Table 3.

Themes, Sub-themes, and Direct Quotes.

Themes	Sub-Themes	Quotes
“Feeling like a different kind of woman”	Physical Changes
	Cognitive Changes	I completely forgot what I was saying, too, or what the question was. The brain fog is still really a huge side effect.
		I feel like what I experienced was so far beyond what I would have classified as brain fog. I felt like my brain was decimated.
		[My] brain fog was solidly two or three years long. . . I carry post-its [to help memory].
		I dealt with the severe brain fog, like you were talking about for three or four years after chemo, and I still have terrible insomnia.
	Weight Changes	Cut off my tits, I don’t care. But the 60 plus pounds that I gained in the past five years has been horrifying to me.
		I’m not having any success with losing weight at all. I can go on like a fad diet. . .[eat] a thousand calories a day and the best I can do is maintain weight.
		[The] weight gain [is] so frustrating because I feel like I didn’t earn it. Like it’s not my fault I got sick.
		I lost a lot of weight because I couldn’t keep anything down on my stomach and now, it’s like, your taste buds are coming back so now you’re eating. . . [But] just a little bit of pepper. . . feels like my mouth is literally on fire. . . I can’t eat anything.
	Sexual Changes	It’s a lot that they don’t tell you up front. . . they don’t say you’re not going to have a sex drive, you’re not going to want to be touched. . . I told my husband, “I don’t feel like a woman anymore.”
		. . .They didn’t talk about dryness or atrophy or things that were really pretty important to me. . .To me, those are the things the most awkward, weird things that nobody wants to talk about. . . Those are the things are most important to mention.
		But at the same time you’re going to have zero sex drive and you’re going to have dryness and all of these other issues. . . It’s not just hard on you. It’s hard on your husband too.
	Emotional (Who is this new emotional self?)
	Attempts to define normal	I don’t know when we get back to the norm or what really is the norm, and when we really get back to ourselves and. . . this is our new self.
	Loss of Momentum & Purpose	And I think with oncology, the focus is on treating the cancer. You’re alive now, but okay. And then what, about quality of life?
		. . .I got really depressed, and I didn’t know what to do with myself. . . “What should we do with ourselves now that our treatment was done?”
		I think that if there was a little bit more support around, it’s not just common, but it’s nearly expected to be really, really anxious, pretty depressive, struggle with your sense of purpose.
		When I [was] asked what was my purpose that’s when I snapped because I was trying to figure out my purpose after the cancer.
		It was just not the fear of not knowing. The fear of not knowing what to do next.
		So, just something to not only say yes, push through, you’ll make it through the treatment, but on the other side of it you have to still choose to live.
Lingering emotional trauma
	Active Treatment	And we always, I think for most of us survivors it’s in the front of our minds, not the back. It’s in the front of our minds of is it going to come back or when is it going to come back.
		I really feel like I have PTSD from this experience and I was. . . super traumatized by it.
		I think a lot is focused on the beginning and they throw all these resources at you. But really just until now I’m processing some of the emotions from the past year.
		It really like reared its head when I came back, I have to go back every month for my Lupron shot. When they changed giving me that from an office back up to the chemo suite, and I was back up in that area for the first time, full blown panic attack.
		And so there was just sort of things where it’s like, “I was not prepared to deal with this
		memory today and it came on really quickly." [The] trauma from the whole experience of chemo, going through the diagnosis, processing all that fear and that anxiety. . .
		The red devil [Adriamycin] was the worst for me. I got hospitalized like three out of the four times I did it. And you had to chew ice every time you had it. And then I couldn’t even use ice for like a year.
	Survivorship	I would’ve liked to have been prepared even just a tiny bit for entering survivor phase, the crippling depression that comes with that. Didn’t even have the tiniest clue to kind of expect that or be on the lookout for it. . .
		I noticed my depression didn’t happen until after treatment. While you’re fighting it’s like you’re into fighting and you’re fighting, fighting, fighting. And then after it’s over it’s kind of like, “Okay, I’m not fighting anymore so what do I do now?”
		[Other new survivors] kind of don’t want to hear that part [the depression], they’re just so excited that they made it to the survival part that kind of bringing that up feels like a buzz kill in a way.
		Your side effects from your chemo treatments, sometimes you don’t know what to look out for long term, same thing with anxiety and depression later on. You’re not really given those tools to identify and just say, “Hey, I need help.”
		I went to talk to her [counseling] about my survivor’s guilt. . . they weren’t very helpful.
Recommendations
	Services Needed	Cancer centers should have onsite psychologists, like a health psychologist that’s onsite, and that you just have a standing appointment with them as part of your treatment plan.
		I think that should be integrated as a standard thing. Understanding that this is an extraordinary life circumstance, and you’re going to have extraordinary emotions because of it. . . we have [to have] somebody that can help us figure out what to do.
		If they could hook you up with somebody who was in the survivorship program already, who had already gone through something similar, I feel like to me that was one of the biggest assets.
		I don’t think there was enough resources for us here. I feel I had to go through it blindly.
		Some of that educational material stuff [needs to include] how there can be a range of [side effects]. . . it would be helpful to have the materials just have a little bit more the continuum.
	Content Needed	I was diagnosed at 38. . . I want to know what 40 years is going to look like, what 60 years is going to look [like] especially with having kids.
		I would love to know what the long-term side effects are of a lot of my treatments because I think that they talk about the side effects of things that are happening immediately. I know [sexual health] was an after discussion with my oncologist. . .it would have been nice to know just the aftermath of it all.
		They didn’t mention anything about intimacy and if you’re dry.
		But just kind of up front some of the things that may happen and that you may experience. Like getting to know your body again because it is different now.