Article on Rare Cancer Generates Enthusiastic Response


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Karen Tuttle and her son, Michael, in a photo shortly before his death in 2014 following a diagnosis of epithelioid hemangioedema (EHE).

The article “Shining a Spotlight on Epithelioid Hemangioendothelioma,” written by Jane Gutkovich and published in the April 10, 2015, issue of The ASCO Post, generated an enthusiastic response from the patient and advocate community of individuals with this rare cancer. Here, we are pleased to share a snapshot of some of the letters we received from readers, including the author herself.

A Storm of Hope

Thank you so, so much for giving me space in The ASCO Post. It is hard to overestimate the importance of this publication, not only because many physicians will become aware of our group of patients with epithelioid hemangioendothelioma (EHE) and their families, and the work we are doing on this rare cancer, but also because it provided a huge boost in morale to hundreds of patients living with EHE and their families. These are individuals who have gotten used to the fact that EHE is on a far-away periphery when it comes to professional knowledge and attention.

As such, having my article published within The ASCO Post, a prestigious oncology publication that is well read by health professionals, has resulted in a storm of hope and motivation among our support group for EHE patients and their families. ■

Jane Gutkovich

jgutkovich@gmail.com

 

Rarity of Disease Means Lack of Information

When I was diagnosed with EHE in December, my world fell apart. The path has been even more difficult due to the rarity of the disease and lack of information available. Therefore, I am extremely grateful that [The ASCO Post] published Ms. Gutkovich’s paper on this rare cancer.

I am sure that such a comprehensive article will give the relevant information to the increasing number of people diagnosed. ■

Beverley Williams

 

Fortunately, I Am ‘Stable’

I would like to take this opportunity to thank you for the wonderful article you published on EHE. I am a patient with EHE and I find it very difficult to understand how there can be no clear path for doctors to take if my diagnosis changes.

Fortunately, my condition is currently “stable,” but of course with this rare cancer anything is possible and a change in my condition will mean a scramble for the next form of therapy. Thank you for bringing awareness to this disease. ■

Ingrid E. Coddington

Concerted Effort Needed

As the mother of a patient diagnosed with the rare EHE cancer in 1998 at the age of 20, I want to thank you for publishing “Shining a Spotlight on Epithelioid Hemangioendothelioma,” by Jane ­Gutkovich. 

Your assistance in communicating to oncologists information about this rare cancer is so very important for a concerted effort worldwide to treat those with this diagnosis.  This help is greatly appreciated! ■

Lois Scott

Diagnosed Too Late

My son, Michael Tuttle, was diagnosed much too late to be treated for EHE. He was, young, vibrant, athletic, and a fighter.  Because this cancer was so rare, however, my son was referred from doctor to doctor, in an effort to understand his symptoms and determine a diagnosis. One physician even thought he was a drug addict and just seeking a means to obtain pills; he was so emotionally hurt by that accusation. 

When, finally, he was diagnosed at the Mayo Clinic in Phoenix, he had stage IV EHE, and the cancer had metastasized to both lungs, all of his ribs, his ankles, wrists, leg (where it had originated years before), and liver.  My son died within a month of his ­diagnosis. 

Thank you so much for publishing information on this rare and horrific disease.  The death of anyone is painful and particularly when that individual is young and should have years of life left to live. I am attaching a picture of my son, Michael Tuttle, taken 1 year ago, with me.  Again, thank you so much. ■

Karen Tuttle

 

Autopsy Reveals EHE

Thank you for publishing the article by Jane Gutkovich on EHE. My son passed away in September 2014 from this cancer. At the time of his death, doctors still had not been able to diagnose his condition. We had an autopsy performed and learned that my son’s death was due to this very rare cancer. Thank you again for publicizing information about EHE. ■

Darlene Frank

 

I Am A Person With EHE

Thank you for publishing the article “Shining a Spotlight on Epithelioid Hemangioendothelioma” by Jane Gutkovich. Like Ms. Gutkovich’s son, I am a person with EHE.  

It is encouraging that The ASCO Post has allowed Jane to share information on this rare cancer with your readers. Jane has worked tirelessly to learn about and connect with EHE experts around the world and to communicate information to others with this disease.

I commend you for recognizing her work and allowing others to learn about this disease through your publication. I do hope that you will continue to follow up  on EHE and report on any data presented at the 2015 ASCO Annual Meeting. ■

Christine A. Gaudreau

 



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