Community Shares: When Metastatic Breast Cancer Came as a Surprise

Most people do not expect to find out they are facing an advanced breast cancer diagnosis. For nearly everyone in the community, the diagnosis – for one reason or another – came as an unwelcome surprise. To hear more about your experiences, we reached out to members of our Facebook community and asked: “Did your metastatic breast cancer diagnosis come as a surprise to you?”

Nearly 150 of you answered, and here is what you said.

Recurrence after remission

Many community members were utterly surprised by their advanced breast cancer diagnosis, mainly because they had been in remission for years – even decades, in some cases. Only 20 to 30 percent of women with breast cancer go on to develop advanced breast cancer, so it makes sense that most women are caught off-guard when they get the diagnosis.

“It was not a surprise – it was a shock. After 13 years of early stage, I was diagnosed with advanced breast cancer. I followed all the doctor’s orders: had annual oncologist follow-ups and mammograms, and I celebrated being cancer-free at 19 years! Had no issues in all those years. Went to 5h3 ER at 3 am for chest pain, expecting a heart attack diagnosis. After 13 hours and many tests, it was determined that bone mets on ribs were causing the pain.”

“Yes, after 23 years as a breast cancer survivor, it was the last thing I expected.”

“Yes, as I was in remission for 6 years.”

De novo metastatic breast cancer

Not everyone who is diagnosed with advanced breast cancer had an earlier cancer diagnosis. In fact, several women shared that they had no breast cancer history whatsoever. They simply went in for a routine check-up, only to be diagnosed with stage 4.

“It sure did! My 10-year annual check-in with my oncologist. Absolutely no signs that my scan would light up multiple bone lesions.”

“Yes – starting off at stage 4 was very scary. I cried in the room for hours.”

“The whole idea was a surprise. I went in for a mammogram, and within 6 weeks I had a double mastectomy. Started chemo and the works. I never had time to really think about it.

Back pain as a symptom of metastatic breast cancer

Several community members shared that their pain was centralized in other parts of the body, and so they expected the diagnosis to be something else. Back pain is not a common symptom of breast cancer. However, pain anywhere in the body can mean that breast cancer has spread.

“Yes, 100 percent! I thought I had a little back pain. Had several X-rays, blood tests, and an MRI. Still was not diagnosed until I went to the ER on memorial day 2017!”

“Yes, I thought I was just having gallbladder issues. They found cancer in the gallbladder as a result of advanced breast cancer.”

Had a feeling something wasn't right

When we are in touch with our bodies, it is not uncommon to have a sense when something is wrong – especially if we regularly listen to our intuition. Of course, these types of hunches are never good news, so it makes sense to ignore them and want to put off dealing with them for as long as possible.

“Deep down, I suppose I knew but did not want to hear it. I was willing to hear any other explanation for my pain. Now, 3 months later with targeted treatment, I am feeling much better.”

“Not really. I suspected it from the very beginning, especially when after my bilateral mastectomy they found residual cells in the left breast that they had not seen before. They found it in my lower spine, left hip, right shoulder, skull, and several small lesions on my liver – all 2 years later.”

Thank you to everyone who shared. Your responses help others understand more about their own experiences with advanced breast cancer.

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