Rare Adult & Pediatric Cancer Web Blog

Dr. Matthew Anderson, Baylor College of Medicine in Houston, TX should be considered our knight in shining armor, ladies.  He and Dr. Diane Bodurka, from the M.D. Anderson Cancer Center, created a database of information for 400 patients diagnosed with this rare form of uterine cancer.  Compiling the patient information took Dr. Anderson over 5 years.  Data, such as tumor size, patient age, menopausal status, and treatment methods was documented. 

He is currently working to create a specialized clinic for uterine leiomyosarcoma at the Baylor Clinic in Houston.  Hopefully, those of you who have uterine leiomyosarcoma will have a ‘champion’ to help your through it.  This is a rare gift in the world of rare cancers.  I only wish that more physicians would follow in Dr. Anderson’s footsteps and take an interest in some of the many rare cancers who have no champion.  We sure could use the help.

Dr. Matthew Anderson, I Salute You!

Take Care,  Sharon  www.rare-cancer.org

Ewing’s sarcoma, peripheral primitive neuroectodermal tumor (PPNET), and Askin’s tumor are classified as Ewing’s tumors.  It is most often found in children, adolescents, and young adults.

Chromosomal translocation and fusion between chromosomes is the basic cause of this cancer. These tumors can occur anywhere in the body, but most commonly present in the pelvis, proximal long tubular bones (such as the ribs, femur, and humerus), and/or soft tissues. 

Prognosis, based on age, has led to controversy.  Some studies show that the older a person is at diagnosis, the poorer the outconme of treatment. Others studies show no age-related survival differences. This article examines whether age at diagnosis affects prognosis:

How to Treat the Ewing’s Family of Sarcomas in Adult Patients

Take Care,  Sharon  http://www.rare-cancer.org
This email or the contents of our website should not be misconstrued as medical advice.  Please review all information with your medical professionals.

“Acceptance is the answer to all my problems.” My close friends said that to me when my husband died. He did not die from cancer (I am the cancer patient), but he did die from long term medical problems. Many of my friends said “you knew it was coming”. And they told me that I would feel better, day by day. None of this was true. None of it was ‘acceptable’ to me.I went through stages of anger, sadness, loneliness, fear, and a desire to die myself. It took a very long time to feel even a little better. And a much longer time to find some normalcy in my life again. Some people told me it would take me one year. It took me 5+!

So, one thing I learned was that each person is different, each loss is different, and each grief process is different. The one thing I can tell you is to expect the unexpected and to not listen to other’s judgments about what you should, or should not, be feeling, thinking, doing. Be patient and caring with yourself.
 

Take Care,  Sharon  www.rare-cancer.org