Follow-up care and the risk of recurrence
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.
Melissa would have appreciated a more structured plan for moving forward.
I didn’t feel there was a plan, I just felt kind of left to my own devices on how to move forward. What’s the next steps were going to be. I felt that for 4 to 6 months, I had this handholding and I had these schedules. I had everything […]
Margaret was uncomfortable about being discharged from care; her cancer had not been detected through imaging and she was worried about it coming back undetected.
But one of the things that still bothers me, once they discharge you from the cancer hospital care there’s not a lot of support out there I find. Interviewer: What kind of support do you feel you needed at that point when you were discharged? When I finished my medication […]
Christa's concerns led her to insist on additional follow-up after being told it was no longer necessary.
You know the I had a bit of follow-up but I felt like they kind of they get rid of you kind of quick there (laughing) at the (name cancer institute). You know like I felt I had all of this attention, all of this excitement and buzz and everything […]
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.
Lorna thought about the possibility of recurrence when she had sinus troubles.
I had a really bad cold all winter in my sinuses and I was almost convinced myself that it had to be cancer… because how can you not? Especially when they kept track of you for so close, for so long. I think everybody I’ve talked to, that’s gone through it thinks like that. Right away that’s what it is. And, of course a lot of our friends have cancer in different areas too… so you try not to, you try not to dwell on that my goodness.
May-Lie wondered whether her cancer had returned when she had pain in her bones. She had a friend who had died in this way.
At one point, I had pain in my bones. Aïe, it was painful! It was painful! I said: “I have bone metastases, it’s unbelievable.” And even my friend that died, she had back pain, she was suffering a lot because of that back pain and it was metastases. And before she knew that she had breast cancer… well it is because she went to the hospital because she had back pain. But she underwent tests, a CT scan* (Computerized Axial Tomography Scan) and that is how they found out that she had metastases. So when I had back pain, when I had pelvic pain, when I had… I said: “I have metastases, it is possible! I have metastases, ok.” Well. And it was the effects… I had two bone scans, twice. Twice it was negative because it was the side effects of the medication. And finally last year, they changed my medication because… pfff! It didn’t make much sense…
*CT scan: Body scan that produces cross section images of the body’s internal structures.
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 favourably to her request for extra screening.
Julia had a family history of cancer. She is trying to strike a balance between being vigilant and maintaining a sense of optimism.
Well, it makes me be careful. Again, it’s sort of have this low Oncotype which is very optimistic but I also have a family which there’s not a lot of cancer in my family. But, there’s nobody in my family that’s had cancer that hasn’t died from it and fairly […]
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.
Annie had support through a Facebook group involving women in a similar situation.
Whereas in the English group, there are some; so I needed to have hope. Because with a recurrence rate of 50%, and a survival rate of 50%-40%, it is like… not easy to have hope. So I needed to have some examples. Interviewer: And how do you live with thinking […]
Gaye was also at higher risk of a recurrence. She asked her doctor to stop mentioning this at every visit.
Every week I had to go to the hospital or every second week and see the cancer doctor. Every week I would go, he would say to me “Gaye, you know you’re really high risk to reoccur.” And I told him, after about the second time, that I didn’t want […]
Carol had been told that she would be closely watched for 10 years. She felt this was a long time to live in a state of fearfulness.
I think for me, also, the scary thing is that I have to be followed closely for 10 years. That means, my chances of having it again for 10 years are elevated. That’s, that’s scary, that’s scary, it means it’s not really over when the chemo and the radiation is […]
Thoughts about the possibility of recurrence also contributed to some women’s treatment decisions.
Joanne stayed on hormone therapy longer than she would have liked because she wanted to feel that she had done all she could to avoid a recurrence.
January was 4 years that I have been on Tamoxifen or Aromisin. So I said… that is 4 years, this January, just passed, I was going to go off, I was still blaming the fact that I was taking these drugs for all these body changes that was going on. I had my gynaecologist tell me no Joanne some of these effects will still be there. It is not the Aromisin and not the Tamixifen. So I really wanted to go off just to see. Anyway, I had my friends talking to me to stay on it for the fifth year because most research says 3 to 5 years doesn’t make much difference. So I stayed on it as they said “What happens if your cancer comes back in 2 or 3 years? Would you be wondering if you stayed on the drug for one more year would you have to not have it come back?”
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.
Like many others, Jocelyn recognized that there was nothing she could do about the uncertainty. Her approach was to try to live her life as normally as possible.
It could come back. I do think about it. You can’t, now things are different. Before when something was wrong with me I’d go “Ah it’s fine it’s nothing.” Now something’s wrong with me I go to the doctor right away and I’m like “What’s this thing.” I had a […]
Review date: 2019-09