Once out of active treatment, women usually attended follow-up appointments with their healthcare team. The usual pattern was to see their doctor every three months at first, gradually tapering off to every six months and then to once a year for five years. Follow-up could include blood tests, imaging, physical examinations and discussion with the doctor or other members of the care team. While many women found that follow-up gave them a sense of reassurance, others were anxious to get away from frequent contact with the healthcare system. A number of women declined certain aspects of follow-up such as mammograms following a mastectomy because they felt they were pointless.
After the experience of intensive and focused care during treatment, the transition to follow-up left a number of women feeling insecure and disoriented.
Thoughts about recurrence
It was not surprising that many of the women we spoke to sometimes thought about the possibility of a recurrence (the cancer coming back). Very often, these thoughts were triggered by aches and pains or minor illnesses like colds or headaches that led women to wonder whether this was a sign of their cancer having returned or not.
Likewise, several women had family members who had died of cancer or who had a recurrence after initial treatment. This heightened their awareness of the issue. Melissa's mother had had a recurrence of her breast cancer so Melissa was grateful when her doctors responded favorably to her request for extra screening.
A number of women understood that they were at higher risk of recurrence because of the type of breast cancer they had. For example, Annie had inflammatory breast cancer which put her at higher risk of a recurrence. She found it especially challenging to deal with this because people generally did not understand what was different about her case.
Thoughts about the possibility of recurrence also contributed to some women's treatment decisions.
Shelley had factored in the risk of recurrence in her decision to have a bilateral mastectomy. Several women pointed out that thinking about the possibility of a recurrence was not necessarily a bad thing if it prompted you to follow up on things. Nalie for example said: "I haven't felt any pain but I'm I guess if I do it would probably be my first reaction 'oh is my cancer back?' you know? Which isn't a bad thing because you know whatever gets me to go to get checked and go see the doctor or because or just get an early treatment if needed I won't wait anymore."
Ultimately, the challenge for most women was finding a way to live with the risk of recurrence without having it take over their lives.