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Story of Eltjo Heddema
Eltjo Heddema

This is about my wife Esther who was diagnosed with Carcinoma of Unknown Primary (CUP) and whose treatments were not successful. 

The biggest challenge was getting diagnosed. Esther visited our GP with complaints about pain and energy loss however the GP did not believe there was a ‘serious cause’. Blood tests and physiotherapy etc. did not solve the problem; it was even suggested that it may be a mental health issue. The pains continued to get worse and we made several visits to the emergency department (somehow this always occurred during the weekend!). No diagnosis could be made and eventually the pains subsided, and we went home again. After our fourth visit to the emergency department, Esther was finally admitted thanks to the personal intervention of one of our friends who is a physician working at the hospital. After 3 weeks and several examinations, taking a biopsy of the enlarged lymph nodes was very challenging as they were very close to vital organs, a diagnosis was finally made: Carcinoma of Unknown Primary. 

We had access to all kinds of medical care, and we even used our private contacts, yet diagnosis still took a very long time. This was partly caused by the type of cancer (which is harder to diagnose), partly because the GP and hospital doctors were not convinced there was a serious cause (despite Esther’s insistence) and partly because of the very sequential approach in diagnosis. 

When we finally talked to an oncologist at yet another hospital, she told us there were two treatments possible, however she was not sure if either of them was covered by the insurance. A harsh introduction to the world of health economics. We ended up switching to another hospital, the Dutch national cancer hospital, where they could offer more treatments and Esther underwent relatively common radiotherapy (although maximum doses at maximum area) in combination with common chemo. Unfortunately she reacted very badly and had to stay in the hospital for weeks as she was constantly sick, losing a lot of weight) and suffering with a lot of pain. The pain management treatment was not very successful (and maybe they could have considered other alternatives, although I am sure they did everything they thought could help). After Esther finished treatment and recovered, having lost around 20kg, cancer was no longer visible on scans. Unfortunately pains recurred after about 3 months and the scan showed recurrence so she started another combination of radiotherapy and chemo but stopped after a few days due to unbearable pains. 

No other treatments were possible (the biopt was too small to do further analysis such as Whole Genome Sequencing etc.) and we elected not to seek further treatment as the negative impact would outweigh the quality of life. Esther lived for another 9 months with a morphine-pump (longer than predicted) and passed away when the pains became unbearable even with the maximum dose of morphine. 


Eltjo Heddema