Table.
Representative quotes from each barrier type identified*
| Specific Barrier | Representative quotes: |
|---|---|
| Emotional (n=89,064) | |
| Anxiety (29%) | I get my results tomorrow too. I’m getting more anxious by the minute. |
| Fears (35%) | I am so afraid that I could cry. |
| Denial (13% | I have no time for potential troubles, having enough actual ones |
| Depression (23%) | I’ve never been this depressed in my life. I really don’t know where to begin. |
| Beliefs (n=81,319) | |
| Misperceptions (29%) | Breast cancer does not run in my family so I am not at risk |
| Health care preferences (30%) | We don’t go to the doctor until we’re very sick. |
| Spiritual/Religious/Cultural (41%) | Whatever our religious beliefs, if you believe in a great Creator, this is the part of the plan and my plan for health. |
| Breast cancer is a white woman’s disease. | |
| Physical (n=69,702) | |
| Side effects (40%) | The digestive effects of this chemo are horrid |
| Limitations (31%) | Breast cancer treatment just destroys the body? It feels like it will is simply not possible to ever regain any fitness once you’ve lost it? |
| Body change (29%) | My hair is becoming so thin and going away. |
| I won’t feel like a whole woman anymore. | |
| Resources (n=58,085) | |
| Insurance (49% | I have no insurance and have just been diagnosed. What are my options? |
| Costs (33%) | I’m not sure I can afford to have breast cancer. With the hormones and all the meds, I’m gonna go broke. |
| Logistics (18%) | I only have access to public transportation and it’s so hard to coordinate all my appointments |
| I don’t always have someone to watch their kids when they go in for an appointment. | |
| Health Care Perceptions (n=34,851) | |
| Poor communication (36%) | My oncologist doesn’t tell me anything. I get most of the important info and instruction from his RN |
| Negative experiences (21%) | They were rude the whole time, made me feel ignorant and I am not sure I want to proceed with it!! I had my doctor switched to a woman doctor so I wouldn’t be as embarrassed or feeling violated. |
| Trust (22%) | I don’t “trust” doctors anymore, but am confident my current care team is competent. My last one wasn’t. If you have doubts go elsewhere, preferably a cancer center. |
| Accessibility of services (21%) | The doctor’s office is so far away and inconvenient, it’s almost impossible for me to get there. |
| Relationships (n=27,106) | |
| Intimacy (35%) | …it saddens me that there are men out there who cannot support their wives through this terrible ordeal. |
| Friends (34%) | A life changing diagnosis of breast cancer has shown me who my friends are and who I can count on in my life. |
| Children (31%) | (This has) caused feelings of worry and guilt about my role as a mother. |
| Duration/Process (n=26,987) | |
| Regime (41%) | I had 33 rads, 28 reg and 5 boosts. I took a 10 break for vacation about mid-way through but still was tired. |
| Duration of treatment (23%) | I’m not sure if I can handle this anxiety for results for five more years. |
| After effects (19%) | I just can’t take the time off…I’m afraid I’m going to lose my job. It’s my life and I need it. |
| Complexity (17%) | My cancer treatment didn’t come easily…it involved of a complex series of treatments and was a very difficult process. |
*
N’s represent the numbers of unique posts expressing these sentiments