Recurrent and metastatic (advanced) breast cancer

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).

Facing the possibility of more bad news was extremely difficult for Christa.

Transcript

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 […]

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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.

It was difficult for Annie to wait for several weeks for the test results.

Transcript

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 […]

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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.

As a precaution, Sirkka's doctors decided to treat her as if her cancer had metastasized.

Transcript

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 […]

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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.

Iceni was angry about the recurrence and felt that if she'd had her breast removed during her initial treatment, recurrence might have been avoided.

Transcript

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 […]

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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.

Kathryn's recurrence was discovered by a doctor in the U.S. where she had chosen to go for additional expertise in her treatment.

Transcript

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. I […]

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Metastatic cancer

Three of the women we spoke to were confirmed as having metastatic cancer. Receiving this diagnosis was emotionally challenging for all of them.

Kathryn had both recurrent and metastatic cancer. She described the day she found out her cancer had spread to her bones.

Transcript

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 […]

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Julie's cancer had also spread to her bones. She hadn't realized how commonly metastases occurred.

Transcript

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 […]

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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.

Debbra advised other women with breast cancer to pay attention to persistent signs and symptoms after treatment.

Transcript

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 […]

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While receiving a second cancer diagnosis was very upsetting, all three women had found their own way of dealing with their situation.

Debbra considers herself to be living with a chronic condition.

Transcript

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 […]

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Support from health professionals and being responsive to her own needs has allowed Julie to manage her situation.

Transcript

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 […]

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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.

Kathryn has amazed her medical team with her resilience and quality of life.

Transcript

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 […]

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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.

Although Debbra is involved with a support group in her area, she explained why more support specifically for women with advanced breast cancer is needed.

Transcript

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 […]

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Last updated: 2019-07
Review date: 2019-09