Name: CHEN, MEI-YING, Female
Age: 65 years old
Hobbies: Hang out with friends and do outdoor activities.
How were you diagnosed and how long did it take?
It took almost 6 years to be correctly diagnosed with NET. I was diagnosed with NET in duodenum and pancreas in 2011. When I was 49 years old, I had backache in the evening every day and it had got so severe I could hardly sit straight. Later I had diarrhoea and I vomited frequently. I had little sleep because I had to go to the toilet every 15-20 minutes. I went to the doctor but he could not find the reason and just said that could be irritable bowel syndrome (IBS). The doctor prescribed medicine for me and told me I had to relax.
I did not get better so I went to 4-5 different doctors but always received the same diagnosis and medicine. I even got melena and felt very frustrated and anxious, I had been wondering what has actually happened to me. Almost 6 years later I finally got the correct diagnosis at the medical center after 3 days of complete examination at the hospital.
Luckily I had surgery to remove the tumor of the duodenum and I got much better. I also joined a clinical trial later. The only problem is my CgA is still high. So the doctor continued to help me and found there was a tumor in my pancreas. After surgery I almost recovered. It has been 12 years and now I just need follow-up appointment every year.
What treatment have you had and how did it affect you then and now?
Surgery and SSA treatment under a clinical trial.
What impact has the diagnosis had on your personal life ?
The greatest impact was emotional and psychological because I went to so many doctors but couldn’t find the reason. I felt very frustrated and anxious. In the last decade most doctors knew little about NET, so I had to find information on the internet or join some conference. Some reports said there is only few months survival rate and it was a great shock and blow to me.
What lessons have you learnt along the way (if any)?
- Never give up: I never gave up seeing doctors and I actively cooperated with doctors. Although it took almost 6 years to diagnose, I felt relaxed when I heard “NET “because finally the reason was found.
- Optimist attitude: I still worked during treatment because I wanted to maintain a normal life. After I got retired I often went outdoors and hung around with my family and friends. It is important that we don’t get trapped in the “sickness “and try to maintain our lifestyle as well as possible.
Who’s been your hero? Perhaps it was you!
I got some new NET patient friends and we encourage each other often. To me they all are my heroes in fighting cancer!
Did you get any help from a patient organization during your journey?
I really appreciated HOPE FOUNDATION for Cancer Care. They established the NET community and held many activities to help us get the right information. Also they built the first NET website in Taiwan to raise awareness of NET.
How are you now?
I am so grateful that I am almost recovered and hope I can share my experience with those in need. And I hope we can try our best to raise awareness in the society including patients and medical staff. So that patients could get a correct diagnosis and timely treatment.
