<b>
Understanding the language of cancer and of clinical trials will help you communicate with your doctors.  Being able to use this language will help you understand and choose treatment options more wisely.</b>   It is not difficult.  You will need some terms defined.

<b>5 Year Survival Rates </b>
Survival rates at 2 years and 5 years mean the percentage of people in a given group surviving that many years after diagnosis. Survival rates are good ways to check on one aspect of treatment of potentially fatal conditions. However, all 'rates' apply to groups only. They are useful for evaluating treatment, and they are useful for clarifying whether or not a condition is quite serious. They are NOT however, useful in predicting your own survival in the group. 
<b>This is where statistics break down. Statistics are very useful in describing groups, but cannot be applied to an individual. The survival rate might be 90% or 10%, but to the individual involved, he either survives [100%] or doesn't [0 %]. </b>
One must also be careful to look at the group for which the survival rates are being quoted. In LMS, without exception, the earlier the primary tumors are found and excised with clear margins, the longer the survival of the hosts.  So a group of Stage I patients will have a much higher survival rate than a group of Stage IV patients.  And a group of Stage I patients with less aggressive tumors [low grade tumors,]  will generally survive longer than a group of Stage I patients with more aggressive tumors [high grade tumors].  However, this is not always true for individual patients... we cannot say that one INDIVIDUAL with a low grade tumor will survive longer than any other individual with a high grade tumor.  
We cannot say that this Stage I patient will survive longer than that Stage I patient. We can only talk about GROUPS of patients with statistics.  Statistics is applicable ONLY to groups, not to individuals. 

<b>Median Survival Time </b>
This is the time from diagnosis or treatment [whichever is taken as the beginning point] to the point at which half [50%] of the group had died. It is another way to evaluate treatment of a group, and another way to indicate seriousness of a condition. 
However, again, in LMS, without exception, the earlier the primary tumors are found and excised with clear margins, the longer the survival of the hosts. So a group of Stage I patients will have a much higher median survival time than a group of Stage IV b patients. 
However, in a Clinical Trial dealing with advanced [stage IV] previously treated LMS, a median survival time of the group from onset of treatment is one way to evaluate the treatment. Again, this is a statistic used to describe GROUPS, and cannot be used to give a life span estimate to an individual. 

<b>Mean Survival Time </b>
This is the AVERAGE survival time of the members of a group. The Mean and the Average are the same. This is the time from diagnosis or treatment [whichever is taken as the beginning point] until death, for each member of the group, added up, and then divided by the number of members of the group. In order to have a Mean Survival Time statistic, all of the members of the group must be dead. Mean Survival Time is often used to evaluate studies where very sick people with very advanced cancers are treated. 

<b>Advantages of Using the Median instead of the Mean </b>
There are certain advantages in using Median Survival Time as a statistic. 1. You don't have to wait for the entire group to die before getting a statistical idea of effectiveness. 2. Averages can be influenced strongly by one or two way-out atypical scores. Medians essentially indicate the fiftieth percentile of a group. Medians are not so easily biased by an atypical data point. 

<b>Sizes of Groups and Statistical Reliability </b>
When group sizes are small, the range of results that means a real difference becomes wider. So a difference of 12% between two treatments, while it might be a REAL and MEANINGFUL [in statistics, called 'significant'] difference if the groups were hundreds of people, if the groups compared are only 8 people, 12% is NOT a big difference, as it means a difference of just one individual...which could be chance only, and not a significant difference in treatment effectiveness. 

<b>Treatment Trials </b>
Because LMS is rare, the number of people in trials is small. To be sure about a treatment giving benefit, larger numbers are often needed. We know that LMS patients survival depends upon a small tumor with wide, clear margin, excision, and that given this, recurrence depends upon the aggression of the tumor itself. But there have been too few patients in trials to be able to standardize many treatments... and therefore the question of adjuvant treatment effectiveness remains in certain situations. 

You will also need to know the meanings of the following terms:

<b>Cure. </b>
When it comes to cancer, the word "cure" is a tricky one. Doctors hesitate to say someone is cured of cancer, because there is always a chance the cancer can come back. Even if all the cancer seems to be gone, there may be some undetected cells still in the body. These cells can multiply over time and lead to recurrence.  If someone is described as cured, it usually means that he or she has been cancer-free for at least five years.  

For each primary site of LMS, there is a certain chance that you will never see the LMS again [chance of cure].  The chance varies as the stage varies.  Usually for stage 1 [very small tumors] there is about a 50% chance it will not return.   For stage 2 and stage 3 the chance for cure decreases. 

If it returns, there are local recurrences and there are metastatic recurrences.
1. A single local recurrence might slightly decrease your chance of cure.
2. Metastatic recurrences place you in stage IV.  Stage IV is considered incurable, but does not mean instant death by any means.   There are people who have been in stage IV for years.  <b>We are hanging on because of the cancer genome project [CGAP], and the possibility of targeted molecular treatments for LMS, which might be quite close. </b> See below.

<b>Progressive disease.</b> 
Progressive disease is defined in clinical trials as tumor growth of more than 20 percent since treatment began. Tumor growth means that the tumor is getting bigger, but it may also mean that the tumor is spreading. Progression generally indicates that treatment has stopped working. The bottom line is that your cancer is getting worse.

<b>Recurrence. </b>
The cancer may have returned in its original location, or it may be in a new location.

<b>Refractory cancer, or resistant cancer.</b> 
For many reasons, cancer may not respond to treatment. Some cancer cells have ways of defending themselves against chemotherapy drugs, biological agents and/or radiation therapy. In such cases, the cancer is termed refractory or resistant. Resistant cancer may shrink, but not to the point where the treatment is determined to be effective. In most cases, the tumor stays the same size it was before treatment (stable disease) or it grows (progressive disease).
LMS is generally a chemotherapy and radiation resistant cancer.  However, LMS tumors differ greatly from each other, and some are somewhat more chemosensitive than others.  We do not  consider chemotherapy or radiation capable of creating a cure for LMS.  The golden standard of care for LMS is surgery with clear margins, if it is possible.

<b>Remission, complete remission or complete response.</b> 
If you are in remission, there is No Evidence of Disease [NED].  But some cancer cells may still be present microscopically, and they can multiply over time, and then the cancer will "return".   Remission may last for many years, or for less than one year. You should continue to follow up with your doctor and get tested regularly to see if any cancer cells remain in your body.

<b>Partial response.</b> 
A partial response indicates there has been a decrease in tumor size after treatment. For LMS a partial response means tumors must be reduced by more than 50 percent. In some clinical trials, new guidelines define a partial response as a reduction in tumor size of at least 30 percent.

<b>Stable disease.</b> 
A tumor may shrink, but not enough to be categorized as a partial response (that is, tumor reduction greater than 50 percent). Or a tumor may increase in size, but not enough to be considered progressive disease (that is, tumor growth greater than 20 percent). Such tumors, in which there is no significant change in size, are classified as stable disease.

<b>Disease-free survival.</b>
Disease-free survival is the length of time after treatment that a person experiences a complete remission. Disease-free survival can also refer to the percentage of people who experience complete remission for a certain time period. For example, if a cancer treatment results in 70 percent disease-free survival over five years, seven out of every 10 people were in complete remission for five years after treatment.

<b>Event-free survival. </b>
This term is usually used only in clinical trials. It refers to the length of time after treatment that a person remains free of certain negative events, which can include the following:
Severe treatment side effects 
Cancer recurrence or progression 
Death (from treatment side effects or from the cancer itself)
The negative events used to calculate event-free survival can vary. They are usually determined by the type of clinical trial conducted.

<b>Progression-free survival.</b>
This term defines the length of time during and after treatment that the cancer does not grow. Progression-free survival includes the amount of time patients have experienced a complete response or a partial response, as well as the amount of time patients have experienced stable disease.

<b>Lengthening Survival Time 
You will notice that LMS survival has increased, in some cases dramatically, from the earlier studies in the 1970's and early 1980's as compared with the later studies in the late 1990's. This is a composite result: there may be earlier discovery, there is certainly more aggressive and effective treatment of metastasis, and patient involvement in the diagnosis and treatment is higher. The consumer approach to medical care has led patients to seek out more aggressive and more active treatment instead of accepting one doctor's possibly passive prognosis.</b>

It is currently likely that most of the Stage 3 and all of the Stage 4 patients will eventually die of LMS or its treatment.  Whether they die in 3 months or 27 years is only partly under their control. But there are some things that can be done: 
