Fang Ting, Taiwan, Province of China
Fang Ting Chou from I’m from Taipei, Taiwan, is sharing her experience with the diagnosis of neuroendocrine carcinoma of the cervix (NEC).
How were you diagnosed and how long did it take?
In 2014, I had some abnormal vaginal bleeding. I first went to a gynaecology clinic near my home, and later I was referred to the Gynaecologic Oncology Department at a medical center for further investigation where I was diagnosed with a rare and highly aggressive neuroendocrine carcinoma of the cervix (NEC). At that time, there were no metastases yet, and after going through a tough treatment, I was lucky to survive.
What treatment have you had and how did it affect you then and now?
I had a total hysterectomy, which was an extensive operation that also included the removal of lymph nodes. I also received external beam radiation therapy (EBRT) and internal radiation therapy, as well as several sessions of preventive chemotherapy. Since my ovaries were also removed, my body stopped producing female hormones, which led to menopausal symptoms such as heart palpitations, flushing, and night sweats.
Since 2014, I have often had to go in and out of the hospital and have learned how to live with side effects after surgery.
What lessons have you learnt along the way (if any)?
In the past 12 years of my illness, I have gained many deep insights. I began learning not to be perfect in everything, but to accept imperfections. I have begun accepting that I can make mistakes, and it’s okay to feel tired or vulnerable sometimes. At the same time, I also started doing sports and making time to do things that make me happy and improve my quality of life.
Who’s been your hero? Perhaps it was you!
For the past 10 years, I have been dedicating my time to NET patient support services in Taiwan. During these years, my family and members of the association have been my heroes! Thanks to their support and tolerance along the way, after 7 years of hard work, I was able to establish the Taiwan NET Patient Association 3 years ago.
I am very grateful that my disease has not recurred or metastasized over the years. For me, it is my greatest blessing to be able to be there for my family and children, to be able to regain my health, and to work hard with a group of patients with a common goal: fighting for the rights of NET patients in Taiwan!
Fang Ting Chou is the founder of The Taiwan Neuroendocrine Tumor Patient Care Association (TNETPCA): https://tnetpca.com/
This story was published with consent from Fang Ting Chou. A video can be watched on International Neuroendocrine Cancer Alliance website: https://incalliance.org/stories/fang-ting-taiwan/