William Tseng, MD, is a sarcoma surgical oncologist at City of Hope National Medical Center in Duarte, California, and serves on the Board of Directors and Medical Advisory Board for the Sarcoma Alliance.

William Tseng, MD

Within the health care system context, patient advocacy refers to the activity of people speaking out for the rights of patients, survivors and caregivers. Patient advocacy is manifested in many ways, including representing the patient's point of view during legislative discussions, educating the public about an illness and assisting in educating both patients and caregivers about the condition that has now become the focus of their lives.

Being diagnosed with a potentially terminal illness, especially a rare disease like sarcoma, is overwhelming for patients and their loved ones. As they embark on the process of learning to navigate the new world that now includes their illness, patients and their loved ones may quickly be inundated with confusing medical jargon, frustrated by delays and red tape encountered when trying to see specialists and seek insurance coverage, and burdened by financial concerns. While navigating the “new normal,” patients and their caregivers may find it challenging to advocate for themselves. Patient advocacy is critical to the patient journey, particularly in the case of a diagnosis or a rare cancer such as a sarcoma.

Raising Awareness: History of the Sarcoma Alliance

Synovial sarcoma patient Suzanne Leider founded the Sarcoma Alliance in 1999 in her living room with the words “guidance, education and support” in her head. It took four years for her to meet another patient with sarcoma, Wendy Sommers. Leider decided four years was too long to wait to meet a fellow survivor and decided to do something about it. With the help of friends, family and volunteers, the Sarcoma Alliance was born.

As a patient and a health care provider herself, she understood the difficulties of navigating our health care system. She knew that creating a gathering place for those touched by sarcoma would diminish the isolation that accompanies this diagnosis. Sommers was at Leider’s side, sharing treatment information, wisdom and inspiration.

Leider recognized the importance of having sarcoma specialists involved in treatment as early as possible. Sarcomas are so diverse and represent such a small percentage of cancers that many physicians may not be aware of the latest treatments for a specific subtype. In addition, sarcoma experts are likely to be located at treatment centers with the multidisciplinary teams needed to treat these cancers. However, not everyone recognized this or has the financial means to travel to a sarcoma specialist center. From that, Leider developed the Assistance Fund, which provides grants to reimburse expenses to obtain a second opinion from a sarcoma expert.

While the Sarcoma Alliance recognizes the value of research, the organization focuses on the immediate challenges of how to aid patients with sarcoma today. Currently, the Sarcoma Alliance is the only international sarcoma advocacy organization whose sole focus is on providing guidance, education and support for everyone affected by the disease. The organization empowers patients and their loved ones so that they can understand and receive the best medical services.

Because it is rare, sarcoma gets little or no attention from many organizations that work with patients with cancer. Most sarcoma nonprofits concentrate on a particular sarcoma subtype or a particular cancer center. The Sarcoma Alliance is the oldest sarcoma nonprofit not tied to any one center or subtype.

Attention to patient advocacy is directly connected to awareness. The Sarcoma Alliance was one of the organizations that knew early on that increased awareness could help patients get a correct diagnosis, as well as better treatment and support. Very early efforts focused on having symbols — a yellow ribbon and a sunflower — and then progressing to the designation of July as Sarcoma Awareness Month.

The Sarcoma Alliance recognizes the difficulty of transitioning from a “healthy” individual to a patient with sarcoma, and has implemented adaptable solutions and blueprints for patients and their loved ones to help alleviate the uncertainty. The Sarcoma Alliance provides a professional and nurturing environment where patients and their loved ones can seek answers to their questions and concerns about sarcoma.

So how does the Sarcoma Alliance help advocate for the sarcoma community? The Sarcoma Alliance’s platform uses a personal approach to supporting the patient's journey with sarcoma. The Sarcoma Alliance website (

) provides information about sarcoma in general and about specific sarcoma subtypes, as well as information about treatment guidelines and clinical trials. Patients are offered one to one support to help access social and financial services. On its website, patients can find the application for an Assistance Fund grant to help cover the costs for second opinions from sarcoma experts.

Some of the Sarcoma Alliance’s other services include:

Providing information on in-person and online support groups.

Moderating private social media pages for sarcoma (where patients can communicate with each other).

Sharing the latest in sarcoma news through social media and e-communications.

Engaging the sarcoma community in volunteer and advocacy opportunities.

Hosting the annual Sarcoma Exchange conference for patients, survivors, caregivers and medical professionals

The objective of the Sarcoma Alliance is to improve care by assisting patients and caregivers on their sarcoma journey in collaborating on common priorities. Often, that means that another organization or group with which the Sarcoma Alliance collaborates is best placed to provide patients and caregivers with the particular services they need. Some of these organizations and groups can be found on the Sarcoma Alliance’s webpage: 

Articles

A nonprofit organization aims to connect patients, caregivers and loved ones affected by sarcoma while educating those about the rare cancer.

You Are Not Alone: The Sarcoma Alliance as a Patient Advocate

Sarcoma is a rare cancer of the soft tissues and bone that often just misses the spotlight for the general public, but certainly has quite an impact for those affected by it.

July is Sarcoma Awareness month, but all throughout the year, sarcoma deserves our attention!

The epidemiology of sarcoma is very different from the more common cancers. Every year, 17,000 people in the United States are given a new diagnosis of sarcoma, a number that is at least 20-fold less than breast cancer. While rare, anyone can get sarcoma.

Certain types of sarcoma are more common in children (e.g. rhabdomyosarcoma), but this cancer can impact those in any age group. Sarcoma can occur in both the rich and the poor, irrespective of access to health care, and regardless of gender or race.

Some hereditary cancer syndromes (e.g. Li-Fraumeni, neurofibromatosis) or prior history of radiation can predispose a person to developing specific sarcomas; however, common risk factors such as smoking, obesity, diet or alcohol intake have no clear association with sarcoma. While colonoscopy and blood levels of PSA are useful in screening for colon and prostate cancer respectively, there are currently no validated tools for early detection of sarcoma.

Sarcoma often presents in subtle ways. It can be a painless lump that has been slowly growing over the last year: “I’ll bring it up with my doctor at the next annual visit.” And then at that visit, it is not uncommon for the physician to inadvertently dismiss it: “we’ll watch it for a few more months.” When a work-up is initiated, the diagnosis is not always straightforward.

The radiologist reading the MRI or CT reports that the mass is indeterminate: “likely a lipoma, however liposarcoma cannot be ruled out.” A needle biopsy may be performed, and the pathologist is also unclear about the diagnosis either due to inadequate sampling or simply, unfamiliarity with sarcoma.

In fact, it is important to recognize that sarcoma encompasses almost 100 distinct types and subtypes based on the body tissue of origin (e.g. fat, muscle, blood vessel, etc.) and unique genetic features of the tumor cells. Therefore it may be more appropriate to think of sarcoma as a group of cancers as opposed to a single entity.

Unfortunately, with all of these potential obstacles to diagnosis, the net result for the sarcoma patient is often delay before any treatment is given.

Treatment for sarcoma is incredibly complex; referral to a specialist is critical. The treatment for sarcoma needs to be individualized for each patient. Ideally, a patient’s case should be discussed at a multidisciplinary “tumor board” among specialists in this cancer from radiology and pathology to verify the diagnosis and sarcoma type, as well as from surgical, medical and radiation oncology to mutually decide on the best course of treatment.

When sarcoma has not spread to other parts of the body, surgery is an option and often the main form of treatment.

The surgical oncologist who specializes in sarcoma balances the technical aspects of performing a safe and complete tumor removal (or resection) with a deep understanding of the expected disease behavior which can in fact, often nuance the surgical approach.

In some cases, there may also be a benefit to giving radiation or chemotherapy either before or after surgery. For some sarcoma types, specific targeted drug therapies or immunotherapy may be more ideal than chemotherapy. A medical oncologist who specializes in sarcoma can discuss these options and provide guidance to a relevant clinical trial, when appropriate.

With the complexities in the diagnosis and treatment of sarcoma, the patient is encouraged to take a proactive role in their care. Getting to a sarcoma specialist or multidisciplinary sarcoma center is a very important first step. A multitude of studies have shown improved survival for patients with sarcoma when they are treated by a specialist, a concept that would seem intuitive for a rare, complex disease.

While high patient volume is often used as a benchmark to denote specialization, there are also other factors such as dedication to sarcoma (versus other cancers) and active contribution to the field (with research and clinical trials) that should also be considered. The patient can directly facilitate a more effective consultation by having relevant records available and organized.

For a new diagnosis, this can include radiology reports along with the actual images to view (e.g. on a CD); pathology reports and in some cases, the actual tissue slides and paraffin blocks which may be used for re-review by a sarcoma pathologist. For patients who have had prior treatment, operative reports from the surgeon and treatment summaries from the radiation oncologist and medical oncologist are useful. In patients with a particularly extensive history, a concise outline of treatments given can be helpful.

Overall, sarcoma is an aggressive cancer. Although there are exceptions, for the majority of patients, sarcoma can indeed be lethal. At the same time, for the patient, sarcoma can be extremely anxiety provoking.

The rarity of the disease, the relative lack of knowledge about sarcoma and in some cases, inappropriate initial treatment by a non-specialist (e.g. a “whoops procedure”) further exacerbates the situation.

Because even in the public health shadows of the more common cancers, for the few but strong patients fighting sarcoma, we are obligated to spread awareness, restore hope and with specialist care, ensure the best possible outcomes.

For more news on cancer updates, research and education, don’t forget to 

Even in the public health shadows of the more common cancers like breast cancer, for the few but strong patients with a sarcoma diagnosis, we are obligated to spread awareness, restore hope and with specialist care, ensure the best possible outcomes.

Sarcoma Deserves More Attention in the Spotlight

I am a true believer in giving patients with cancer hope.

This can be extremely challenging when dealing with a rare cancer called sarcoma. In comparison to more common cancers, very little is known about sarcoma. These tumors can develop anywhere in the body – mostly in the limbs, but sometimes on the trunk or deep within the abdomen (also known as the retroperitoneum). To make things even more confusing, there are many different subtypes of sarcoma, the understanding of which is vitally important for appropriate treatment.

For the patient with sarcoma, finding hope can be especially problematic when local doctors are unfamiliar with this rare disease. Yet, making patients hopeful about their medical journey is as important as all the medical components of treatment.

For over a decade, I have been a cancer surgeon dedicated to battling sarcoma. Each day I see and talk with patients from all over the country with this disease. I admit I have become somewhat obsessed with sarcoma from fighting it on behalf of my patients and seeing what it can do to people. In addition to patient care, I am actively engaged in research on sarcoma. I collaborate with the few colleagues dedicated to this disease around the world, with the hope of someday finding a cure. We discuss sarcoma – a lot. We write about sarcoma – a lot – in medical literature to advance the field and for the general public to increase awareness.

Until a cure is found, hope is a very important part of the fight against sarcoma. This is especially so for those patients with sarcoma deemed inoperable or "unresectable" by other surgeons, sometimes at other reputable hospitals. There is no textbook answer for this rare cancer and each patient is different. So, with thorough explanation and mutual understanding from my patients, I offer my patients with sarcoma hope.

Hope can mean that perhaps after doing radiation or drug therapy first, we move forward with surgery. Hope can mean that even though it may be the fourth surgery for retroperitoneal sarcoma, we still coordinate with multiple surgical teams in preparation for anything, with the same vigor as the first surgery. Hope means for an extensive sarcoma of the upper arm that is still functional, we spend eight hours trying to save it, recognizing that amputation would be a quicker and easier option. And above all, hope means recognizing that beyond the sarcoma, patients are human beings with families and friends who are committed to conquering this “beast!”

At the end of the day, whether it’s recognizing a “curious” trend in patients that could lead to a novel treatment approach, a completely and safely removed tumor sitting on the operating room back table, or simply a patient with sarcoma who now has calm and clarity about what to expect moving forward – I am a strong believer in giving patients hope.

For the patient with a rare cancer, such as sarcoma, finding hope can be especially problematic, writes a cancer surgeon. Making patients hopeful, he writes, about their medical journey is as important as the medical components of treatment.

I Am a Strong Believer of Giving Patients with Cancer Hope

For patients with retroperitoneal sarcoma, surgery is still the only chance for cure. 

However, these are not straightforward operations at all. Because of their large size and the limited space in the rest of the abdomen, these tumors often touch, compress, displace or outright invade major organs and blood vessels.

This greatly magnifies the risk of the operation such that most surgeons are reluctant to take on these cases and, rightfully, refer to specialty centers. To remove the tumors completely, we often have to simultaneously take out multiple organs and, sometimes, major blood vessels. As a result, these surgeries can involve multiple teams; take a long time (sometimes eight hours or more); and, for the surgeon, can be quite demanding both mentally and physically.

After recovering from such a challenging surgery, my patients often ask me, “Am I cured now?” I can only imagine the emotional roller coaster they must experience when, knowing what we went through and seeing the remarkably long abdominal scar, we necessarily discuss the fact that even with the best surgery at the best specialty centers, these cancers have a notorious reputation for coming back. Radiation and chemotherapy sometimes lower this risk, but given the rarity of this disease, we currently do not have enough information to know if these nonsurgical treatments are truly effective. 

Ultimately, when, not if — for most patients, unfortunately &mdash; the beast returns, and if it has not spread, we are back to surgery, with each subsequent operation harder and riskier than the last. It goes without saying that we need better surgical and nonsurgical treatment for patients with retroperitoneal sarcoma. This means better understanding of the disease on multiple levels.

In the retroperitoneum, the two most common subtypes are liposarcoma and leiomyosarcoma, cancers that originate from fat and smooth muscle, respectively. These two can have very different behaviors. Even within the most common subtype, liposarcoma, patients can have tumors that range from slow growing, without the capability to spread, to those that are infiltrating, aggressive and rapidly spreading. Understanding these differences affects our approach to treatment, including, for example, how extensive to be with surgery or whether to give chemotherapy.

Knowing the beast on the inside through research

In an ideal world, every tumor removed from surgery would be literally dissected to study the tumor on a microscopic level to learn about the cells and how they function, are organized, and interact with one another, and, most important, if there are any “weak spots” that can be exploited for treatment purposes. I also believe that we should focus on not just the bad cells (cancer) but also the good ones (immune cells) that actually make it into and reside in the tumor itself. Given the large tumor size, there is certainly more than enough material to study!

Last year, I had the unique opportunity to do retroperitoneal sarcoma surgery with colleagues in Milan, Italy, at one of the largest specialty centers in the world for this rare cancer. For me, this was a wonderful professional experience and continues to be rewarding to this day, as we continue to learn from each other, share experiences and discuss ways to potentially incorporate new research findings to optimize treatment. In fact, in the spirit of collaboration, the Milan sarcoma group has played a central role in the recent development of an international group of surgeons dedicated to improving outcomes for patients with retroperitoneal sarcoma. Our mutual goal — “Non segni di recidiva malattia,” which means “No signs of disease recurrence” — is posted on my office wall in Los Angeles to give me inspiration.

I think about retroperitoneal sarcoma on a daily basis, even when I am not face-to-face with the tumor in the operating room. For such a rare and challenging disease, this dedication is arguably necessary; I would imagine for patients affected by this disease, it is also frequently on their minds. I am optimistic that together, with others across the country and around the world dedicated to retroperitoneal sarcoma, we will continue to make progress in the fight against this beast.

William Tseng, MD, is a surgical oncologist at the University of Southern California. He treats patients with adult soft tissue sarcomas of any body location, including the retroperitoneum. He also has a specific research interest in liposarcoma, a subset of these tumors. Tseng has contributed numerous scientific and medical articles, as well as several patient-centered resources.

Fighting retroperitoneal sarcoma can be like fighting a rare and giant beast.

William Tseng, MD

You Are Not Alone: The Sarcoma Alliance as a Patient Advocate

Sarcoma Deserves More Attention in the Spotlight

I Am a Strong Believer of Giving Patients with Cancer Hope

Understanding Retroperitoneal Sarcoma

Latest News