It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine

It may be time to mention again the definition of Participatory Medicine:

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

The following guest post is a powerful demonstration that these are not empty words. Its author, Bill Claxton, is one of the newest ACOR list managers, helping to make sure the CARCINOID list provides the necessary help to the 950 members of that community, each one dealing with a rare cancer. I have never met him (but I surely hopes this will be rectified soon!) but have been impressed with his general understanding of technology issues. Little did I know! This post, based on earlier posts Bill sent to the ACOR group is full of medical jargon, requiring its own mini-dictionary and a couple of paragraph to explain this rare type of cancer. But it corresponds to the kind of conversations you can find in communities where expert patients share their wisdom. Here is the story of a remarkable man willing to travel wherever the optimal care is it will also take you around the world in the next few minutes.

Bill Claxton is an expert in internet video.  He is Technical Director and Founder of the company Iterate Pte Ltd in Singapore.  An expat from California, he has spent more than 20 years in Asia.  In 2004 he was diagnosed with a mid-gut neuroendocrine tumor (NET) called carcinoid and has spent the past 6 years learning about this disease and sharing his knowledge with others.  He has produced video recordings of every major North American medical conference dealing with neuroendocrine tumors, and webcasts these to audiences throughout the world.  He also co-founded the Carcinoid & Neuroendocrine Tumor Society of Singapore, Asia’s first patient advocacy group focused on this disease.

Carcinoid neuroendocrine cancers are relatively rare malignancies distinguished by small, slow growing tumors which affect the neuroendocrine system. These tumors typically originate in the gastro-intestinal tract, but sometimes arise in the lungs or other organs. Incidence is around 4 persons in 100,000 – but in many parts of the world the disease is under-diagnosed.

A variety of excellent treatment options are available, most of which target specific peptide receptors on the tumor cells. Among the best known treatments are Octreotide, Lanreotide and similar hormonal treatments, which provide symptomatic relief and have anti-proliferative benefits. Other newer therapies use these drugs in combination with radioisotopes, as a targeted radiation treatment. Nonetheless, as with most orphan diseases most patients first get misdiagnosed and then suffer from a significant delay in diagnosis.

Recently I had a debulking surgery.  This was a very successful op and I’m on the mend with probably 5 more good years added to the clock.  I believe this surgery is a good example of participatory medicine and the success of the surgery can be credited to:

  1. developing a surgical plan, and
  2. assembling a multidisciplinary medical team

Many hospitals practice patient-centered treatment, which means looking first at the needs of the patient and secondly to the standard-of-care.  With participatory medicine, not only are patient needs central, but the patient themselves is involved in planning and follow-up.  Often this takes the form of choosing physicians or selecting among various treatment options.  In my case, I developed my own surgical plan.

Background of my case is ileal primary, typical carcinoid, removed at surgery in August 2004.  Microtumors were visible throughout the peritonium.  I spent 3 years seeking the right PRRT therapy to remove these microtumors and eventually was treated at Rotterdam with 4 cycles of Lu-177 (Lutetium-177, a relatively new radioisotope) (in 2007-2008).  But because so much time went by, some of these small tumors had grown to a size of 2-3cm.  Such tumors are not particularly responsive to Lu-177 and Rotterdam was not offering Y-90.

A Gallium-68 scan a year ago showed stable disease but about 3 months ago I noticed abdominal pain.  A follow up CT showed constriction of the bowel near the original tumor site, and progression of some tumors that had been present for years.  I was given two options:

  • (A) a laproscopic resection to remove the constriction, and
  • (B) a peritonectomy to remove all the tumor metastases, and probably a lot more.

I did my own research and eliminated option B as too radical.  It’s a 10-hour surgery with high morbidity.  I then considered option A, but concluded that the reason for bowel kinking and tethering was not new tumors – it was the excess serotonin being flushed through my system.  I had not been on Octreotide because I wanted to see if the Lu-177 PRRT actually worked.  There was at least one lesion on the liver and I was flushing and having frequent diarrhea.  So I countered with option C, selective debulking with resection of the constricted ileum.  I figured that if I could eliminate the source of the flushing, I would not have another episode of bowel constriction for many years.

The surgical plan I developed was based on my scans since 2004.  I keep copies of all my scans in the Dicom image file format, and use an open source Dicom reader.  Referring to the radiological reports that accompany the scans, I was able to copy out the relevant images into a Word document.  I circled the larger lesions and recorded the imaging modality (eg- CT, SPECT, MRI, Octreoscan or Ga-68) as well as the date.  Assembling these images into a set of 6-7 ‘targets’ I was able to demonstrate that the same tumors were present over several years and had been relatively consistent in size and location.

I brought this surgical plan to my original surgeon in a private Singapore hospital.  He said he could do the operation, but it would be costly, and recommended a colleague at a public hospital.  I met him and though he was very sympathetic, admitted this surgery was too big for him.  My medical oncologist recommended 3 others working in public hospitals and the one who had the best references as a cancer surgeon was selected.  I met him and he said he could handle everything except those mets in the retrovesilical pouch – a location between the bladder and the rectum.  He offered to bring his colleague who is a colo-rectal specialist into the surgery at no extra charge.

The colo-rectal surgeon was concerned that debulking could not be done without damage to the rectum, and ordered an MRI.  This scan showed some tethering of the rectum, so I had to give permission for a possible rectal resection and temporary ileostomy – to bypass the rectum during a 6-12 weeks healing period.

I consulted a liver surgeon specialized in NET (Neuro Endocrine Tumor) in the USA and a nuclear medicine specialist in Germany on the issue of whether my docs could safely leave behind tumor cells during debulking – known as an R1 resection. I was told most definitely to go for R1 and try to leave organs intact if possible.  The rationale is that I had other distant mets which were not targets of the surgery (so attempting R0 was pointless), and that I could opt for PRRT at a later date to clean up small distant metastases.

I had my case and surgical plan put before the neuroendocrine tumor review board, which meets every 2 weeks in Singapore.  The board is a diverse group of about 20 specialists, which represents the range of specialties such as endocrinolgist, radiologist, pathologist, surgeon, etc.  The unanimous opinion was to recommend proceeding according to the surgical plan, plus removal of the gall bladder.  Sandostatin was recommended prophylactically.

The surgery itself lasted about 4 hours and all the targets were removed and all proved to be metastatic when the pathology report came back.  The only complication was the need to resect my colon and put in a temporary bypass.  They tried to simply scrape away the nodules, but I started loosing a lot of blood and they were damaging the rectum.  So they did the resection.  Samples were sent for cryogenic storage.  In the case of new treatment options, these samples may be useful in screening me as a candidate.

My surgeons were so happy with the surgical outcome that they presented my case at a weekly internal review meeting.  I also had visits from medical students seeking to understand neuroendocrine disease.  They all complimented me for taking charge of my own case, and I really earned the respect of my surgeons.  They are now keenly interested in NET cancer, and have been referred other cases from my medical oncologist.

I apologise for this long post, but I wanted to share how you too can benefit from participatory medicine.

My Story from 2004 to 2007

When I had my first surgery in August 2004 (actually the same week as Steve Jobs), my surgeon shared with me a DVD that he produced showing the inside of my abdomen. It was as if someone had thrown sand inside – there were little white specs all over the place. He explained that these were microtumors and that they couldn’t be removed because it would take forever and there would be tremendous blood loss. So he simply excised about one foot of terminal ileum surrounding my primary tumor, and stitched me up. He did not know enough then to remove my gall bladder or even to standby a dose of Octreotide.

Months later, when I learned about the availability of PRRT (at that time I was considering Indium treatment in USA) I asked him how I could know if it worked. He said that the best way was visual inspection and offered to do a laproscopic investigation. He said that if it worked, all the small microtumors would be necrotic and would melt away into the bloodstream, leaving only scar tissue. He even suggested that if no microtumors remained, I could be certified ‘cancer-free’, but this is really a misnomer.

I read a comparison study of the various isotopes used for PRRT and it was obvious by 2005 that Lu-177 was the best available treatment and thus I decided against Indium. Lu-177 has two things going for it. First it has a smaller range of just a few millimeters compared with Y-90, which acts over almost a centimeter. And second, the gamma radiation it produces can be used for imaging.

Now if you read studies published about the effectiveness of Lu-177, it is very clear that the best outcomes are when the patient has only small distant mets and when the patient’s 5HT receptors have good takeup for Octreotide. This suggests that targeted radiation treatment should be applied as soon as possible after the primary is removed, and before putting the patient on Octreotide for years. Yet, in places such as Erasmus where Lu-177 is delivered in a trial setting, there is a bias towards selecting patients with more advanced disease or obvious progression after Octreotide treatment. This may seem counterintuitive, but it is because they need to measure the results. So I could not get admitted until I demonstrated liver mets in late 2007.

This delay of 3 years meant that some of the microtumors progressed to 2cm – 3cm size and were candidates for debulking. But what about those that didn’t progress? What about all those ‘grains of sand’?

The answer was amazingly revealed to the delight of my surgeons a few weeks ago. All of those small microtumors were gone and just as my first surgeon had predicted – there were scar tissues remaining. My liver was completely clear except for a 1cm tumor that they removed surgically. This visual inspection provided conclusive evidence that PRRT using Lu-177 worked on small tumors but was less effective on larger tumors.

These days there are clinics such as Bad Berka where you can get a personalised PRRT therapy that combines Lu-177 for small distant mets and Y-90 for larger tumors. But except for inoperable cases such as bone mets, one should always keep an open mind about the value of surgery, both for debulking and diagnosis. Even the best scans we have today – arguably the Ga68 PET/CT – can only image tumors down to about 1/2 cm.


PRRT – Peptide Receptor RadioTherapy is a targeted radiation treatment currently available only at a few clinics in Europe and Australia.  The treatment combines a radioisotope with a synthetic hormone and it is given by intravenous drip lasting several hours.  The hormone binds to specific receptors on the tumor cells and thus gives a highly targeted radiation bombardment to the cancer.  Side effects, if any, are very mild.

Octreotide – Octreotide is the generic name for Sandostatin, the most common treatment for neuroendocrine tumors.  It is a synthetic version of Somatostatin, a hormone produced naturally in the body.  It is usually administered as a monthly deep muscle injection with long-acting release. This drug provides symptomatic relief and is anti-proliferative.

Bad Berka – Zentralklinik Bad Berka GmbH is a clinic in former East Germany.  The Chairman and Clinical Director of the Department of Nuclear Medicine and Center for PET/CT is Professor Dr. Richard P. Baum.  His clinic provides various specialised scans and targeted radiation treatments and has treated hundreds of patients with neuroendocrine tumors.  The clinic is best known as a place where one can obtain patient-centered treatments, with just the right mix of Lu-177 and Y-90 PRRT.

Erasmus – Erasmus Medical Centre is a university hospital located in Rotterdam Netherlands.  The department of nuclear medicine is headed by Dr. Eric Krenning and Dr. D. J. Kwekkeboom who pioneered the use of Lu-177 as a targeted treatment for neuroedocrine cancer.  They have together published numerous papers and regularly speak at medical conferences on the benefits of PRRT.


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22 Responses to “It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine”

  1. @stephenjdowns Real story of expert cancer patient developing his own surgical plan based on own scan images:

  2. Steve Downs says:

    RT @gfry: Real story of expert cancer patient developing his own surgical plan based on own scan images:

  3. ehealthgr says:

    RT @gfry: @laikas The patient in looked at his problem. He has no bias and found a solution no one of his docs considered.

  4. I have a question for Bill: how much of what he has learned and used for his treatment came about thanks to the Internet?

    In other words, if you were not a networked individual do you believe you would ever have been able to find the same information that helped you devise your own surgical plan?

    • Bill Claxton says:

      @gilles, It is true that much of the information needed to make informed decisions about treatment options for neuroendocrine disease comes from the Internet. But it is equally true that if you attend the patient conferences you can get most of what you need to know.

      I first read sites that were organised by patient advocacy groups, then pharma sites, then began reading the source documents – research papers in peer-reviewed medical journals. It is slow going at first but then the pieces begin to fit together.

  5. What can patients suffering from rare diseases do to maximize the care they receive? Here is 1 remarkable story:

  6. a powerful demonstration of what an e-patient can change his fate by becoming an Expert patient via @gfry

  7. meant: a powerful demonstration of how an e-patient can change his fate by becoming an Expert patient via @gfry

  8. @laikas The patient in looked at his problem. He has no bias and found a solution no one of his docs considered.

  9. rlbates says:

    RT @laikas a powerful demonstration of what an e-patient can change his fate by becoming an Expert patient via @gfry

  10. RT @gfry: It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine

  11. Dave Walker says:

    RT @laikas a powerful demonstration of what an e-patient can change his fate by becoming an Expert patient via @gfry

  12. Andrew Spong says:

    It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine | #hcsmeu #hcsm

  13. It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine About a rare #cancer and #WhyPM

  14. SusannahFox says:

    Sorry to be a downer, but there's LOLcats and then there's cancer. A story of access, literacy + passion #g2e

  15. Satish says:

    Bill, thanks a ton for writing about your experiences. It helps to learn and understand about Net. I am impressed looking at your awareness and involvement for your own treatment, wishing you good luck.

  16. Elisa says:

    Dear Bill,

    It is Saturday, May 5, 2012, and I just found your “story.” Thank you so much; I was very impressed with how you put your plan together.

    My husband was diagnosed with NET–pancreas with mets to liver, in late September 2011. Shock, etc. He went through chemo, re-staging, where PET showed shrinkage; went to Johns Hopkins in Baltimore, MD, for surgical consult. They could not do any surgery; a lot of tumor occlusion in superior mesenteric vein, portal vein, splenic vein. Big let down, and put us into crisis-thinking mode. Felt hopeless. Felt as though we lost a lot of precious time because we have been relying on an oncologist from our town in NY, who is not an expert re NETs. Because I was back and forth at hospitals with my husband, and then the chemo 3 times a week, I really didn’t get to research much of anything because of lack of time, staying with him, and relying on the oncologist, even though it kept bugging us that he never really had answers to our many questions.
    It was all new to us, and we just went through whatever was recommended.

    His oncologist who had my husband on Carboplatin and Etoposide until mid March, then decided to begin Irinotecan and taxol. My husband could not tolerate this chemo, so only took it 2 times, and since April 11, 2012, has been on nothing.

    I stumbled across PRRT, which sounds hopeful, but it’s not being done in U.S. We know about Bad Berka, Germany, Basel Switzerland. I have watched many videos of the CARCINOID/NET CONFERENCES HELD IN EUROPE, SINGAPORE AND CANADA.

    I happened to find a lot of info on the internet in my research quest. Came across Dr. Warner of Mt. Sinai-expert in carcinoid/net tumors. We went to see him, a lot of blood/lab tests were done, original pathology report and slides are being reviewed by Mt. Sinai pathologist team; and Dr. Warner said my husband has to get another Octreoscan. Getting that done this coming week, May 7,8,9.

    I believe my husband was not diagnosed when all this was happening inside of him, and he had this a while, even though he had no abdominal (or any other) symptoms. Anyway, it’s scary, and there are so many complications and things to think about.
    He had been doing reasonably well from September 2011 until this March 2012. Now he is in pain, extremely thin–a lot of weight loss since March. This causes me a lot of concern and fear.

    I can only hope/trust that Dr. Warner will follow through with everything. Any little symptom I know of or see, I research. It seems, from your story, that patients with net or carcinoid disease have to have many experts look into a lot of things that could be going on.

    Anyway, thanks again, and I hope I can become only 1 tenth as good as you in helping my husband with this rare cancer.

  17. Sat says:

    Elisa, please let us know your email ID, I have some documents Bill forwarded me on PRRT, I can send you those. PRRT is also available in India. It’s can be done only at two places in India

    1) HCG Banglore
    Dr. Kallur, HCG Banglore, Head of Radiology (PRRT expert), you can call up and get his number if you wish to discuss.
    They import isotope from Netharland so easy availability but costly than below.

    2) Mumbai (Bombay)
    Dr. Krishna – Hinduja hosiptal, Mumbai – Head of Radiology dept (PRRT expert)
    They get isotope from Indian govt. hence less availability but cost effective

    Hope this may help you.

  18. […] in a collaborative cardiovascular surgery work environment, as well as Bill Claxton’s monster post about how he – a patient – helped develop a surgical plan to treat his cancer. One book […]

  19. […] Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. – Read More […]

  20. Melissa says:

    I was diagnosed with late stage 3 NET in Aug. 2013.I live close to Palo Alto and was lucky enough to have George Fisher at Stanford as my doctor who is a specialist and speaks often on NET and is just starting a clinical trial based on the Rotterdam treatments except as infusions that I may qualify for, but its a double blind placebo study and I’m not sure if I should keep my current treatment which Dr. Fisher says isn’t working great–Octreotide infusions every 3 weeks, hydrocodone for the pain and basically I don’t eat anything I can’t digest which includes everything except carbs, ice cream and potato chips. Thus I am no longer losing weight. It’s not nutritous, but everything else is instant diarhea especially the things I love—raw vegetables, meat. No way.
    When they first discovered the tumors they removed 5 from my illeum, small intestine and pancreas and now they say my carcinoid syndrome is highly functioning, producing lots of hormones and they believe there are more tumors that they can’t see on the CT scans. They removed 14 lymph nodes around the surgical site and 8 were completely infected.
    My biggest problem is naseau, pain in my belly, anxiety and extreme fatigue.
    I used to work 2 jobs because my husband is disabled by a seizure disorder and has not been able to get on disability so I am the sole support of the family–two kids—I had to quit one job in Aug. because I am so tired and naseaus all the time. So I have health care, but work only 50% teaching at the University of Cal.
    I want to figure out if there is a way to stop this cancer from getting worse. They said 2-5 years for me to live but they added there’s no way to know and I don’t believe them. I don’t feel THAT bad and after losing 10 pounds with the surgery my weight is stable.
    I keep researching the elements of chromogranin and the HCIAA 5 components and looking at my blood work–liver function is not so good–numbers too high, but I don’t know what to do next.
    Final problem–Octreotide is causing issues for my heart, chest pain, shortness of breath. I am 51 years old and before this strong and healthy. I feel frightened and concerned but hopeful I can figure this out. I am smart enough to read and understand the medical literature.
    Any advice?

    • Heather says:

      I was told I only had 5yrs in 2006. I had 32 tumors (28 in my liver). I started Octreotide in 2006 until 2012. In 2012 BCBS refused to cover anymore. My cancer was not active and tumors shrinking. I had to go 15 months without any treatment. Because of that, my cancer spread. In July of 2015 I started Lanreotide. It was FDA approved as an anti neoplastic drug. I was vomiting, in pain, hard time breathing from time to time. But once I got on the Lanreotide it stopped. I was told by my doctor, Dr. Matthew Kulke at Dana Farber Cancer Center in Boston, MA, that the extra hormones will cause problems with heart & valves. So, if I were you, I would get on Lanreotide. If you want to follow me on FB I would be glad to share with you.
      Please believe that you can live a long life with this! I was stressed in the beginning too. But it’s been 10yrs. I had it for almost 10yrs before diagnosed.
      Sending prays!♡

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