The SPAGN Blog
Detecting sarcomas early is crucial
Diagnosing sarcomas is important but challenging: they are so rare that many doctors come across only a handful during their careers, and early symptoms are often vague. Soft tissue sarcomas being his specialisation, Dr. Avirup Chowdury from the Institute of Cancer Research in London, takes us through the diagnostic pathway and identifies key factors of an ideal scenario. He also give pointers for patients of suspicious symptoms.
Abbie’s Determination to Sock it to Sarcoma!
Mandy Basson is a mother on a mission. Her daughter Abbie’s diagnosis of Ewing’s Sarcoma started a journey to improve diagnosis and treatment pathways for sarcoma patients in rural healthcare systems. This is the story of the birth of Sock it to Sarcoma!
Artificial intelligence – what does it mean to us?
We live in truly interesting times, finds Gerard van Oortmerssen, Co-Chair of the SPAGN Board. The latest wave of digital revolution, artificial intelligence, creates new opportunities for sarcoma patients and patient advocates. AI can facilitate access to information and peer-to-peer support. Moreover, it allows to collect patient reported outcomes and thus give sarcoma patients a stronger voice and say in research and care.
The lump is gone — finally!
About ten months ago, Roger Wilson shared with us the experience of finding a lump – again. It was a benign cyst, and for the first time, he had a choice as to whether or not to have a surgery. Roger decided to have the lump removed, and it is finally gone. Relieved and grateful to his tumour team, Roger gives us the continuation of his story.
From chaos to control: Three decades in the continuum of care
We celebrate with V Care 30 years of patient advocacy work in Mumbai, India and other states! Integral part of this pioneering cancer patient association is Spandan, a welcoming space for those affected by sarcoma. Spandan means ‘heartbeat’ in English. Vandana Gupta, founder of V Care, explains their mission, success and lessons learnt along the way.
Six great examples of sarcoma patient advocacy to follow this year!
This year’s winning projects of the SPAGN Advocacy in Action Awards demonstrate the creativity, deep insights into patients concerns, dedication and professionalism of our members to help improve sarcoma patients access to care and quality of life. A big applause!
My lumpy life as a young adult
“After a shower, I noticed an odd lump on my left hip. Two weeks passed, but Lumpy—the name I declared this mysterious lump—remained. Luckily, I had a when in doubt, check it out mentality…” Read about Matt’s sarcoma journey and find out why sarcoma is like skydiving.
Somos raros, mas juntos somos mas fortes!
Juntas, duas pacientes brasileiras com tumor desmoide, Carolina Menezes e Georgia Garofalo, fundaram a Desmoide Brasil em 2021. Desde então, a Desmoide Brasil tem – entre outras iniciativas — organizado simpósios, montado exposições, lançado um registro de pacientes, escrito um livreto de boas-vindas para novos pacientes, e estabelecido uma comunidade online ativa no Facebook e WhatsApp. Sua história é uma inspiração!
We are rare, but together we are stronger!
Together, two Brazilian desmoid tumor patients, Carolina Menezes and Georgia Garofalo, founded Desmoide Brasil in 2021. In the years since then, Desmoide Brasil has – among other things — hosted symposia, organized an exhibition, launched a patient registry, penned a welcoming booklet for new patients, and established a thriving online community on Facebook and WhatsApp. Their story is an inspiration!
Should I join a clinical trial?
When you have been diagnosed with sarcoma you are faced with making important, and at times daunting decisions about treatment. Amongst the treatment choices, a clinical trial may be an option. But how do you know if it is a good option for you? Is it something you should even consider? Denise Reinke asks 6 key questions about clinical trials and provides helpful answers for sarcoma patients to consider.
No Losers Here!
War metaphors are used all the time in the context of cancer. “You’re a fighter! You got this!”, people say to a newly diagnosed patient.
And the war metaphors seem to imply that if someone succumbs to cancer, it’s because they didn’t fight hard enough, or worse, gave up – “He lost his battle against cancer.” Many point out that such expectations are an additional burden placed upon a person who is already undergoing so much. But I wonder: Can the use of war metaphors be of help to us sarcoma patients as we strive to take an active role in our treatment?
Reflections for the New Year
2023 was a big year for SPAGN and the sarcoma patient community as a whole. We look back on the highlights of all that we achieved together and the many ways in which we grew, as we look to the year ahead.
Would you like to submit a text to Voices of Sarcoma?
The blog Voices of Sarcoma covers topics of interest to the wider SPAGN community, which includes patient advocates of our Member Groups, sarcoma patients and caregivers, as well as members of the medical profession. The aim of the blog is to convey information, share experiences and viewpoints, and strengthen the bonds of the international sarcoma community. While Voices of Sarcoma welcomes submissions on a wide range of topics, we ask that you adhere to our Editorial Guidelines. Find out more.
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