Riding a roller coaster: narrative typologies of patients with neuroendocrine tumors

Figures & data

Table 1 A matrix with examples of main themes (step 2), characters (step 3), and typologies (step 4)

Step 2, main themes						Step 3, characters		Step 4,
Patients - age (years)	Struggles	Changes in life	Values	Hidings forbidden thoughts	Acceptation	Character of the person	Character of the story	typologies
Woman – 48	Every day is a burden, and she has to pull herself together to go on with her life The cancer might win	Her life has changed for ever, and so has she as a person Finding a new path for the future	Faith in God Thankful Positive thoughts and new perspective of daily life	Other cannot understand you “Masking” or not showing your problems	In between Not resigned yet	A rational, lonely and insecure fighter	Fighting against cancer is like being in a big war, with a silent enemy that you cannot control	Movements, but struggling to getting balance in life
Woman – 56	Understood the severity of the illness, but was able to fight Took control	No altered life style Has always felt well	Continue life as before Trusting the medical doctors “Winner-team”	Not talking about cancer to her children	Accepted But feel vulnerable	A strong fighter living a normal life in spite of NET	A “sunshine story” of living a normal life with a “silent” cancer inside her	A response to illness interruption but the story seems above the interruption
Woman – 42	Feel lost Hopeless to fight Courage, due to her children	Suddenly change of life Always in the state of confusion and feeling of useless	Try to live a normal life Appreciate the small things	Difficult to start to tell about her illness She is not mentioning cancer	Ambivalent	A confused fighter living through the small things in life	Fighting in a tunnel of confusion Figure out how to deal with it	Movement, but struggling to not feeling useless
Woman – 36	Resigned angry and bitter Painful to think about her children	A life with great illness symptoms	Not be a burden to her family Supporting other patients	To give up The worst is to keep it all inside Not showing her suffering	Not accepted	Fighting alone on a path of sacrifice and tiredness	Living with bitterness and sacrifice, due to a stolen future	Almost given up
Woman – 47	Choked – needed time to understand her illness Pulled herself together	Old life is gone forever All life-areas change along with the illness	Stronger faith in God Actively creating a new life with new demands More aware of pain of others	Forbidden herself to talk about healing	Accepted Clarified relationship to her own death	Rational active fighter changing her life ideals along with her illness	If it were not for the cancer, I would not have found the real meaning of life	Moving forward Developing a new basis and model for living
Man – 57	Stoned – but transformed to deal with the new life Hope of cure	Life not changed very much Appreciate small thing in life	Faith in God His wife’s death is a model Take life as it comes Still much to give	Not possible to think of quitting the life	Accepted	Fatalistic rational fighter using his willpower to live	Value-based decision of why to fight to the end	Moving forward Value and fatalistic based model for living
Man – 53	No expressions of struggling or fights	No changes in life	I feel good, I feel fit, and I have the same desire for getting back to work		Accepted Feeling of being “in good hands” of the treatment system	A passive character with no focus on illness	A story of getting sick, treated and getting back to ordinary life	No illness story

Abbreviation: NET, neuroendocrine tumor.

Figure 1 Overview of main typologies developed from the patients’ letters.

Table 2 Participants characteristics, N=21

Sex of the participants
Female	13
Male	8
Age (years)	36–74
Primary cancer site
Gastro-intestinal tract	11
Pancreas	9
Lungs	1
Other	3
Metastasis (several places)	17
Liver	12
Lung	3
Skeleton	2
Other	3
Years since diagnosis	2–16
Treatments
Surgery	11
Radiotherapy	8
Somatostatin Analogs	10
Everolimus	9
Chemotherapy	3
Chemoembolization	3
Interferon	2