The 1st International Meeting of Patient Self-Help Groups
“Current standards in diagnosis and therapy of neuroendocrine tumors”
Saturday, 20 November 2004
Charite-Campus Virchow-Clinic, Augustenburger Platz 1
Berlin, Germany
on the campus: Mittelalle 10, Auditorium 6.

Journal of Human Cancer

My trip to the 1st International Meeting of Patient Self-Help Groups
“Current standards in diagnosis and therapy of neuroendocrine tumors”
, Germany, November 2005
and visit to Munich afterwards
Susan Anderson
Tempe, Arizona, USA

It was an honor, privilege and wonderful opportunity for me to attend the 1st International Meeting of Patient Self-Help Groups, in Berlin, Germany, November 2005.  I was able to interact with very special carcinoid / neuroendocrine tumor physicians (the experts) and support / self-help leaders from Germany, France, Netherlands, Sweden, England and the USA.

 At 10:05 a.m. Wednesday morning 17 Nov. 2004 I left Phoenix and flew to Dallas / Ft. Worth, TX, where I changed to a plane going to Frankfurt, Germany.  In Frankfurt I went through customs and changed planes for the short flight to Berlin, arriving at 11:20 a.m. Thursday morning, 18 Nov. 2005.  Carol-Anne Wilson was also on this flight.  After getting our luggage Carol-Anne Wilson and I took a cab to our accommodations in the very nice three star Mercure Hotel Berlin An der Charite at InvalidenstraBe 38, 10115 Berlin, Germany.  Web page: /    Before the Berlin Wall came down in 1989 this location was deep in East Germany (behind the “wall”).  The many TV channels provided BBC and CNN in English so I was happy and could keep up with world events.

Earlier I had been asked to write a short version of my carcinoid story for use at a “press conference”.  I was invited as an example of a “long term survivor and activist who helps others through my web page, put on the Internet in April 1997,  and replying to emails generated by this web page…….. the first patient to have a web page”. 

 The “press conference” was at 1 p.m. Friday 19 November 2004 in Konferenzraum A (Conference Room A) at the Campus-Mitte of the Charite University of Medicine Berlin.  After introductions, discussions and lunch, we enjoyed a round table discussion among physicians, patients and a journalist.   Attending were: Professor Dr. Bernard WIEDENMANN, Professor Dr. Kjell ÖBERG, Dr. Joern Ole VOLLET,  Detleft HÖWING (journalist), Silke KUHNERT, Inge WEINERT, Petra KÖNIG, Dr.-Ing. Hermann STRUB, Susan ANERSON, Monica WARNER, Carol-Anne WILSON, Bisc DEENIHAM, and Nancy COSTE…. photographer (Nancy who lives in France is a photographer of famous people, ordinary people, children, architecture, fashion, creation of calendars and numerous other subjects ….. sample of recent article

A dinner for the conference presenters and patient representatives was organized by Prof. Dr. Wiedenmann.  It was an honor to be invited and attend this special dinner held in Reinhard’s im Nikolaiviertel, PoststraBe28, 10178 Berlin on Friday evening 19 November.  I was delighted to be seated between my hero Dr. Richard R. P. WARNER of New York City, NY and Dr. W. W. de HERDER of Rotterdam, Netherlands, and across the table from Prof. Dr. Philippe RUSZNIEWSKI of Paris, France.  Some of the others attending were: Dr. Hakan AHLMAN, Gotteborg, Sweden; Dr. E. P. KRENNING, Rotterdam, Netherlands; Anders EDWARTZ of Sweden; Silke KUHNERT and Petra KONIG of Berlin, Germany; Inge WEINERT of Germany; Dr.-Ing. Hermann STRUB of Bonn, Germany; Dr. Jan ZUIDEMA-VERHAAK of the Netherlands; Carol-Anne WILSON of Plano, Texas, USA; Bisc DEENIHAN of Granada Hills, CA, USA; Monica WARNER of White Plains, NY USA; Nancy COSTE of Paris, France; and Susan ANDERSON of Tempe, AZ  USA.

 Our host Prof. Dr. Bertram Wiedenmann, Chairman, European Neuroendocrine Tumor Society (ENETS)  welcomed everyone.  Simultaneous translation from German to English and English to German was provided via head phones, although almost everyone spoke in English.  Prof. Dr. Wiedenmann spoke of our opportunity to develop cooperation and dialogue among the self-help groups of Europe and the USA as we grow together, developing synergies and personal friendships.

Next, representatives of patient self-help groups spoke:

- ANDERS EDWARTZ, Sweden, Pres. of CARPA, The Carcinoid Patient Association

- PETER GWILLIAM, England, Living With Carcinoid “The Quiet Cancer”.  Spoke the activities in England and then said many gracious things of praise about me and my web page; this was a total surprise, but very much appreciated.  and

- Dr. Jan ZUIDEMAN, the Netherlands of “Stichting Doorgang”, (in Dutch)

- SUSAN ANDERSON, AKA Sunny Susan in AZ of Tempe, AZ, USA  I spoke of being diagnosed in May 1995, after years of searching; putting up my web page in April 1997; speaking with new patients on the telephone, but mostly via emails from around the world; having lunch with winter visitors to AZ; and being on the steering committee of the new NORTH AMERICAN ALLIANCE FOR PATIENTS WITH NEUROENDOCRINE TUMORS (NAAPNET) that formed after the New Orleans, LA, Carcinoid Conference the end of September, and of our steering committee meeting in the Washington, D.C. area the last week-end in October.  I also stated that I see NAAPNET as an “umbrella” organization not to give orders, but to assist and coordinate the support groups throughout the USA.  I finished by saying the next Carcinoid conference in the USA shall be held in Philadelphia, PA in September 2005; and that I had brought my credit card size 2005 calendars and also small magnets for everyone with my web page and email addresses.

- SILKE KUHNERT, Germany, spoke of cooperation among the self-help groups and not isolation.

- HANS BINGER, Germany

After each presentation the floor was opened for questions.

- Professor Dr. Kjell ÖBERG, Uppsala, Sweden spoke on: “Current diagnosis of gastroenteropancreatic neuroendocrine tumors (GEP-NET)”.   Dr. ÖBERG’s laboratory has been doing tests for CgA since 1987, also test for CgB.

- Dr. Hakan AHLMAN, Gotteborg, Sweden spoke on: “Current surgical treatment of GEP-NET”.

Prof. Dr. Philippe RUSZNIEWSKI of Paris, France spoke on “Current non-surgical treatment of GEP-NET”.  First treat symptoms, then resection tumor burden and next provide palliative treatment such as somatostatin analog and interferon to provide stability, not shrinkage of tumors, but to STOP tumor progression (this is the combination I have been on since 1999 as prescribed by Dr. R.P.R. Warner).

LUNCH was provided which afforded us additional time for networking.

- Dr. E. P. KRENNING of Rotterdam, Netherlands spoke on “New developments in targeted radiotherapy of GEP-NET’.  Dr. Krenning developed the OctreoScan.   He spoke of Indium-111, Lutetium-177, Yttrium-90, and Tyr3-OctreoTate.

 - Monica WARNER and
- Dr. Richard WARNER spoke on “Networking of
Patient Self-Help Groups, and the Carcinoid Cancer Foundation founded in 1968 to further educate and encourage research relating to neuroendocrine tumors.  They spoke of the positives of self-help groups and also some negative factors of self-help groups.

- Ulla-Stina RASK, of Sweden, spoke of their upcoming Carcinoid Conference, 4 February 2005: “Symptoms and Diagnostics, Treatment Methods, Current Research, and Dietary Aspects”.  This conference shall be in Swedish and most people in Norway, Denmark, Finland and Sweden will be able to understand the language.  Ulla-Stina also surprised me, by praising “Sunny Susan”, my web page and the help people receive from me, another lovely surprise and very much appreciated.  Later I gave Ulla-Stina my magnets and 2005 calendars with web and email address to be given out at this conference.

- Bisc DEENIHAN of Granada Hills, CA, USA spoke of the California Carcinoid Fighters (CalCF).

- Carol-Anne WILSON of Plano, TX, USA spoke on support groups in the USA and also of the steering committee of the new NORTH AMERICAN ALLIANCE FOR PATIENTS WITH NEUROENDOCRINE TUMORS (NAAPNET).

- Host Prof. Dr. Bertram WIEDENMANN, Chairman, European Neuroendocrine Tumor Society (ENETS) had additional questions and answers and the concluding remarks.

After the conclusion of the conference many of us rode a bus to a dock on the Spree River in downtown Berlin for a beautiful three hour cruise through Berlin seeing the lovely city lights (and Christmas decorations).  This cruise, and wide variety of deserts, coffee and teas, was arranged by Silke KUHNERT of Berlin, Germany.  An enjoyable time was had by all on the boat.

Sunday  21 November 2004 was a day for packing and sightseeing in Berlin.
Bea Lemming, a friend from VA, and her husband Rolf (a native of Berlin) kindly offered to show me Berlin on Sunday afternoon.  They were in Berlin to visit Rolf’s mother and to attend the conference.  We drove for several hours with Rolf explaining history of Berlin and the changes over the years.  We stopped at Check Point Charlie, memorial to The Berlin Airlift (known as “Hunger Rake”), and the Brandenburg Gate, in addition to seeing the major federal buildings, Reichstag, Goddess of Victory statue, museums, churches, Angel of Peace memorial, and the annual Christmas Market that had just begun.  This was a very interesting and enjoyable afternoon; I appreciate the Lemmings kindness very much.   Bea founded Capital Area Carcinoid Survivors (CACS) (Capitol area is: Washington, D.C., Maryland & Virginia). 

My visit to Munich, Germany, 22 – 26 November 2004

Monday morning, 22 November, we scattered to different parts of the world.  Leaving Berlin in light mist / snow I few to Munich, Germany, and after a 28 km cab ride checked in to the Bavaria Hotel at Gollierstrasse 9, Munich 80339, a delightful, three star, small (50 rooms), five story hotel with underground parking, bar, good breakfast in dining room and convenient to the underground.  They had CNN in English so I continued to keep up with world happenings.  I unpacked then had the hotel schedule me two tours; then I walked in the area and had a good dinner before going to bed early as I was exhausted.

 Tuesday, 23 November, I enjoyed breakfast and a slower day.  I walked to the underground and took a subway to Hauptbahnhof (Central Station) in downtown Munich, across from the huge department store Hertie completely decorated for Christmas.   I joined a group of twelve tourists for the three hour city sightseeing tour “Munich at its best”.  We had a good overview of Bavarian history, visited the 1972 Olympic grounds and toured the Nymphenburg Palace (birth place of King Ludwig II) the first part built in 1664, in addition to seeing the city from the bus.  After the tour another tourist and I ate a large lunch at the super large buffet in Hertie’s.  Later I returned to the hotel for the night.

Wednesday, 24 November, I was picked up at Bavaria Hotel at 7:45 a.m. and taken to the meeting point for a 10 hour day tour of The Royal Castles Neuschwanstein and Linderhof.  There were 47 of us on the tour and we all were able to sit on the upper deck of the double decker tour bus.  We left Munich in bright sunshine, but it soon clouded over and we had dark clouds and mist / fog for the rest of the day.  Although there was snow on the ground many places the pastures were still green.

Our first stop was at Castle Linderhof which we toured after a walk through the woods with snow on the ground.  This castle was built in French rococo style.  Linderhof is one of three castles build by King Ludwig II, and although is the smallest one it is by far the most lavish and beautiful.   Our next stop was the town of Oberammergau, site of the Passion Play since the 1600’s that is put on each decade (next one will be in 2010), richly painted houses and in the heart of woodcarvers area.  We stopped to shop at some delightful stores.  I especially liked Heigl’s Geschenk Paradies (Gift Paradise), 82487 Oberammergau, Theaterstr. 12, Germany (I purchased some items to be shipped home).   After leaving Oberammergau we drove to Neuschwanstein and had lunch in one of the hotels at the base of the mountain.  We viewed, but did not tour, Hohenschwangau Castle.

Our tickets for the tour of the fairytale Castle Neuschwanstein were for 14:55 p.m.  When Howard toured the castle as a child living in Bavaria they drove up the “mountain” and parked in the stable area, but that is a thing of the distant past.  Now everyone must walk up the very steep road approximately 25 minutes to reach the castle.  Or, you could pay 5 Euro for a ride of the way up the “mountain” in a wagon drawn by two horses.  I chose to ride, and then the sign said it was an additional eight minute walk to the castle.  Most of us took longer than eight minutes to complete the climb to the castle that was fog shrouded.  The tour of Castle Neuschwanstein was very interesting with hundreds of steps to climb both up and down, and lasted approximately 45 minutes.  This castle while interesting was not as lavish or beautiful as Castle Linderhof.  After the guided tour finished we had to make our way through various gift shops and then down down down to leave the castle.  Due to fog we could not see anything of the area.  After part of the walk down the steep road, I was able to obtain a seat (in front with driver and two visitors from NYC) for the ride back to the village / hotel area for 2 Euro.  After everyone was on the bus we left at 4:30 p.m. for the 110 km drive back to Munich in the dark, arriving about 6:30 p.m.  After eating downtown I took a taxi back to my hotel.

Thursday, 25 November, I visited Dachau (Concentration Camp) on my own.  After a 25 minute walk from the hotel I reached the Hackerbrucke station, having just missed a train I stood on the out-of-doors platform approximately 30 minutes until an S2 train arrived headed for Dachau and Petershausen.  It was a 20 minute ride to Dachau, where I left the train and walked to the main street and got on a city bus.  After a few minutes there was a stop for Dachau, and then a walk to the concentration camp memorial that was set up in 1965 to remember those who were forced to suffer atrocities; the camp opened in March 1933.  I visited the museum and then saw the 22 minute documentary film telling of the camp and its gruesome history, most of the film was shot by SS troops.  After viewing the film I visited more exhibits and the book store.  I walked to the city bus stop and rode back to the Dachau railroad station where I had about a 30 minute out-of-doors wait on the platform before a train arrived that took me to Hauptbahnhof (Central Station) in downtown Munich.  After window shopping and eating I returned to Bavaria Hotel to pack for my trip home.

Friday, 26 November, I arose at 4:45 a.m., had called for a taxi to be at hotel at 5:30 a.m., I went down at 5:15 a.m. and the taxi was there waiting for me.  So, off we went to the Munich airport in light snow and fog.  Various things happened in that airport so good thing I had some time.  Flew to Berlin, was there for about an hour.  ALL planes running late in Germany due to snow and/or FOG (in Frankfurt).  Flew on to Frankfurt, arriving LATE, got a electric cart to take me to other terminal and gate, without that ride I would NOT have made the AA flight to the states!  Got on the 9 hour flight for Chicago.   Arrived in Chicago late again, got luggage, went through customs, rechecked bag and got transport to take me on train and to another terminal and the gate for flight to Phoenix.  Left Chicago late got to Phoenix and my checked bag did NOT get on the flight with me.  But American Airlines thought it would come in on the next flight and they would deliver it to me.   So................ up at 4:45 a.m. Fri., arrived here in Tempe, AZ at 7:30 a.m. (Munich time) Saturday, 27 November 2004, long day!   I rarely sleep on planes, buses, in cars and etc., but finally slept a bit on the flight to AZ from Chicago so am wired.  My checked suitcase was delivered to me about 10 a.m. on Saturday morning, 27 November 2004.

Copyright 2004 and beyond by Susan L. Anderson

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