Barb Ingalsbe, Paynesville, was one of five people representing Minnesota before the President's Cancer Panel for the National Cancer Institute. The panel met at a regional meeting Oct. 12 and 13 at Billings, Mont.Ingalsbe was the only cancer patient among the Minnesota delegation. The others represented organizations such as the Minnesota Cancer Society and the Minnesota Department of Health.
States represented at the regional meeting were North Dakota, South Dakota, Wisconsin, Wyoming, Idaho, Minnesota, and Montana.
Ingalsbe felt honored to be asked. The panel obtained her name from the Dana Farber Cancer Institute in Boston where she went for a second opinion on a rare form of cancer. Ingalsbe was diagnosed with stage three-b soft tissue sarcoma in her right arm in August of 1998. Surgeons removed a tumor the size of a tennis ball when they operated.
The meeting
The theme of the meeting was "Improving Cancer Care for All: Real People - Real Problems. Why don't all Americans get the best available Cancer Care?"
According to Ingalsbe, the goal of the panel is to identify problems in the delivery of cancer care. There are many problems in how people obtain cancer care. Because of the vast distance to medical facilities, the care isn't consistent across the country.
The President's Cancer Panel has taken its meetings on the road to find out why people are not receiving the same care. Among the questions the panel would like to see answered is what must be done to ensure that research discoveries reach routine practices.
Besides their regional meetings, the panel hosted town hall public meetings to receive input from local communities. Cancer survivors and caregivers were invited to voice their concerns and ideas. One concern was the distance many people need to travel to receive health care. In North and South Dakota, and Montana, the distance patients need to travel to obtain health care makes it prohibitive.
Ingalsbe's presentation
The President's Cancer Panel sent Ingalsbe questions to assist her in preparing remarks for the panel.
Among the suggestions were what circumstances caused her to seek cancer related information; what programs, if any, were helpful; what hardships did she encounter; were there barriers to her receiving quality cancer care; and were any support networks available.
Her speech covered four points. The first point dealt with the need for doctors to be more knowledgeable about rare cancers such as hers. Only one in every 100 lumps are malignant, but the one malignant lump is often deadly, she added.
The second point dealt with access to information. "Nobody thinks they will ever be told they have a life threatening cancer," said Ingalsbe whose family had no history of cancer whatsoever. "What do you do next?" she asked.
Ingalsbe went onto the Internet and found a lot of information. She feels Internet access needs to be made available to everybody through hospitals as well as libraries. "Every patient does not have access to a computer or the means or knowledge of where to start looking," she said. "One also has to be careful about Internet misinformation as well," she cautioned.
Two other good sources of information Ingalsbe found were a hot line on cancer (1-800-4-Cancer) and the website http://cancernet.nci.nih.gov.
"If you don't know the information exists, a person is losing out on valuable research," Ingalsbe said.
"People seeking medical help need to know right away what resources are available," she added.
Gretchen Vork, librarian at the public library, helped Ingalsbe find information at the Paynesville Public Library. "It is wonderful to have a librarian there to help," Ingalsbe said.
"If you need a book, fill out a form and the Great River Regional Library will find it for you. The library has hundreds of books on cancer, healing, and spirituality," she added.
If they don't have it in stock, they will buy it if deemed vital to their medical reference section, Ingalsbe said.
The third point she made in her speech dealt with looking at cancer as a chronic disease and not necessarily a fatal disease.
"The medical profession needs to be more aware of how the mind and spirit interact with the body in coping with cancer," Ingalsbe said.
"Cancer is an emotional experience of a lifetime. It affects the person and family," she said. "Health care providers need to address the emotional needs as well as the physical needs."
Her fourth point expressed how deeply she appreciated the fact the panel included cancer patients in their conference. There were eight cancer patients who spoke before the panel. "Typically, when the health care profession has a meeting, it is just nurses, doctors, or research scientists attending," she said.
The President's Cancer Panel consists of five doctors. They all listened intently, Ingalsbe said. "It was obvious they were deeply concerned about what we had to say," she added.
This year the panel wanted to learn more about cancer and the care patients receive. They will report their findings to the new president in January.
Ingalsbe's reaction
"The stories from other cancer patients were very moving and inspiring. They talked about the hurdles they had to overcome," she said.
"The doctors who spoke talked about how frustrating and time consuming the paper work is, and how it takes time away from their patients," Ingalsbe said.
Ingalsbe is now part of a support group she found on the Internet. While a local support group doesn't exist for rare cancers, the Association of Cancer Online Resources sponsors several support groups over the Internet through e-mails. "It took me six months to find a support group for soft tissue sarcoma patients," she said.
"It would really be helpful if doctors or nurses could give a list of resources to cancer patients when they are diagnosed," Ingalsbe said.
According to Ingalsbe, patients also need to do their homework. There are changes in medical research all the time. Doctors are working for the best possible outcome for each cancer patient, she added.