By Elizabeth Goldstein-Rice

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Read our Comprehensive Guide for the Newly Diagnosed

There are numerous and important reasons why someone who has been diagnosed with sarcoma should be treated at a center where there is an interdisciplinary medical team that has experience in treating this rare disease.

Let’s say you’ve received a new diagnosis of sarcoma. You have an initial diagnosis, as well as an expert second opinion to fine-tune that diagnosis, and are now faced with the decision of where to have your treatment. Understandably, most patients like you would prefer to be treated someplace close to home, perhaps at a local oncology clinic recommended by close friends, co-workers or relatives, who had good experiences using locally available medical services. However, when it comes to the treatment of sarcomas, the advice of the experts is to take the leap and find your way to a major medical center with a specialty in treating rare, life-threatening sarcomas.

Success Rates at Sarcoma Centers

In a meticulous review of 4,205 sarcoma case records covering a 20-year period, researchers at the University of Miami Sylvester Comprehensive Cancer Center found significantly higher success rates for patients treated at major sarcoma centers. The study entitled, “Should Soft Tissue Sarcomas Be Treated at High-volume Centers? An Analysis of 4205 Patients,” compares patient demographics; tumor type, size and location; and therapy given at low volume (LVC) and high-volume (HVC) medical facilities.1 Patients seen at HVC were in more critical condition than those treated at the LVC, having higher-grade tumors and correspondingly worse prognoses. Yet, patients treated at the HVC had better outcomes than their less critical counterparts treated at LVC. Patients treated at HVC were offered a broader range of treatment options, including radiation and chemotherapy in addition to surgery. The study states “a greater proportion of patients treated at HVC received radiation therapy (43% vs 24.2%, P < 0.001) and chemotherapy (14.7% vs. 6.3%, P < 0.001).”1 The addition of radiation and chemotherapy is credited with the better outcomes for these patients.

Not only did patients at HVC benefit from the use of a combination of therapies, those who had sarcomas in their extremities were also less likely to have amputations. LVC amputated 13.8% of the time, in contrast to 9.4% at HVC, where doctors have more experience with limb preservation strategies.1 While this might not, at first glance, seem like a large margin, for those who are able to complete their cancer treatments without the loss of life or limb, this is huge!

What would explain this disparity? According to the authors, “STSs are rare. This paucity leaves most healthcare institutions with low case volumes and outdated or inadequate resources, which impede the ability to offer optimal treatment of these rare and often complicated tumors.”1

Whoops Surgeries

A study in the UK finds that “The most significant factors affecting survival were grade (high versus low) and depth of the tumour” and the expertise of the treatment center.2 In this study, the argument is made that patients have better outcomes at large hospital centers largely because local control is much better.2 In performing surgery to remove a sarcoma, it is extremely important to remove the entire tumor and surrounding tissue to achieve a wide margin between cancerous cells and healthy tissue. There’s even a name for one of the common errors, in which the surgeon performs a “whoops” procedure.2 According to the authors, “This is when a lump is excised, usually with little forethought and without a biopsy and the surgeon is then surprised when the pathologist reports it as a sarcoma (hence the term ‘whoops’) …. most authors now agree that wide re-excision to obtain clear margins is necessary as residual tumour will be found in anything between 30 and 60% of cases.”2 Needless to say, one surgery is preferable to two surgeries especially where the second one is totally avoidable. Local recurrence (LR) rates are much lower when the surgery is done correctly.

Local Recurrence and Sarcoma Centers

As the UK study states, “Patients with an adequate excision had a LR rate of 26% compared to a 40% risk in patients with an inadequate excision.”2 This study concludes, as did the previous study above, that patients should be referred exclusively to specialized medical centers that see a high volume of rare cancers “for optimal treatment, survival and functional outcome.”1,2

Fritz Eilber and Frederick Eilber of the University of California Los Angeles School of Medicine further underscore the importance of avoiding recurrence due to the use of incorrect surgical procedures. In their article “Surgical Management of Soft Tissue Tumors: Avoiding the Pitfalls,” they conclude, “The optimal treatment of locally recurrent disease is to prevent it, which necessitates aggressive surgical treatment of the primary disease, because adjuvant therapies cannot compensate for inadequate surgery.”3 The best way to avoid surgical errors for rare tumors (and all sarcomas are rare) is to be treated at a specialty center with an experienced multidisciplinary team.1-3

Some Additional Considerations

In addition to the benefits of experienced medical teams, reduced surgical risk and documented lower local recurrence rates, other factors to consider in selecting a treatment center include:

• Use of precise diagnostic methods before treatment begins.
• Knowledgeable staff that will counsel patients in making decisions not directly related to their cancer treatments, such as pre-treatment fertility choices.
• Increased odds of being offered the latest, targeted therapies.
• Availability of promising clinical trials.

Patients evaluating treatment centers should also know that even the best sarcoma centers may not inform patients of, or offer to refer patients to, outside facilities for specialized services that are only available in a limited number of locations. For example, according to The National Association for Proton Therapy, proton beam therapy, an effective treatment for some sarcomas, is only available at 5 sites within the United States. A hospital that has its own IMRT (Intensity-Modulated Radiation Therapy) technology is likely to encourage patients to use IMRT rather than go elsewhere in order to receive proton beam therapy. Patients wanting to know about a wide range of treatment options should make sure they get second opinions from more than one institution and do some research ahead of time regarding the therapies offered at each one.

Given this body of evidence that treatment at an HVC is superior to that at local facilities, British researchers did a study to find out why patients didn’t find their way to sarcoma centers more quickly.4 The authors of “Delays in Referral of Soft Tissue Sarcomas” begin with the premise that “It is well established that soft tissue sarcomas are more effectively treated in a specialist centre.”4 They go on to produce an involved analysis of patient demographics, key dates in patient contact with medical professionals and the type of initial treatments provided. The patients were rarely found to be the cause of extended delays, as the authors note “although some patients are more willing to tolerate symptoms, in general, patients present quickly to a medical professional and therefore do not contribute significantly to delay in reaching a specialist centre for treatment.”4 In other words, people with life-threatening sarcomas are not ignoring sound medical advice; they often aren’t receiving it in the first place! The researchers ultimately establish that medical professionals are responsible for most delays, primarily because they lack knowledge of published cancer treatment guidelines.4

Summary

Patients need help finding the right place of treatment. Online sarcoma self-help and support groups are two methods that patients are using to find their way to sarcoma centers. Patients depend on the medical professionals around them to tell them the truth about their condition and what they have to do to combat it, even when it means leaving a familiar local practice for the big city hospital centers. They also need help understanding that sarcoma-related clinical trials are not all wild experiments, but may be the fastest route to remission. And if you are that sarcoma patient, you do deserve nothing but the best!

by Elizabeth Goldstein-Rice
Last revised: 12/2008
Last medical review: 12/2008

References

1. “Should Soft Tissue Sarcomas Be Treated at High-volume Centers? An Analysis of 4205 Patients”, by Juan C. Gutierrez, MD, Eduardo A. Perez, MD, Frederick L. Moffat, MD, Alan S. Livingstone, MD, Dido Franceschi, MD, and Leonidas G. Koniaris, MD, Annals of Surgery, Volume 245, Number 6, June 2007.

2. “Should Soft Tissue Sarcomas be Treated at a Specialist Centre?”, by A. A. Bhangu, J. A. S. Beard, and R. J. Grimer, Sarcoma, V. 8 (2004), Issue 1, Pages 1-6.

3. “Surgical Management of Soft Tissue Tumors: Avoiding the Pitfalls”, By Fritz C. Eilber, MD, and Frederick R. Eilber, MD, American Society of Clinical Oncology Educational Book. ASCO 2005.

4. “Delays in Referral of Soft Tissue Sarcomas”, by G. D. Johnson, G. Smith, A. Dramis, and R. J. Grimer, Sarcoma, V. 2008, Article ID 378574, 7 pages.

V5N6 ESUN. Copyright © 2008 Liddy Shriver Sarcoma Initiative.