Learning can come from shared experience. These individuals have chosen to share their stories with you. These courageous people found different ways of coping and living with their illness. They all have different paths with different endings but the struggle remains the same. They all have a story to tell. If you would like to share your story with others, please send us your story and contact us at info@sarcomaalliance.org.
Videos
Following are links to websites and videos that are inspiring and provide valuable information.
Terry Healey was diagnosed with fibrosarcoma on his face. His story is really about his life after his diagnosis and surgery. He is an inspiration to everyone. http://terryhealey.com/?page_id=15
Nathalie Criou gives advice on fertility preservation after being diagnosed with sarcoma:
Stories
Amethyst Volera The Redirection of a Soul You may not see what value is in a life struggle when you are in it, but in retrospect you will recognize it as being one of the most important of life's lessons. After being diagnosed with a rare type of cancer, surviving a 14-hour surgery to remove a tumor on my brain stem, paralysis, hearing loss and upcoming radiation, I now see how the disease was a lifesaver. This ...
Ardeth F. Ardeth F., 25+ Year Survivor of Leiomyosarcoma My name is Ardeth F. and I am 37 years old. My problems with this dreaded disease began back when I was only 12. At the age of 12, I had four "benign" tumors removed from my stomach. The report from the hospital's pathology department said it was Leiomyoblastoma of the stomach. Because it was so rare, some slides from the operation were sent to Washington, ...
Diane J. Smith I would like to use the words of the apostle Paul to help tell my story. 2 Corinthians 12:7-10. And lest I should be exalted above measure through the abundance of the revelations, there was given to me a thorn in the flesh, the messenger of Satan to buffet me, lest I should be exalted above measure. In February 1987, God put a plan into action for my life, a plan that I still do not know the outcome ...
Donna Mulinski I am not even sure where to begin. My name is Donna Mulinski, I am a 34 year old woman, married for 15 years. I have two sons, ages 14 and 7. I breed, train, show and sell purebred Arabian horses for a living. In April 2000 my life took a sharp left turn. In the course of routinely working with a horse (breaking it to ride), I was accidentally bumped in the right hip, and right thigh by my assistant ...
Elizabeth MUNROZ
No cancer support groups existed in 1967. It was taboo to mention the "C" word to anyone. I wrapped up all my fear and suffering in hopelessness. But, I hoped to meet another living person with chondrosarcoma, just to know I might survive...
Georgann Albin Oct 2000, I was sitting at my computer doing my ebay thing and I put my hands on my thighs to push off and get up when I noticed a lump on the top of my left thigh. I was surprised to say the least because it was so large. It was soft when my leg was relaxed and it got hard when I flexed, so I was confused as to what it could be. I told my husband about it and then called my mother to get some advice. ...
Justina Durongpisitkul This is just an account of what's been happening to me and my family from the start of my illness. In 1993, I had a hysterectomy (uterus removed, ovaries left intact) because of a fibroid. Everything was fine i.e. there were no obvious symptoms until in Jan 2000, the doctors found two big masses in my ovaries, which had spread to the surrounding lymph nodes, and a small amount even on the peritoneum. ...
Kathleen Eldrid My name is Kathleen Rae Eldrid. I am a 49 year old Registered Nurse, licensed in CA and ME. My speciality is chemical dependency/eating disorders/life-style addictions. Although, since my correct diagnosis of Primitive Neuroectodermal Tumor, 4/1/93, I have become very educated in the fields of cancer immunotherapy/vaccines/Environmental Medicine. My journey began November 30, 1992 when I elected to ...
Kevin Cheda My name is Kevin Cheda, and I am 32 years old. I grew up in a small coastal town called Point Reyes Station, which is about one hour north of San Francisco in California. My parents owned the small grocery store in Pt. Reyes, and my entire family; grandparents, parents, older brother and sister all worked at the store. I graduated from Tomales High School in 1986, and went on to graduate from California ...
Kirk Souder Almost twenty years ago now, on my twenty-first birthday to the minute, my eyes closed as the general anesthesia for my second thoracotomy to remove a pulmonary metastases, put me into unconsciousness. At some point during the next two hours, a golf-ball size tumor was removed with a section of my lower left lobe, and that was the last time there was any sign of cancer in my body. Throughout my teenage ...
Lisa Boylan I would like to share my story with you ... I can now add “cancer” to the long list of things that have defined me. Other things, such as receptionist for a world-renowned rock band, local television spokes-model, and designer of surfing t-shirt’s – those things were much more fun ... however they probably didn’t shape me in the way cancer is shaping me now ...
Matthew Sawyer West vs. East; Conventional vs. Alternative: A Story of Hope (from The Humlegaarden Report) During my initial consultation, my Oncologist described me as the 19-year-old male who presents with "a challenge." What was that challenge? A tumor of massive proportions. Well, I am here to tell you that that tumor and the subsequent chemotherapy, radiation and loss of my leg was the absolute best thing that ...
Peter Cox "My name is Peter and I have cancer." Even now I can look at that sentence and not believe it. Nine and a half weeks ago I had not heard of sarcoma, beyond Karposi's eponymous, let alone malignant fibrous histiocytoma (MFH for short -- or Mother From Hell for the more technically minded). Now, however, I have a surgical scar that should guarantee me a swim-on part in the next remake of 'Jaws' and am ...
Ray Britland In spring 1994 I noticed a lump forming in my right arm, just above my elbow. I eventually went to see my Doctor in mid-September '94. He sent me for a x-ray after examining my arm, the result of which was clear. The Doc. said that the lump might be fatty tissue and if it was still there to come back in four weeks. I went back at the end of October '94, when he sent me to see a Specialist for a 'non-routine' ...
Rosalie Peipert My story started 26 1/2 yrs. ago when I had a hysterectomy to remove a fibroid the size of a 5 month pregnancy (12cm) with heavy bleeding. The gyn and I were both surprised it was cancer. He told me I was cured. Sure... I went on my merry way never getting chest x rays, never getting checked out at all except for pap smears every ...
Sara Cambreleng Just before Thanksgiving 1998 I noticed a lump on my left index finger. It really didn't bother me except when I used the signal post in the car. It remained the same till shortly after Christmas. Then it became a little sorer, a little larger but still was not hurting me. About mid Jan I noticed that my finger seemed to be 'twisting' and decided that I should see a doctor. Of course it was another ...
Steve Doo My name is Steve Doo and I have MFH, Malignant Fibrous Histiocytoma. What started out to be a small lump below my left hip, turned into the fight of my life. I've been staged at Stage 2b and the grade of my tumor is as of the highest, grade 4. My whole life would change with that one phone call from my general surgeon after he removed the tumor and got the results back. The word "Cancer" brings the ...
Susan Bohardt Susan bravely fought her retroperitoneal sarcoma but lost the battle in December 2008. The following story was written by her husband Bob as a tribute to Susan and for everyone who carries on with their life during the most difficult time anyone can face. Throughout her treatment, Susan was determined to carry on with life as normally as possible ...
Susan H. I am a 45-year-old female who is married and employed at Wake Forest University Baptist Medical Center/North Carolina Baptist Hospital in Winston-Salem, NC. I am an electroencephalogram (EEG) technician and work in neurology. Around October of 2006, I noticed that I started getting some bursitis-type pain in my left shoulder. I really did not worry about this ...
Suzanne Leider Hello and welcome to The Sarcoma Alliance. My name is Suzanne Leider. I am the founder and president of the Alliance and an 8-year sarcoma survivor. My life with cancer began in 1992 when I was diagnosed with a synovial sarcoma in my right thigh. When I was 25 I was a frequent jogger and one day noticed some tenderness in my right thigh. Not believing it was anything more than muscle strain, I dealt ...
Terry Healey AT FACE VALUE Cancer left him with scars everyone could see. But the worst ones were invisible. At the age of 20, my life had been smooth sailing, seldom interrupted with adversity or difficulty. I was a junior at the University of California at Berkeley. I was confident, smart and athletic. Though I wasn't overly concerned with my appearance, I also knew I was handsome. But during my junior year, ...
Vilon Laetitia
"When we feel fragile, we need a sense of protection, as if we were wrapped in a bubble. This bubble can be anything as long as it surrounds us and gives us pleasure. This pleasure, this envelope, other than the people that I love, comes in the form of 'places'. Places that I've chosen, or places that have been imposed on me because of what I'm living through, soft within and comfortably routine, I have wanted to capture them in images. I absolutely want to reveal this den of pain where everyone seems themselves in the look of others, this story of the rebuilding of beings, of the intimate war that we wage against ourselves".
Wendy Sommers Hi, my name is Wendy Sommers, and at 25 years of age I was diagnosed with myxoliposarcoma in my upper left thigh. I underwent a biopsy, followed by wide resection and finally radiation therapy. I never had a recurrence of that first cancer. However, when I was 28 years old I was diagnosed with osteosarcoma in the same leg, this time on my tibia behind my knee. At that time I lived in New York City ...
Michael Wackers My name is Michael Wackers. I am a 55-year old German librarian living in Southwestern Germany, close to the major US airbase at Ramstein. In 1989 I was diagnosed with a liposarcoma in my inner right thigh. I have written an account of my illness.
Darlene Rampasaud Well, I am 36 yrs old. When I was 33 - in 2001, I had a bump on my right hip. I was told it was nothing to worry about and that it was just a lipoma. My doctor scooped it out and said everything was fine. In 2002 it grew back ...
Seth R. Raivetz I was diagnosed with osteosarcoma in February, 2005. I just underwent 10.5 months of chemotherapy in three different locations. I was a "normal" law school student in 2/05 but I had some pain in my groin that just wouldn't go away with physical therapy. I was diagnosed with a high grade osteosarcoma on my right pelvis, the acetabulum to be specific...
Suzie Siegel A friend wrote a song about my cancer to the tune of “Jambalaya (on the Bayou).” I wasn’t offended. I say: Bring on the silly songs and jokes. People have a hard time talking about cancer and death. But what’s the point of all this suffering if we can’t laugh occasionally? Plus, I know my cancer has a musical name: leiomyosarcoma, pronounced “lie-oh-my-oh-sar-koh-ma.” Me oh my oh....
I was ambivalent about sharing my story as I see so many others who have more struggles and issues as their diagnosis is more severe. But I realized one point of my story may benefit others is the journey of getting the diagnosis and the mishandling of my first surgery. This may help others seek the correct medical professionals as supported by this site and NCCN.org.
You would think that "Staying in the Game" meant the ability for me to be able to win the 2008 Alaska State Racquetball Championship in all ages, at age 62 years old while drawing a social security check!
But actually "Staying in the Game" for me is the transition my life slowly took in a positive way 7 years ago when I was told by my primary doctor that I had an incurable and very rare cancer called Leiomyosarcoma or LMS......
