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Read First -- Discussion of Statistics Terms

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.
It is not difficult. You will need some terms defined.

5 Year Survival Rates
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.
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 %].
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.

Median Survival Time
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.

Mean Survival Time
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.

Advantages of Using the Median instead of the Mean
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.

Sizes of Groups and Statistical Reliability
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.

Treatment Trials
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:

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. 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. See below.

Progressive disease.
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.

The cancer may have returned in its original location, or it may be in a new location.

Refractory cancer, or resistant cancer.
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.

Remission, complete remission or complete response.
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.

Partial response.
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.

Stable disease.
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.

Disease-free survival.
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.

Event-free survival.
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.

Progression-free survival.
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.

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.

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:
  1. Early detection of recurrence or metastases.

  2. Aggressive treatment of recurrence or metastases.

  3. Surgical excision, with clear margins, of local recurrence and/or liver and/or lung metastases.

  4. Surgical excision with clear margins of other metastases as they surface.

  5. Vigilance about other cancers arising. [Approximately 7.5 % of LMS patients will have another primary cancer in their lifetime.]

  6. Living a relatively toxin-free lifestyle with a diet rich in antioxidants. [Consider a vegan diet or antiangiogenic regimen if appropriate.]

  7. Good stress management techniques and support groups.

  8. Utilizing other methods, whether chemotherapy, or biological or immunological or other, to decrease tumor cell survival and reproduction.

  9. BECAUSE the author firmly believes that the cancer genome project will identify the proteins that are driving tumor growth and that there will be designer drug development that will render all LMS tumors either manageable or curable -- try to stay alive until it is available.
Read First -- Cancer Genome Project
The Cancer Genome Anatomy Project [CGAP]

The National Institute of Health [NIH] has a clear explanation of CGAP.
tutorial on CGAP

There is no one cancer gene.
All cancers start from one particular cell that mutates. Its DNA changes [has mutations] so that the cell no longer grows in an orderly fashion according to the rules for its type.

The mutations are often "don't work" mutations, and if they occur to cancer suppressor genes, like p53, then safeguards against having cells with damaged DNA no longer exist. The p53 gene prevents cells with damaged DNA from reproducing, it makes them commit suicide. If the p53 gene is damaged, then the cell CAN reproduce with damaged DNA. And the cell line from that cell can have more and more mutations, until enough occur so that a cancer develops.

Some of these mutations often create excess amounts of their protein product [an enzyme] in the cells. The cells are said to "overexpress" these proteins.

The CGAP will use microarrays to identify overexpressed proteins in the cancer cells. Some of these overexpressed proteins are responsible for the cancer's behaviors, including growth, metastasizing, invasion of tissues. If the overexpressed protein that controls growth and reproduction of that type of cancer cell is identified, a targeted agent can be developed that would fit INTO that protein and render it useless. So the cancer couldn't grow. And there would be CONTROL of the cancer.

The cancer genome project is an attempt to do microarrays on all cancers in order to discover which proteins are overexpressed, and driving the growth of the cancer cells. When that is known, then drugs can be constructed to combine with those proteins and make them inactive... this is targeted treatment. So cancers can be controlled.

This is coming, and it is coming in the not too distant future. We already have Gleevec for CKIT positive GIST.

If leiomyosarcoma has the same growth driver protein as another cancer...and that cancer has a targeted drug for it.... then we have a drug, too.

If leiomyosarcoma has a protein that drives growth which would be inactivated by a drug already in existence, then we have a drug to use in this situation as well. [An example would be LMS which is positive for PDGFr, which might benefit from use of Gleevec]

In summary, the cancer genome project is looking at all the proteins overexpressed in ALL cancers. This means it would be possible to develop the drugs that will control the cancers.
Read First -- LMS General Statistics Information
Leiomyosarcoma and General Statistics

The following abstracts of medical journal articles were compiled from Pubmed medical journal searches. Parts of the abstracts have been emphasized by the compiler by placing them in bold type. [Compiler's comments will appear in brackets [ ed. such as this].]

This will give a general, large Pubmed/Medline search for LMS and survival statistics

J Surg Oncol 1998 Oct;69(2):94-8
Distant skin and soft tissue metastases from sarcomas.
Rao UN, Hanan SH, Lotze MT, Karakousis CP. Department of Pathology, University of Pittsburgh Medical Center, Pennsylvania 15213, USA.

,,, Five cases of sarcomas from different anatomical locations that had metastasized to skin and subcutaneous soft tissue were identified in three women and two men. ,,, The primary tumors had wide excisions, followed by either radiation or chemotherapy, or both. The histological types were ..., and leiomyosarcoma. Metastases occurred to the skin and soft tissue of the chest wall, leg, breast, and abdominal wall. The diagnosis was established by excision biopsies for three cases and by needle biopsy and fine-needle aspiration for two cases... Three patients died within 7 months of the diagnosis of soft tissue metastases that were always histologically high grade and never solitary. One patient is alive with lung metastasis discovered 17 months after excision of primary. Lung metastases occurred either simultaneously or within a short period after soft tissue metastases. ,,, Distant skin and soft tissue metastases from sarcomas are very rare and often occur as a terminal event. [This points out the difficulties sometimes of deciding whether a tumor is a primary or a metastasis. If it is a primary, complete excision might possibly effect a cure. If it is a metastasis, there is no cure for stage IV LMS. However, if it is a metastasis, the patient might still be able to be placed in surgical remission, for a prolonged survival, if the primary and any other mets can be found and excised. Ed. ]
Fetch PMID: 9808512

Chir Ital 2000 Jul-Aug;52(4):343-9
Clinical management of soft tissue sarcomas.
Di Martino L, Dessena M, Demontis B, Grosso LP, Murenu G. Divisione di Chirurgia Sperimentale, Ospedale Oncologico A. Businco, Cagliari.

The prognosis of soft tissue sarcomas has dramatically improved over the past few decades thanks to the use of increasingly suitable multidisciplinary therapeutic approaches. .... This type of tumour arises in a muscle compartment and then spreads proximally and distally within the compartment without involving adjacent structures, except in a relatively advanced phase, while as regards remote metastases the preferential diffusion route is via the bloodstream... Surgical management consists in extensive en bloc resection, followed by radiotherapy in the event of unclear margins and/or high grade tumour even when dealing with small sarcomas. The main indications for chemotherapy are locally advanced cases or cases with distant metastases. Thanks to these therapeutic approaches today, good results can be achieved, with 5-year survival rates of 80 and 67%, respectively, in stages I and II, and of 12 to 50% in the more advanced stages. Review, tutorial
Fetch PMID: 11190524

Cancer 1999 Mar 1;85(5):1077-83
Leiomyosarcoma of the inferior vena cava: prognosis and comparison with leiomyosarcoma of other anatomic sites.
Hines OJ, Nelson S, Quinones-Baldrich WJ, Eilber FR Department of Surgery, University of California-Los Angeles School of Medicine, 90095, USA.

.. Leiomyosarcoma of the inferior vena cava (IVC) is an uncommon tumor that many believe portends a poor prognosis compared with leiomyosarcoma with similar histology at other anatomic sites. ... From October 1978 to January 1997, 14 patients with leiomyosarcoma of the IVC were treated at the University of California-Los Angeles Medical Center. Wide resection was attempted in all patients. The characteristics of each patient were documented and compared with those of patients with leiomyosarcoma of the stomach (n = 13), small intestine (n = 18), retroperitoneum (n = 19), and uterus (n = 10) who were treated during the same time period. RESULTS: Age, gender, tumor size, tumor grade, and lymph node status did not impact survival of patients with leiomyosarcoma of the IVC. Patients with positive surgical margins fared significantly worse (P < 0.03) compared with those who underwent complete resection. Radiation therapy diminished local recurrence and may improve median survival (6 months [n = 2] vs. 51 months [n = 12]) in this patient population. Patients who received combined chemotherapy and radiation lived longer than those who did not (P < 0.05). The 5-year cumulative survival rate (Kaplan-Meier method) was 53% for patients with leiomyosarcoma of the IVC, 47% for those with leiomyosarcoma of the stomach, 43% for those with leiomyosarcoma of the small intestine, 56% for those with leiomyosarcoma of the retroperitoneum, and 65% for those with leiomyosarcoma of the uterus. CONCLUSIONS: Despite having a tumor that originates from the IVC, patients with this tumor type can enjoy reasonably long term survival. It appears that these patients benefit from radiation therapy to control local disease. Survival of these patients is no worse than of patients with leiomyosarcomatous lesions of other origin. Aggressive surgical management combined with adjuvant therapy offers the best treatment for patients with leiomyosarcoma of the IVC. [ed: Note: This is with respect to adjuvant treatment of LMS involving the major vein of the body, not necessarily adjuvant treatment of the other sites of occurrence.]
Fetch PMID: 10091791

Surg 1998 Jan;64(1):53-60; discussion 60-1
Leiomyosarcoma: a 45-year review at Charity Hospital, New Orleans.
Hill MA, Mera R, Levine EA Section of Surgical Oncology, Louisiana State University Medical Center, New Orleans 70112, USA.

Approximately 2 to 9% of all soft tissue sarcomas are leiomyosarcomas (LMS). LMS arises nearly exclusively as tumors in adults, with peak incidence occurring in the fifth and sixth decades. The purpose of this study was to analyze disease-specific survival and define prognostic factors in patients with this disease who were treated and followed at a single institution. Fifty-eight cases of LMS were identified in the Tumor Registry of the Medical Center of Louisiana at New Orleans (charity Hospital) from 1950 to 1995. Charts were reviewed and tissue blocks reexamined to confirm the diagnosis. Follow-up information was available for 56 of 58 (96%) patients. Univariate and multivariate analyses were performed to analyze which factors predict outcome. The median survival time was 138 months. Univariate analysis identified age (> 48 years), location (retroperitoneal vs other sites), and extent of disease as prognostic factors. Multivariate analysis revealed that only age and the extent of disease at presentation are independent prognostic indicators. Race, sex, and adjuvant therapy were not significant prognostic factors. Surgical resection remains the therapeutic mainstay for patients with LMS. The value of other treatment modalities is largely limited to surgical failures. The data show that the age of the patient and the extent of disease at presentation are the best predictors of long-term survival. LMS has a good prognosis when complete resection of localized lesions can be achieved.
Fetch PMID: 9457038

Ann Surg Oncol 1997 Apr-May;4(3):223-7
Leiomyosarcoma in childhood and adolescence.
Hwang ES, Gerald W, Wollner N, Meyers P, La Quaglia MP Department of Surgery, Memorial-Sloan Kettering Cancer Center, New York, New York 10021, USA.

BACKGROUND: Few series of leiomyosarcoma in patients < 21 years of age have been reported. We reviewed our institutional experience with this neoplasm to learn disease characteristics, patterns of relapse, and outcome. METHODS: The records of 21 patients with leiomyosarcoma admitted to our institution were reviewed retrospectively; 18 of these were diagnosed after 1970. Overall survival was estimated using the Kaplan-Meier method. RESULTS: Ninety-five percent (20 of 21) were initially treated with a wide local excision that was complete with a negative microscopic margin in 10 (48%). There also was a strong correlation between grade and surgical margins. High-grade tumors were associated with a lower rate of complete resection. The majority underwent additional therapy. Radiation was used to treat both initial and recurrent disease in nine patients, with four of these undergoing brachytherapy. Thirteen patients were treated with adjuvant chemotherapy, most commonly doxorubicin (seven patients) and cisplatin (six patients). The median length of survival was 9.3 years, and there were nine disease-related deaths (43%). Of interest was the progressive decrease in survival with time. The 5-year overall survival rate was 79%; the 10-year rate was 49%. Three patients died of progressive disease > 10 years after initial diagnosis. CONCLUSIONS: We conclude that leiomyosarcomas arising in childhood and adolescence are associated with a good initial chance of survival that decreases progressively over time. Known prognostic factors from larger adult series are consistent with the present data, but they are not provable because of the small number of patients. In particular, the grade was correlated with surgical margins.
Fetch PMID: 9142383
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go to Pubmed
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leiomyosarcoma AND survival AND "your primary site"

last updated January 2004

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