We have attempted to contact 94 breast cancer patients on AET using referrals from medical oncology by the clinical research coordinator on the study, 40 subjects were recruited for the interviews, and 35 interviews were completed and analyzed. Patients who refused to participate for multiple reasons as being overwhelmed by their cancer experience, showed no interest in participation, had multiple cancers or scheduling conflicts.
Table 1 summarizes participant’s demographic and medical characteristics (N=35). The mean age of participants was 52.5 years (SD= 11.73). The majority of the participants where college graduates (74.2%), were White (68.5%), married (57.1 %). 24 women (68.5%) were diagnosed with stage I breast cancer, 6 with stage II (17.14%) and 3 with stage III (8.5%) and the majority were on aromatase inhibitors (65.5%) versus 12 on tamoxifen (34.2 %). On enrollment, 3 women (8.7%) had been taking their medication for less than 3 months, 13 (37.1%) were taking the medication for 3-6 months and 19 (54.2%) were taking the medication for 6-12 months.
Table 1. Demographic data
Variable
|
N=35
|
Percentage
|
Age, years: M (SD)
|
52.5 (11.73)
|
|
Race
|
White
|
24
|
68.5 %
|
|
Black or African American
|
10
|
28.5 %
|
|
Asian
|
1
|
2.8 %
|
Ethnicity
|
Non-Hispanic
|
34
|
97.1 %
|
|
Hispanic
|
0
|
0 %
|
|
Unknown
|
1
|
2.9 %
|
Marital status
|
Married
|
20
|
57.1 %
|
|
Single / Divorced
|
15
|
42.9%
|
|
Widowed
|
0
|
0 %
|
Education level
|
High School
|
9
|
25.7 %
|
|
College Graduate
|
24
|
74.2 %
|
|
Post Graduate
|
2
|
5.7 %
|
Breast cancer stage
|
I
|
21
|
68.5 %
|
|
II
|
6
|
17.14 %
|
|
III
|
4
|
8.5 %
|
Medication
|
Letrozole
|
5
|
14.2 %
|
|
Anastrozole
|
15
|
42.8 %
|
|
Exemestane
|
3
|
8.5 %
|
|
Tamoxifen
|
12
|
34.2 %
|
AI medication duration:
|
Less than 3 months
|
3
|
8.7 %
|
|
3-6 months
|
13
|
37.1 %
|
|
6-12 months
|
19
|
54.2 %
|
Table 2 side effects and the number of patients experiencing the side effects in the transcripts.
|
Participants on Tamoxifen (11)
|
Participants on AI (20)
|
Total (31)
|
Months on med = Less than 6 months
5 (45.5%)
|
Months on med = 7-12 months
6 (54.5 %)
|
Months on med = Less than 6 months
7 (35%)
|
Months on med = 7-12 months
13 (65%)
|
SE Concerns related to medication adherence/belief
|
4 (80%)
|
5 (83.3%)
|
5 (25%)
|
10 (76.9%)
|
24 (77.4%)
|
Sexual health
|
3 (60 %)
|
2 (33.3%)
|
1 (14.3%)
|
3 (23.1%)
|
9 (29%)
|
Hot flashes
|
3 (60 %)
|
2 (33.3%)
|
5 (25%)
|
6 (46.2%)
|
16 (51.6%)
|
Joint pain-Stiffness-Aches
|
2 (40%)
|
3 (50%)
|
6 (85.6 %)
|
9 (69.2%)
|
20 (64.5%)
|
Mood changes
|
1 (20%)
|
2 (33.3%)
|
1 (14.3%)
|
3 (23.1%)
|
7 (22.6%)
|
Fertility
|
1 (20%)
|
0
|
1 (14.3%)
|
1 (7.7%)
|
3 (9.6%)
|
Bone mass decrease concerns
|
0
|
0
|
1 (14.3%)
|
1 (7.7%)
|
2 (6.5%)
|
|
|
|
|
|
|
Reported SE management strategies
|
2 (40%)
|
3 (50%)
|
6 (85.6 %)
|
7 (53.8%)
|
18 (58.1%)
|
Sexual health
- Vaginal Suppositories, Personal lubricant.
|
2 (40%)
|
1 (16.6 %)
|
0
|
2 (15.4%)
|
5 (16.12%)
|
Hot flashes
- SSRI
- Varying the time of medication
- Acupuncture
|
3 (60 %)
|
3 (50%)
|
3 (42.9%)
|
4 (30.1%)
|
13 (41.93%)
|
Joint pain-Stiffness-Aches
- Analgesics
- Varying the time of medication
- Exercise
- Massage
- Physical Therapy
|
0
|
3 (50%)
|
4 (57.1%)
|
7 (53.8%)
|
14 (45.2%)
|
Mood changes
- Exercise
- Deep breathing excercises
|
1
|
1 (16.6 %)
|
0
|
1 (7.7%)
|
3 (9.6%)
|
Side effects of medication and overtime
Table 2 reported a quantified number of patients experiencing concerning side effects and grouped based on the type and length of medication. In general, patients experienced more side effects the longer the duration of treatment. However, Tamoxifen was associated with earlier sexual side-effects and hot flashes during the first 6 months instead of later down the treatment timeline. The joint pain, stiffness, mood changes, and bone loss were reported after 6 months on the treatment timeline. For women on aromatase inhibitors, sexual issues, hot flashes, joint pain, and stiffness were reported more after the 6 months mark. Mood changes, fertility concerns, and bony aches or concerns were generally equivocal between patients in both duration groups.
Coping strategies have been varied, as elaborated in the results section. Patients cited coping strategies for joint pain the most, followed by hot flashes, supporting that they are the most common in breast cancer patients. Sexual health tips were cited less commonly, and lastly, mood and cognitive tips were mentioned the least.
Joint pain
Patients described their personal experience with the pain and how pain persists daily, impacting their daily life. A patient likened it to exercise pains.
“It’s just, everything hurts all the time. I feel like I just exercised yesterday, but it's every day that I am exercising, so we don't even have the benefit of it.” (Tamoxifen, more than 6 months)
Patients shared their struggles and confusion about whether to attribute the pain to the medication or their comorbidities.
“….the joint pain is really my only problem. I have arthritis anyway.…” (Letrozole, more than 6 months)
“…..So how do I know that it was the result of the medication I was on, that's one of the reasons why I had to stop taking Letrozole, so we could narrow down the actual cause of my joint pain and the muscle pain…… “ (Letrozole, less than 6 months)
However, the pain could be so severe that some patients had to pause the medication based on their care team's recommendation
“… my side effects of joint pains are really severe. So, they asked me to stop the medication for about three weeks.” (Letrozole, more than 6 months)
Stiffness
Stiffness represented a challenge to most patients in its often nuanced, a patient described the feeling of stiffness as if prematurely aging.
“…I think the stiffness I get, I feel very tight. My body. So when I go to get up after sitting for a little while, I feel like an old lady….” (Anastrozole, less than 6 months)
It tends to have a progression throughout the day increasing early in the day and, a resemblance to other comorbidities
“…. it's like arthritis, as I'm starting my day, it goes away, I feel like I have arthritis when I wake up in the morning and then my fingers they're cramping and achy, and sometimes I drop things that I don't normally drop.…” (Anastrozole, less than 6 months)
Self-reported strategies for coping with pain and stiffness
Patients employed multiple strategies to cope with their pain and stiffness. Analgesics were often the first approach.
”… I would take Tylenol and that seemed to work…..” (Letrozole, less than 6 months)
others opted for non-steroidal anti-inflammatory medications
“…. As far as the joint pain goes, I do take Advil or Naproxen. I take three a day….”. Anastrozole, more than 6 months)
Some also reported that varying the medication intake time helped with the pain; by taking the medication at night, they avoid the pain by day.
“…. so I take it at night, so it occurs during the night, and I don't have it so much during the day.…” (Letrozole, less than 6 months)
Massage was reported as an effective solution in dealing with joint pain.
“….. I was like, wow, I just get like a massage. I'll just massage myself and um, drink plenty of water….” (Exemestane, less than 6 months)
Stretching and physical activities were helpful routines to reduce pain and stiffness.
“….. Yes. I try to do yoga. Oh, um and workout. Um, I only do that once or twice a week on a studio, and then I try to work out two or three times a week. Walking helps tremendously. Yeah. I try to walk my dogs twice a day….” (Anastrozole, less than 6 months)
Seeking help by the cancer care team, participants shared experiences with non-physician health professionals like physical therapy.
“…I'm not managing them very well. The pain I'm managing by seeing physical therapy. So that's why you see the hand brace. They haven't dealt with this hand yet because I can only deal with one hand at a time.…” …. (Anastrozole, less than 6 months)
Hot flashes
Women reported the quality and quantity of their hot flashes, especially how disruptive they are during sleep and impact on daily activities.
”…. I just get overheated, like really fast. I'll just start sweating and it's bad at nighttime, so I'm, constantly tossing and turning at night, so that bothers me because I have to get up in the morning to work. …..” (Anastrozole, less than 6 months)
“…. Almost everything that I do, it doesn't seem like I have the tolerance to actually do it more than 15 minutes because these hot flashes are coming every 10, 15 minutes or so and you get annoyed….” (Tamoxifen, less than 6 months)
Surprisingly one patient described the hot flashes as chills
“….I'm very, very cold all the time at home. I have to put my heat on 75 because I'm cold, which is a bad side effect. And I don't know if it came from that particular medicine or not, but I didn't have the chills like I do now until I started taking it.…” (Tamoxifen, less than 6 months)
Self-reported strategies coping with hot flashes
The most common technique reported to reduce night sweats is to take the AET earlier in the day
“Taking it in the morning, I felt like, and even if I take it too early in the night, if I take it dinnertime, I feel like I get night sweats really bad” (Anastrozole, less than 6 months)
Selective serotonin reuptake inhibitors have helped.
”… . They did give me Lexapro. I don't know if you know that they gave me Lexapro five milligrams, which is used off label…..”…..
Several women commented on the positive effects they had experienced from receiving acupuncture.
“ …. Um, my main way to work with these is, um, acupuncture. I do acupuncture regularly………” (Letrozole, less than 6 months)
Sexual health is a non-discussed symptom
Many patients pointed out that sexuality was a very private matter and felt uncomfortable sharing that even with their significant others or their doctors. Some did not receive information from healthcare providers regarding sexual issues and complications caused by AET-induced menopause symptoms.
“…Yeah. Because I think that's probably a big concern, I mean, it's uncomfortable to talk to your doctor about that stuff. A lot of times I think women just feel like myself I'll just figure it out myself, or you know, we'll just work through it. I don't know if this is really addressed the way it should be.” (Anastrozole, less than 6 months)
“…..I have, a lot of dryness. So I went through menopause about three years ago, but I really feel that since I've been on this pill I was diagnosed with atrophic vaginitis…..” (Anastrozole, more than 6 months)
Self-reported strategies for coping with physical, sexual issues
Suppositories or personal lubricants were the most effective in improving vaginal dryness during intercourse.
“…. I use K -Y jelly, for sexual intercourse, you know, for relations with my husband. Um, and that works fine for me.…” (Anastrozole, more than 6 months )
Mood changes
Patients expressed mood swings on AET medications, arousing concerns by their spouses.
“….My Husband was asking questions too, because of my mood swing. I have a lot of, you know, mood swings, ….” (Anastrozole, more than 6 months)
Breast cancer survivors deal with a lot of anxiety in general or about minute details in their lives
“….. I was having major anxiety attacks, the doctor finally put me on some Prozac..….”. (Tamoxifen, more than 6 months)
“…Sometimes I can feel myself getting agitated, like I can feel myself getting worked up about something that I don't need to get worked up about.….”. (Tamoxifen, more than 6 months)
A patient described her mood swings through the day and how changeable across the spectrum of emotions they can be.
“……Sometimes I can feel myself getting agitated, like I can feel myself getting worked up about something that I don't need to get worked up about.….” (Anastrozole, more than 6 months)
A patient shared how she was impacted emotionally and mentally
“ …And then I started getting the anger. And then I felt like I could not relax. I could not concentrate….” (Anastrozole, more than 6 months)
Self-reported strategies coping with mood changes
For mood swings, one patient had her physician eventually prescribe SSRIs
“….you need to sit down with yourself and take a break, the doctor finally put me on some Prozac….” (Anastrozole, more than 6 months)
Deep breathing and relaxation exercises help alleviate stress and anguish.
“…deep breathing, just nice deep breath to slow my breathing and just center myself….” (Tamoxifen, less than 6 months)
Routine exercise is a central coping mechanism for many patients dealing with negative moods and stress.
“I also exercise a lot. I exercise every single day. I do stretching, I do some yoga. I might do spin classes on a bike. I might do strength training. If it's nice day outside, I might go for a run. I might ride a mile or two. So that helped me tremendously.” (Tamoxifen, less than 6 months)
Some how a patient found resolve in community involvement and being in service to others
“……. I indulged in that I become a support system to other people. I also support these two little girls who's going through cancer and they are the ones that really get me off my feet…” (Anastrozole, more than 6 months)