Do you know what is common to Steve Jobs and Irfan Khan? Well apart from the fact that both were brilliant individuals and masters of their field, they also suffered from Neuroendocrine Tumours and died as a result of those.
So what is a Neuroendocrine Tumour?
A Neuroendocrine Tumour or NET is a specific tumour affecting the endocrine glands. Specifically a variant known as the Carcinoid Tumour is very common and lethal. It affects the Gastrointestinal Track (Stomach), Intestine, Lungs, Pancreas, Testicles and Ovaries.
This is the distribution of the NET – Carcinoid Tumours
- Intestines -39%
- Lungs -10%
- Appendix -7%
Both Steve Jobs and Irfan Khan has the variety that grows in the Pancreas. Interestingly NETs strike later in life mostly around the 50s and 60s. Also there is a misconception that NETs are benign, but in reality there is nothing like a benign NET, according to Dr P Jagannath at Lilavati Hospital, this misleading information was one of the reasons Steve Jobs did not aggressively treat his condition when he was diagnosed.
- Surgery- The number one line of treatment seems to be surgery. This is specially if the tumour is detected early and has not spread. Another minimal invasive surgery is Laparoscopic surgery.
- Radiation- If the NET has spread then radiation is the best line of treatment. Both external beam radiation and internal beam radiation called brachytherapy are options that are available.
- Medication- A new medication called Everolimus has emerged on the scene that controls the tumour for a long time.
Innovation in treatment and therapies
1) PPRT – Peptide receptor Radionuclide Therapy – A radio isotope based therapy is showing good result specially in Pancreatic NETs, acts like a magic bullet just eliminating the cancer leaving the other healthy cells intact.
2) DOTA NOC – Scanning method is specifically helpful in treating gastrointestinal NETs.
The diagnosis and successful cure of NETs depends on early detection. The symptoms depend on the site of the tumour. Example in cases with Pancreatic NET, patients might see dizziness and increased fainting as blood sugar levels are not in line with the expectations as the tumour releases Insulin.
In conclusion, India has made many advances in the detection, cure and management of NETs. There is a registry of NET cases with the India chapter of the Asia Pacific Neuroendocrine Tumour Society. Also hospitals like Lilavati, KEM, JJ Hospital are all leading the charge on the treatment of NETs.