Have a look at it here:

Cancer.NET overview of NETs

NHS Guide to Gastrointestinal Neuroendocrine and Carcinoid Tumours

Annals of Oncology – Symposium Article on NETs

Annals of Gastroenterology – Biology and Management of Gastric NETs

The Oncologist – Carcinoid Tumours

American Journal of Roentgenology – Carcinoid Tumours of the Stomach

Multidisciplinary Symposium – Neuroendocrine Tumours

Carcinoid Founation – A Review of Carcinoid Disease

National Cancer Institute – Gastrointestinal Carcinoid Tumors Treatment

Macmillan – Carcinoid Tumours

All you need to do is go to www.google.com/alerts and then type in keywords (e.g. “Neuroendocrine Tumour”) and your email address.

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.

Preparation for getting travel insurance

Before contacting travel insurance companies you may find it helpful to prepare by having certain information ready.

This list includes many of the things an insurance company will want to know. Some of the questions may seem very personal, but your answers will give an insurer the information they need to help them decide what cover they are prepared to offer you, and what price they will charge.

A typical telephone medical screening process will take, on average 5-10 minutes. If you have, or have had, other conditions as well as cancer you may be asked similar questions about those.

You should be aware that if you do not disclose information that you could reasonably be expected to know when you buy a policy, any subsequent claim that you make could be refused.

Personal information

• The name and ages of all those to be insured by the policy – some insurance companies will insist that family or friends travelling with you are insured on the same policy
• Your address and contact details

About your trip

• The country you are visiting and the type of journey you plan to take. If you have a choice about where you travel, you may consider visiting Europe rather than North America because travel insurance could be cheaper
• How long you plan to stay abroad
• How far in advance you are booking your trip. Some companies will charge you a higher premium if you will not be travelling in the near future, because they believe there could be a higher risk of you making a claim for cancellation
• Any activities you will be undertaking that might be considered a higher risk, such as winter sports

Medical information

A company may ask if you have a pre-existing medical condition, such as cancer. If your answer is ‘yes’ you are likely to be asked more questions about this. Some companies call this their ‘medical screening process’. An insurance company may ask you the following:

• How long ago were you diagnosed with cancer?
• Where is/was your cancer?
• Has your cancer spread? If yes, where?
• Are you undergoing any treatment or taking any medication at the moment?
• Have you had any surgery for cancer in the past?
• Have you any planned treatment or surgery for cancer? If so, when?
• How many times have you seen a doctor (GP or consultant) about your cancer? Some companies ask you about the last time you visited your doctor for any reason, not just about visits related to your cancer. For example, if you are going for check ups to make sure you stay well, some companies may consider you a higher risk to insure
• What symptoms or side-effects do you have now?
• What stage are you at in your cancer journey? Some companies will ask you about your prognosis. This can be an upsetting question to answer but prognosis may be one of the criteria that a company uses to decide who to cover

To consider

If you have taken cancer-related exclusions on your policy you should think about how you will pay for any medical expense that is not covered.

• Find out about medical treatment facilities at your destination
• Think about what you will do if you lose any medication you take or if you have it stolen from your bags when you are abroad
• Think about the type of transport you will be using to get to your destination. For example, a plane journey may not be suitable if you are having certain types of cancer treatment
• If you are being sent abroad specifically for your treatment, insurance is only one of a number of important issues that you will need to consider. We strongly recommend that you discuss these with your medical team

European Health Insurance Card

The European Health Insurance Card (EHIC) has replaced the E111 form, which is no longer valid. Some insurers will insist that you carry the EHIC when travelling to Europe as their travel insurance policies may not be valid if you do not have the card.

The EHIC means that you are entitled to emergency treatment within the European Economic Area (EEA) for free or at a reduced cost. You will get the same care as the people who live in the country you are visiting, but you might not be covered for all the things you would expect to get free of charge from the NHS in the UK. For example, the EHIC will not cover the cost of ambulance services or of bringing you and your family back to the UK. What’s more, you may have to make a contribution to the cost of any other care you need. This is why the government strongly advises all UK travellers to buy separate travel insurance, as well as carrying the EHIC.

Apply for a European Health Insurance Card (EHIC) at Department of Health, Tel: 0845 606 2030 www.dh.gov.uk/travellers. You can also get an application form at your local post office.

Travel insurance companies and brokers

Please find below a list of insurance companies and brokers that you may like to try calling for a travel insurance quote, as well as some financial organisations that can help you in your search.

Please note that in providing information Macmillan Cancer Support cannot give you advice about travel insurance. Macmillan Cancer Support cannot guarantee that you will be able to obtain cover. Macmillan Cancer Support is not endorsing any travel insurance product.

InsureCancer
76 Crooksbury Road
Farnham
Surrey
GU10 1QD
Tel: 01252 780 190
Email: enquiries@InsureCancer.com
Website: www.insurecancer.com

Insure Pink

Equity Insurance Brokers Limited
Registered office: Library House
New Road
Brentwood
Essex
CM14 4gd
Tel: 08000 22 32 13
Email: enquiries@insurepink.co.uk
Website: www.insurepink.co.uk

The Insurance Surgery
Specialist Independent Broker
King Edward House
1 Jordangate
Macclesfield
Cheshire
SK10 1ES
Tel: 0800 083 2829 Fax: 0870 458 7956
Email: enquiry@the-insurance-surgery.co.uk
Website: http://www.the-insurance-surgery.co.uk/illness/cancer/insurance.php?ref=175

Marks and Spencer
Civic Drive
Ipswich
Suffolk
IP1 2AN
Freephone: 0800 731 2424
Website: www.marksandspencer.com

Free Spirit Travel Insurance
Stansted House
Rolands Castle
Hampshire PO9 6DX
Tel: 0845 230 5000
Website: www.free-spirit.com

Manor Insurance Services (Broker)
123/124 Queens Road
Hastings
East Sussex
TN34 1RP
Tel 0800 027 6171 or 01424 718790
Fax: 01424 718 761
Email: insure@manorinsurance.co.uk
Website: www.manorinsurance.co.uk

It’s So Easy Travel Insurance
27 Old Gloucester Street
London
WC1N 3XX
Tel: 0845 222 4205
Email: hello@itssoeasytravelinsurance.com
Website: www.itssoeasytravelinsurance.com

Holiday Services Limited
Kedleston Close
Huthwaite
Nottingham
NG17 2SE
Tel: 01623 407 321
Email: info@holidayservices.org.uk
Website:  www.holidayservices.org.uk

Insure and Go Insurance Services Limited (Broker)
Insure & Go Insurance Services Ltd
Maitland House
Warrior Square
Southend-on-Sea
Essex SS1 2AA
Tel: 0870 901 3674
Email: information@insureandgo.com
Website: www.insureandgo.com

All Clear Travel Insurance (Broker)
6th Floor, Regent House
Hubert Road
Brentwood
Essex CM14 4JE
Tel: 0871 208 8500
Website: www.allcleartravel.co.uk
Email: info@bishopscourtas.co.uk

FOGG Travel Insurance Services Limited (Broker)
Crow Hill Drive
Mansfield
Nottinghamshire
NG19 7AE
Tel: 01623 631331
Fax: 01623 420450
Email: sales@foggtravelinsurance.com
Website: www.foggtravelinsurance.com

MARRS Insurance Broker (Broker)
Towergate Risk Solutions North London
288 Chase Road
Southgate
London
N14 6HF
Tel: 020 8920 1234
Fax: 020 8920 1230

Protected Future
Protected Future Limited
PO Box 432
Tonbridge
Kent
TN9 9DR
Tel:  0845 880 0158 (Mon-Fri 8am-8pm, Sat 9am-6pm, Sun 10am-4pm.)
Switchboard: 0845 880 0158
Email: info@protectedfuture.co.uk
Website: http://www.protectedfuture.co.uk

Travelbility
Peregrine House
Falconry Court
Bakers Lane
Epping
Essex
CM16 5DQ
Tel: 0845 338 1638
Fax: 01992 566901
Email: enquiries@travelbility.co.uk
Website: www.travelbility.co.uk

Medici Travel Insurance
Advertiser House
19 Bartlett Street
Croydon
CR2 6TB
Tel: 0845 880 0168
Email: customer.services@medicitravel.com
Website: www.medicitravel.com

Financial services that can help

The Financial Services Authority (FSA) is the UK’s financial watchdog, set up by the government to regulate financial services and protect your rights. The FSA also provides clear, impartial information about financial products and services to help make money matters clearer for you.

Financial Services Authority (FSA)
Consumer Helpline 0845 606 1234 (call rates may vary)
Minicom/Textphone 0845 734 0104
Open Monday to Friday 8am to 6pm
www.moneymadeclear.fsa.gov.uk

Finding a qualified insurance broker

Association of British Insurers
www.abi.org.uk

British Insurance Brokers Association (BIBA)
Consumer Helpline 0870 950 1790
www.biba.org.uk

Macmillan Better Deal Campaign Line
Freephone 0800 500 800
Open Monday to Friday 8am to 8pm
Open Saturday 9am to 12 noon
www.macmillan.org.uk/betterdeal

NB: Macmillan Cancer Support does not offer travel insurance or recommend insurance brokers or insurance companies.

We can offer support and information in many ways:

• We have booklets on different types of NET, a Patient Handbook, and other useful documents like symptom and diary cards. You can download these here, or we can mail them to you.

• Our helpline is staffed by a friendly and knowledgeable specialist nurse, Cathy, who will be happy to listen to your concerns and answer any questions you have. (Cathy may not be able to answer your call immediately, as she does part-time clinical work, but she will get back to you if you leave a message.)

• We have a team of specialist medical professionals whose knowledge we can draw on to help you with your specific needs.

• We organise Patient Support Groups around the country. These offer an opportunity to meet specialist medical professionals and other patients.

• Our online forum is a great place to share your experiences with other patients.

• See the menu at the side for links to other useful sources of information

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

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You can download any of these documents as a PDF, just by clicking on them. If you’d rather we sent you information by post, please contact us and we’ll be happy to do so.

Patient Handbook  – providing details about diagnosis and treatments- this will be available by the beginning of July 2009.

NET Patients Symptom & Diary Booklet – a useful working booklet that you can use for clinic appointments, results and symptom management.

Nutrition in NETs

Carcinoid Tumours

Non-functioning Pancreatic Neruoendocrine Tumours

Pheochromocytomas

Gastrinomas

Glucagonomas

Goblet Cell Carcinoids

Carcinoid Heart Disease

Insulinomas

Vipomas

NET Patient Booklet, Living with Carcinoid

Food Symptoms & Treatment Record Diary

Getting the Treatment You Need

Exceptional Progress? Assessing the progress made in improving access to treatment for people with rarer cancers

Lung Carcinoids – this is being written and will be ready for publication in August 2009