Introduction
Material and methods
Design
Sampling strategy
Pseudonym (age) | Type of surgery | SN | ALND | RT | CT |
---|---|---|---|---|---|
Emily (32)* | 2015: bilateral mastectomy (one prophylactic) 2017: delayed implants, 1 failed | x | x | x | |
Patty (43) | 2017: lumpectomy | x | |||
Violet (44) | 2015: bilateral mastectomy, delayed implant reconstruction | x | x | x | |
Maggy (45)* | 2009: unilateral mastectomy, 2017: prophylactic unilateral mastectomy, delayed DIEP flap | x | x | ||
Susan (47) | 2016: prophylactic bilateral mastectomy + immediate implants, both failed | ||||
Liz (49) | 2010: bilateral mastectomy (one prophylactic), 2012: delayed DIEP flap | x | |||
Grace (50) | 2012: unilateral mastectomy | x | x | x | |
Jessica (51)* | 2013: prophylactic bilateral mastectomy, failed implants, 2014: DIEP flap | ||||
Marianne (52) | 2004: unilateral mastectomy | x | x | x | |
Audrey (53) | 2013: lumpectomy | x | x | x | |
Evelyn (53)* | 2015: unilateral mastectomy, 2017: LD flap + implant + nipple | x | x | x | |
Stacey (54) | 1989: unilateral mastectomy, 1998: delayed implant reconstruction | x | x | x | |
Jill (58) | 2009: lumpectomy | x | x | ||
Norah (59) | 2004: unilateral mastectomy | ||||
Rosie (59) | 2014: bilateral mastectomy | x | x | x | x |
Lisa (61) | 2017: lumpectomy | x | x | ||
Hannah (62) | 2015: bilateral mastectomy (one prophylactic), implant reconstruction + nipple | x | x | x | |
Lily (63)* | 2004: lumpectomy, LD flap, 2014: unilateral mastectomy, 2016: PAP flap + nipple | x | x | x | |
Lucy (63) | 2017: lumpectomy | x | |||
Leah (65) | 1995: unilateral mastectomy | x | x | x | |
Margaret (65) | 2016: lumpectomy | x | x | ||
Emma (66) | 2006: lumpectomy, 2014: bilateral mastectomy (one prophylactic) | x | x | x | |
Katherine (66) | 2017: lumpectomy | x | x | ||
Suzy (66) | 2004: lumpectomy | x | x | x | |
Charlotte (76) | 1994: lumpectomy, 2017: unilateral mastectomy | x | x | x | |
Betty (77) | 1980: unilateral mastectomy, 1982: tumor excision + delayed LD flap | x | x |
Data collection
Data analysis
Results
Patient characteristics
The exploration of themes
Theme 1: Physical and sensory symptoms
Emma: “But, that it would look like this, that I didn’t fully realize.” “Ok, and what does it look like?” “Well that the scars run from here to there.”
Betty: “And why do you feel mutilated by those scars? Can you tell me something about that?”“The operation of this nipple didn’t succeed, that’s such a big piece…That breast is completely disfigured. And the other side… I can live with that somehow, there I have all kinds of scars, but the real breast is still there. So well, it is only scar tissue you see.”
Marianne: “It’s a pretty fine line and honestly not that much trouble […] it healed very nicely, the skin has tightened and it all looks neat and good.”
Liz: “If you do something, or fall, you will get such a cramp. You feel like it might come loose [..] So it’s such a tight feeling, that when you make an abrupt movement…for example, when I walk the dog and he encounters another dog and he starts pulling, then it’s like you’re pulled apart, or that it springs open.”
Theme 2: Impact of scar symptoms
Physical functioning
Leah: “Really, to just reach out like that is very difficult and very painful and it doesn’t go so well either. So in everyday life you come across a whole lot of things, in which you can actually not use that left arm in the same way as the right one.”
Lily: “Do you feel any inconvenience?” “No! no.. You see, if it doesn’t work with the one arm, then I will do it with the other arm!”
Emotional functioning
Liz: “Because it has been withdrawn in a certain way [..]” “What do you think about that?” “When I look in the mirror? I think that’s ugly! Yes, it doesn’t look good.” “What do you see?” “Yes, if I look in the mirror ... Now I’m starting to cry... Then I only look at the scar. It’s ugly.”
Leah: “Well, it’s a part of my life now. But there it is, there is always some sort of raw sadness and it is so long ago! But that still remains…” “Are you mainly talking about the loss of your breast?” “Yes, both actually, but also the loss of mobility. I’m used to doing a lot, I was very agile in my shoulders. And now I’m not anymore, I think that is also restricting.”
Susan: “Only if you try to grab something and then you feel something tearing in such a way: then you are actually tempted to let everything fall out of your hands. Uhm, that restricts me. It’s also a part of fear, because that pain is just not pleasant.”
Social functioning
Liz: “When I make certain movements, it pulls. The fact that I’m limited in my actions, which I did not have before... for example when I went for a swim... and that’s actually also the case with skiing […].What makes you so emotional? That I did not have it before…that you could still do all those things... it’s limiting.”
Lily: “I don’t have problems with someone else looking at it. I will also walk into the sauna…they can look if they want to.” “Have you ever been to the sauna?” “Yes... and yes I didn’t pay attention, I don’t care! *laughter*.”
Cognitive functioning
Grace: “It’s not that I suffer from it all day, but you do have daily reminders. Yes, that it’s there: then I feel it or it feels very tight.. and of course the cramps: the cramp I find very annoying. I really don’t like it, because it actually does hurt quite a lot.”Liz: “So I am very conscious when I go somewhere or have a party or dinner... what kind of clothes to wear? And how high? A shirt underneath? So it’s always something you have to think about. Which I didn’t before. I used to see something on the hanger and think, yes, that’s what I’ll wear, but that’s no longer the case.” “To what extent do you suffer from that?” “That I think about it all day long? Well sometimes it determines the majority of my day.”
Environmental factors
Lisa: “It makes a difference that I have a partner who is also very…that is also important: that he also deals with it naturally.”
Emily: “If it’s colder [...] then it really affects my scar, a little like muscle pain plus.”Emma: “I think it’s really awful, in the winter I don’t mind so much, then I can wear clothes to cover up. [...] Wearing a t-shirt in the summer: I think it’s really terrible.”
Theme 3: Personal factors
Maggy: “It may sound crazy but because it falls so neatly under my clothes, I don’t really mind it.”
Susan: “It just has to be released *talking about adherence*. I would really be so happy. I’m just looking forward to the operation. Because then I might be able to move properly again [...] than I’m no longer dependent on someone else.”
Evelyn: “Yes I’m scarred for life and I have to deal with it. I can be down in the dumps, but you shouldn’t do that. Yes, I have scars: that’s a part of it.”Betty: “You just have to learn to accept that it looks like this. That it hurts. And that’s hard for me. I have a hard time accepting things. That’s very difficult.”
Theme 4: Impact of scar interventions
Rosie: “I find it tiring. It’s for the best, but I find it tiring, I would rather do something fun, but I know it’s good.”
Suzy: “No. No never. They never tell you anything about the scars. At least not to me!”Maggy: “Yes, they did, but not how to massage them. They told me to keep it moisturized and to massage, but how to do this? I really have no idea. I was never told how to do that. I just make it up?”
Theme 5: Change over time
Rosie: “In the beginning I had a lot of trouble. Yes! Maybe even more […] the pain was more extreme, yes worse, certainly just after surgery.”
Liz: “I must honestly say that I’m at some point now, that there is a certain acceptance. Which I didn’t have before. Now there’s a certain acceptance because it’s been a few years, it’s just part of me now.”