Patient Comments

A number of people have expressed curiosity about the Portland Conference.  As a newly diagnosed individual (July '06, duodenal tumor with mets to the liver), this was all new to me.  This is intended to provide a highlight summary for those individuals who could not attend.  Next year's session will be in Norfolk, VA..  If you can, plan to attend.  I will certainly plan to be there.

This report reminds me of our first English essay every year of High School, "What I Did Last Summer."  The report represents a personal version of what I learned and is certainly not medically accurate.  (By the way, I am an engineer and therefore spelling and grammatical errors are par for the course.)  If you don't agree with my version of the conference, please add your comments or better still write your own.  

The first item of note was the excellent organization, planning and implementation of the conference.  Corie Dean, Kari Brendtro and the supporting cast did a wonderful job.  The site selection and services provided by the Double Tree Inn received a standing ovation from the attendees.  All of this provided a background for the medical presentations and the networking opportunities.

The program was divided into nine program blocks.  Two of these blocks had multiple concurrent sessions.  The other seven blocks were for the entire group of attendees.  Between sessions many of the doctors made themselves available to talk with attendees.  It was surprising how direct, frank and useful these discussions were for those able to squeeze in.

The conference presentations and discussions with other attendees convinced me that this was the right place to be.  For those of us with carcinoid/NET disease there is no substitute for experts who have chosen to devote their career to this cancer. The information presented at this conference provided treatment options that were never mentioned by my local medical doctors.  In fundamental ways the approach to carcinoid is different from "normal" oncology practice.  This conference was awesome!

At least six expert presenters (Drs. Warner, Wolin, Pommier, Woltering, Chen, and O'Dorisio) strongly recommended surgical removal of the primary tumor whenever possible.  Pommier presented a retrospective analysis of nearly 100 patients with mid gut carcinoid.  His results showed a three fold greater survival time (from date of dx) for those individuals who had the primary tumor surgically removed.  During the surgical procedure it is also recommended that the gall bladder be removed.  This is a preemptive procedure because long term use of Sandostatin tends to produce gall stones.  Several presenters also talked about surgical debulking to reduce the total tumor loads.  This apparently reduces symptoms and slows the growth process.  These approaches are not consistent with treatments for "normal" cancer.  Chances are that a regular oncologist would not select this course of action.

Anecdotally, these points were reinforced by one of my networking acquaintances.  Fifteen years ago John was diagnosed with carcinoid that had produced severe metastasis to the liver.  He had surgery to eliminate the primary tumor and has dealt aggressively with the liver damage.  Today John continues working and appears to be in good health.  His wife was generous in suggesting things for me to consider based on their experience.  It was readily apparent that many carcinoid patients attended with their life partners and they work together as a team.  

The final session of the conference dealt with liver mets.  This is of critical importance, since more than 70% of carcinoid/NET fatalities are the result of progressive liver disease.  Drs. Coldwell and Pommier presented exciting new approaches to liver treatment.  Drs. Coldwell and Kvols also talked about nuclear (aka: new-CU-lar) targeted treatments
that attack all tumors.  These procedures are also reported to be effective at treating liver mets.  Because the tumors do not build a resistance to the nuclear radiation, it can be repeated as often as necessary.  Surgical procedures to remove a liver lobe were also recommended when the location of the metastases were confined to a single lobe.     

To me those two aspects were the most important over reaching themes of the conference:
      1. Remove the primary tumor, and
      2. Aggressively treat the liver mets.

The conference started with a panel discussion led by Dr. Woltering.  He presented a real case of a woman in her 90's presenting with a series of symptoms. The panel discussed tests and diagnosis procedures.  Complicating the process was the troublesome "obnoxious son" that kept butting into the Dr.-patient relationship.  The panel was prompted to provide a full range of options throughout the diagnosis and development of an appropriate treatment plan.  At the end the lady was identified as Dr. Woltering's mother.  (Go figure the odds of that!)  All enjoyed Dr. Woltering's sense of humor and the education provided by the step by step process.

Between the opening panel discussion and the closing liver mets session, there were a great many excellent presentations. A few of the talks were aimed at medical experts and went way over the head of this attendee.  Thankfully most of the talks were informative to the average patient in the audience.  While the conference was too long to do a report on all talks there were a couple of sessions worth noting.

For the two concurrent blocks I attended the "Carcinoid/NET 101" and "Confronting Physical and Emotional Changes."

Drs. Warner, Olberg and Wolin provided an easily understood description of the disease and its effects on us.  These three presentations were very informative to the new members of the group.  I would expect that even more experienced people would learn new insights and benefit from these presentations.     

The session on "Confronting..." started with a moving first person account of dealing with carcinoid.  Giovanna Imbesi gave an honest and hopeful picture of her confrontation with carcinoid.  She has been through two surgeries and shared her life altering decisions.  Giovanna used her musical talents, with the help of friends, to produce a music CD.  She composed the music and performed it masterfully on the piano.  She and her music are truly inspirational.

Several speakers discussed the importance of octreotide.  While it has been proven to reduce the symptoms, it is also widely believed to retard tumor growth.  It is almost always recommended for carcinoid/NET patients.  Other sessions dealt with knowing your markers and taking ownership of tracking this disease.  There have been some huge improvements in imaging technology.  This can be a major benefit to pinpointing the tumor locations and tracking the disease.  Very technical presentations dealt with using the unique characteristics of the tumors to provide targeted approaches for attacking this disease and killing it.  While the results have not yet had reached the state of approved treatments the approach seems promising.        

In closing I'd like to make a point of thanking the doctors for their wonderful work and the willingness to participate in this conference.  Key presenters traveled from Europe, Canada and the four corners of the US.  The information that they have provided and their willingness to participate makes this conference of patients, caregivers and medical professionals unique.  It is important that this conference remains worthwhile for all three groups.   

I hope to see you at next year's conference!  

With fond regards,
Ron Salzman