My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Friday, April 9, 2010

Cool Things!

Last night I attended an event for the Northwest Indiana Society of Innovators. I was nominated and accepted for membership the past two years by one of my board members, so I get to be part of that elite group of people. Last night was their first Pride and Pedestal event.

The Pride and Pedestal event offered presentations by ten selected members in a five county area; it was amazing. One invented a digital video camera for use in medical and biological research that is now used by Harvard and John Hopkins and many renowned facilities nationally and internationally. Another man, now a multimillionaire, invented a solar powered attic fan. Two physicians were there, they were honored for starting a three hospital program that offers same-day mammogram and breast biopsy results (I thanked them on behalf of cancer patients everywhere who are immobilized with anxiety while awaiting test results) I told them of our own "scanxiety". I asked if they would someday strive to offer same-day CT results? They actually are hoping to offer that down the road.

The coolest thing was that I was asked to be one of the 10 presenters next year for my work with appendix cancer patients. What is great about that is that it will help more people become aware of appendix cancer and treatments now available through specialists. The public and the medical community need to know more about our disease so that patients can be properly treated when they are initially diagnosed. I talk to so many who finally see specialists familiar with our disease only after multiple surgeries and prolonged treatment, and then only when their disease has recurred. I talk to many who are initially misdiagnosed (one woman was treated for 5 years for ovarian cancer before she was correctly diagnosed with appendix cancer). I think public awareness is something we really need. Maybe I can help that happen!


Karen Ebert said...

Congratulations on the honor! I realize how incredibly lucky I am in some respects - I do get same day CT results, every single time. And I get to view them on my doctor's laptop. I don't know if Marshfield Clinic is that advanced or what. However, my insurance company has denied covering Avastin, because they say no studies prove it is effective against appendix cancer. Because they can't find the word "appendix" in any of the studies. And don't seem to realize that appendix cancer falls into the colorectal cancer category. Please educate away!

Carolyn Langlie-Lesnik RN BSN said...

Hi Karen,

I'm so glad you get same-day CT results...I communicate with so many who are immobilized by anxiety for up to a week waiting for those results...for me it's always at least two days (and I go to medical records and get them before my MD visit).

Frustrating about the Avastin! I agree, so much education is needed. I hope to one day raise funds for research, but right now I see education...of patients, physicians and insurance companies as priority.

I ALWAYS with you the best!