Carcinoid Central

Coffee & Conversation: February 8th in Harrisburg

2009-01-15T13:04:00.000-08:00

Happy New Year!

We are starting off the New Year with a Conversation and Coffee at the Linglestown St. Thomas Roasters (5951 Linglestown Rd, Harrisburg). Held from 2 - 4 PM on Sunday, February 8th, this event provides a relaxed setting to talk with other patients about living with the challenge of carcinoid cancer and related Neuroendocrine Cancers.

Also, please see our 2009 calendar of events posted at PCCAN.net. You will see that we've added some Coffee & Conversations in a number of new locations around the state. Please contact me if you are interested in participating and if you'd like to arrange one near you.

Teresa

Governor Rendell & Awareness Opportunity

2008-11-19T09:42:00.000-08:00

What I had previously referred to as a press conference with Governor Rendell turned out to be the taping of the WITF-PBS show Smart Talk with Governor Rendell as the guest. David Botero, along with Kevin Gibson (you’ll remember them both from the Hope in Handball fundraiser last year) were instrumental in orchestrating our presence at the taping. David and Kevin along with Lucille, Vicki & Rob, Jeff and I were members of the audience.

Although we were unable to make our presence known in the show, we were able to talk to many of the WITF staff, other members of the audience and pass out information, pins, and bracelets. Several of us were able to have brief conversations with Governor Rendell and give him the material as well. Hopefully we have planted a seed that will grow into even greater opportunities for creating awareness about carcinoid/NET cancers.

Many thanks to David and Kevin for their continued efforts to create awareness and bring attention to our cause and to Lucille, Vicki & Rob, and Jeff for being willing to join us with just a half days notice.

Tragic Event Creates Awareness Opportunity in the Media

2008-11-17T08:07:00.000-08:00

The state of Pennsylvania is morning the loss of the Lt. Governor, Catherine Baker Knoll. It is well known that her death was the result of complications from treatment of a neuroendocrine cancer, although as far as I am aware the specific type of neuroendocrine has not been reported. While being respectful of Baker Knoll’s family’s wishes to keep the specifics of her disease private and being respectful of the fact that they are mourning the loss of a loved one, we can use this sad occasion as an opportunity to create awareness of carcinoid/NET cancers.

Please join me in efforts to bring awareness of carcinoid/NET cancers and the need for proper treatment diagnosis and monitoring by bringing attention to any misinformation you see or hear and using it as a catalyst for spreading accurate information. This morning I came across a news article, prompted by the death of Baker Knoll that presented inaccurate information about carcinoid/NETs, including misinformation quoted by a doctor. I wrote to the reporter, bringing the misinformation to her attention and expressing that it is because of such information that the seriousness of carcinoid/NET cancers are dismissed and that some patients suffer unnecessarily and die prematurely.

If you come across information that is incorrect but don’t personally want to respond, bring it to the list’s attention so someone else can. If you like to write, consider writing a letter to the editor of your local paper. If in your letter you reference an article about Baker Knoll’s death that was already run you improve your chances of being published. Check the paper for the guidelines about submitting letters. (And, if you are like me you may need to curb the urge to express your anger about the situation since the information will be better received if it comes through in a kind tone.)

We as patients can make a difference, not only for ourselves but also for the next generation of patients diagnosed with a carcinoid/NET cancer. Let’s seize the opportunities to education the public and medical community—even if it is one doctor or one person at a time, it is worth it if it helps one person be diagnosed earlier or treated properly.

PCCAN’s 5th ANNIVERSARY MEETING

2008-10-23T07:50:00.000-07:00

Sunday, November 9, 2008

2:00—4:00 pm
At Penn State Hershey Medical Center

Conference Room A (at the rear of the cafeteria dining room)

Please join us for the video presentation*:

Understanding Carcinoid:

The Disease, Diagnosis, Management, And Biochemical Control

with Nancy M. Gardner, PhD, ARNP-BC

Join us following the meeting for refreshments and help celebrate our first five years of supporting, educating & advocating.

Please RSVP with Teresa by Nov. 4th
Email: CarcinoidSupport@juno.com
Phone: 717-.576.5095
More information can be found at our website: www.PCCAN.net

*courtesy of the Carcinoid Cancer Awareness Network

Nov. 9, PCCAN Meeting

2008-10-20T19:38:00.000-07:00

Reserve Sunday, November 9th for the next PCCAN meeting! It will be held from 2 - 4:00 at Hershey Medical Center in conference room A which is at the rear of the cafeteria. The agenda will soon be posted, meanwhile mark your calendar.

The Zebra Walk

2008-10-20T18:40:00.000-07:00

The Zebra Walk on October 4th at the Philadelphia Zoo in memory of Deb Kilmartin was a memorable event. Participants wore t-shirts donated by the Carcinoid Cancer Foundation and seeing Deb's family surrounded by a crowd in zebra t-shirts was inspiring. We were able to see Suzi, the zebra adopted by the DVCC, and take a picture with her, though she wasn't very cooperative. Check out photos from the event.

Thanks to Suzi Garber for all her time, expense, and effort in organizing this spectacular event!

PCCAN.net has technical difficulties

2008-08-14T07:15:00.000-07:00

You may have noticed that the PCCAN website is sorely outdated. We are having some technical difficulties which we hope to be resolved shortly.

Any PCCAN or carcinoid related questions can be directed to
Teresa at 717-576-5095 or CarcinoidSupport@juno.com.

PCCAN's Annual Picnic Resumes!

2008-07-10T19:43:00.000-07:00

We would be delighted if you would join us on Saturday, July 19th from 4 to 7pm as PCCAN’s annual picnic resumes!

Grilled chicken and beverages will be provided. You may bring a dish to share if you wish.

The picnic is the Linglestown/Harrisburg area and will be moved indoors if needed due to rain or heat.

Please contact Teresa to RSVP and for directions.
www. PCCAN.net
CarcinoidSupport@juno.com
717-576-5095

Can’t say it enough – THANK YOU!

2008-04-27T17:37:00.000-07:00

The conference in Harrisburg was a great success due to the help of many people and I’d like to acknowledge a few here:

Donna Gibson for being Kevin's inspiration.

The 101 participants; many who traveled far distances

Those who helped at the event: Kevin Gibson, the handsome Ed Lanza, Jeff & Tresa Lohr, Cindy Walker, Jim Weiveris

The speakers: Dr. Harold Harvey, Judy Lyter, Dr. Mathew Kulke, Dr. Tom O’Dorisio, Dr. James Pingpank

The sponsors and their representatives: InterScience Institute – Mia, Delcath Systems – Jason, Novartis Pharmaceuticals – Jeff

Carcinoid Cancer Foundation for providing DVD’s of the Norfolk Conference.

Kevin Gibson, David Botera & Ric Medina who raised funds for the event through Hope in Handball.

And last but surely not least, Bob & Maryann Wahmann of CCAN whose roles & duties included: sponsor, organizer, planner, printer, problem solver, travel agent, scheduler, meal planner, registrant, purchasing agent, contract negotiator, program designer, goodies collector, bag stuffer, grant writer, grant re-writer… the list goes on and on!

From all of us who attended and benefited from the event we send a sincere thank you.

Teresa

Sat. April, 26, Harrisburg Carcinoid Conference: Directions & More

2008-04-13T20:45:00.000-07:00

Haven't registered yet? There's still a few spots open so don't hesitate a second longer. Need a little convincing? Did you know that Harrisburg is an easy 2 hr. drive from Baltimore, Washington, D.C., and Philadelphia? From NYC you can make it in 3 hours (or 2 1/2 if you drive like my crazy brother-in-law). If you live in Pittsburgh or Syracuse, NY you can make it to Harrisburg in 4 hours. Don't like to drive? Bus and train information is below and there's always the HIA (Harrisburg International Airport).

PARKING INFORMATION, DIRECTIONS & TRAVEL OPTIONS
to Harrisburg for the Saturday, April 26th conference hosted by CCAN and PCCAN.

PARKING
Self-parking is available in the Walnut Street Garage and valet parking is provided by the hotel at the cost of $20. The cost of self-parking is included in the registration fee. Bring your parking ticket with you to be validated at the conference. Validation is not offered for valet parking. Limited metered street parking, with a limit of two to four hours, is available on Walnut, 4th, and 3rd Streets.

DIRECTIONS: to the Walnut Street/Hilton Harrisburg Parking Garage

From Philadelphia (PA Turnpike I76): Take Exit 247 (Harrisburg East). At toll plaza, continue straight on I283 North. Follow I283 North to I83 South. Take exit for I83 South. Continue on I83 to 2nd Street Exit (Exit 43 - Old Exit 23). Go down ramp to red light. Continue through red light onto 2nd Street. Continues at *.

From Pittsburgh (PA Turnpike I76): Take Exit 242 (Harrisburg West). At toll plaza, continue onto I83 North. Take I83 North to 2nd Street Exit (Exit 43 - Old Exit 23). Take exit ramp to red light. Continue through red light onto 2nd Street. Continues at *.

From Interstate 83 South (York/Baltimore/Washington DC): Take I83 North to 2nd Street Exit (Exit 43-Old Exit 23). Take exit ramp to red light. Continue through red light onto 2nd Street. *Follow 2nd Street to Market Street. Turn right immediately before the Hilton Hotel onto Market Street. After you turn onto Market Street, move into the far left lane. Make a left into the alley directly behind the Hilton. An entrance to the Walnut Street garage is on the left just prior to reaching Walnut Street. Take the elevator to the SA level (Strawberry Square Arcade). Exit the elevator and proceed straight through the double doors. Turn right and proceed to the Hilton.

From I81 (Scranton/Allentown/Carlisle): Take I-81 to Exit 66 - Front Street South (Old Exit 22). Proceed for 4 miles south on Front Street and turn left onto Market Street. Continues at ***.

From Routes11/15 and 322/22 (Williamsport/Sunbury/State College): If traveling on Routes 11-15, at intersection of 11-15 and Interstate Route 81, take 81 North across Susquehanna River. (If traveling on Routes 322-22, exit onto Interstate Route 81 south.) Take I-81 to Exit 66 - Front Street South (Old Exit 22). Proceed for 4 miles and turn left on to Market Street. ***Continue on Market moving to the far left lane. You will pass the Hilton Hotel on the corner of 2nd St. and Market Street. Make a left into the alley directly behind the Hilton. An entrance to the Walnut Street garage is on the left just prior to reaching Walnut Street.

AMTRAK provides convenient daily service from Lancaster, Paoli, and Philadelphia via its Keystone Service. The Harrisburg train station is three blocks from the Strawberry Square Office

GREYHOUND Trailways and several other private bus lines provide daily service from many smaller communities not serviced by Amtrak as well as the larger communities serviced by Amtrak. The Harrisburg bus station is three blocks from the Strawberry Square Office.

HARRISBURG INTERNATIONAL AIRPORT Drive time to the Hilton is 30 min. Taxi Service is approximately $15. Call the hotel (717-233-6000) for courtesy bus information.

Conference Countdown - 8 weeks!

2008-02-28T05:09:00.000-08:00

The Carciniod/NET conference in Harrisburg, PA is only 2 months away!

Please register early and if you are staying overnight reserve your room ASAP. We've already had to add rooms to the block we previously reserved and the hotel often is fully booked. Information about the conference is below and details and the agenda can be found at http://www.pccan.net;/ registration is at http://www.carcinoidawareness.org/.

April 26, Saturday, 9:00 am - 4:00 pm, Harrisburg, PA
DIAGNOSIS AND TREATMENT OF CARCINOID CANCER & NEUROENDOCRINE TUMORS: WHAT WE NEED TO KNOW,
Presented by the Carcinoid Cancer Awareness Network and PCCAN.

Featured speakers are carcinoid specialists Matthew Kulke, MD of Dana-Farber Cancer Institute, Boston, MA and Thomas O'Dorisio, MD of Iowa University Health Care, Iowa City; Judy Lyter; RN, MS, LPS a former oncology nurse, with Dr. Harold Harvey of Penn State Hershey Medical Center, Hershey, PA moderating.

Coffee Any One?

2008-02-28T05:02:00.000-08:00

This Sunday: March 2nd, 1:00 pm - 4:00** pm, meet us at St. Thomas Roasters in Linglestown (Harrisburg, PA area - near Exit 72 of Rt. 81). St. Thomas Roasters offers the opportunity to gather in a relaxed setting with others who share the challenge of living with Carcinoid Cancer.

Visit www.StThomasRoasters.com for directions or call 717.526.4171 and note that this is a different location from our prior meetings.

Please RSVP with PCCAN (CarcinoidSupport@juno.com) so the cafe can adequately staff for our visit.

(**Please note that we are meeting from 1 - 4, not earlier as some flyers incorrectly stated.)

2008 WINTER & SPRING EVENTS CALENDAR

2008-01-03T19:04:00.000-08:00

There is a lot of activity within the carcinoid community this year. For a "old timer" like me, having been diagnosed 10 years ago when there were only two carcinoid websites (Sunny Susan's and the Carcinoid Cancer Foundation), this is phenomenal! I hope you take advantage of some of these opportunities and remember that you are not alone!
Happy New Year!
Teresa

2008 Winter & Spring Calendar
PENNSYLVANIA AND REGIONAL EVENTS

Sunday, January 20th, 2:00pm – 4:00pm
The Delaware Valley Carcinoid & NET Connection Kick-off, Philadelphia, PA
The first PCCAN gathering of 2008 will be at this exciting event as we join with and support the carcinoid/NET communities in Philadelphia and the surrounding regions. Nancy Gardner, the guest speaker, will be of interest to all of us. Be sure to see the attachments and visit the new Philly web site for details- http://www.phillycarcinoid.org/ or call Suzi Garber at 610-779-2901.

Sunday, March 2nd, 1:00pm to 4:00pm
A Conversation & Coffee, Harrisburg, PA
Meet us at St. Thomas Roasters in West Hanover Township near Harrisburg. St. Thomas Roasters offers cold and warm beverages, a light menu and it's a great opportunity to gather in a relaxed setting with members of the Carcinoid/NET Community and to meet others who share the challenge of living with Carcinoid Cancer. Visit http://www.stthomasroasters.com/ for directions or call 717-526-4171.

Saturday, March 15th, 10:00am to 12:30 pm
The Familial Aspects of Carcinoid, Merrifield, VA
Capital Area Carcinoid Survivors (CACS) sponsor Dr. Stephen Wank, National Institute of Health. Contact CACS for more information: www.members.aol.com/cacsva .

Sunday, April 13th, 1:00 to 5:30 pm
The CCF 11th Annual Carcinoid/NET's Conference, New York
This event is for patients, caretakers and medical professionals. The topic is "Progress in Research and Treatment” with guest speakers Richard R.P. Warner M.D., Herbert Chen, M.D., Andrew S. Kennedy, M.D., and includes networking and survivor stories. Call 1-888-722-3132 to register or register on-line at http://www.carcinoid.org/ .

Saturday, April 26, 10:00am to 4:00pm
Carcinoid Cancer/NET Conference, Hershey, PA
This conference will feature Dr. Eugene Woltering, Dr. Matthew Kulke, and Dr. Harold Harvey. The conference is tentatively scheduled from 10 am – 4 pm. Please visit PCCAN at www.PCCAN.net for details regarding the agenda, time and location or call Teresa with at 717-576-5095.

PRESS RELEASE

2007-10-16T21:44:00.000-07:00

PA Carcinoid Cancer Advocacy Network
Teresa Lanza
Harrisburg, PA
717.567.5095
carcinoidsupport@juno.com

United States Handball Assoc.
David Botero
Harrisburg, PA
717.798.7128
dbotero@andculture.com

FOR IMMEDIATE RELEASE
16 October 2007

“Hope in Handball, Carcinoid Cancer, andCulture” Event Scheduled for Guinness World Record™ Attempt, Raise Awareness for Local Carcinoid Cancer Organization

Harrisburg, PA – The Harrisburg Mall, located on I-83 & Paxton Street, will host a ground-breaking event, by which a team of handball players will attempt to set a Guinness World Record™ for the longest handball match. The 24-hour handball marathon exhibition will begin on Friday, October 19th at 5:30 PM and conclude on Saturday the 20th. The event’s primary objective is to create awareness of carcinoid cancer and related neuroendocrine cancers, and proceeds will be used for carcinoid cancer education and awareness in the Midstate. The players are collaborating with Teresa Lanza of PCCAN, the PA Carcinoid Cancer Advocacy Network, which is an organization that seeks to support and educate patients & families in PA.

“Hope in Handball, Carcinoid Cancer, andCulture” is being held in memory of Donna Gibson, a carcinoid patient whose untimely passing inspired her family and friends to raise funds furthering Carcinoid Cancer education and awareness efforts in Pennsylvania. These funds will come in the forms of the benevolent financial sponsorships that were made possible by the corporate citizenship of local and national partners, including Brinjac Engineering, Commerce Bank, andCulture, and Comcast.

Passersby and spectators will be encouraged to make a tax-deductible donation; and for every $5-dollars donated, a person will be eligible to take part in the “Hope” raffle. Sponsors, partners, and friends have collaborated to donate a number of exciting gift items including an authentically-signed Stephon Marbury (from The New York Knicks) jersey, a signed Tiger Woods bobblehead collector series item, gift cards to local restaurants, and many other wonderful gift packages.

This is a sanctioned event, and will be monitored by accredited witnesses; thus adhering to Guinness World Record ™ guidelines and regulations. Play is continuous, and the players will be provided with allotted 5-minute breaks to be used for resting, nourishment, and general restroom use. Three players will be involved throughout this perpetual endeavor. From Harrisburg, Kevin Gibson, a Computer Specialist for the PA House of Representatives and an ordained minister, is playing in memory of his wife, Donna. David Botero, from Hershey, is a Business Development Manager at andCulture, an integrated marketing communications agency in downtown Harrisburg. And, Ricardo Medina, originally from Reading, is a student at Temple University in Philadelphia. Each has a profound respect and commitment to the game, and advocate its growth and development in Central PA.

Together, PCCAN and the players have partnered to give Carcinoid Cancer patients a voice, and are using the sport of handball as the messaging vehicle. They are also using this opportunity to continue to promote handball in a friendly, fun, healthy, and innovative manner. The Guinness World Record™ attempt will help elevate this platform, as well as generate leverage with The Harrisburg Mall’s significant traffic.

To learn more information about Carcinoid Cancer, the dynamics behind Handball; or to learn more about the event’s sponsors, raffle items, and agenda, please visit http://www.hopeinhandball.org/

NEW: Southwestern PA Support Group!

2007-09-22T20:12:00.000-07:00

A support group is forming in southwestern Pennsylvania!
Please contact Michael if you are interested in participating.
You can reach him through the PCCAN phone number ( 717-576-5095) or via email at michael@isletcellcancer.com.

NEW: LANCASTER SUPPORT GROUP!

2007-09-22T20:10:00.000-07:00

The first Lancaster Carcinoid/NET Support Group meeting will be held on Sunday, Nov. 16, 2007 from 2:00 to 4:00 pm at the Church of the Apostles; 1850 Marietta Ave., Lancaster.

If you have questions or are interested in assisting with the group please call Susan at 717-898-1732 or 717-824-1572 or email her at susan288@verizon.net.

SAVE THE DATE

2007-09-22T20:08:00.000-07:00

On May 3rd, 2008, PCCAN will host a Carcinoid Cancer/NET conference. Moderated by Dr. Harvey, our guest speakers are Dr. Eugene Woltering and Dr. David Kulke. This event is for patients and physicians!

Q & A with Dr. Harvey - Nov. 4, 2007

2007-09-22T19:57:00.000-07:00

QUESTION & ANSWER Session with Dr. Harold Harvey

DATE & TIME:
Sunday, November 4th, 2007
2:00—4:00pm

LOCATION:
Hershey Medical Center, Hershey, PA*
Cafeteria Dining Room A

SPEAKER:
Harold Harvey, M.D.
Professor of Medicine
Division of Hematology/Oncology
Penn State Hershey Medical Center

Please RSVP with PCCAN so we can plan for
adequate seating.

*Traffic patterns and parking areas have changed due to ongoing construction. Please allow additional travel time.

HOPE IN HANDBALL: Oct 19-20, 2007 (FUNDRAISER)

2007-09-22T19:45:00.000-07:00

Show your stripes and come to the Harrisburg Mall (located on I-83 & Paxton St.) and support the Hope in Handball, Cancer, andCulture benefit. This exhibition is a 24-hour handball marathon beginning Friday, Oct. 19th at 5:00 pm and ending October 20th as it raises awareness of Carcinoid Cancer and related neuroendocrine cancers and generates funds to support the educational endeavors of PCCAN.

This event is being held in memory of Donna Gibson, a carcinoid patient whose premature death in June inspired her family and friends to raise funds furthering Carcinoid Cancer education and awareness efforts in Pennsylvania.

Advocates will attempt to set a Guinness World Record ™, and there will be plenty of news coverage and observers. PCCAN will have a booth at this event and will need members to attend the booth, hand-out information and awareness merchandise to passers-by and chat with people who stop by. This is a great opportunity for some multi-generational bonding for those with children or grandchildren and PCCAN members are encouraged to invite friends and family to participate. There is a place for everyone at this ‘round-the-clock event!

Please contact PCCAN with any questions and join me for some fun while we create carcinoid awareness and raise funds for carcinoid education in the midstate.

Teresa

Conversation & Coffee: Sun, Aug 5th

2007-07-21T04:48:00.000-07:00

Meet us from 1 - 4:00 pm at the St. Thomas Roasters in West Hanover Township near Harrisburg, PA for the next PCCAN meeting. St. Thomas Roasters offers cold and warm beverages, a light menu, and indoor and outdoor seating. It's a great opportunity to gather in a relaxed setting with members of the Carcinoid/NET Cancer Community and to meet others who share the challenge of living with Carcinoid Cancer.

I hope you will join us for this event which is in place of our annual picnic due to my recent surgery.

Please RSVP for this event so that St. Thomas Roasters can adequately prepare for us.

Teresa

REVISED AGENDA FOR MAY 6TH

2007-05-05T19:10:00.000-07:00

Regrettably, Dr. Harvey will have to postpone his meeting with us until a later date. In his absence we will view and discuss a presentation by carcinoid specialists Dr. Richard Warner. This presentation is a thorough overview of the disease, including diagnostic techniques, symptoms, monitoring recommendations, treatment options and much more. Same time, same place - see you there!

Dr. Harvey to Speak on May 6th.

2007-04-21T21:43:00.000-07:00

What every patient should know about managing and monitoring carcinoid cancer and related neuroendocrine cancers - Dr. Harold Harvey, Penn State Hershey Medical Center.

Join us on Sunday, May 6th at 2:00 in cafeteria dining room A at Hershey Medical Center for a time of learning and sharing. Dr. Harold Harvey of Hershey Medical Center will be our featured speaker. Dr. Harvey's relaxed manner of relating to and interacting with his audience and ability to clearly explain complex issues has lead to repeated requests for his return to PCCAN. The discussion will focus on the basics of managing and monitoring carcinoid cancer. This is a valuable program for all carcinoid patients, especially those newly diagnosed, and provides an opportunity for patients to ask questions of and receive answers from a carcinoid knowledgeable physician.

To RSVP and for additional information contact Teresa at CarcinoidSupport@juno.com or call 717-576-5095.

CONVERSATION & COFFEE

2007-02-05T06:48:00.000-08:00

See information about our new event at PCCAN.net!

Interested in a CONVERSATION & COFFEE in your neck of the woods? It's a piece of cake! Contact PCCAN and we'll get you started.

Attorney to Speak at Feb. 4th Meeting

2007-01-21T20:06:00.000-08:00

Mitch Berger, an attorney in the Washington D.C. area, a carcinoid patient, and an active member of the Capital Area Carcinoid Survivors is our featured speaker at the Feb. 4th PCCAN meeting.

Mitch will share his personal journey with carcinoid and educate us about Social Security Disability and issues specific to Carcinoid Cancer patients. He will also update us on the status of legislative efforts to impact carcinoid research and public awareness. You are encouraged to bring specific questions related to S.S. Disability and can reference www.SocialSecurity.gov for forms and documents.

Please RSVP at CarcinoidSupport@juno.com or 717-576-5095. In case of inclement weather call PCCAN or check this site for cancellation notice.

The meeting is scheduled from 2 - 4 (giving most of us enough time to get home for the game) in dining room A/B which is to the rear of the cafeteria in the main building of Hershey Medical Center. For directions see PCCAN.net or contact PCCAN.

3rd Anniversary Celebration - Nov. 12, 2006

2006-10-02T06:41:00.000-07:00

The Pennsylvania Carcinoid Cancer Advocacy Network’s 3rd Anniversary Celebration will be held on Sunday, November 12, 2006, 2:00 – 4:00 pm at Penn State Hershey Medical Center in Dining Room C.

Empowering the Carcinoid Cancer Patient & Navigating the Medical Maze:
Jean Kozachuk, RN, BSN, OCN, Clinical Head Nurse at Penn State Hershey Medical Cancer Center, will provide insight into how to become your own advocate, how to maximize time with your physicians, and other tips to help you navigate the medical system.

The agenda also includes: PCCAN- past and future, highlights from the annual national carcinoid cancer conference, a special award presentation, and time for networking and refreshments.

Please RSVP for this meeting at CarcinoidSupport@juno.com or 717-576-5095.

Move Toward A Cure - 2006 Campaign

2006-10-02T06:21:00.000-07:00

Special Alert from the Caring for Carcinoid Foundation:

Unprecedented Opportunity to "Move Toward a Cure"
The carcinoid community has an unprecedented opportunity to change the course of carcinoid and related neuroendocrine tumor (NET) research.
Congress will soon vote on legislation that encourages the National Cancer Institute (NCI) to "move toward a cure" for carcinoid/NET. NCI is the world's largest funder of cancer research. It is the U.S. government's principal agency for cancer research and operated with a $5 billion budget in 2005.
The Caring for Carcinoid Foundation is the leading national non-profit dedicated to discovering a cure for carcinoid. Therefore, we are 100% committed to passing and implementing this Congressional legislation.
You have an opportunity to participate in this unprecedented opportunity in three ways--by spreading the word, by e-mailing your U.S. Senators and Representatives, and by updating the Carcinoid Scoreboard.

To find out more visit the Caring for Carcinoid Foundation website.

Dr. Peter Waybill to speak at PCCAN meeting

2006-09-10T18:46:00.000-07:00

What's a CE in the world of carcinoid? How about an RFA?

Join us on Sunday, September 17th beginning at 2:00 pm to learn about these abbreviations and treatments for metastatic carcinoid disease in the liver. The session will be led by Dr. Peter Waybill of Hershey Medical Center. Since the liver is a common place for metastatic carcinoid/NET tumors to appear, this is a topic that many carcinoid patients will need to consider. There will be a question and answer time and the opportunity to network with PCCAN members. The meeting will be held in dining room A, the conference room to the rear of the cafeteria at Hershey Medical Center.

Please RSVP for this meeting and contact PCCAN for directions or with any questions.

THANK YOU!

2006-05-22T15:01:00.000-07:00

We are most grateful to Dr. and Monica Warner for sharing their expertise with us on May 20th!

And, there are a lot of other folks who helped to make the event a success.
Thanks to Dr. Harvey and Wendy King for their help with pulling together the event and working magic with the technical equipment; to Hershey Medical Center for donating the room; to Novartis for sponsoring the event, including refreshments; to Jerry Zeidler for donating a photograph to raffle; to Jim, Sally & Lee , Maryann & Jerry, and Patty & Maureen for rolling up their sleeves and pitching in where needed; to Dr. Manni and Dr. Waybill and the 71 attendees who set aside time to learn more about carcinoid; to Monica and the Carcinoid Cancer Foundation and Jim Weiveris for supplying patient materials; to Monica, Jim, and Maryann Wahmann of CCAN for their endless support and encouragement; and to Ed for following my every wish and command.

Teresa

P.S. Check out these photos by Monica Warner! I'll post them on pccan.net soon.

Carcinoid Cancer Education Forum: Saturday, May 20, 2006, Hershey, PA

2006-04-06T21:44:00.000-07:00

The Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN) is pleased to announce a Carcinoid Cancer Education Forum on Saturday, May 20th, from 1:00 – 4:00 pm at Hershey Medical Center in Hershey, PA.

The forum will feature a presentation by Dr. Richard Warner on the Current Treatment and Management of Carcinoid Cancer and a presentation by Monica Warner, M.S., R.D., C.D.N. regarding Nutrition and the Carcinoid Cancer Patient, followed by a question and answer session.

Please go to our web site for location details and registration information- PCCAN.net (http://pccan.net/index_files/Page756.htm ).
This event is free of charge but registration is required.

Teresa Lanza
PCCAN.net
CarcinoidSupport@juno.com
717-576-5095

New from the Carcinoid Cancer Foundation

2006-03-05T11:47:00.000-08:00

NET NEWS (Winter-Spring 2006, Volume 1, Issue 1)

Many people may not be aware of all the various activities in which the Carcinoid Cancer Foundation is involved. This first newsletter enumerates CCF's role in patient advocacy, research, and dissemination of medical information and gives a summary of accomplishments in the year 2005 and plans for the year 2006.

You can access this newsletter either from the Newsworthy site or directly.

Monica Warner MS, RD CDN
Research Coordinator and Director of Development
Carcinoid Cancer Foundation, Inc.

The Role of Sandostatin in Treating Carcinoid Cancer

2006-03-03T13:27:00.000-08:00

The role of Sandostain in treating Carcinoid Cancer and related Neuroendocrine Cancers will be the focus of the March 12th meeting of PCCAN. Wendy King of Novartis, the maker of Sandostatin, is our guest speaker. The meeting will be held from 2 pm to 4 pm, in dining room A at Hershey Medical Center.

Please RSVP for the meeting with PCCAN at CarcinoidSupport@juno.com or at 717-576-5095.

Dr. Harvey to Speak at PCCAN meeting

2006-01-14T16:06:00.000-08:00

Dr. Harold Harvey of Hershey Medical Center is the guest speaker at the first PCCAN meeting of 2006. If you have previously heard Dr. Harvey speak you understand why he has the reputation of being a good speaker, doctor, and educator. As a physician, Dr. Harvey's knowledge of carcinoid is unmatched in this region and as a result the number of carcinoid patients traveling to Hershey to see him continues to grow.

Our meeting is Sunday, January 22, from 2 - 4 in dining room A or D (located in the rear of the cafeteria) at Hershey Medical Center. See the post to the right for additional 2006 meeting dates.

Please RSVP for this meeting via e-mail or phone so we can adequately prepare for the meeting.

Anniversary Celebration

2005-11-09T21:00:00.000-08:00

Please join us on Sunday, November 20th from 2 to 4 pm at Hershey Medical Center (dining room A/D) for the 2nd Anniversary Celebration of the Pennsylvania Carcinoid Cancer Advocacy Network. This past year, as the year before, we have shared joy and we have shared sorrow. Our Anniversary Celebration will acknowledge our past and the experiences that guide us as we look toward the future.

Our guest speaker comes to us from the Caring for Carcinoid Foundation which is working to find a cure for Carcinoid Cancer. A cure for Carcinoid?! Perhaps you are like me and assumed that there would never be funds or even a dim interest directed toward finding a cure for an orphan disease such as carcinoid. If you are of the same mindset, come prepared to be inspired and refreshed as you gain a vision of hope for a cure.

As always, we will have some time for networking and sharing. Please invite those in your support network who may not usually attend a PCCAN meeting but would enjoy our celebration.

Please RSVP as early as possible so we know how many people to expect and don’t hesitate to contact me for more information.

Hope to see you!

Teresa Lanza
717-576-5095
PCCAN.net
CarcinoidSupport@juno.com

Continuing Carcinoid Education

2005-09-27T10:58:00.000-07:00

You can now watch video presentations from the 2004 National Carcinoid Conference in New Orleans, Louisiana. Don't miss the opportunity to learn from world-renowned carcinoid experts.

This conference represents the cutting edge of medical information dispersal. Getting life saving information to patients with this exceedingly rare disease allows the patient to educate their local doctors rather than the usual paradigm in which physicians are the ones with the knowledge.- Dr. Eugene Woltering of LSUHSC

Special PCCAN Meeting: Sunday, Oct. 9th

2005-09-16T16:46:00.000-07:00

You are invited to attend a special PCCAN meeting scheduled on Sunday, October 9th, 2 - 4:00 pm, at Hershey Medical Center in dining rooms C & D (this is across the cafeteria from our usual location). This will be a time to meet new members, tell our stories, and share information. No speaker is scheduled.

For those unable to attend the national Carcinoid/NET conference in September, we hope to have information and material from the conference for you.

The next regularly scheduled PCCAN meeting will be Sunday, November 20th.

PLEASE RSVP by Oct. 2nd at CarcinoidSupport@juno.com or
717-576-5095.

September 2005 Meeting Cancelled

2005-09-02T13:45:00.000-07:00

The regularly scheduled September PCCAN meeting has been cancelled to accommodate those traveling to Philadelphia for the national Carcinoid/NET conference on Sept. 22 - 24th.

The conference is held in a different location every year, with the 2006 conference scheduled for the Pacific Northwest. So for those of you in the Northeast, if you don't like to travel this is your year! Register NOW!

Terri Davis's Carcinoid Cancer Awareness Campaign

2005-07-24T14:35:00.000-07:00

Reading the Metro NY Carcinoid Support Group Newsletter is a great way to keep abreast of the latest in the carcinoid community. In the June newsletter the innovative awareness activities of Terri Davis of Philadelphia were highlighted. Check out the story by going to the Metro NY group's website, you will find the article under NEWSLETTERS, June 2005, page 3. Hats off Terri for her carcinoid cancer awareness and fundraising efforts!

PCCAN Picnic - July 17th

2005-07-07T18:40:00.000-07:00

Our July meeting, on Sunday the 17th at 2:00, is a purely social event, intended to give us the time to chat with others that we never seem to quite get enough of. The location is NOT at the Hershey Medical Center but is nearby in Harrisburg and is at an indoor/outdoor facility as weather permits.

You are required to RSVP for this event and when you do so you will receive the directions and other details.

Hope you can join us!

June Carcinoid Awareness Effort

2005-05-31T02:58:00.000-07:00

This month our carcinoid awareness effort is of a more personal nature. I am encouraging all carcinoid cancer patients to obtain a medical alert pendant to wear in case of an emergency.

Deciding what information to include can be challenging but you may want to include your diagnosis, a statement regarding sensitivity to epinephrine (which can cause carcinoid crisis), and other information specific to your situation. For more ideas on what to include and some high tech options see the FAQ's section, under the Carcinoid Cancer heading at Larry Chinnery's web site.

While you are at it, send a copy of the information you are including on your medical alert pendant to all the medical related practices you are involved with (dentist, allergist, gynecologist, therapist, ophthalmologist, etc.) for inclusion in your file.

With speaker's support, group fighting rare cancer gets May as their own

2005-05-04T01:01:00.000-07:00

Capitolwire: With speaker's support, group fighting rare cancer gets May as their own.

By Mark Shade, Capitolwire

HARRISBURG (May 2) - It wasn't the television lights that made Loren Sweigard blush. It wasn't nerves. And it wasn't the presence of House Speaker John Perzel.

What made the Lewisburg man's neck, face and head go from pinkish-white to cherry red was a rare form of cancer lurking inside his body, threatening to kill him.

Most cancers don't show themselves in on-again, off-again living color, but carcinoid is the exception to that rule - and it's also the problem.

However, Sweigard didn't drive 75 minutes from his home in Union County to show what his body can do with carcinoid like a freak at a carnival. He did it to join the call for doctors to do a better job caring for people who share the seemingly benign problems that don't go away with traditional treatment.

The newly formed Pennsylvania Carcinoid Cancer Advocacy Network organized the rally and convinced Perzel, one of the state's most powerful Republicans, to pen a resolution making May "Carcinoid Awareness Month" in Pennsylvania.

"We are here on this historic day because we don't want the next person diagnosed with carcinoid cancer to experience the same struggles," said Teresa Lanza, head of PCCAN and a carcinoid survivor herself.

Lanza and other victims of carcinoid are hoping the awareness campaign will arm people with knowledge of the disease's symptoms, which also include diarrhea, wheezing and stomach cramps. They're also hoping doctors take note because one of the biggest obstacles to getting a quick carcinoid diagnosis is the fact that many doctors just treat the symptoms of the disease.

Harold Harvey is not one of those doctors, Lanza is quick to say. He's a Penn State Hershey Medical Center physician the Harrisburg woman considers "a champion of our cause."

Harvey has helped Lanza stay ahead of her fight with the disease and said many more medics could do the same thing if they tried.

"I've learned from my patients. I've learned from Teresa Lanza," Dr. Harvey said at the Capitol rally. "Knowledge and awareness empower patients and empower physicians to do better."

Leroy Petersheim of East Earl, Lancaster County, learned about the disease the hard way when his wife succumbed to carcinoid cancer a year ago.

Mrs. Petersheim's diagnosis came 18 months before her death. But by then, the disease had entered its fourth stage of growth and was invading her bones and liver.

One of the symptoms Petersheim's doctors treated was wheezing. At first, he said, they thought she was having bronchial problems. Then they thought it was allergies.

"So, we went to a specialist and took our carpets out because they thought little mites were getting into the house," he said.

The symptoms persisted for four or five years until a liver biopsy finally came up with the diagnosis. "But by then the only thing they could do was palliative care," Petersheim said.

Petersheim said he was "probably born too soon," but said he wanted to do what he could to help the cause. He and Lanza are hoping people will listen.

For more information about Lanza's efforts, see the Capitolwire story published last November.

Copyright 2004 capitolwire.com

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If you liked this story, sign up for a trial subscription. http://www.capitolwire.com For more information on capitolwire.com, write to info@capitolwire.com or call us at 717.986.0225 (toll-free at 866.894.0677).

Carcinoid Cancer Awareness Month in Pennsylvania

2005-05-04T00:46:00.000-07:00

On May Second, House Resolution 269, as introduced by Speaker of the House John Perzel, designated May 2005 as Carcinoid Cancer Awareness Month in Pennsylvania.

Thank you to the members of our group who suspended their daily activities on May 2nd to attend the rally at the capitol announcing Carcinoid Cancer Awareness Month. We were honored to have Dr. Harold Harvey and Dr. Darrell Kirch, both of Hershey Medical Center, and Speaker John Perzel speak at the rally. Dr. Harvey continues to prove that he is a strong advocate of carcinoid cancer patients in Pennsylvania.

We were also honored to hear from our group members Loren Sweigard and Gloria Smith who spoke of their journey with carcinoid and LeRoy Petershiem who told of his wife Betty’s battle with carcinoid that lead to her death in 2004. Our group members were effective in portraying the importance of bringing early diagnosis, appropriately aggressive treatment, and better monitoring of carcinoid cancer.

Carcinoid Cancer Awareness Activities

2005-05-04T00:37:00.000-07:00

While the rally was held on May 2nd, all of May is designated as Carcinoid Cancer Awareness Month. If you were unable to participate on Monday there are still opportunities for you to honor the spirit of this effort. Here are some suggestions:

1) Complete the APRIL AWARENESS PROJECT of sending PCCAN and carcinoid information to your physicians. See me or the e-mail of March 31 for details.

2) Register to attend the National Carcinoid Cancer/NET Conference in Philadelphia, September 22-24. Rooms at the conference location are limited so make your reservations soon.

3) Attend our regularly scheduled meeting on May 15th at 2:00 at Hershey Medical Center. Our speaker is Judy Lyter, a nurse counselor who will be speaking about the emotional aspect of living with a chronic illness.

4) Write a letter to the editor of your local paper about Carcinoid Cancer Awareness Month and the importance of early diagnosis, appropriately aggressive treatment, and better monitoring.

5) Purchase the following awareness merchandise that will be available at our next meeting: carcinoid lapel pin ($3), carcinoid bracelet ($2), carcinoid car magnet ($3). The funds collected will go toward the expenses of PCCAN.

6) Revisited the Carcinoid Cancer Foundation to continue your own carcinoid cancer awareness education.

Opening Remarks at Carcinoid Awareness Rally

2005-05-04T00:36:00.000-07:00

May 2, 2005
Harrisburg, Pennsylvania

Good morning, my name is Teresa Lanza. I am the founder of the Pennsyvlania Carcinoid Cancer Advocacy Network and I welcome you to this historic location – the beautiful Capitol of the Commonwealth of Pennsylvania. It is fitting to be in this historic location because today is an historic day.

With the assistance of our friends Speaker John Perzel & Dr. Harold Harvey, Pennsylvania joins a national movement to bring awareness to carcinoid cancer with the creation of PA’s first Carcinoid Cancer Awareness Month.
Carcinoid Cancer Awareness is a life and death issue for members of Pennsylvania Carcinoid Cancer Advocacy Network, known as PCCAN. For those of us diagnosed with carcinoid cancer and other types of neuroendocrine cancers, it is an issue we are passionate about.

Because we, along with our families and friends, have experienced first hand the difficulty that comes with delayed diagnosis or misdiagnosis, the frustration of trying to find appropriately aggressive treatment, and the challenge to be adequately monitored.

We struggle with these things because carcinoid cancer is not common. We struggle with these things because the symptoms of carcinoid cancer often resemble other diseases. And we struggle with these things because many of the advances made in the past decade in diagnosing and treating carcinoid cancer have yet to become common practice.

We, members of PCCAN, are here on this historic day along with our friends and family who support us, because we don’t want the next person diagnosed with carcinoid cancer to experience the same struggles.

We are here today because we want fewer families to experience the needless suffering of a family member and the separation from a loved one due to a premature death from carcinoid.

We are here today because carcinoid cancer can be and should be something we live with NOT something we die from.
We are here because we want the next generation of carcinoid cancer patients to have an easier road with earlier diagnosis, appropriately aggressive treatment and better monitoring.

How can achieve this goal? By spreading our message.
And to the medical community our message is a simple one: You Must Suspect It To Detect It. Take a look at the current body of knowledge about carcinoid, reeducate yourselves on the symptoms, and learn about the new diagnostic, treatment, and monitoring options.

And to those who have been diagnosed with carcinoid cancer our message is this: Consult with a carcinoid specialist, become your own carcinoid expert, and seek out as much information as possible about the treatment and monitoring options. Join your local carcinoid support group and exhaust every resource available to you.

Letter to the Editor

2005-04-22T13:29:00.000-07:00

Join in our efforts to promote Carcinoid Cancer awareness and write to your local paper. Contact me for some tips and let me know if you are published so I can post it here. The following letter to the editor (with the exception of the first paragraph that was cut by the editor) was published on April 19, 2005 in the Harrisburg Patriot-News.

"Obscure" is the term Chris Torres (If It's Tuesday, 2/12/05) might use to describe carcinoid cancer, and he would be accurate. For that reason the Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN) is working with Dr. Harold A. Harvey of Hershey Medical Center and Rep. John Perzel, to promote Carcinoid Awareness Month in May.
Carcinoid Cancer is rare largely because it is under diagnosed. Carcinoid is a relatively slow-growing neuroendocrine cancer that is often misdiagnosed because its symptoms (flushing, wheezing, diarrhea, or abdominal pain) mimic other conditions (menopause, rosacea, irritable bowel syndrome, Crohns disease, reflux, or asthma).

To be cured it must be caught early and treated aggressively. Sadly, the medical community is often unaware of the major advances of the past decade in diagnosing and treating carcinoid cancer.

About 5,000 carcinoid tumors are diagnosed each year according to the Carcinoid Cancer Foundation. Dr. Irvine Modlin of Yale Institute of Medicine believes 90%
of carcinoid tumors are undiagnosed! (Dallas Morning News, March 21, 2005)

Is carcinoid cancer obscure? Maybe. But it is not as rare as many are led to believe.
PCCAN wants the next generation of carcinoid cancer patients to have an easier road with earlier diagnosis, appropriate treatment and better monitoring. We want fewer families to experience the suffering of family members and the separation from a loved one due to a premature death from carcinoid cancer.

Many cases are detected with simple blood and urine tests. Go to http://www.carcinoid.org/ for more information and contact your local support group http://www.pccan.net/ for guidance.

Teresa Lanza
Harrisburg, PA

Rep. John Perzel & Dr. Harold A. Harvey to Speak at Rally

2005-04-22T13:26:00.000-07:00

This is a media advisory that was released today. Contact me about publishing this in your local paper.

Perzel to Speak at Rally to Promote Carcinoid Cancer Awareness Month in Pennsylvania

On May 2, 2005 at 10:00 a.m. in the Capitol Rotunda, Speaker of the House John M. Perzel and Dr. Harold A. Harvey of Penn State Milton S. Hershey Medical Center will join the Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN) in marking Pennsylvania's first Carcinoid Cancer Awareness Month.

Carcinoid is a relatively slow-growing neuroendocrine cancer that is often misdiagnosed and under diagnosed because its symptoms (flushing, wheezing, diarrhea, or abdominal pain) mimic other conditions (menopause, rosacea, irritable bowel syndrome, Crohn’s disease, reflux, or asthma).

To be cured it must be caught early and treated aggressively. Sadly, the medical community is often unaware of the major advances of the past decade in diagnosing and treating Carcinoid Cancer. For this reason PCCAN is working to promote earlier diagnosis, appropriate treatment and better monitoring of Carcinoid Cancer.

Contact Teresa Lanza of PCCAN for more information: phone 717-576-5095 or email CarcinoidSupport@juno.com.

Caregiver Support

2005-04-13T13:02:00.000-07:00

There is now an on-line support group for those providing care or support for carcinoid cancer survivors. To subscribe go to carcinoidcaregivers-subscribe@yahoogroups.com.

For additional caregiver supports check out the information provided by NAAPNET.

The Yellow Corvette Story

2005-04-13T12:34:00.000-07:00

This piece is posted with permission from carcinoid champion extraordinaire Eugene A. Woltering MD, FACS, of Louisiana State University Medical Center, New Orleans, LA.

A man walks into the local Chevy dealer with $60,000 in his pocket (in cash). He is strolling around the lot when a nice old guy walks up to him and asks him what he would like to buy. The potential buyer says that all of his life he wanted a new yellow Corvette. HE TELLS THE DEALER THAT HE HAS $60,000 IN HIS POCKET AND IS READY TO BUY THE NEW CORVETTE TODAY.

The old guy says that he will sell him a red, blue, green, silver, black, or gold corvette but that he will not sell him a yellow corvette--BECAUSE HE DOESN'T HAVE ONE IN STOCK AND WON'T ORDER ANYONE A NEW YELLOW CORVETTE--EVEN IF THEY HAVE 60K IN THEIR POCKET.

What should the customer do? The answer is obvious in this case--- he should go to another Chevy dealer.

What is not obvious is the moral of this story:

If you are being treated by a doctor who is not knowledgeable about this disease (and doesn't want to get educated on the disease) or will not work with you and a carcinoid expert to get you the best care available--YOU NEED A NEW DOCTOR.

MEDICINE IS A LIFE SAVING ART BUT OOOOOH TOO MANY DOCS LOOK AT IT AS A WAY TO MAKE A LIVING AND DON'T LOOK AT THE PATIENT'S NEEDS ---"JUST WHAT THEY HAVE ON THE LOT"---

IF YOU HAVE A DOC WHO WILL WORK WITH YOU-- REFER ALL OF YOUR LOCAL COMMUNITY NOIDS TO HIM --PRONTO--HE IS A KEEPER. BUT IF YOUR DOC GIVES YOU THE "ATTITUDE"--YOU NEED A NEW DOC-PERIOD—END OF DISCUSSION--YOU ARE FAR MORE VALUABLE THAN ANY CAR.

NOW YOU HAVE HEARD THE YELLOW CORVETTE STORY

Jim Turner's Story

2005-03-27T12:53:00.000-08:00

Jim Turner's story illustrates the importance of monitoring carcinoid after the removal of tumors, the damage untreated carcinoid tumors can cause, and the benefits of taking charge of your medical care. Perhaps most importantly, Jim reminds us that we can live an active and full life while living with carcinoid.

What's in a Name?

2005-03-23T14:39:00.000-08:00

The Central Pennsylvania Carcinoid Support Group has changed its name to Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN). Credit goes to group member Kara for creating a name that acknowledges our group's broader mission to support AND educate AND promote awareness.

Is carcinoid cancer rare?

2005-03-21T18:04:00.000-08:00

Dr. Irvin M. Modlin, professor of surgery at Yale University School of Medicine, as quoted in a story in the Dallas Morning News, March 21, 2005.

"Something is only rare because people can't diagnose it."

Shirley Jelinek's Story

2005-03-21T17:53:00.000-08:00

Carcinoid cancer presents differently depending on the location of the primary tumor and the production of the tumors, requiring individualized treatment plans that fit both the disease and the person. Shirley, whom I have had the honor of meeting, has chosen to follow a very conservative, wait and see approach.

Other options that many of the carcinoid experts might recommend are 1) removal of tumors while they are small to prevent interference with other organs and to reduce tumor production that can lead to damage (including carcinoid heart disease), and 2) use of Sandostatin to reduce tumor production and deter growth. An even more aggressive approach would be systemic chemotherapy.

The best chance, and arguably the only chance, to be cured of this disease is to catch it early, while it is small, and remove it before it spreads.

Jadon White's Story

2005-03-21T17:43:00.000-08:00

This news story highlights the frustrations of dealing with carcinoid and the need to be your own advocate by becoming your own carcinoid expert. The story appeared in The Dallas Morning News and is part of series about the healthcare system in Dallas.

Carcinoid tumors are extremely rare. Only about 5,000 are diagnosed each year, and those tend to be in women in their 50s or 60s. Young men get them so rarely that a Parkland doctor called Jadon "an unusual case among unusual cases." Why someone develops a carcinoid lung tumor is a mystery. Smoking and other environmental hazards have been ruled out as causes.

Further complicating this mystery, carcinoid tumors are not even considered cancer by most doctors, said Dr. Irvin M. Modlin, one of the country's top carcinoid experts. The tumors grow much more slowly than cancerous ones. Yet carcinoids can't be considered benign growths because they can spread from one organ to another, the textbook definition of cancer.

Dr. Modlin, a professor of surgery at Yale University's School of Medicine, has studied carcinoid tumors for 20 years and believes that many physicians don't understand the potential of these tumors to metastasize, or spread.

Living with Carcinoid Cancer: Hope for the Future

2005-03-10T18:27:00.000-08:00

Date: Sunday, April 10, 2005
Time: 2:00 – 5:30 p.m.
Place: Mount Sinai Medical Center, NY, NY

The METRO NY CARCINOID SUPPORT GROUP is hosting this event. The lecture titled "Current Treatment of Carcinoid and Neuroendocrine Tumors: The Dana-Farber Experience 2005" will be presented by Matthew H. Kulke, M.D., Assistant Professor of Medicine, Harvard Medical School, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA

RSVP by April 4, 2005. Go to the Metro New York Support Group web site for details and to register.

Carcinoid Cancer Support Group - Central PA

2005-03-08T18:20:00.000-08:00

I am pleased to announce that Dr. Harold Harvey of Hershey Medical Center will be our guest speaker at the Sunday, March 20th meeting. The meeting is held from 2 – 4, at Hershey Medical Center, Hershey, PA, in dining room A at the rear of the cafeteria. If you plan to attend please RSVP at CarcinoidSupport@juno.com
so that we have the appropriate amount of materials available.

The Central Pennsylvania Carcinoid Support Group provides a forum for those living with carcinoid cancer, as well as their family and friends, to learn from others’ experiences and to share their own. It also seeks to promote awareness of the need for earlier diagnosis, appropriate treatment, and better monitoring of carcinoid cancer.