning, so Jayne headed off to collect Niki, at this point I was supposed to have a shower but all I could think about was getting dressed and ready to go, which I did. It wasn’t until Jayne reminded me that I had to shower that I remembered, so I had to undress and get in the shower, sometimes you just go onto auto pilot and don’t know what you’re doing.

We left home and headed off arriving at the hospital about 4 am, they then carry out some blood test and a few other bits to check if you are healthy enough to have the operation that day. That is when the wait really started it was about 9am when we got told that the donor liver was good and the transplant would go ahead. At this point I told my family what was happening and waited to be taken down to theatre at about 11am. The operation took 9 hours obviously I was totally unaware how long it took and it must have felt like a life time for my family and friends. After the operation I was in intensive care for 2 days then went back onto the ward.

After 5 days it is off to have a trans arterial biopsy of the liver to check for signs of rejection and have your main line taken out, but typically with me I had held a lot of fluid and was unable to get a line in anywhere else so they had to put it back in jugular vein in my neck.

At the week end Amie came down to visit and asked why my eyes where a funny colour. So they had a look at me and on Monday I needed to have an ERCP and Palliotomy. I had also contracted MRSA and a blood clot in my Jugular vein so on the up side I got my own room and the down side some strong antibiotics and Warfarin treatment. Unbelievably post transplant my calcium levels dropped and I had to have calcium supplements, they are nice big chewy tablets, (I still take them today!).

Apart from a few minor problems I made a very good recovery and at about ten days they said I could go home if I wanted to for the weekend, but I was too frightened and wouldn’t go. It sounds silly to say you are frightened to go home but what I mean is that you become totally reliant on everyone around you so to be let out on your own is daunting, especially as I had only just managed to get myself to and from the shower a few days ago. It was worse knowing that I live so far away (about 2 Hours) and still having my staples in I didn’t want to risk any problems. But I did start to go out for a coffee and even something to eat at this point so as to show me that I was well enough to get about and away from the hospital. Because I had recovered so well the transplant coordinators got me working they had me sticking labels on their blood test request forms I suppose it gave me something to think about and do. They also do a quiz with you to make sure you can recognise and get your correct dosage of your medications before you leave.

At 3 weeks post transplant it really was time for me to head for home and get on with it, so I did and have never looked back since.

So here we are 3 years on I am doing well but with a few side effects from some of the tablets, such as tremor from Tacrolimus and having become diabetic. The tremor is now under control with another tablet and tweaking the dose of 2 anti rejection tablets.  I am still kept a very close eye on with scans every 3 to 4 months and trips down to Trans plant Clinic and of course Neuroendocrine tumour clinic. But i would have all the scans tests and clinic appointments they could throw at me if it meant that I was kept well and cancer free.

I have been left taking 13 different tablets a day and 1 injection but it is all worth it to be alive I am clear of cancer and disease at the moment so the future is looking good. I wouldn’t say it has been an easy journey for me or my family but we got there in the end. My family, friends Doctors and nurses have all been a great support to me throughout this time and I appreciate what they all did for me more than words can say.

So being so well at the moment I am running a half marathon in August for the NET Patient foundation and The Liver Transplant team, I will keep you posted as to how I get on!!!

There is hope out there for everyone even when life seems at its worst so just keep fighting and enjoy every day.

Carcinoid Cancer A Story Of Shock, Empowerment, and Joy

By Ruth Gerdes

Auburn, Nebraska

“Why didn’t you get those liver lesions checked out?” That was the question that launched my carcinoid journey. In December of 2006, my husband Myron and I were working to put together an estate plan for our farming operation. He had reached that 50 milestone, and I would in May. We wanted to get some permanent life insurance in place for our two children, so they would be able to keep our family farm if they chose. We went through the life insurance application process, and the insurance underwriter asked this fateful question.

Liver lesions were news to me. My immediate thought was there was a mistake. We live in a small rural community, where the last name Gerdes is like Smith. Even though our town is only 3500 people, there are three women named Ruth Gerdes in the area. After a call to the local medical clinic, things became curious. They had no record of any test showing liver lesions.

A call back to the insurance company told us the record they found was from St. Elizabeth’s Hospital in Lincoln, Nebraska, October of 2006. I had been hospitalized there for a particularly nasty infection after breast reduction surgery. The problem was the infectious disease doctor had failed to tell me, or notify my primary care doctor that liver lesions had been seen on a MRI.

This set off a string of tests to try and unravel the mystery of the lesions. I had no symptoms or any problem. Dr. Michael Zaruba, my primary care physician, told us the lesions could possibly be hemangiomas, a blood vessel problem. Hemangiomas would not be too alarming. My first test was a CAT scan of the abdominal area, and we were told that it was clear. For another week we did test after test; nothing was showing anything to be concerned about. Dr. Zaruba was very diligent through all of this. He would call me with test results, and then he would set up the next test. After a grueling week of tests, and nothing making any sense, Dr. Zaruba decided to go back to the original CAT scan. He pleasantly, but firmly, insisted that the imaging center re-read that scan. He got a physician on the phone who agreed to read the scan again. In a matter of a few short minutes, he told Dr. Zaruba how sorry he was. Whoever looked at the scan the first time had missed what he believed were two small tumors. One tumor was in the mesentery and one in the small bowel. From this point on, I knew that Dr. Zaruba was going to be the leader of my medical team, no matter what. This decision is one of the best I have ever made. Dr. Zaruba took this job on with persistence and compassion. His help would prove invaluable over the next several months and is ongoing. His willingness to challenge an “expert” and insist that scan be re-read would be the reason that I was diagnosed with carcinoid in a matter of days, instead of the years that many patients endure.

On December 28, 2006, I had bowel resection surgery at St. Elizabeth Hospital in Lincoln under the care of Dr. Greg Fitzke. Dr. Fitzke was able to completely remove the two small tumors in the mesentery and small bowel, as well as take biopsies of the liver tumors. When he got into my resection, he knew that there were more liver tumors than he could handle and was smart enough not to try. Many surgeons would have tried, and by doing so would have diminished my opportunity to have liver resection in the future. I will always be grateful to Dr. Fitzke for putting my needs first, doing an awesome job on the bowel resection, and checking his own ego at the door of surgery. The pathology tests from the bowel and liver biopsies confirmed carcinoid cancer.

In the past I had always thought when I heard about someone being diagnosed with cancer, how devastating it must be for him or her. It was not fun, but I was surprised by my own reaction. Instead of being overwhelmed by this, my gut reaction was that Myron and I and my family would figure out the best possible course of treatment, and I would be fine. My mother, Barb Marcy, had beat breast cancer, and my cousin Denise, who is an emergency room physician at St. Elizabeth’s in Lincoln, had beat non-Hodgkin’s lymphoma years before. The women in my family had cancer, but they all had beaten it. I had great role models!

We are so programmed to think cancer means chemotherapy and radiation, so it was a shock to me when I got home from the hospital and learned that carcinoid is: a) extremely rare, and b) only in about 10% of the cases does this cancer respond to chemo. Wow, what a wake up call. I immediately started doing research. It became obvious that surgical removal of all visible tumors would be my best opportunity to beat this cancer. Dr. Zaruba referred me to an oncologist in Lincoln. He told me I was inoperable, and there was nothing that could or should be done at that time. He did offer to check into clinical trials. I had already looked at all kinds of treatments through my own research and knew that his opinion was out of date. Leaving his office that day, I was as low as I ever got during this entire journey. I wanted to talk with Dr. Zaruba. I called his office and left a message. He called me back within a few minutes. Dr. Zaruba’s willingness to communicate with me when I needed it was one of the many things I depended on through this fight, and he never let me down. I told him how disappointed I was in my appointment and started telling him all the reading and research I had done. What I had been told at the oncologist’s office did not jibe with my research. What I did not know at that point was how much research Dr. Zaruba was doing on my behalf. We agreed that Myron and I would come into the office the next day and visit with him about how to proceed. When we met with Dr. Zaruba the next day, it became clear that we were on the same page. We agreed to explore in detail any surgical option that might be available. I knew that the University of Nebraska Medical Center in Omaha had a nationally renowned liver transplant program. What I did not know was how important that would be to my treatment.

At my consultation with Dr. Zaruba, he told Myron and me that he would work as hard at helping me as I was willing to work at getting well. I wondered at the time if he had any idea how hard I can work and how persistent I could be! Some people might have been offended by his words, but they gave me great peace. As a child growing up in the Sandhills of Nebraska, my parents always taught me and my four siblings that anything was possible. They encouraged us to try all kinds of new things from education, to sports, to showing horses, to speech contests; they always supported the efforts of five active children. But they also told us with any new endeavor, they would put into this project the same amount of effort that we did. As a child I knew the minute I backed off, so would my parents. If I wanted something, I had to work at it. I knew Dr. Zaruba had grown up in Ord, Nebraska, and he, Myron, and I had many of the same values, and most certainly the same work ethic. The hope Dr. Zaruba’s words gave me that day is something I will always cherish. To be able to trust your primary care physician so completely is a luxury that not many people have, and I know that I have been blessed.

At this clinic visit Dr. Zaruba told me to keep any information I found, he would do the same, and then we would talk about where to go from there. I enlisted the help of my cousin Dr. Denise Capek and her son Karel Capek who was a third year medical student. Karel and his wife Tracey came down that weekend to help me and to pick up all of my medical records. I knew that I had numerous tumors in the liver, and one oncologist had already told me that I was inoperable. But all the research showed that if you could have surgery, your long-term outcome would be much better.

Karel told me that weekend that UNMC had a liver transplant doctor that he believed to be one of the best liver surgeons in the world. He also told me that Dr. Jean Botha was not only an incredible surgeon but also a great human being. Boy did that resonate for me. I knew I already had those qualities in Dr. Zaruba, and that was exactly what I was looking for in my next expert! Karel took my records with him that day with the intention of hand carrying them to Dr. Botha. He suggested that I visit with Dr. Zaruba about the research we had done that week-end and ask him to refer me to Dr. Shafer and Dr. Botha, who are part of the liver transplant team at UNMC. I called Dr. Zaruba the next morning, and he agreed completely. A medical student getting involved never offended Dr. Zaruba. All help was welcomed. What an awesome attitude! His research told him my next step should also be UNMC, and that was what Dr. Fitzke had suggested as well. Dr. Zaruba told me it might be a few weeks before we could get an appointment, but that would be okay, as I still had to heal from the bowel surgery. Karel was seeing Dr. Botha that same morning. When Dr. Zaruba called me back, he told me that I would see Dr. Shafer and Dr. Botha on Wednesday. Karel called me back within a few hours, and he and Dr. Botha had already gone through my records. Karel was very hopeful that I would have a good appointment with Dr. Botha Wednesday. It was wonderful to only wait two days instead of weeks.

Wednesday we started our appointment with Dr. Shafer. Dr. Shafer is an Adult Hepatologist with UNMC’s liver transplant program, who has been involved in numerous liver transplant and surgical issues since 1990. He is also board certified in internal medicine and gastroenterology, and a real character. He put me at ease immediately with his wry sense of humor and obvious knowledge. The day only got better when Dr. Botha arrived. After the disappointment with the oncologist the week before, these two doctors were like a breath of fresh air.

Dr. Botha had gone through my medical records in detail. He was upbeat, encouraging, confident, all without being arrogant. He simply instilled a peaceful confidence in me from the first minute. He told us that he was considering a fairly radical and aggressive approach to my case if I was game, and did I want to learn more? Of course I did. If it were agreeable with me, he would take my case to UNMC’s tumor panel for review. That would be done the next week. He was going to propose that my case be a planned experimental two surgery procedure. In his opinion, the proposed plan was the only opportunity I would have for complete removal of all visible carcinoid tumors. He was very clear with Myron and me that these staged surgeries had never been done before on carcinoid. It would be experimental. Dr. Botha sent us home that day with the understanding that we should think about all that had transpired that day. He would take my case to the tumor panel, and then we would get back together with him after the panel had convened. He also told us we would only go forward with this aggressive approach after numerous heart tests, as well as an Octreoscan that showed that I had no tumors anywhere else. One of the funniest things that happened in my journey occurred at this meeting. Towards the end of the appointment, Dr. Botha, after going through all the tough experimental material with me, told me I would need to have an internal medicine doctor at UNMC to look after my overall health. I distinctly remember looking him straight in the eye and saying no, Dr. Zaruba would be the physician doing that. He was great about it and said okay. I don’t know if he was humoring me or not, but I suspect he thought it would be hard to get a primary physician who would do everything he would need done. He did not know Dr. Zaruba yet.

I remember leaving UNMC that day almost euphoric. This surgeon really got me. He understood my personality and how to tailor a treatment plan that I could be comfortable with. I called Dr. Zaruba immediately. I wanted him to know how great the appointment was. True to form Dr. Zaruba called me back a few minuets later. How awesome is it to have a doctor who will communicate with you so easily when you are in such a fight. I explained to Dr. Zaruba what had transpired, and that I had signed him up to stay in charge of my overall health. We made arrangements for Myron and me to meet with him in a couple of days to go through the particular questions I might have, and then start the testing process to see if I could jump all the hurdles in front of me to go ahead with surgery. Talk about strong support; I got it in spades from him. I really believe that Dr. Zaruba’s attention to detail, his honesty, and willingness to work with Dr. Botha was a gift. Dr. Botha’s openness in working with a primary care physician was also awesome. Having both doctor’s support and collaboration allowed me the luxury of a positive attitude going into experimental surgery.

I am a voracious reader by nature. I also believe that information is power. Needless to say, my research efforts increased. If we were going to do these surgeries, I wanted to understand all the pro’s and con’s. I wanted to know what I was facing. For me, if a complication arose, I did not want to be surprised or scared by it. Myron and I would go to appointments with Dr. Zaruba and Dr. Botha, and I would have pages of questions for them. I laugh now about it, but they were both so patient. Dr. Botha later teased me about my questions. He said that most people would have a scrap of paper in their purse, and he could answer them in a few seconds. Not with me. I would drag out my legal pad, and there would be pages of items for him to explain to me. Probably the worst part for these two doctors is they would explain one piece of this to me, and the next time I saw them, that explanation would have generated even more questions from me. I was not trying to be a pain. I was trying to get to the point in my own mind where I was unequivocal about what I was agreeing to. Eventually every question got answered, and we were on to getting an echocardiogram of the heart, along with a heart stress test. These were being done to make certain that the carcinoid had not done any damage to the heart valve. Heart damage is a typical problem for carcinoid patients.

For me one of the many benefits of having Dr. Zaruba looking after my overall health was these tests could be done at my local hospital here in Auburn. I did not have to make the trek to Omaha or Lincoln to have this done.

One of the surreal experiences of this carcinoid journey happened when I was having my heart tests done here in Auburn. Dr. Zaruba had just told me that both of my heart tests were great and we had cleared that hurdle. I was on my way back to my office when I ran into one of my clients in the waiting room. He and his wife were there so he could have an abdominal CAT scan done. I knew he had not been well the last five years, but did not really know the extent of the problem. Because my business is very seasonal, I had to let all my farmers know that I had a medical problem that would necessitate my being out of the office during my most busy time. This client had gotten my letter, and he and his wife wanted to know how I was doing. We visited a few minutes, and then they started to tell me how discouraged they were. They had been doctoring for five years and still did not have a definitive diagnosis. As he started to tell me his symptoms, my heart sank. Every single symptom he described was a carcinoid symptom. I knew his doctor was solid, but I could not help but think of the hours of research that Dr. Zaruba had put in on my case, and how he might be able to help this farmer. Late in the day this gentleman’s specialist, who had ordered the CAT scan called him. He informed him there was something showing in the scan, but it did not look like much, so they would simply repeat the test in a month. The farmer thought about it all night, and in the morning he called the clinic and asked to see his physician. His doctor had just left that morning on vacation and would not be back until the next week. He asked to see Dr. Zaruba instead. As luck would have it, he had just had a cancellation, and the clinic got him in that morning. Dr. Zaruba looked at his records, talked with him, and walked over to the hospital and looked at the CAT scan. He then electronically sent it to the physician who had read my scan. By noon this gentleman was set up to see Dr. Fitzke in Lincoln. A few weeks later he had bowel resection surgery. He was fortunate in that his carcinoid had not metastasized, and he got through the surgery in great shape. He recently told me that he feels better now than in years. I was thrilled that my farmer had gotten the help he needed, but it was time to focus on my next step.

After several appointments with Dr. Zaruba and Dr. Botha, we got the word that my Octreoscan was clear of tumors, other than those in the liver. This was the last hurdle to clear. Now it was on to the first of two planned liver resections. The first was February 8, 2007, six weeks after my bowel resection. I did well; they took the entire left lobe of my liver, and a little of the right lobe. It ended up being about 65% of the total liver. I actually had more back pain than anything. After four days in the hospital, I talked the attending physician into letting me go home. I had escaped. Ten days later I was able to go back to work a few hours everyday.

Dr. Zaruba was awesome when I got home; I was able to have all my blood work and weekly follow-up appointments done here in Auburn. The doctors collaborated on all my needs. Dr. Zaruba kept Dr. Botha informed and I did not have to make the trip to Omaha. One evening when Dr. Zaruba was on vacation, I developed a bowel problem. He had told me to call his house if I had a problem, even when he was not on call. There were just so many weird things with my case that it would not be fair to the other doctors in town to ask them to treat me. I called the house, and his wife Stacy said he was at a school board meeting, but she would run downtown and get him because he had not taken his cell phone. Stacy went and got him from the meeting, and they called back and had me meet him at the ER at the hospital. Bottom line, he was able to straighten me out, and I did not have to make a trip to Omaha in the middle of the night. When I step back and think about it, how amazing is it to have a doctor who will help you when he is on vacation and get great support from his family as well.

From that point on, my goal was to work hard at getting my strength back and to focus on getting ready for the second surgery. I had worked very hard the year prior at losing weight and living a healthier lifestyle. Myron and I got right back into the walking routine, and I really think it was one of the major reasons I did so well. The goal was to get three miles of walking done in 30 minutes everyday, prior to having surgery again. It really made a huge difference in my stamina.

We saw Dr. Botha in late March, thinking we were having surgery yet that week. He told us that the new MRI of the liver showed that my liver had not regenerated enough to go forward. We would need to wait until May for the second surgery. I was pretty bummed about the wait. I am an avid golfer, and this would mean I would miss a great deal of ladies golf league. It also doomed my participation in the annual trip with my girlfriends, the most marvelous group of smart, eclectic, joyful, and supportive women. It was a blow to be put off, but these doctors really knew their stuff. Dr. Botha also loves to golf, so I knew it had to be important if he wanted me to wait. If Dr. Botha said wait, we would. It was back to walking and eating as healthy as possible. At this consultation he also informed me that I would not be charming my way out of the hospital in four days next time. He also told me how lucky I was that Dr. Zaruba was so good to me when he was on vacation.

May 15 finally arrived. The MRI of the liver showed what Dr. Botha wanted it to, and I was strong and ready for surgery. It would be May 17. On the morning of May 17, Myron and I got to the surgical staging area, only to be told that my operation had to be canceled due to the fact that Dr. Botha had emergency transplants going on. It was deflating to say the least. But I also knew in my heart, that if it were not for the liver transplant program, I would not have had access to a surgeon of Dr. Botha’s talent. Because the liver transplant program started as an experimental program, they understand that experimental surgery like mine also needs to happen. I suspect that there are very few surgeons in the country who would have tried what we were doing, and maybe even fewer hospitals that would want them to try. I also had the luxury of time; those liver transplant folks did not. So I did what all golfers do when faced with an unexpected free day and beautiful weather; I went home and played golf.

When Dr. Botha’s office called later that day, it was bittersweet for me. Surgery would now be May 21. My 50^th birthday. I decided that I could look at it two ways, complain or appreciate the irony. It was more fun to laugh about it. Now I can celebrate my original birthday, but also the day that Dr. Botha gave me a second chance. May 21 came and surgery was a go. Dr. Botha had done transplants the night before, but he was rested and ready for me. This was one tough surgery. They got in and took 70% of the liver. But when they got into the resection, they found tumor involvement of the vena cava. Not only did Dr. Botha resect the liver, he also ended up having to resect, and patch the vena cava. As he later told me, we were flying pretty close to the sun on this one. He knew it was what I wanted. Why go through two massive surgeries if you aren’t going to get it all.

I spent the next six days in intensive care. Thank God for good pain medication. In many ways I had it much easier than my family did. If I was in pain, it was handled. I remember bits and pieces of the ICU experience. Mostly I knew if I woke up and my mom was there, that it was daytime; if Myron was there, it was evening. Myron would race the 70 miles home every day to feed cattle and plant soybeans, and then come back to Omaha to spend the evening with me. What a terrible time of year for him to have me going through this. But Myron and Mom never complained. Waking up in a fog is no fun for a control freak like me, but having one of them there really settled my nerves. I don’t know what it did for theirs, but it was sure great for me.

Toward the tail end of my ICU experience, Dr. Zaruba took a day off and came and sat with Mom and me. I knew he would not sugarcoat anything when talking to me, so having him there was a gift. He reiterated what Mom and Myron had told me. It was tough surgery, but if I worked hard, I would get well. His visit that day confirmed to me that I was going to make it through this. When I started getting Mom to give me wheelchair rides out of the ICU area, I think they believed that it was time to move me to the regular floor. I did develop a plural effusion in ICU, and it dealt me fits. Dr. Botha would pump me full of Lasik to get rid of all the fluid, but it could not keep up. Slowly I got rid of enough of it that they would let me go home and be miserable! True to his word though, I was not leaving the hospital this time until Dr. Botha had approved it. It was almost comical getting out of there, because no physician was going to sign me out until they had talked with Dr. Botha. Of course, he was in surgery, so we waited for him to get free long enough to give his blessing.

After four surgeries in ten months, I was free and on my way home. Under Dr. Zaruba’s, care we battled the plural effusion for three more weeks. Again when Dr. Zaruba was on vacation, this effusion kicked into overdrive, and I had to call him. He was out in the middle of a lake in central Nebraska. He grabbed his cell phone and put his boat in. He had to walk to the top of a sand dune to get enough cell reception to visit with me. True to form, he knew exactly what to do for me, and how I needed to tweak my medicine to deal with the fluid. When I saw Dr. Botha later that week, he was thrilled that my fluid level was much better and told me it was just a matter of time before we finally got rid of the plural effusion.

After four weeks, I started to feel much better. The experimental surgeries were an amazing success. They had removed 22 tumors from my liver and patched my vena cava. After all three surgeries, I am free of all visible carcinoid tumors. Now these two doctors scan and watch me carefully. To go from being told you are inoperable in January to being tumor free in May is an amazing accomplishment. I was truly blessed with a medical team that saw me as a person, not a case.

Dr. Botha originates from Cape Town, South Africa, population 3.5 million people. Dr. Zaruba is from Ord, Nebraska, population 2600. Isn’t it awesome that two people with such different backgrounds collaborated so well? As Karel Capek said, they are talented physicians, but even more awesome human beings. The bottom line here is that if you are battling cancer, be comfortable with your physicians.

In August we had a party at our home for my physicians, their families, and my family. It filled my heart with joy to be physically able to entertain them and their families as part of the celebration. These doctors’ families put up with a number of hours of on call time. It was fun for me to be able to say thank-you to the doctors, and also to their families. I have had unique and wonderful medical care that is ongoing.

None of us knows what the future holds with this strange cancer. The support I received from my community, the company I place my business with, and all the farmers I work with in my business was awesome. What I know for certain is that no one can do this alone. I am in a much better shape fighting carcinoid cancer due to the help I have gotten from my physicians, my family, and my community. I will be forever grateful to Myron, Mom, Cody and Jessica, and the rest of my family. Carcinoid cancer is not fun, but I have been truly blessed by having a medical team who really worked with me as an individual. Dr. Zaruba and Dr. Botha are superb physicians, but they are also wonderful human beings; they have given me a chance to live a life that is joyous.

Dr Michael Zaruba

Primary Care Physician

Auburn, Nebraska

The care of Ruth Gerdes has been one the most challenging and rewarding experiences of my medical career. In the beginning, it was difficult to piece together the puzzle of the first mystery liver lesions. Initially, carcinoid cancer was low on my list of possibilities, especially since Ruth was so asymptomatic in comparison to most patients with this disease. As her story outlines, we performed numerous tests trying to determine the etiology (cause) of these lesions. After becoming somewhat frustrated with the lack of answers, I went back to a basic rule in medicine. In general a single diagnosis will likely explain all the symptoms. However, in Ruth this was one of the challenges, as she had no other symptoms. At this point I started to piece together her past medical history of an unexplained GI bleed in 2003, and the unexplained liver lesions now in 2006. I stepped out of the exam room at this time, and went to discuss the original CAT scan with the radiologist. My worst fear was confirmed during this conversation. A small bowel mass had been missed on the original read of the CAT scan. This allowed the diagnosis to easily be made at the time of resection of the small bowel mass. As a physician it is easy to just accept a radiology report or consult for what it indicates. However, as physicians, I think it is imperative for us to challenge information if it does not provide that unifying diagnosis.

As a family practice physician I have learned more about carcinoid than I ever thought I would need to know in my career. This case allowed me to realize how important it is for patients to be active participants in their healthcare. I told Ruth I would work as hard for her as she did for herself, and it is her dedication to her healthcare that has led to her receiving outstanding medical care. I am pleased that we were able to provide a great deal of her medical support in rural Auburn, Nebraska. Ruth was as much a part of the medical team as any of her doctors. Numerous times I was amazed at the quality of information Ruth would come into the office with for us to discuss. Because of our collaborative research, she was able to help direct her care. Ruth asked questions that challenged me as a physician. The questions she posed helped guide the decisions we made regarding her care. I would challenge all carcinoid patients to be as active in their healthcare as possible. In my opinion, patient involvement is the single most important opportunity that leads to a patient receiving individualized, outstanding medical care. As a patient, do not be afraid to question why!

Dr. Jean Botha

Liver Transplant Surgeon

University of Nebraska Medical Center

Omaha, Nebraska

To say that Ruth Gerdes is a positive person is an understatement. From our first consultation, it was obvious to me that that I was dealing with someone who would be able to focus and act on the positive aspects of what I was about to propose to her. Radial surgical excision has now been shown to be an effective treatment for metastatic carcinoid, particularly if more than 90% of tumor bulk can be removed. In reviewing Ruth’s CT scans, I felt that by taking a two-staged approach, first described by a group of French surgeons, that we would be able to remove all of the hepatic tumors. At the first operation we removed all the tumors in the left lobe of the liver. We then waited a few months for this lobe to regenerate and then went back and removed the entire right lobe and some of the left lobe of her liver, something called a right trisegmentectomy. Despite the amount of fear and anxiety that this must have been causing, Ruth remained remarkably upbeat, never expressing anger or bitterness at what she had to go through. I have known Ruth for almost a year now, and she has thanked me many times for what we have done. This, however, gives me the chance to say, “No, Ruth, thank you. Thank you for the privilege of getting to know you.”

Dr. Michael Zaruba

My story began in 2006 when I was sent for an ultrasound with suspected gallstones. I had been bothered with pain after eating rich or fatty foods and it was painful when my GP pressed in the gallbladder area. It was 6 weeks before I received an ultrasound and I remember that day so clearly as the young gentleman who was doing the scan took ages and kept grinding his scanning device into my side and then called on his colleague! Nothing was said to me during this time and I was packed off home to await my results but I knew that something was amiss, they were so quiet! A few days later I got a phone call to tell me a mass had been found on the tail of my pancreas and I was asked to go to hospital to have a CT Scan and biopsy. This was also quite traumatic at the time, the results showed that it really was a mass – 10cm by 7 cm and it was cancerous but they couldn’t determine the type. I was referred on to a pancreas specialist who then set about a plan to remove the tumour along with the tail of my pancreas and my spleen. I underwent surgery in April and had to wait just over a week for the results of the tumour. I was told it was a NET and that there was no trace of any spread to the tissue surrounding the tumour. I was also told it had produced a growth hormone.

I was sent home to recover 2 weeks later and have to say recovery was rather slow, but gradually improved over the weeks – well months! I was bothered with a severe irritable bowel syndrome that was either a result of the surgery or of the penicillin I now had to take daily, due to the removal of the spleen. This disabled me 3-5 days a week and left me housebound due to the pain. I have since recovered from this with the help of probiotic tablets and have managed to gain some weight! Yeay!

In March 2007 a routine octreotide scan discovered some lumps near my chest and armpit. A sample was taken and I was referred to the breast clinic for screening. Soon after, I was given the news that I had developed Breast Cancer. There was spread to some lymph nodes in my armpit. Devastated and shocked I couldn’t quite comprehend what was happening. I was supposed to be free from cancer! The cancellation of the family holiday was what finally made me cry – not the diagnosis, but the removal of the family holiday that we had so carefully planned and looked forward to with the children. It broke my heart telling them we could no longer go.

I commenced Chemotherapy in June and finished at the end of October 2007 when I then underwent a mastectomy and axillary clearance. I am now receiving radiotherapy for this and tamoxifen – a hormone therapy, as it was an oestrogen sensitive cancer. Anyway what a long story it has been and it hasn’t quite finished yet, but I wanted to share my story and to say if I can get through this then so can you! I have a new found zest for life and have started studying for a degree in Child and Youth Studies, along with Higher English with the hope of becoming a Primary School Teacher. My 2 young children have been great throughout my treatments and I have taken great strength from them in my times of need. We have re-booked that holiday to France this year and I will keep you updated on my journey!

Lynn

I had been backwards and forwards to the doctors for two years with very vague bowel problems. I was diagnosed with IBS and sent home with tablets which made me throw up. My blood sugar levels seemed to drop on an afternoon too , but I’d been repeatedly checked for diabetes and I was starting to believe my problems were in my head. Over Christmas 2000 I had an episode of black stools and went to the GP in the January 2001 and he organised a colonoscopy which showed nothing. My symptoms continued but after a couple of really bad pain episodes another GP said it could be my gall bladder and sent me for an ultrasound and the tumours in my liver were very visible on there. It took a further 15 week before they eventually sent me for a biopsy as all results up to then were inconclusive and they really couldn’t understand how I looked so well despite my liver being such a mess as the doctor put it.

I’d scoured the internet and realised that I really didn’t have much time left and spent the day of my biopsy 11/09/2001 watching the news while lying flat on my back and saying to myself that whatever the results of the biopsy I would at least have time to sort some things out and say goodbye to my family. A week later I got the results and began my journey with carcinoid. The doctor who handed me the diagnosis had been the same one who had done my colonoscopy and he was most apologetic as he hadn’t checked the small bowel because of my age. I was 33 with 3 children, the youngest one born with cerebral palsy and newly diagnosed with carcinoid.

In some ways this was a blessing, I gave up work, I was working self employed 80-90 hours a week and hating every minute of it, but work was no longer important. I was quite upset that despite having cancer I still continued to put weight on.

I have had 5 embolisations, 2 bowel resections and a liver resection in the following 6 years. I have now gone back to work part time and doing it for enjoyment. I have carcinoid in my liver, small bowel and breasts but despite this journey being a rollercoaster at times, I try and remain as active and positive as I can.

Carmen Mollison’s Story

I am a very grateful patient, or should I say one of the lucky ones.
I am writing my story because I am so grateful to the wonderful NET team at the Royal Free Hospital (RFH).
I was diagnosed with neuroendocrine tumour (NET) after various tests. I was admitted to the RFH on the 17th November 2006 and discharged on the 29th November 2006, to have all these tests completed.
After a long period of diarrhoea, up to 16 times per day, flushing and peripheral oedema, lower back pain particularly at nights, my problem was diagnosed as bowel carcinoid with liver metastases.
I cannot thank them enough because if it hadn’t been for the team I would not be here now to write my story. I was in such a dark hole not knowing what was wrong and Dr Caplin and his great team was able to take me out of that dark hole. Immediately I was started on sub cut octreotide 3 times a day and then Sandostatin LAR every month which changed my quality of life.

I was also diagnosed with carcinoid heart disease and hypertension. I had lost a lot of weight.
I was told that my carcinoid heart disease needed to be dealt with before the rest of my tumours as it was serious. I was referred to the Harefield hospital where I saw a heart specialist and an operation was organized to repair my damaged heart valves.

These had been damaged by the hormones that are released by the tumours.
I was admitted to the Harefield hospital on 11th March 2008 and operated on.
It was a very successful operation and 5 months on I am enjoying a new lease of life. I eat much better than I used to and I am feeling so much better – like being reborn……..

I have been told that the worse is over and that now they can start working on my tumours.
I am very happy with the way that things are progressing at the moment. I am still in the healing process of my heart operation as it was a major operation.
Every day I wake up and see the changes in myself, I am so grateful to the wonderful team at the RFH.
Thank you to Dr Caplin, Dr Toumpanakis, Dr Patch, Dr Devar, Dr Sanjeev, and the fabulous NET nurse Philippa Davies.

Also thanks to my local doctor named Dr Smith.
The Royal Free has some wonderful people waiting there to help you – they truly believe that cancer can be treated and don’t stop trying.

That is a great inspiration to me.

Catherine Logan – Patient

Former New Seeker singer Catherine Logan travelled the world during her celebrity singing career. Now, after being diagnosed with neuroendocrine tumours, she says enjoying the simple things in life can provide the greatest pleasure… Read More»

Andrew’s Story – Patient

At 33 I never imagined calling an ambulance for myself; what could
be giving so much pain? I had woken at 5am as if someone had shot
me. I’d been experiencing… Read More»

Cathy’s Story – Patient

I shall never forget the look on the physician’s face when he took my hand and told me that abnormalities on my liver were malignant… Read More»

Bob’s Story – Patient and Family

Bob Moon was first treated for a neuroendocrine tumour some 25 years ago. He has gone on to have treatment for another form of cancer and tests for a third.
But today, 59 year old Bob… Read More»

Pat Moon – Partner Story

Partners of NET patients need support and understanding too. Pat Moon explains the roller coaster ride of having to accept… Read More»

Carole Way – Patient

My problems began in August 2001.

I had just returned from holiday when I experienced severe rectal bleeding.
After a home visit from my GP… Read More»

David Tew – Patient Story

Dave Tew, 53, is a former West Country bike cop. His job involved shift work and stress, and in the 1990s he began suffering from bowel… Read More»

Lynns

I’m a Nursery Nurse at a local primary school and I live with my husband and 2 young children aged 6 and 8 in Perthshire.
I was diagnosed at aged 31 and am now 33.Read More»

In September Suzanne Long 2005 she travelled to a NET conference in Philadelphia, America where she was pleased to find she had ‘instant access’ to some of the country’s top doctors.
Suzanne writes about her own experience and reports on some of the US links.

We can now report that the PCT involved has overturned its decision and that patient John Woolder will soon be starting on a three stage course of treatment. This follows coverage of the case by his local radio, TV station and newspapers and publicity given to his case on this website.

One of the consultants looking after him had branded the case as a clear case of ‘postcode prescribing.’

Mr Woolder, aged 71, also won the support of his MP Patrick Mercer who took up the case and wrote to the PCT involved, Nottinghamshire County.

Mr Woolder, a retired self-employed textile agent, underwent major abdominal surgery in 2000 after suffering a series of problems initially put down to irritable bowel syndrome and constipation.

In 2001 it was discovered that the disease had spread to his liver.

In August of that year his consultant in Nottingham told him that there was ‘no current treatment available’ and that the disease would shorten his life.

After struggling to get funding for ocretotide injections, to control flushing symptoms Mr Woolder supported by his wife Annie sought a second opinion at the Royal Free Hospital one of the largest NET units in the country that has seen around 800 patients.

Here he underwent a successful tumour ablation in 2002. But his tumours continued to grow.

The Woolders learnt that there WAS a possibility of further treatment – with a radio labelled peptide called Y-90 octreotate, which is targeted at the tumours directly.

Mr John Buscombe, consultant physician in nuclear medicine at the Royal Free Hospital said over 200 patients have now been treated with this and other similar treatments, resulting in control in symptoms and reduced growth of tumour in about 60% of cases.’

Under the current system PCT’s have to pay for their local patients to have this treatment. The cost is £15,000 for a course of three treatments and Mr Buscombe said over the past 12 months over 30 have approved funding.

Nottingham’s refusal to pay was ‘unusual’, he said.

‘In addition when asked to suggest a viable alternative for Mr Woolder’s treatment the PCT have refused to comment.’

He added ‘We therefore ask for his PCT to re consider their refusal and agree that he be allowed the only treatment we believe, with our considerable experience, has a chance of working.’

Mr Woolder said he was very pleased with the care he was receiving at the Royal Free and has every confidence in their judgment.

‘However recently my tumours have grown and my LAR injections have been increased to 30mg.

‘Dr Caplin and the multi disciplinary team of consultants have indicated that I would benefit from yttrium therapy but funding by my PCT was refused.

‘I was devastated by their refusal but my wife and I continued to fight their decision in the hope they would relent, because although this cancer may not be curable, it is controllable. At the moment I am extremely fit and well but I have a time bomb ticking away inside and I would like it diffusing’

In a letter to MP Mr Mercer the Nottinghamshire County PCT said that it had a duty to fund the treatment and care of patients on an equitable basis and it had set up a committee to consider cases on a ‘case by case’ basis. It had since reviewed Mr Woolder’s case and decided to fund treatment.

· The Woolder case has echoes of the experiences of two other patients in Wales. They were both initially turned down for funding for yttrium therapy by the Health Commission Wales. One of the patients – Vince Davies, 62 – went to his local paper who regularly ran stories about his case, which was also taken up by Welsh MPs. Earlier this year the Commission overturned its previous decision and Mr Davies started his yttrium therapy in April.

Are you having problems with your NHS Trust or your GP in obtaining funding for the recommended treatment for NETs?

The NET Patient Foundation would like to hear from anyone else who is suffering from similar problems.

Please call our helpline 0800 434 6476 and leave your name and number and say you are calling about funding issues. A member of staff will get back in touch with you.

The charity feels that if we can find enough case histories it will strengthen our position regarding the funding of important cancer treatments for our patient group.

Former New Seeker singer Catherine Logan traveled the world during her celebrity singing career. Now, after being diagnosed with neuroendocrine tumours, she says enjoying the simple things in life can provide the greatest pleasure.

Two years ago at 46 I was diagnosed with neuroendocrine tumours of the pancreas with secondary spread to the liver.

I had been feeling ‘off’ for almost a year previous to diagnosis and remember having blood tests done at my doctors’ that showed irregular liver readings.

I was told they were ‘nothing to worry about’ and they were blamed on ‘the change’ and possible anaemia. I started getting severe symptoms approximately three months before being referred to Addenbrooke’s Hospital in Cambridge for ultrasound and CT scans where my diagnosis was confirmed.

Although I had dealt indirectly with cancer through my mother and late husband I was as stunned as anyone when given the news by the consultant. The words ‘We cannot operate’ seemed to rattle me the most and, according to my partner, I indignantly replied ‘What do you mean you wont operate?!’ at which point the consultant looked a mere shadow of his former self!!

Anyway, in short, my symptoms which had bought me to the CT stage (weight loss, severe flushing & loss of bowel control) were immediately treated with Octreotide shots (self administered) and later the longer acting Sandostatin Lanreotide Autogel (monthly jabs) which I am currently still receiving. They gave me relief from my debilitating symptoms and allowed me to return to a near normal life though nothing would ever really be as it was.

I don’t want to dwell on the negatives of illness as we all know them only too well and cancer is certainly NOT the best thing to ever happen to me (as many people will have you believe!). There is no choice but to get on with it as best you can which means in whatever way you can. There is no wrong or right way contrary to belief.

My only sage bit of advice would be not to be convinced by others around you that you are some sort of superhuman who has been given endless supplies of courage, determination and bravery somehow lacking in other mere mortals! You’ll be sadly disappointed.

Don’t feel you have to spend your precious time performing feats of daring-do either ( ie: climbing Kilimanjaro, white water rafting, endless sponsored forms of torture (well, not unless you actually enjoy them?!) I find that the simplest things bring me the greatest pleasure nowadays, just seeing the natural world and those closest to me in a new light that I never gave my time to before.

However you choose to deal with your illness must be the right way for you so don’t be undermined by other people’s unrealistic expectations.

I have had a reasonably interesting career in the past as a singer with The New Seekers which my friend (Cathy Kalamis, also a NETs patient whose story appears on this site) advises me may be of interest to some of you, so feel free to look at my web site (www.cathy-logan.co.uk) and have a laugh at the ‘big hairstyles!

Remember GET GRUMPY sometimes?! Don’t always be there for everyone else, enjoy laughing when you can and be kind. These things cost nothing and are painless. What more could you want?

Ends

I would like to make a point at this time, one that now has become one of my new principles, don’t be too stubborn to admit you need help.

For too long I’d ignored the warnings my body was giving me. Family and friends commented on my loss of weight and lack of appetite, I however dismissed their concern and carried on with my own demise. Analysing it now, my problems had started over a year ago.

Diarrhoea, no appetite, weight loss, worn-out, I wasn’t the upbeat bloke everybody knew. In the emergency department of St Mary’s Hospital Paddington the game of diagnosis began.
Initially the doctors agreed with my own gut feeling, that I had
appendicitis. So without further ado I was shaved and gowned. Lying
there with the pre-med warming my blood, I could never have
imagined what was waiting on the other side.

I was told that I had had a section of my bowel removed that had
perforated. It wasn’t for 3 days that I was told that I had a
neuroendocrine tumour which was metastatic. With this news my life changed forever.

“I have cancer” I thought to myself over and over again. How and why were the two questions that constantly went round my head. Now I know the questions to ask yourself should be 1, how do we beat this? and 2, what do I need to do to beat this?

The ‘how’ is easy, leave it the professionals. I met Dr Martyn Caplin with mum and dad one Friday in December and a frank discussion took place. A number of options are open to someone with a neuroendocrine tumour as the disease is rare and many of the cancer treatments for this disease are still in trial form so this allows more options. I was told that my best chance lay with a somatostatin analogue called Octreotide in conjunction with Interferon. I won’t bore you with the science but suffice to say this is the best first option FOR ME.

The ‘what’ was easy too. Give up everything I had been doing
previous to my diagnosis and start listening to every piece of
guidance. Stop smoking, drinking, eating over cooked food, the usual things that make life pleasant. Funny as it sounds I have enjoyed reevaluating my situation. It has given me a chance to understand that as much as we hope we are, we are not invincible. I have started exercising and eating the foods that are good for me rather that taste good to me. I won’t go on with this point, but I will say that you should listen to all the advice given to you and try to put in place a schedule that you can stick to.

I am now in treatment and my weekly trips to the Royal Free to see the lovely Cathy and Janelle are underway. These girls know what they are on about so listen to them and don’t be afraid to ask their advice whenever you are not sure about anything. I refer you back to the beginning of this piece; don’t be too proud to ask for help. We are all in our own way fighters but this is something that takes not only your own mental strength but the combined strengths of family and friends, doctors and nurses, Holland and Barrett and Holmes Place, to name just a few.

When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.

It was in the summer of 2002 in the glorious surroundings of Greece that Dave Tew experienced 48 hours of severe pain. He was in the middle of a motorcycle training course in Volos, in central Greece, and his problems were put down to exhaustion and dehydration.

With the benefit of hindsight Dave believes this when a neuroendocrine tumour in his bowel really started to make its presence felt.

The painful experience was the culmination of four years of discomfort that he had put down to his busy lifestyle and stress.

A police officer since 1973, Dave was engaged in a number of different roles during his 25 year career, from driving instructor to being one of the first officers to man armed response vehicles. He took courses in anti-ambush techniques and VIP protection and then worked in his most enjoyable job as a motorbike patrol officer – a bike cop.

After the problems in Greece, matters worsened. ‘In early 2003 my GP diagnosed me as having full blown irritable bowel syndrome.’

During 2003 and into 2004 Dave kept returning to his GP. ‘She told me there was nothing she could do. I had irritable bowel syndrome and I would have to learn to live with it.’

Eventually Dave chose to see a consultant privately. After a barrage of tests that proved inconclusive he was referred to a surgeon.

‘He told me I had an intussusception of the small bowel that he likened to the kinking of a hosepipe resulting in a blockage of the bowel.’

It was during this surgery that a carcinoid tumour was discovered – and at long last Dave had an explanation for the years of pain and discomfort that he had suffered.

‘What the surgeon had discovered was life threatening. It was a carcinoid tumour that had taken over the blood supply to the majority of the intestines and bowel. I was lucky to survive the operation.’

Although the surgeon was able to remove a substantial amount of the tumour, some has remained.

Dave, who left the police force in 1998 after suffering post traumatic stress following a fatal coach crash he attended as an officer, then went in to IT and website design.

He knew his way around the Internet and after discovering there was no-one local specialising in NETs he eventually found a clinic at the Royal Free Hospital in London.

‘Initially no treatment was necessary because body scans showed that the remaining tumours that I had were small, medically insignificant and were not involving major organs.’

This was great news and Dave used the opportunity to take a holiday to the Caribbean with his supportive wife, Lauren, a motor bike trip to France, a week in the Canaries and a return to the Caribbean for a one month cruise with his father.

Dave admits that a sense of hope had crept into his life.

‘But all this ended abruptly when follow up body scans in January 2006 revealed new tumours in the spleen and liver and that the other tumours were bigger.’

Dave is now deciding with his doctor the best course of treatment.

But Dave is a determined soul and his intention is to carry on living life to the full and with purpose.

Since his diagnosis Dave has been actively involved in fund raising for a new charity that he has founded called Let’s Beat Cancer that in turn is raising money for the Royal Free’s Quiet Cancer Therapy Appeal.

He says ‘The aim of the charity is to raise awareness of carcinoid and raise funds. My new website provides links to other helpful sites such as Cancer BACUP and Cancer Research UK.’

He has roped in friends who will be parachuting, climbing, diving and abseiling to raise money for his new charity that will be officially launched in May.

Among the fund raising events Dave is a sponsored bike ride round Europe in June plus a sponsored 5,000 motorbike ride to Greece and back in September.

Dave adds ‘The morale of this story is simple. Don’t put off until tomorrow something you can do today. You never know what lies around the corner. One in three of us will have cancer at some time in our lifetime, 35% before we reach the age of 60. Of course – it always happens to someone else – doesn’t it?’

For further details click onto the News section or view Dave’s site letsbeatcancer.org.uk

Partners of NET patients need support and understanding too. Pat Moon explains the roller coaster ride of having to accept that her husband has cancer but also learning to live life to the full and with a positive attitude.

Like most men, Bob never had a cold, it was always pneumonia, and so when he complained about stomach pains, even though they lasted for over two years the family treated it as a bit of a joke. We would say things like, ‘He’s rarely without pain’.

So when a problem was found I suppose, I clung to the thought that it might have been a ‘bit of fluff on the X-ray machine’ and it was my way of not wishing to accept that he was ill

I have never been one for accepting that anyone was ill, even myself.
My attitude is always ‘just get on with it’, but I suppose it was when the word ‘growth’ was first mentioned that I actually began to worry.

I know that Bob was angry with me because I could not accept that he was ‘ill’, although in my defence I would say that my intentions were always to make sure he made a full recovery, and that whatever he had was ‘not going to beat us’.

Our two children and I would have regular chats about his condition (without Bob knowing), and have done from the start. Our attitude has always been that no matter was the problem is, it will get sorted and we will just get on with our lives.

I think the first time I heard the word ‘growth’ was when I visited Bob in hospital with my best friend after his first operation.

The nurse told me that the growth was cancerous. I can’t remember how long Bob was in hospital, I would visit during the day, collect the kids from school and after dinner take them to hospital. But to ensure normality, the kids would even take their homework for him to help them.

Bob came home a lot thinner than he went in, but I was still convinced that he would make a full recovery, and live a full life, and I still do. I could not bring myself to be too sympathetic in case he played on it, it’s not my way, and anyway he would then think that I was worried about him.

Bob recovered from the operation, went back to work, and as far as I was concerned he was ‘cured’. Then one day he came home from one of his regular hospital check ups, the only time he has ever been on his own, and told me they had discovered some growths in his liver, and he was being referred to Hammersmith Hospital in London. Bob looked so healthy, and still does, that again I put on my ‘there is nothing to worry about hat’.

At some time we were told that his liver had a number of growths, quite deep, and that therefore they could not just ‘be removed’. The doctor we saw was very reassuring, and with the exception of regular check ups, x-rays and tests, there was no actual treatment to be done at this time. This only reinforced my attitude.

I even went to see my own GP, whom I have known for many years, to discuss Bob’s complaint, and she reassuringly told me to ‘go home and live your lives’.
This is what we have done.

Life continued as usual at home, with Bob’s condition not a matter for concern until we had to deal with anything. The next problem was when he went into hospital just before Christmas one year for an embolisation. I was concerned and worried, but I could not show it, the kids and I still had regular chats, but they did not seem to be too concerned, so we carried on as normal.

That time in hospital was difficult, I had a job, the hospital was some miles away, the kids needed me at home, and I was not very well with a bad cold, and I was trying to get ready for Christmas. In the event Bob was discharged a couple of days before Christmas, not having had the procedure due to a malfunction in the X-ray machine, but he caught some sort of infection during his stay, so this was not the best Christmas ever. He went back in after a couple of weeks, had the procedure, was initially OK, but was then quite ill for a couple of days, and this did cause me some concern.

But what I like to think of as our ‘positive attitude’ paid off as Bob recovered, went back to work and we all once again got on with our lives.

Bob’s doctor moved to the Royal Free Hospital, and I especially was glad when he took Bob with him. We trusted him. Complacency set in, as each visit Bob only looked to be getting healthier, and so once again I assumed he had made a full recovery.

At one visit Bob had been telling me that he was not feeling so well.

As usual I told him not to be so stupid, and so when we went to hospital for the results of his latest tests, and were told he needed further treatment as the growths were growing. It came as a bit of a shock. Bob was offered a clinical trial of some radiotherapy treatment, and Bob already agreed before we could really discuss it. But I was happy to go along with that, the doctors were so positive.

Bob had three sessions in hospital, only overnight stays, and although he felt a little nauseous and tired, no real side effects, so once again my attitude of ‘no sympathy it will make him think he is ill’ took over. He got over them all, went back to work in between treatments as well, and life continued much as before. He looked healthy, he worked full time, never took time off sick, other than for hospital visits, and so once again life was rosy.

Just when everything was going so well …bang, things changed again.

Bob was told he had a tumour in one of his kidneys, and that they had been watching it for 12 months or so, but it was time to operate and remove it. I was angry, not because we had not been told earlier, but because it was yet another unnecessary problem for the family to overcome. By this time both of our children had left home and we had one grand daughter, and she had been born nine weeks prematurely, which was another worry.
I remember that once Bob had been told this news I had to leave him to go and feed the parking meter, and so I took the opportunity to telephone my son. He is more positive even than I am, and he just told me not to worry.

The surgeon was superb, again very reassuring and matter of fact, and again as a family we were convinced that Bob could live just as well with one kidney, so it was no surprise to us that he had the operation, on his birthday, and made a speedy and full recovery. I know Bob has a few problems, but even when he is having an operation or some other treatment, I am sure that he will fully recover and live a long life. I have been right so far, so my attitude cannot be all bad.

I honestly do not know what the children think. They have been very supportive to me, and Bob, although none of us dwell on what might have been, only the positives.

Many people have asked me how I cope, but cope with what? Bob has a complaint but is not ill as such, and in fact to look at him he looks full of health, so I am sure he will be fine.

This account may make me out to sound a very ‘hard’ person, but I honestly believe that if you think positively, then all will be well, and it has been, and it is.

Trying to write down what, and how I feel is very difficult for me, but I would hate anyone to think that I am uncaring. Bob knows how much I care.