Im Just A Mess

I happened along this web site.  My father was just diagnosed with retroperitonial sarcoma.  After seeing the surgeons before the ct guided tissue biopsy the informes us that the worst case was this type of cancer and that it was operative and treatable.  I have been surfing the web and my findings are to the contrary.  I am so scared for my father.  The tumor is 6x9 in. and is pushing one of his kidneys out.  To remove this they would have to go in through his back.  We have another meeting with the surgeons in one week.  I know that I am rambling.  I am very confused, very scared. I would appreciate any information anyone could provide me with.  Thank you so very much!!

He needs to be staged before surgery, if clean, then if the gross tumor should be surgically removed if possible.  Usually followed by local irradiation and chemo if the tumor is high grade and if he is a candidate.

The Grade of the Sarcoma is probably the biggest prognostic factor, it is graded from one to three with three being the worst.  Usually Locoregional control can be obtained with surgery and radiation, the problem is we are still searching for a systemic therapy that is effective in Adult Sarcomas.

Pediatric Sarcomas respond well to Chemo, Adult had been difficult to prove much benefit, but if high grade most get it hoping  to decrease the incidence of Mets.

Hi, my name is Sondra. My husband has been battling sarcoma for the past three years. He is in the middle of having a tumor removed from his chest by having a procedure known as cyberknife. I wonder if you have checked into the cyberknife for the possible removal of your Fathers tumor. It is unbelievable. Has a very high success level and is totally uninvasive. You can check it out online at "accuray" or google cyberknife. Good luck

Hello, My name is John.  I also have retroperitoneal sarcoma.  My tumor was much larger about the size of a soccor ball. The turmor weighed over 11 1/2 lbs...and I am not a big person.  Average height & weight.    It took over my entire abdominal cavity.  It totally wrapped around my right kidney.  

 On July 1st I celebrated by 5th year of recovery although I have just been advised of reoccurance.   Let me briefly give you my story.  There is hope.

I was treated at MD Anderson cancer center in Houston Tx.  Although I do not live close to MDA, folowing research, I found that it had one of the best Sarcoma units in the world. 

I first underwent 25 sessions of MIRT radiation.  This is a high concentration of radiation that targets specific tumors.  This is to assist in reducing the tumor in order to provide a good margin of tissue during surgury.  In my case it did not work very much because the tumor was so large. 

Following a 90 day recovery period, I my operation took place on 7/1/02.  Due to the size, a small amount of the tumor remained.  It could not be reached.  Hopefully the radition killed all or most of the remaining cancer cells. 

So I tell you all of this because, if caught in time and it looks like 6mm is in time, this type of Sarcoma has a good chance of being treated and having a favorable outcome....at least for a good period of time. 

The key is two things....1) Since this type of cancer is classified as a "rare cancer", you must find some one and place that has treated this type of cancer.  Many hospitals just follow a general protocol.  This can be dangerous.  2) is to lean as much as possibl as you can about this cancer....do you homework and ask questions.  3) put you faith in the good Lord.  He will provide you the strength that is needed as you and your father go through valley.  It will not be easy....but believe me, it can be done with His help and your positive attitude.

My wife and I will keep you both in our prayers........

John

Hello,

I read your story, pretty impressive. I also have lms. I have had four surgeries in 11 months. Ive done chemo which did not work. I had surgery about 5 weeks ago and am undergoing chemo again and will do radiation after. This has been so discouraging for me. I really haven't been able to return back to work with all the surgeries. Its driving me nuts. If they didint tell me I was sick I wouldn't believe them. Who was ur surgeon at md anderson, thats my next step. Its about 1200 miles from where I live but yet its the closest sarcoma center. Hope to hear from you.

Yvonne

Cyberknife is TOTALLY EXPERIMENTAL !  There are no results period.  It needs to be studied to find out its utilization.  Unfortunately some people are "billing " it as a great thing.  One clue, insurance companies are balking at paying for it as it is expensive and invasive and there is no proof.

 They will pay for Brain and spinal cord tumors.