Women’s Experiences after Hormone Positive Breast Cancer: Beginning of Radiation to 3-4 Years Post-Radiation

Figures & data

Figure 1. Percent of activity resumption by activity domain and participant.

Figure 2. Important activities by timepoint and activity domain.

Table 1. List of five most important activities by timepoint and participant.

Timepoint	Activity domain	Jane	Judy	Carol	Kelly
First week of radiation	IADL		Keep house clean & in order Work	More frequent sex Vegetarian cooking (learning more)	Help husband in mowing business Strong marriage relationship
	Social participation	Travel Entertaining in home Attending worship & social events		Playing with grandson	Camping/traveling with family Family gathering
	Low-demand leisure	Reading	Listening to music		Quilting and sewing
	High-demand leisure	Exercising	Exercising Sports & Yardwork	Exercising (strength training) Walking
Last week of radiation	Instrumental activities of daily living	Work	Cleaning the house Working Paying my bills Financially supporting my children’s college education Maintaining my household	Eating right	Spending time with family Cooking Working
	Social participation	Family Travel		Church Family Activities
	Low-demand leisure	Reading		Reading	Quilting
	High-demand leisure	Exercising		Exercising	Camping
3-months after radiation	Instrumental activities of daily living	Work	Getting kids into/through college Maintaining my household Managing my finances Staying healthy		Being able to work (continued improvement with hands)
	Social participation	Family Friends Spirituality	Attending college to receive my BSN	Church/Bible Study Family Gatherings Marriage Spending time with grandchild (lives out of town)	Relationship with my husband Going out with family to restaurants, traveling and camping
	Low-demand Leisure			Reading	Quilting, sewing, cooking and other hobbies
	High-demand Leisure	Exercising			Walking Exercising
6-months after radiation therapy	Instrumental Activities of Daily Living	Work	Household chores/ maintenance Care maintenance Working Paying Bills		Working Cooking
	Social Participation	Family Friends Travel		Church/Worship/ Bible Study Family activities (husband and children) Going out with sisters and brothers Traveling	Spending time with family
	Low-demand Leisure			Reading	Quilting
	High-demand Leisure	Exercising	Exercising		Yard work
3-4 years after radiation	Instrumental Activities of Daily Living	Work	Household Maintenance Grocery shopping Cooking my meals	Health (self-care management)
	Social Participation	Family Marriage Travel	Recreational shopping	Spiritual/Religious activities Family Time Babysitting grandchildren
	Low-demand Leisure				Quilting and sewing
	High-demand Leisure	Exercising	Exercising	Exercising	Camping Restoring old furniture Remodeling our house Biking and working out at the gym

Table 2. Demographics, social and breast cancer history.

	Jane	Judy	Carol	Kelly
Age	60	41	59	50
Race	White	Black	Black	White
Marital status	Married	Single	Married	Married
Caregiver	No	Yes 2 children >18yrs	Yes grandchild	Yes 2 children >18 years
Employment Before Tx^1 During Tx 6-months after Tx 3-4 years after Tx	FT^2-Librarian	FT and OT^3 Nurse	Retired	FT-Optician
	FT-Librarian	FT-Nurse	Retired	PT^4-Optician
	FT-Librarian	FT-Nurse	Retired	FT-Optician
	FT-Librarian	FT-Nurse	PT-administrator	FT-Optician
Level of Education	Graduate degree	Associate degree	Bachelor’s degree	Some College
Affected side	Dominant	Nondominant	Dominant	Dominant
Type of breast cancer	ER^5/PR^6 positive, HER-2^7 negative	ER/PR positive, HER-2 positive	ER/PR positive, HER-2 negative	ER/PR positive, HER-2 positive
Cancer stage	III	I	II	II
Surgery	Lumpectomy	Lumpectomy	Lumpectomy	Mastectomy

1 Treatment.

2 Full time.

3 Over-time.

4 Part time.

5 Estrogen.

6 Progesterone.

7 Human epidermal growth factor receptor 2.

Table 3. Kruskal-Wallis test summary of activity resumption over time.

	Instrumental activities of daily living	Low-demand leisure	High-demand leisure	Social participation
n	20	20	20	20
df	4	4	4	4
Median	95	96.5	61	83.5
Kruskal-Wallis H	11.663	6.742	11.398	12.957
Asymp. Sign	0.020	0.150	0.022	0.011

Table 4. Themes and residual physical complaints.

Exercise is important physically and emotionally
Jane	“I just feel, I always felt better when I do. You know my body just feels better when I exercise. Feels worse when I don’t. Actually, I have been swimming a bit more again I do that when we travel. . .I have I have always been a swimmer.”
Judy	“Um, I think just, I think exercise is very important. It keeps your energy level up and your weight down, making sure you’re not stressed out from other things, you know, de-stress yourself. I have to make sure I do that. And I haven’t been stressed, thank God! And just live everyday one day at a time, and I try not to worry about, you know, the cancer coming back, and just live my life.”
Carol	“I think that this has been the best thing I’ve been walking more, and using my Fitbit, and um started off trying to get 5,000 steps a day. . . now I’m averaging about 18,000 steps a day, and um I’m trying to um watch what I eat and I’ve been going to exercise twice a week because they told me I have osteopenia and it was a shocker because I had had the test from two years before and it came out really good that time. And I’m going ‘What in the world is that?’ and of course I know what that is, but they had already told me that I would probably end up with osteoporosis about two months ago. . . I’ve been trying to do the strength training and focusing on pretty much to do things to keep that from getting worse.”
Kelly	“I was definitely not able to do [exercise] and didn’t feel I could do until I had the energy, and feeling like exercising, not that I love exercising, don’t get me wrong. Don’t love it, but the fact that I can do it and that I have started out at being able to barely get a mile on the recumbent bike and now I’m up to eight miles on the regular stationary bike kinda makes you feel like you’re accomplishing something. Plus, my husband and I bought a road bike, street bike, so we’ve been, when the weather’s nice, we go riding too.”
Participation in important activities feels good
Jane	Work’s good, um, work;” and “yea, [traveling] was really good. And we’re actually planning to go with the Rabbi to Israel this June.” “[my marriage is] good [pause] I think…particularly with Ben you know not working as much we have more time.”
Judy	“House maintenance is going well. I do have some help that, um, I’m putting up a privacy fence, well actually I’m replacing my privacy fence because the wood was rotted, so I do have help doing that and I’m just doing it in segments, . . .it’s not so overwhelming…”
Carol	“It really felt good [to work] because it gave me a chance to think about all that other stuff, you just do the stuff. You’re busy, and you know, and if you’re enjoying it then it makes it a whole lot less stressful because you’re not really focusing on what has happened in the past. . . In fact, to me it makes you feel, I mean really like you’re just well, like you’re just really well and healthy because you’re not sick. . . think that kinda makes for a big difference when moving forward.”
Kelly	“the neuropathy. . .it’s, I’m probably back to 90, 95 percent [gone], so there’s still just a little bit of numbness in the fingertips which is kinda nice cause when you stick yourself with the needle you really don’t feel it. . . I finished that quilt and made two or three baby quilts since then and I’m working on. . . a queen-sized quilt and another baby quilt now. And I’m making aprons for Christmas. So, a little bit of everything, refinishing furniture.”
Plans have been made to continue engaging in important activities
Jane	“You know, part of that [having cancer] makes me want to just travel more, do more, and part of getting older makes me want to travel more and do more and enjoy life because you do not know what is ahead of you.”
Judy	“So now I’m finding things at home to do. . . like my fence is rotted, my deck is rotting, so I’m gonna replace that. I need to build a bigger shed cause I have more items in my basement than I want. I need to get them out of my basement and put ‘em in the shed.”
Carol	“You know we call each other a lot more and spend a lot of time together and um we’re planning a trip for probably um about, we’re planning a trip to Rhode Island [we’ve never been there before and they said it’s going have a reunion of all the adult cousins.”
Kelly	“So, it was fun just to get to go, we’re planning on going [camping] again.”
Physical residual impairments change activity participation
Jane	“I get the headache at 4 or 5 in the morning, and if I take medicine right away, I’m usually functional by the time I have to go work, um. It’s not fun, but, and it messes up my sleep. . . I had menopause so I [I thought that I] wouldn’t deal with it [anymore], but, and now I’m unofficially injecting them, injecting the anti-hormone drugs that are messing up my hormones. but it’s messing up my head. But you know, it’s fine, I deal with it
Judy	“Um,[pause] mostly I see it in the afternoon, if I’ve been up um like since early morning, by 2:30 I have to have a nap.[laughs] It’s like I have to have a nap now. But a good nap, my energy level is okay but I do feel like I’m getting just a tad bit more tired…”
Carol	“when I look back it would usually go numb during that time and I’m sure it did but I was busy so. . . but still when you’re home, you noticed it you know, when it happens you are out today you feel like that, and then you know later on that day it’s like oh it’s still like that I mean cause it’s not [chuckles] it’s not, you’re not focused on it”
Kelly	“Yes [I have swelling], in my legs and in my hands sometimes I have it in my face too, but it’s the worst in my legs. . . Um, no it doesn’t cause pain, the side effects of the [anti-hormone] medicine].