Japan Cholangiocarcinoma Association (Daisy Association)
Executive Director: Masako Watanabe
Editors: Akihiko Ozaki, Yudai Kaneda
This article is translated from Japanese MRIC published on February 11, 2022.
On the occasion of "World Cholangiocarcinoma Day" (February 12) and "World Cholangiocarcinoma Awareness Month" (February 2022), the Japan Cholangiocarcinoma Association (Daisy Association), a Tokyo-based patient support group, will conduct the following activities to raise awareness and understanding of biliary tract cancer.
In collaboration with the Global Cholangiocarcinoma Alliance (GCA) in the U.K., as part of the global campaign "See CCA" (with a Japanese subtitle "What's biliary tract cancer?" to permeate in Japan) led by GCA, we will disseminate basic information and videos on biliary tract cancer through Facebook and other media.
Also, in cooperation with the Cholangiocarcinoma Foundation (CCF) in the U.S., another partner organization of the Daisy Association, we will participate in the CCF's "Light It Green" project. We will light buildings, hospitals, bridges and other structures green, the official color of biliary tract cancer, and post the photos on Facebook and other media.
Biliary tract cancer is a rare form of cancer, with a five-year survival rate of only 5-20%, and is one of the most incurable forms of cancer with a poor prognosis. Although surgery is the only treatment that can be expected to cure biliary tract cancer, it is difficult to detect and is often discovered in an advanced stage. Furthermore, there are only a limited number of anti-cancer drugs available.
For this little-known disease, it has been difficult for patient support groups to make progress in Japan, but thanks to your support and cooperation, the Daisy Association celebrated its first year and a half. In the world, a global community of patient groups and research institutes has been formed in order to overcome biliary tract cancer (prevention, early detection, improvement of patients' QOL and prognosis). To spread this growing momentum into Japan, the Daisy Association will be posting the above information and photos on Facebook during February Awareness Month. If you are interested, please help us spread the word by "sharing" the Facebook posts of the Japan Cholangiocarcinoma Association (Daisy Association). In case you may need, below is our F.B. link.
I am a 5-year survivor of stage 4 intrahepatic cholangiocarcinoma, and in 2020, I volunteered to start the Daisy Association aiming at "supporting patients, supporting research and raising awareness of the disease." We are forming a community that connects all stakeholders, including patients, families, medical professionals and pharmaceutical companies in order to combat this deadly cancer.
Until I was diagnosed with the cancer in 2016, my image of cancer was as in the phrase widely circulated in Japan: "Cancer is no longer an incurable disease." I heard from a friend who had experienced breast cancer that there were way too many anti-cancer drugs and that it was difficult to decide on the right combination of medications. Therefore I was vaguely optimistic that medicine was constantly evolving and that I could benefit from state-of-the-art medicine no matter what. I had no idea that there were intractable cancers. In fact, even though I was shown an image of my tumor of 11cm in diameter and told that it was suspected to be intrahepatic cholangiocarcinoma, I assumed that it could be cured if the area was surgically removed. I was still wondering whether or not to fly the following day for my scheduled 3-week travel abroad and my suitcase was already on its way to the airport. However, my friend, a physician, told me to go to the hospital to which I was referred right away. I rushed there and met an excellent surgeon at the Tokyo Medical and Dental University Hospital, and finally realized that I was in a gravely serious situation with no time to spare. At the crossroads of life and death, the best encounter and choice turned out to save my life.
Then, although I was fortunate enough to undergo a complicated surgery, my tumor spread into my liver a few weeks after the operation. I was overwhelmed with fear as I realized how aggressive this cancer was. However, after three years and three months of my undergoing post-operative chemotherapy until March 2020, fortunately, my cancer was deemed to be in remission, and I am now under observation.
Through my experience, I have a solemn feeling as I’ve realized life is precious and wonderful. Words alone cannot express my gratitude to my doctors. I was deeply impressed by such a high level of professionalism and dedication to patients, and it is a blessing in my life to have witnessed such an amazing world that I had never experienced before.
In the meantime, I learned that there were only three types of anti-cancer drugs for biliary tract cancer. I was shocked by the fact that there still was such an area left behind. That motivated me to think about starting the association after ending the treatment. At that time, I came across the CCF in the U.S. and was inspired by its ambition and advanced initiative. 15 years old, this huge organization with 230 volunteers has not only a detailed patient support system, but also has its own unique network with researchers and raises donations of $150,000 (about 17 million yen) per year to fund their research. Unlike in Western culture, where the spirit of service and tradition of charity are deeply rooted in society, it might not be possible to do the same in Japan. However, I began to wonder what I could do as a patient to help support the research on biliary tract cancer, even if only a little, to render biliary tract cancer a curable disease. Driven by my deepest gratitude to my doctors, who miraculously saved my life, and my desire to pay back society for the blessings they and medicine have gifted me, I decided to embark on this new endeavor – do something about it.
Despite my ambition, however, it will still take some time for us to get down to work for supporting the research that will lead to developing new drugs, which all the patients with this cancer badly need. As I started with the website, patients and their families sent me e-mails one after another writing about their dire plight. I respect the wonderful life history of each person and pray for their good fight against this tough enemy. While I am still trying to figure out what I can do to help patients in need, I am getting advice from doctors and introducing them to appropriate sources of advice according to their situations and problems. I hope to help them improve their environment and conditions to fight against diseases. Indeed, our association can be someone they can ask even small questions which they cannot turn to their doctors for. I wish to light a torch for them in the darkness to navigate this uneasy journey together.
Another important aspect of creating conditions for fighting diseases is to provide correct knowledge about the disease. I believe that this is important not only for patients but also for the general public. With disease awareness positioned as a fundamental role of the Daisy Association, we are working on providing correct knowledge and information about the disease through our website and by organizing seminars by medical specialists.
As mentioned above, it is encouraging to see the collective effort launched globally to raise awareness of this very rare disease. The February awareness campaign will be joined by the GCA’s partner organizations (U.K., U.S., Thailand, and Japan) as well as other organizations from Denmark and Italy. In addition, although the Light It Green campaign has not really taken off yet in Japan, I would like to do my best to expand it in the future gradually. I hope that as many people as possible will learn about biliary tract cancer and lead to early detection of the disease. I also wish to take this opportunity to remember those who sadly were lost to this disease and share our support for patients and families who are currently fighting this ferocious cancer.
Your cooperation and support would be greatly appreciated.