Recurrent cancer is cancer that comes back to its original location, or somewhere close by, after initial treatment. In the case of breast cancer this means recurrence in the same breast, the opposite breast or the chest wall. Metastatic cancer is cancer that spreads from its original location to other parts of the body. If breast cancer metastasizes it often spreads to the lungs, liver, bones or brain. Recurrent or metastatic breast cancer is sometimes referred to as advanced breast cancer. Concerns about the possibility of recurrent or metastatic cancer were common amongst the women we spoke to. Our topic page on follow-up care and risk of recurrence shares their experiences around this subject in more detail.
Undergoing testing for metastatic cancer
Some women underwent testing to determine whether their cancer had spread to other parts of their body. In some cases, it had not spread but just waiting for the test results could be extremely stressful. For example, Christa had additional testing because an ultrasound revealed spots on her liver. Fortunately, these were found to be benign (harmless).
That was almost more than I could handle and with everything else I just ...like I said when I first found out about it, in the summer time, I just thought well, I guess I’m not going to make it ...
I was laying in my bed and I’m like "Okay." And then I just go off the phone and I continued to lay down and I just couldn’t... it was just I couldn’t deal with it anymore. They just kept checking it and checking it and I think it, they were checking to see if it would grow or shrink or what would happen. I think it stayed pretty much the same and they had to continue doing the MRIs* (Magnetic Resonance Imaging) after I was pregnant to see if, with the change in the estrogen, if they would change. And it still didn’t change.
Similarly, Annie underwent testing for possible metastases to her bones. Although she too was found to be in the clear, she had to wait several weeks for the test results.
So finally, that’s it, I didn’t know. I learned about this almost after one month. Before I knew if I had metastases, I suppose, and other tests to be done. So the month was very long. Especially because I had pain and I told myself, I wasn’t feeling better at all. So I was in a hurry to start the treatment, whatever they were! But that’s it, no, at that moment I had undergone tests to find out if I had metastases. I had undergone the bone scan and the CT scan*(Computerized Axial Tomography Scan).
And that’s it. Finally everything was fine contrary to what the surgeon had thought. And I was lucky because what I see from other women with inflammatory cancer, the majority of women are being told at first that it is an infection. So they are being prescribed antibiotics, and the sickness continues to progress. So when I knew that I was, that I had metastases, I was very happy to have found a doctor that told me the very first time, that was vigilant enough to think that it could be it.
*CT scan: Body scan that produces cross section images of the body’s internal structures.
Living with uncertainty about metastases
In several cases, there was uncertainty about whether a woman's cancer had spread. For example, Sirkka's medical team suspected that her cancer might have spread to her bones but they could not say for certain. She was, for unknown reasons to her, unable to access a PET scan, the test she needed to confirm this.
I still have to see the doctor every 3 months. They suspect now that the cancer may have metastasized into my spine they don’t know for sure because I’ve had a problem with my spine before. I’ve had back aches and stuff, I’ve been seeing a chiropractor for that and long before the cancer ever came. But I had been refused the PET scan*(Positron Emission Tomography) so they can’t say for sure that the cancer is there or that it isn’t there. So they are treating me as if the cancer has metastasized but nobody can say for sure that it has. So it’s, I’m still on my medications. It’s a little over 5 years now. I don’t know how long I’ll be, I’ll still have to be on them and I’m still getting blood work and seeing the doctor every 3 months. And that’s about it …
My oncologist had requested a PET scan but the powers that be, I don’t know who they are, refused me the PET scan. I would have taken it and my oncologist requested it but I was not one of the people who would you say qualified or what you would say. But I was refused anyway.
My oncologist said that for safety, it’s safer to treat me as if it has metastasized rather than no treatment.
*PET scan: A nuclear medicine imaging test that creates images of the body’s functions and metabolism.
A number of the women we spoke to have developed recurrent or metastatic breast cancer. This presented them with a whole new set of challenges.
Recurrent breast cancer
Six years after her initial treatment, Iceni noticed something hard underneath her surgical scar. It turned out to be a recurrence of her cancer. When she was initially treated, it was felt that the best option was to just remove the lump rather than having a mastectomy.
Yes, I thought they should have taken my breast the first time, that’s what I thought. I thought "Bloody hell!" That’s what I thought, if they’d only... because I was prepared for them to take my breast. I thought I would lose my breast, I was all prepared. The second time I wasn’t prepared, I was more upset. I thought "Oh it’s come back." I thought they’d just take another lump out but they said we’re going to take the whole thing and under my arm and everything else. So yes, I was mad about that.
I was pissed off to be honest, that if they’d only bloody well done that first. And it was shocking that I did get cancer again and then to think I had to lose it again, I thought "Gees!" So yes, I was more upset the second time.
Kathryn had a recurrence of her cancer three and a half years after her initial treatment. She had asked her doctor, at the time, what steps she could take to prevent the cancer from coming back and was assured that she had done all she could. She too was angry about the recurrence and felt she should have taken additional steps to prevent it.
In April of 2004, because I had had no radiation on my breast, I went back to see my breast surgeon and I asked her, I said "How do I protect myself from the cancer coming back in my breast." Since I couldn’t have more radiation on my breast.
Three of the women we spoke to were confirmed as having metastatic cancer. Receiving this diagnosis was emotionally challenging for all of them.
August the 8th, this was also protocol, they ordered a bone scan and I’d had back pain because I was an avid person in the gym. I was in the gym every day, I lifted weights, I jogged, I was very into fitness and ate right, did all the right things. They ordered a bone scan and the doctor after the bone scan, August the 8th, he says to me, he starts asking me questions about a mark on my rib.
Because when the cancer returned in my bones, then I kind of understood that it had become something else. I had not fully understood that 30% of the women diagnosed with breast cancer will eventually have a metastatic breast cancer. I was sure that I was not part of those statistics. So when… and 30% is still huge, and maybe it is even more than 30%.
Debbra's metastases were discovered when her physiotherapist suggested she have an x-ray to investigate persistent lymphedema (swelling in the limbs). Like Julie, she hadn't fully realized how her cancer might spread.
There’s limited resources, there’s no support group here at all for metastatic patients. There’s limited understanding and I belong to the Saskatchewan Breast Cancer Connect so these are a whole bunch of survivors and what I found is that it’s pretty scary for a group of women who are breast cancer survivors then for one of us to flip and become… I was really concerned for the group because one of my biggest fears was for my cancer to come back and so I wasn’t sure how the group would manage that. And it is a scary thing and we’ve had some honest conversations and that’s one of their biggest fears and so again these group of women who have been through it the first time, you get different reactions with them as well. Some of them can’t handle the fact that, and I’m one of the youngest ones in the group right now, and so here I am, I think I was very vital and energetic and stuff like that and to be hit again and… so I found that I pulled away from them because I didn’t want to scare them and I didn’t want them to be hit in the face of what could be facing them.
The Canadian Breast Cancer Network had pushed and done some advocacy to make, I think it’s October 13th metastatic breast cancer awareness month, or day I should say. Because that’s the other thing, you go through as a metastatic patient, you go through and hear all these things about survivorship and it’s just… it’s really… everything is about these women who are dealing with their process but they’re… they have hope and stuff like that. And sometimes you feel like you don’t fit in and there’s no place for you because you’re, “Do I classify myself as a survivor or am I going to be…I’m not going to be a survivor because we know that this is going to take my life but where do I fit in? What part do I attach to?” And so that, I think is something that needs to be truly looked at.
While receiving a second cancer diagnosis was very upsetting, all three women had found their own way of dealing with their situation.
So yeah, so there’s ways to manage your family members and I think that’s depending on your relationship with your parents and stuff like that. I think it’s very important for them depending on your situation, and where your cancer has spread, to make sure that they understand that advanced cancer doesn’t necessarily mean a death sentence. That it’s going to be a ever, I use the analogy of a chronic condition that we’re always going to be treating it. It’s never going to go away, but there is hope and there is ways to stay positive and constantly... there’s so much more advances to be able to constantly keep it in check or to try to keep it in check. And if you can, if you can start to have them see that, I think that then provides them with a little bit more reassurance and stuff like that. And again, it depends on where it is, and then I think you have to be honest with them. I at the very beginning of all this stuff, I hid a lot of things because I felt I had to be strong. My sister and I are extremely close and so I didn’t want to show her all my fears and all my emotions and stuff like that. So I would put up a little wall and I would be strong and you wouldn’t know this now.
And so I think the uncertainty for me is the hardest part, but having a plan in place with some stuff in place is sort of liberating for me. For the first little while before I sort of started to put things in place, I felt a little disjointed and very agitated. Because what’s going to happen, for a control freak or a control person it’s really difficult not knowing what’s going to happen. How do you plan a trip when you don’t know if you’re going to be back on chemo or not? Things like that. Actually, my husband actually said "We’re going on a trip on Monday." And he sort of said "If it does come back, we have bigger things to worry about than the money so book the trip and just go." Don’t, don’t put your life on hold because you don’t know, you can’t.
Every time you go for these scans and these checkups that you know you’re never sure what’s going to happen and so there’s this huge anxiety. Be aware that it’s going to happen and just be... put in place some things that will make you feel better. Is it being by yourself, is it having some people around you, is it having whatever, but always have somebody at appointments with you is the key thing. Because there’s so much that’s going on. And don’t shut other people out because it’s isolating enough that if the people truly love you, you need to work this thing through. You need to, in a way, they need to work it through as well. It’s sort of a symbiotic relationship where you’re both giving and taking. They may not think that they can help you in any way. But it’s just the unburdening and making sure that you keep it real, and it’s okay to cry and it’s okay to have bad days but it’s okay to forget about it for a while too. Try to go enjoy things that you love to do and stuff like that.
When I was informed that my cancer had spread to my bones, I was scared. I was really scared. I thought about death. During many months, I had to get use to the idea that death could come sooner for me than for others. That was haunting me a lot at the same time, because the pain was there, it was always there. So this… It intensifies the thoughts when you are in pain.
Kathryn's doctor did not expect her to live very long after her second diagnosis. In fact, she has been living with metastatic breast cancer for 12 years.
My doctor told me last Monday, when I went to see him, that I’m bankrupting the hospital. That I’ve been on my drug for so long that he can’t believe it. And I know that he looks at me in awe that I’m still here, that I have such a good quality of life and I believe that I’m still here to give back, to help other people, because I never listened to the doctors.
Support for women with advanced breast cancer
While there are many supports available to women with breast cancer (please see our information and links section), there is less public awareness and fewer supports available specifically for women living with advanced breast cancer.
I was going to my physio (therapy) for my lymphedema and I think she just had a feeling that it was presenting and it wasn’t going away. We had tried to do a couple of different things so she suggested I had an x-ray. And the x-ray showed that they couldn’t see my 5th and 6th rib very clearly. So again, when you have breast cancer and there’s an ambiguity in any of your test results, always, either have them redone or have the next level of test done. Because thank goodness we had the next level of test done, which was a bone scan, and that’s when we found out that I had gone metastatic. The cancer was in my spine, two of my ribs, three places on my spine, my lungs, and all of my lymph nodes in my chest area were enlarged as well as my arm, in my arm where the original cancer was.
This journey was totally different than last journey, I didn’t do it alone. It was a lot easier. How I was told was just kind of weird but that’s… Because my back was hurting so bad we were assuming I was fine. I guess that’s a big thing for breast cancer survivors, is that if there is pain that doesn’t go away no matter where it is, or discomfort, if you’re just not feeling well, get it checked out sooner rather than later. I had no idea that it could, I don’t know why, I didn’t think it could go into my back but the back, your lungs and your liver and your brain are probably the first places that… that’s the likely places for it to spread, for breast cancer. But the spine and the back are one of them, so if you have persistent pain that doesn’t go away and that starts out not as bad and then increases intensity, then make sure you get things checked out sooner rather than later.