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Sarcomas the silent killer
Posted by gerardstowell to Pediatric/Parenting, Sep 12, 2009 1:40pm
Sarcomas are cancers that predominantly affect young people under the age of 25. The attack the connective tissues and there are often very few symptoms. They are usually not discovered until they have metasticized. Individually they may be rare, but, collectively they account for 20% of the cancers that affect young people. Even though they account for 20% of the cancers they account for 65% of the deaths. The number of cases diagnosed annually is increasing at rates higher than population growth.
Comments 17
gerardstowell
Sep 12, 2009 1:43pm
If you are voting for this one please vote for the Childhood Cancer Awareness show as well. This idea is a little more specific. When most people think of childhood cancers they think of Leukemia because it affects more people. There are others that are more deadly and sarcomas are one of them.
elisembrooks
Sep 12, 2009 6:30pm
My daughter was diagnosed with rhabdomyosarcoma when she was 2 years old. Thankfully, she is now 5 and doing well. But many many sarcoma patients are not so lucky.
Kaleex
Sep 12, 2009 9:54pm
Since my 13 year old son was diagnosed with osteosarcoma in March of 2007, I have been shocked and astonished to meet so many other families who have been devastated by this monster disease. I am currently in the Philippines on the other side of the world, trying a last chance attempt to save my son's life from this relentless sarcoma. Please bring this disease to a higher awareness in the public's eye. We desperately need more research and funding in order to try and find a more effective treatment for our precious sons and daughters. An example of just one of the bright young people whose lives have been turned upside down by this cancer can be viewed at caringbridge.org/visit/keatonlee
tammymendez
Sep 13, 2009 10:10am
My 15 yr old son has battled three different cancers, 2 of them Sarcomas. We have to get awareness out, we must make this a priority for funding to find cures and treatments that are not so devastating to their young bodies.
donnaj65
Sep 13, 2009 12:07pm
I think it's important to, not only educate parents but to also educate physicians about sarcomas. My daughter was finally diagnosed correctly 3-4 months after complaining of pain and being misdiagnosed by three different doctors....even after an x-ray. By the time she had a bone scan and MRI she had a tumor in her pelvis the size of two grapefruits....I remind you now...THREE different physicians (PCP and two orthopedics) missed this.....she ended up losing the right side of her pelvis, sacrum and right leg...we will never know for sure if an earlier diagnosis could have prevented that from happening. I also voted for Childhood Cancer Awareness....we need to get the word out so that September is as filled with gold ribbons and fund raisers as October is with pink.
mombentley
Sep 13, 2009 4:43pm
My daughter was dx with inoperable retroperitonial synovial sarcoma at the age of 20. Not really a child, but hardly an adult. 3 years later and we are in our 3rd battle with this ugly disease. The year of her dx 3 of her sorority sisters were also dx. This needs to end.
ivee66
Sep 14, 2009 7:39am
I only see 6 comments for Sarcomas the Silent Killer so far, but I attribute that to the chronic lack of time people dealing with sarcoma have for non-life-threatening issues. Many of us are too busy finding doctors for our children, researching treatments, dealing with symptoms/chemo effects, sitting at bedsides, holding vomit buckets, praying, (or, all too often, grieving) to have time for the 'normal' stuff we used to do B.C. (Before Cancer)
luannf
Sep 14, 2009 10:32am
My daughter was diagnosed at 18, with osteosarcoma. She went to the doctor probably 3 times over a period of 4 months or so before we finally just got an x-ray and discovered the tumor in her femur. We were lucky that she did not have lung mets by that time which makes for a much tougher prognosis and battle. She had a radical resection of her femur (titanium prosthesis and kept her real leg) and finished chemo and is back at CAL. We are praying and hoping that she will make her 5 years of remission, not an easy thing to do with such an aggressive cancer. Because most patients with osteosarcma are young, it is often misdiagnosed and passed off as a sprain or some sports injury and told to wear a brace or go to pt. Time is of the essence in treating osteosarcoma, so doctors really need to become more aware of spotting it in time. I know that many people worry about the radiation in x-rays, but believe me, one x-ray is not going to make hurt you compared to the many many x-rays you get once you have this disease. So many of the patients we know that have osteosarcoma have died from this disease. Something really needs to be done to find a cure.
hchristian
Sep 21, 2009 6:39am
Our daughter, Hannah, was diagnosed with osteosarcoma in January '08, just two weeks after her 6th birthday. The tumor was in her right femur. Hannah underwent 13 months of treatment and lost a portion of her leg to the cancer. She had a rotationplasty done on 4/30/08. Today, Hannah is back in school - happy, healthy and enjoying life. She currently has scans every 6 weeks to ensure that the cancer has not returned, and will need to be closely monitored for the next 4 1/2 years. As part of this show idea, I would like to see "The Doctors" discuss the newest treatment options for sarcomas. Specifically, Rexin-G which just received orphan status by the FDA in the U.S. You can check out Hannah's Story at: http://www.caringbridge.org/visit/hannahchristian
amanda121084
Sep 22, 2009 8:30pm
I also voted for childhood cancer awareness month. My son was diagnosed with Ewing's Sarcoma at the age of three. He had been limping and complaining of pain on and off for four months before his diagnoses. By the time they caught the cancer, the tumor on his right pelvis was the size of a grapefruit and the cancer had metastasized to both lungs. After combination chemotherapy, a radical surgery to remove his right pelvis, and high-dose chemo with a stem cell transplant, he was in remission.. but only for nine months. We're still fighting!!! Before my son's diagnoses the only childhood cancer I was aware of was Leukemia. I know most sarcomas have a grim porgnosis if it has spread. There should be more awareness and research!
kristja
Sep 24, 2009 10:02pm
My daughter is fighting metastatic osteosarcoma. This is an incredibly aggressive cancer. More research needs to be done to find a cure. Danielle is 10 years old. So far she has been through 7 rounds of chemo, leg surgery-where most of her femur was removed, multiple hospitalizations and infections, upcoming lung surgery on both lungs and another revision leg surgery. We will then wait and pray this monster doesn't come back knowing it most likely will. Words could never describe the devastation the child and the family goes through while fighting this horrific illness. Please have a show on sarcomas and childhood cancer. Help bring awareness to this devastation in hopes of increasing funding to save our children.
susan schaberg
Sep 25, 2009 2:51pm
My 20 yr old daughter was dx with Osteosarcoma in 2006 after complaining of knee pain. A boy her age 1 mile away lost his life to sarcoma only one year after being diagnosed. This Cancer is very agressive. My daughter had limbsparing surgery and 1 year of chemo and she still wears a smile and has HOPE for the future.
ShelliJames
Oct 4, 2009 7:23am
my 4 yr old son is fighting his 3rd battle against rhabdomyosarcoma. Started with his prostate & relapsed localized. After having his bladder & prostate removed we thought we were done with this chapter of our lives. 3 weeks ago we learned it had metastasied to both lungs with too many lesions to count. Enough already
karis meier
Oct 21, 2009 1:06pm
I lost my twenty year old son from Osteosarcoma 12/24/08 . I have been following children diagnosed with sarcoma over the past few years and I am in contact with families that have been affected by this beast. You can read and follow my son's story and check out the Osteo sties. www.heathsupdate.blogspot.com http://www.caringbridge.org/visit/heathsammons http://www.caringbridge.org/visit/osteosarcoma http://www.acor.org/
dsilverman
Nov 14, 2009 12:11pm
My son was recently diagnosed with Ewing's Sarcoma. Although I am quite well read, I had very little information about sarcomas beforehand. But now I've learned of so many other young sarcoma patients fighting for their lives. It's heartbreaking. Please help raise awareness of this horrific disease. We need funds to help save the lives of these kids.
jenninman3
May 24, 2010 2:54pm
My almost 3 yr old son has ERMS(rhabdomyosarcoma) 4 days before his 2nd birthday. please do a show on this. very important. http://www.caringbridge.org/visit/zachcartwright Jennifer Inman-Cartwright