Missy was vacationing in Hawaii with her family when a sudden shortness of breath caught her by surprise. She was already four and a half years past her diagnosis and subsequent treatment of stage 1 breast cancer. After having a double mastectomy, Missy’s doctor confirmed she had clear margins and wouldn’t need chemotherapy or radiation therapy. “I was on the road to recovery and I was feeling great,” she says. “The chance of recurrence for me was very slim.”
Missy called her doctor, who thought the shortness of breath could be a side effect of the tamoxifen she had been taking. Once she returned home from her vacation, Missy’s doctor ran a few tests just to be sure, including some blood tests and a CT scan. The CT scan results confirmed the source of the new symptoms – a tumor in her liver. Her breast cancer had spread.
“That’s when I heard the word ‘recurrence,’” Missy recalls. “I remember asking, could it be something else in my liver? Are you sure it’s cancer?” In that moment, Missy shifted from being a “survivor” to someone living with metastatic breast cancer (MBC).
What Do Metastasis and Recurrence Really Mean?
MBC occurs when cancer cells spread from the original area of the tumor to other areas of the body, including the bones, liver, lungs or brain. This happens because for some unknown reason some cancer cells remain in the body after treatment while staying inactive, or dormant.
Recurrence happens when cancer cells survive treatment and begin growing again. Local recurrence is the return of cancer to the same breast or the same chest wall. In some cases, cancer cells also travel to other parts of the body through the bloodstream. This type of recurrence, known as distant recurrence, happens when the cancer reappears in areas far from the original tumor site.
While this imagery may be unsettling, it clearly illustrates the complexity of breast cancer and how many factors are at play. It is important to know that recurrence is not caused by anything the patient or doctor didn’t do right. Some breast cancers are aggressive. Breast cancer is known to often “outsmart” even the most sophisticated treatments. For many people like Missy, this is why breast cancer isn’t always a “closed chapter” when treatment ends.
When Survivorship is Not the Finish Line
For those who have completed their breast cancer treatment, there is often an imagined endpoint, or finish line, where their doctor will check in periodically to ensure there are no signs of recurrence.
Following her double mastectomy, Missy was prescribed tamoxifen to help reduce her risk of recurrence. In her mind, she had crossed the finish line, as her tumor had been completely removed and the remaining tissue showed no signs of cancer at the time. “I really did not think that I was going to progress or have a recurrence,” she says. “It looked like we got all the clean margins.”
Missy was told there was a very minimal chance of a recurrence, so she did not receive chemotherapy or radiation therapy. Today, she says, “hindsight is 20/20,” and “had I been told there was a chance of recurrence, but I’d have less of a chance if I did chemo, I would have done chemo.”
Missy wishes she had been more educated about the possible risk of recurrence following her treatment. “I wasn’t given the tools to understand the severity of what a recurrence and metastatic breast cancer mean,” she explains.
She also recognizes that the information she needed might not have been available at the time she was diagnosed, and says, “I believe my doctor did the best job for me.”
Moving Forward with Hope
Today, Missy lives a full life, embracing the precious time she shares with her family. She communicates openly with her two sons about her health and encourages them to ask questions.
“We don’t want them to regret not being able to have those conversations because we said it’s not a big deal, Missy says. “So, we don’t say that anymore. We say, hopefully, this medicine will work. We’ll see what’s going to happen.”
For those who are living with MBC, Missy believes the most important thing to do is find a good doctor. “If you don’t love your doctor, you’re doing something wrong,” she says. “Find somebody you trust, somebody who’s knowledgeable.”
Missy also sees clinical trials as an invaluable resource for the MBC community. “People think clinical trials are a last-ditch effort, or often something that hasn’t been approved yet,” she says. “But you can get in clinical trials where the medicine has been approved, and it could be really beneficial.”
As Missy explains, moving forward with hope means being grateful for the blessings in her life, and not taking anything for granted. This includes pulling her family in closer for every birthday and holiday.
“Maybe it’s good to make these moments special,” she says. “It might be my last birthday. It might be my last Christmas. Maybe it’s a good thing that we’re celebrating more than we ever would if we weren’t sick. We’re taking this opportunity to celebrate life, and to celebrate that we’re all still here.”
