"I saw several benefits to be included in a clinical study"
Håkan has worked as a nurse and director in the healthcare sector for more than 40 years. Just over three years ago, he became a patient when he was diagnosed with spread prostate cancer. For Håkan it was a matter of course to say yes.
Although he has worked in healthcare for so long and has a medical education, it took a while for him to take the classic symptoms seriously.
– I had problems peeing, but i thought it was probably prostatitis. The months went by and the trouble continued and worsened, there was blood in the urine and I started having back pain, but I thought there was something wrong with the kidneys and continued to ignore the thoughts that it could be something more serious.
Late in the autumn of 2014 Håkan had acute pains and was taken in to the emergency room at Sahlgrenska University Hospital. When it was at worst, he could hardly turn over in bed. After taking blood tests and receiving pain medication, he returned home. Two days later he received a call from Andreas Josefsson, resident in urology (read a separate interview with Andreas here).
– I was called to a meeting and told that I had a spread and aggressive form of prostate cancer. It was clearly shocking and at first I did not really think that it was true. But I got plenty of time to digest the information. The response I received was fantastic, professional and empathic.
Participate in a clinical study
It is early morning. It has now been more than three years since Håkan got the bad news. We meet at Sahlgrenska Cancer Center. Next to Håkan is Victor, Håkan’s husband and life-companion, who has been involved in all visits to the clinic; an invaluable support when life is shaky and Håkan runs out of power and energy. Four ears also hear better than two, Håkan says and smiles.
– In connection with the diagnosis, I got the question of participating in a clinical study. I received an information brochure that I read in peace and quiet at home, and I immediately decided to attend. I see it as a privilege to be able to be involved in and contribute to research. As a atient, you are also very vulnerable, it felt safe to have close contact with the medical care and at the same time be given the opportunity for a good follow-up, says Håkan.
The purpose of clinical studies is to help improve quality in healthcare, establish new treatments and develop staff skills.
The study that Håkan participates in is about investigating whether circulating tumor cells in the blood can be characterized and help predict and tailor-make treatment in patients with spread prostate cancer. Which drugs are most effective? What changes have occurred in the tumor cells when the treatment is no longer working?
– In addition to leaving a tissue sample at my first visit, I leave a venous blood sample at every visit, including both common samples and samples for research. It feels meaningful to contribute, the research is concrete and aimed at helping patients in the form of better diagnostics and treatment.
By investigating circulating tumor cells in the blood, researchers hope to be able to develop biomarkers that can predict the treatment best suited for each individual patient with spread prostate cancer early on.
Contribute to future care
Håkan has gone through several lines of treatment; hormone therapy, cytostatic treatment, radiation. He has also tested a new innovative treatment with radiotherapy.
Thanks to research and development, he has gained access to a cold cap and thus managed to keep his hair, despite tough treatments.
– That means a lot, it is hard enough to live with a chronic cancer disease.
There is no cure for Håkan’s disease, there are no treatment options left, but there are therapies that delay disease development and increase quality of life.
– By participating in a clinical study, I hope that my contribution can help move research forward so that patients like me can get effective treatment in the future.
No economic compensation is given, but Håkan thinks that he gets compensation in other ways.
– I have a contact nurse that I can get hold of easy. I also have lots of support from the doctors involved in the research. I often think about how privileged I am. We live in a country with access to advanced care and treatment, without having to pay a lot for it.
Live life to the fullest
Two years ago Håkan and Victor got married, surrounded by friends and colleagues in the Town hall in Gothenburg. They spent their honeymoon in Portugal, one of several exciting places on their list of countries to visit..
– We want to live, take every opportunity. I also try to use every day the best way I can. I go for walks every day, even though I am in pain and have problems with lactic acid in the muscles.
For Victor it has been a matter of course to support Håkan and follow him to all healthcare meetings. He works as an assistant nurse at Sahlgrenska University Hospital and as a relative he has experienced strong support from managers and colleagues and the healthcare system.
– We have been treated so well. I am grateful for being able to join and support Håkan on his journey through moments of sadness and despair. Together we try to live the best life we can, here and now.