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.
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 kind of mapped out for me, with respect to my treatment, and then they just kind of release you into the wilds.
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?
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 going around me and then you know after that they’re like okay you’re good to go. And it’s like well do I need to have follow-up like have tests? And they’re like no you should be fine. I’m like really because I don’t know I mean especially for the first 5 years like they say that’s when recurrence can happen and I shouldn’t have to now again have to make you look at me. And they’re just and so but I had doctors like you don’t need to get checked anymore like you’ve had them removed. I’m like well it can, really it can come back still so I felt like I’ve had to be forceful in like no I need to be checked again like let’s go.
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.
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.
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 favorably to her request for extra screening.
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 promptly. So again, I’m riding that balance and so I don’t know, is it just... am I the lucky one who’s...
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.
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 of a 50% recurrence as you said?
I find it difficult. What I find difficult is that since the inflammatory cancer is not a well-known cancer, unless you work in the healthcare sector and even though, it depends on the title of the person… Often, 99% of people that my parents or I spoke to, they had no knowledge of it. And I am under the impression that even if I say that it is severe, that is a severe sickness, I am not sure that everybody understands this. I find it difficult and I am like, I am under the impression that they do not understand that I am not joking about the recurrence rate in my case; I was told that it is 50%.
And this, I think that people do not understand, that’s it. I find it very difficult for now, but of course it has not been long since I finished the big treatments. So may be with time I will learn to live with it, but for now I find it difficult.
Interviewer: Did you find support with the women on Facebook?
Yes. I would say so since I registered with the English group and that I have examples. Things are not quite as bad. But I would say that having examples it is still difficult but not quite as bad.
Interviewer: From women that have survived for a while?
Interviewer: …for how long?
In find it a little bit less difficult to have hope. I believe it a little more. I would not say that I believe it 100% but I believe it a little more. It’s easier to believe it.
Interviewer: And what is your information need? Are there things that you would like to know more about? On the inflammatory cancer?
I would say that what I needed, I wanted to know more about what was going to happen after the treatments, what can I hope for or not? And I also wanted to know… have information that could give me hope. Yes.
Interviewer: What kind of hope?
No, it would be giving me more reasons to hope that I have more than three years to live, because I even saw that 50% of people died less than four years after the diagnosis. I already have one year behind me, so I have three years left. I want to hope that I have more than that left, but I want to be realistic as well. So…
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 him to tell me that again. He’s told me once, I know that and I would, if it happened, I would deal with it then. And I told him that I could walk out of this hospital and get hit by a car as well and so I wasn’t going to worry. I’m not going to worry about whether or not I get cancer again. As much as I don’t want to get it, I’ll deal with it if it happens.
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 over. You still, every year that you get tested, it’s going to be scary and my kids are young still, and that’s hard ...
But there’s knowing in your head, but always at the back of my mind is the fact that it’s 10 years that I have to be followed. And when it comes, if it comes back, it’s usually worse. So even knowing how successful they are at counteracting and fighting breast cancer, I’m still scared at the back of my mind that it’ll come back. I think I’ll be scared for 10 years.
Thoughts about the possibility of recurrence also contributed to some women's treatment decisions.
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.
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 mole removed, I would have never, again, I have a mole who cares, and now I’m paranoid. I react immediately. It’s...