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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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