Problems with care: a patients perspective

Bookmark and Share
Published: 9 Sep 2017
Views: 2235
Rating:
Save
Ana Kogan Wais - Ewing sarcoma patient, Madrid, Spain

 Ana Kogan Wais presents at a press conference at the ESMO 2017 Congress about the need for better information and a more effective support network for adolescent and young adult cancer patients. She goes on to discuss the challenges faced by patients not only during treatment but also post-treatment and outlines that the post-treatment effects may have a greater impact on a patients life. 

Thank you, first, for giving us the opportunity for patients to be here and have a voice heard. When I was diagnosed I had an extraskeletal Ewing sarcoma at the age of 16 and I’m currently 25 now. As you can imagine, teenagers, you tend to think you’re a superhero but not the kind of superhero that can fly but the kind of superhero that never has anything happen to them. Then the day you get a diagnosis like this it changes your world. But what we want to get across is that not only this changes your world, which it does, and it changes the world of everyone around you, but there are impacts that affect your life after your diagnosis and after your treatment.

For me personally, I had two surgeries, a year of chemotherapy and a few months of radiotherapy and I was treated in both an adult and a paediatric hospital which meant from one side I got clowns and babies and beautiful walls painted with pictures and on the other side I got really, really serious doctors, clean walls and very old people. So it was a mixed feeling and I got really different information; no-one knew how to speak to me directly. So what I would to like to see happening from now on, in the future, is to have age-specific information and support for young teenagers with cancer. This is why in Spain we have created the AAA which aims to improve the conditions of young adolescents and adults with cancer and we hope with this we can improve not only treatment and facilities but what happens afterwards. For me, I struggled with chronic pain in my back where I had my tumour and it makes it difficult for me every single day. It has had a greater impact on my life than cancer has because it’s there every single day and there’s nowhere I can get treated for it because there are no late effect clinics and no-one really knows what to do with it. So having a space where we could be treated afterwards and followed afterwards would be really helpful. Thank you.