Table 4 Assessment of EORTC QLQ-EN24

31

Swelling legs

1.31 (0.75)*

2 (15.4%)*

32

Heaviness legs

1.23 (0.60)*

2 (15.4%)*

33

Pain in lower back and/ or pelvis

1.54 (0.88)

5 (38.5%)

“it was kind of very strange low backpain, which I diagnosed as being dehydrated and my kidneys complaining. But when I spoke to Dr [..], she said it was probably the bone marrow injection that I’d given myself that had stimulated my bone marrow and caused some bone pain.” (pt 6, 57 years, leiomyosarcoma)

34

Urge to pass urine, hurry to get to the toilet

2.15 (1.14)

8 (61.5%)

“Urge to pass urine, yes, every night.” (pt 12, 54 years, leiomyosarcoma)

35

Passed urine frequently

2.15 (0.90)

10 (76.9%)

36

Leaking of urine

1.54 (0.78)

5 (38.5%)

“loss of urine not always but when I need to cough” (pt 2, age missing, leiomyosarcoma)

37

Pain or burning feeling when passing urine

1.38 (0.65)*

4 (30.8%)

38

Urge to move bowels, hurry to get to the toilet

1.54 (0.88)

5 (38.5%)

39

Leakage of stools

1.00 (0)*

0 (0%)*

40

Troubled by passing wind

1.54 (0.78)

5 (38.5%)

“flatulence and therefore stomach pain” (pt 2, age missing, leiomyosarcoma)

41

Cramps in abdomen

1.38 (0.77)*

3 (23.1%)*

“When you say cramps, do you mean like when you go to the loo, or sort of period pain or that sort of thing? So, it’s not just aching? [..] because I didn’t know whether that meant period or diarrhoea cramps, or wind even that you might have. I wasn’t too clear what that meant.”(pt 12, 54 years, leiomyosarcoma)

42

Bloated feeling in abdomen

1.58 (0.79)

5 (41.7%)

“I do get bloated after I've eaten, but I know I've been told to have small, regular meals, but occasionally, if I have a slightly bigger meal which maybe I shouldn’t be doing anyway, I do get bloated, but that doesn’t last a long time “(pt 12, 54 years, leiomyosarcoma)

“So you’re already not inclined to eat so much that you’re full, because then you’ll get such a… You also don’t know how your body should do it, so then you don’t know at all how to do it anymore. So you’re already not inclined to eat until you’re so full that you think like, okay I’m full. Because then it is too heavy.”(pt 10, 55 years, adenosarcoma)

43

Tingling or numbness in hands or feet

1.23 (0.44)*

3 (23.1%)*

44

Aches or pains in muscles or joints

1.77 (0.60)

9 (69.2%)

”I get in the upper body [..] and that lasts for three or four days, and mainly around the time I start with injections. So, it starts about three days after the treatment.” (pt 12, 54 years, leiomyosarcoma)

45

Hair loss

2.00 (1.41)

5 (38.5%)

“I was originally on doxorubicin; I could literally pull my hair out and it would… I would just hold it and it would come out in chunks.”(pt 12, 54 years, leiomyosarcoma)

46

Different taste of food and drink

1.77 (1.17)

5 (38.5%)

“Yes, it all tastes like bread or something. Yes, it feels just like a… It’s also different in your mouth. It really feels like a ball of flour instead of.. You could just as well eat porridge, because I just can’t swallow it. It just takes effort. Your taste is less.”(pt 8, 54 years, leiomyosarcoma)

47

Felt physically less attractive

2.31 (1.10)

9 (69.2%)

“It’s that my stomach sticks out with the tumour and I'm quite aware of that and I feel a bit self-conscious and try to wear clothes that cover it up, and when it’s not… I'm sure no one does notice, but I just feel unattractive because of that. And obviously, because I'm going a bit bald now.” (pt 12, 54 years, leiomyosarcoma)

48

Felt less feminine

1.92 (1.12)

7 (53.8%)

“Yes. If you don’t have hair anymore, then you actually are less feminine I have to say.” (pt 8, 54 years, leiomyosarcoma)

“And I do still have my eyebrows and eyelashes. I would say if I lost those, the answer to that question would be different,” (pt 12, 54 years, leiomyosarcoma)

49

Interest in sex

1.69 (0.75)

7 (53.8%)

50

Extent sexually active

1.69 (0.86)

7 (53.8%)

15

“I think that’s because I’m worried it’s going to make me start bleeding again “-(pt 6, 57 years, leiomyosarcoma)

“emphasize fear of having sexual intercourse”(pt 4,58 years, rhabdomyosarcoma)

51

Vagina felt dry (n = 7)

3.00 (1.29)

6 (85.7%)

52

Vagina felt short/tight (n = 7)

2.00 (1.00)

4 (57.1%)

53

Pain during sexual activity (n = 7)

2.14 (1.22)

4 (57.1%)

54

Sexual activity was enjoyable (n = 7)

2.29 (1.11)

5 (71.4%)