I have an appointment

Im 38 years old and Ive just been given an appointment with a boston hospital for what may be a sacroma of my knee. I havent spoken to anybody close to me yet, as I really dont want to scare anyone. But I am scared. I know they are rare an wondering exactly HOW rare. Im seeing an oncologist at the sarcoma division of MassGeneral. whats the rate of actual diagnosis of this type of cancer? and if anybody knows, how many cases of all of these suspected are not a cancer but a cyst from an old injury as I have been oft injured playing football..? please help, I have no one to talk to about this.

Mark.

Hi Mark,

My dad was diagnosed with retroperitoneal (midsection) sarcoma last year. My friend who is a lab researcher at Yale was trying to explain to us how rare it was. (She looked up articles from the science journals that are actually pretty old now). She said that the number of people with breast cancer and other more well known cancers number in the hundreds of thousands while people diagnosed with sarcomas are probably just a small percentage of that. Meaning, say that there are 600,000 diagnosed with breast cancer, lung cancer, etc. People with sarcomas probably number 6,000 or so. It's rare. So it's important that it's diagnosed correctly. 

Back when my family was looking for hospitals, numerous posters mentioned Sloan Kettering in New York. Since you're in Boston, it's not too far from where you are, compared to us, we're on the west coast. I'd try more than one diagnosis. It's highly recommended from what I hear.

Best wishes to you!

--laivly 

First of all... don't panic yet! The statistics are that adult sarcoma (in all of it's many forms) account for between1 to a little less than 1% of all cancer cases. And since you've not been diagnosed, that's a good thing! It means it's more likely to be any number of things than sarcoma!

That being said, I lost my precious Daddy 1 week and 2 days ago to soft tissue sarcoma. He fought a valiant 3 year fight! His originated in his right thigh and, before it could be removed, grew (in only 4 months) to 13lbs.! I know how scary it is when you don't know what sarcoma is and you read about it on the web! The statistics are so grim and seem hopeless! BUT... there is hope! The most important information I can give you, which no one gave us, is to get to a research center that specializes in only sarcoma! That is essential to your diagnosis, treatment, and prognosis! Even if your tests come back fine from this doctor, get an opinion from someone who KNOWS sarcoma! My Daddy was misdiagnosed 3 times in the first 4 months and that is precious, valuable time wasted if you do have sarcoma! After your tests are done, let me know how it goes! I am praying for good news! But if it is sarcoma, you are not alone! I have spent the last 3 years tirelessly researching this cancer and I will help you in any way I can! Best of luck and may God bless you!

Julie

Hi,

I am so greatful for this site. Our friends daughter was diagnosed with angiosarcoma. She is just 13. I need any information you may have. Any suggestions as far as treatment or hospitals in your country or anywhere else. We live in Canada, but we will go anywhere. I am new to this forum and have already posted a similar note. Thank you for any input you may have.

Best Regards

Dally

Dally,

First of all, I am SO sorry to hear about your friend's daughter! I know how heartbreaking this can be on a family because I lost my Daddy on Feb. 2 to soft tissue sarcoma! I HATE this disease! But my calling now is to help people like you get the information that we were not able to get soon enough! Let me start by telling you- THERE IS HOPE! Do not google "sarcoma"! You will think there is no way to recover from this. Type in (on your google search) "new hope for angiosarcoma patients". The US has many cancer institutes which are wonderful. But you need to get her to a center that specializes in sarcoma ONLY! The Sarcoma Research Institute in San Antonio is a great place to start! But check out the "SARC" website which will provide you with links for her particular type of sarcoma. This is your window of opportunity to get her into the right hands! So not to sound dramatic but.... run- don't walk! DO NOT let an oncologist who treats all forms of cancer touch her! This type of cancer is sneaky and cruel! You need a specialist! And one wrong doctor can make al the diference in this case! I will start praying now for your friend and you to fall into the right hands! I hope this helps you and doesn't just sound like rambling! Keep me updated! Bless you all!

Julie