“Live with sarcoma: The cancer nobody talks about”

“Hdiagnosis that changes a life. There are others who, besides, make us feel completely alone.

This month marks the International Awareness Month for sarcoma. In Portugal, as in the rest of the world, receiving this diagnosis often means entering a completely unknown territory. For most people – including many health professionals – “sarcoma” is a word they had never heard and this rarity has consequences that go far beyond medical treatment.

The sarcoma represents about 1% of all types of cancer, but comprises more than 100 subtypes, about 20% ultra-rare. This diversity translates into very concrete challenges:

• difficulty finding professionals with specific experience in their sarcoma subtype;

• limited access to research and clinical trials;

• lack of information adapted to the disease subtype;

• deep feeling of isolation

Scientific evidence shows that people with rare diseases often have higher levels of anxiety, depression and social isolation. In sarcomas, these challenges are aggravated by the unpredictability of the disease and the difficulty in finding other people with similar experiences. 

Learn how to navigate a complex system

The course begins immediately in the diagnosis. According to recent studies, it is estimated that a family doctor may find only 1 or 2 cases of sarcoma throughout his career, making it natural to find it difficult to recognize an illness with little specific symptoms early (tumoring, pain, etc.).

Thus, after a diagnosis of sarcoma, one of the greatest difficulties for people is to understand what to do next: who should follow their case, whether or not to seek a second opinion and how to find adequate information about a subtype of disease that is sometimes extremely rare.

The reference centres make a difference

Due to its complexity, the diagnosis of sarcoma, the definition of treatment and, whenever necessary, the review of images and pathological anatomy should involve multidisciplinary teams with specific experience in this area. A EURACAN (European Reference Network for rare solid adult tumours) estimates that the rate of inaccuracy of the anatomopathological diagnoses performed outside specialized centers is between 30 to 40%, which may require review, which reinforces the importance of experience in this area.

In Portugal there are five Reference Centers for Sarcomas:

• ULS de Santo António (Porto)

• ULS de Santa Maria (Lisbon)

• IPO Lisboa

• IPO Porto

• ULS de Coimbra

Fundamental decisions should benefit from the experience of professionals used to discuss and treat sarcomas and therefore collaboration between health professionals is fundamental. Therefore, a person with sarcoma who is not being accompanied in a referral center can talk to his oncologist or family doctor about the possibility of referral to one of these centers.

You can also contact one of the centres directly to ask how a second opinion query is requested.

In particularly rare cases, health professionals themselves may use the European EURACAN network to discuss cases or, exceptionally, patients may need to be access to healthcare in specialised centres abroad.

Information and support also save lives

In addition to medical care, it is essential to find credible information and support.

It may be useful:

• seek international associations dedicated to its sarcoma subtype;

• consult organisations such as Sarcoma Patient Advocacy Global Network (SPAGN);

• to participate in online patient communities if this makes sense to you. An example is

facebook groups dedicated to sarcomas in general or to a specific subtype. These

spaces is possible to talk to people living with the same diagnosis.

Not everything that appears in an online research is scientifically rigorous, and one person's experience does not determine what will happen to another but the information found should serve to prepare questions and support shared decisions with the medical team.

In addition, it is worth noting that no community replaces a medical consultation or psychological support. But for many people it makes all the difference to stop feeling that they are alone and feel accompanied by those who understand the experience of living with this disease.

We know that some people feel supported by listening to other experiences while others prefer to keep more distance. Both choices are legitimate and there is no right or wrong attitude.

But for those who feel that this connection can help, finding someone with a similar experience can profoundly diminish the feeling of isolation.

It was by recognizing this need that I created a facebook group addressed to people affected by sarcomas in Portugal. The group intends to be a meeting space between patients, survivors, family members and caregivers, where it is possible to share experiences, to ask questions, to find information and, above all, to realize that no one has to go through this journey alone.”