June Carcinoid Awareness Effort

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

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.

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Carcinoid Cancer Awareness Month in Pennsylvania

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

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

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.