One patient with glioblastoma still alive nine years later
by Qksand on Fri Apr 06, 2007 12:00 AM
I was recently dx high grade myxofibrosarcoma after surgery to remove a lump, at the right hip, thought to be benign. I found the lump only about 8 months ago and my gp based on MRI thought it was most likely benign and no biopsy was taken. Well, we should have approached it with the potential high risk in mind. Now, we have to seek expert help. Any suggestions and experience in potential spreading of this soft tissue sarcoma? I read that chemo is not particularly effective.
by Witchdoctor on Fri Apr 06, 2007 12:00 AM
You need to be seen by an orthopedic oncologist. What kind of surgery was done? If it was complete with 3 to 6 cm margins or a "compartmental" resection then maybe no additional surgical treatment is necessary. Most people would then get wide field Radiation to prevent local recurrence which could be 30 to 50 percent without. Local contro is 90 percent with limb preservation. The biggest failure is in the lung. Chemo in adult soft tissur sarcoma's have not had good results although with a high grade tumor most get chemo after local treatment in the hopes it improves results (but no real evidence).
You should have CT scand done and a repeat MRI of the area to see if there is residual disease or "satellite" lesions. A bone scan and PET may be helpful.
by Qksand on Sun Apr 08, 2007 12:00 AM
Thanks for the info. I am in the process of getting 2nd opinion by oncologists. So far, their approaches look similar. Unfortunately, there does not seem to be effective treatment to slow or prevent spreading. Any clinical trials aiming for that in the making? Alternative medicines to boost body immunity?
Knowing that I have this nasty cancer gave me a different outlook to life. It's sort of like two sides of a coin - before, I had the thinking that I may live for a long time that I tend to put things off or had my hands in too many things; now that I know my life is most likely of very limited time span, that clarity in a way is very helpful in sorting out priorities.
by Witchdoctor on Sun Apr 08, 2007 12:00 AM
Make sure by oncologists you mean ; Surgical Oncologist, Medical Oncologist and Radiation Oncologist. You will need all three most likely.
Depending on the size of the tumor and the Workup (staging) you could have a good chance of cure, so don't throw in the towel or be too pessimistic. What you have IS treatable.
by Qksand on Tue Apr 10, 2007 12:00 AM
Got an appointment with MD Anderson Sarcoma Center.
I am just picking up the pieces and gathering my means to get on with the most promising treatment. Thanks for the encouraging msg.
by Qksand on Mon Apr 16, 2007 12:00 AM
It looks like I am going to get a resection which will remove sufficiently the tissues surrounding the primary tumor so as to have certain amount of negative margin. There will be real time pathology on frozen tissues to verify negative margin is achieved. However, it will be only gross. Detailed pathology will happen later in 2-3 days. This means that cancer cells still might be found but should be minuscule Later, radiation will be applied to kill off the minuscule ones.
In reading the literatures on STS in extremities, there seems to be a consensus that resection with radiation only minimize local recurrences and has no correlation with metastasis and survival rate. High grade malignancy of primary tumor indicates the propensity of metastasizing. This means to me that resection and radiation has NO CURE EFFECT.
This raises my questions: what is the significance of primary tumor ? Does it mean the primary tumor is not really the source of metastasis? Or, before removal of the primary tumor the metastasis already could have occurred? Or, the metastasis could be merely a manifestation of local cell mutation turning into MFH?
I now found out that there is another complication: There was ecchymosis (spread of blood) from my initial surgery. "one must assume cancer cells have been transported along". That means I should have radiation treatment over a wide area where ecchymosis occur. I was taking photographs of the recovery of my initial surgery and the bruises showed up well on the photos.
Well, time to move on.
by Witchdoctor on Mon Apr 16, 2007 12:00 AM
Sorry, if I did not make myself clear.
My primary tumor was already removed. The resection is to remove additional surrounding material and create a negative margin. I got information from NIH, Sloan-Kettering, .... It is well documented that resection has no correlation with metastasis and survival. I would like very much to know otherwise, it would be more encouraging to me. Can you help directing me to the source of info? Thanks.
by Witchdoctor on Tue Apr 17, 2007 12:00 AM
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