My name is Nicholas Rotich. I am a Kenyan. 47 years old. Hobbies: Farming and environmental conservation.
How were you diagnosed and how long did it take?
I had abdominal pain on and off sometimes – associated with diarrhea for about 10 years. I visited several doctors in Bomet County including Tenwek Hospital where I was treated severally for peptic ulcer disease. The symptoms worsened even with treatment for peptic ulcers. When the symptoms worsened I resorted to herbal medicine. The symptoms subsided a bit but did not resolve completely.
Later on, in September 2019 I went to Tenwek hospital and was attended to by a doctor who requested for an ultrasound to be done. The ultrasound showed a mass in the liver. The mass that was seen on ultrasound prompted the doctor to request a CT scan. The CT scan showed a mass in the pancreas measuring 7.5 by 5.4 by 10cm and another one in the liver. A biopsy was done on the liver which showed pancreatic neuroendocrine tumor.
The diagnosis was a shock for me and my family though I had suspected all along that was being treated for a wrong diagnosis of peptic ulcers. Emotionally and spiritually, I was affected so much. I tried looking for information about neuroendocrine tumors from the doctors but what I was getting was very scanty. I had heard about stomach, prostate, colon cancers but nothing about neuroendocrine. The doctor informed me that the results, which had been sent to Nairobi, were incomplete and I had to wait for two weeks before a treatment plan was given to me that included monthly injection with a drug that was costing me 280,000 Kenya Shillings per injection. Being a teacher, I was lucky to be having an insurance which paid for my treatment. I have seen many patients who do have insurance suffer a lot because this drug is quite expensive.
It took ten years for me to be diagnosed with neuroendocrine tumor of the pancreas since the first symptoms started. And it was spread to the liver.
What treatment have you had and how did it affect you then and now?
Treatment: I receive monthly injection with Octreotide (Sandostatin). Initially started with a drug that was costing 280,000 Kenya shillings and Benard informed me it could have been PRRT but it was very expensive. Though Octreotide is cheaper compared with the PRRT, it is above my ability if I were to pay cash. I occasionally have to pay cash when the insurance delay paying the hospital and the drug has to be imported.
Effects: Some of the effects that I have had after starting the Octreotide injection include burning sensation on the feet, loss of appetite, tiredness, food being tasteless, abdominal discomfort, nausea, abdominal rumbling (the talking cancer), reduced sexual urge, swelling at the injection side, swelling of the testes.
The side effects were initially intense but now they have subsided a little bit.
What impact has the diagnosis had on your personal life?
The diagnosis has impacted so much on me. Some of the challenges include:
– Financial challenges – the drugs are expensive and have to be imported.
– Negative impact on work- after injection, I usually feel tired and have to miss work.
– Stigma – people sometimes talk negatively about my diagnosis with many expecting that I should have died a long time.
– Future uncertainty – my family is scared about my diagnosis and are uncertain about my future with them.
What lessons have you learnt along the way (if any)?
Early check-up and getting the right diagnosis are important. Doctors should have low threshold to request for tests including CT scan, ultrasound and biopsy when uncertain about diagnosis. I wish there is a blood test that be used to diagnose this cancer at an early stage just like you can diagnose a kidney problem though blood test. As a teacher I am privileged to have an insurance cover but sometimes the insurance takes a long time to remit money to the hospitals and I occasionally skip treatment. The Octreotide is not always found locally in Kenya but is usually imported. There is still a lot of ignorance about the disease.
It is difficult to diagnose the disease because it presents like other diseases e.g. peptic ulcers and you end up being treated wrongly.
Who’s been your hero? Perhaps it was you!
My heroes are my immediate family members, the church and relatives who have in several times fund raise for me to get treatment. Tenwek Mission hospital doctors and administration like Felix Kibuttit, Moses Tonui.
Did you get any help from a patient organization during your journey?
I have not been able to get financial support from any organization and I am appealing for assistance from well wishers for me to continue to get the treatment and extend awareness to others. I am a member of African Zebra Cancer Network support (AZNETS) and the group has been amazing to me. I have received education materials and have been visited by the founder of AZNETS, Benard to encourage me and my family.
How are you now?
I am getting on fairly well as the treatment continues.
