Community Shares: Metastatic Breast Cancer and Frequency of Testing

When it comes to advanced breast cancer —that is, breast cancer in stages III and IV, everyone’s normal looks different when it comes to the frequency of tests and scans.

To hear what your normal looks like in regards to MRIs, CT and PET scans, we reached out on the AdvancedBreastCancer.net Facebook page, asking you: “How often do you go for monitoring or scans?”

More than 80 of you responded. Here is what you shared:

Monitoring for high risk of metastasis

In some patients that are at a higher risk for their cancer spreading, some doctors are recommending tests as often as 6 weeks apart. While this creates extra work for the person with the diagnosis, it could, in the long run, be a much-needed saving grace.

“Every 6 weeks. After a year in remission, I started a 3-month gap. Now recent PET scan test shows that the cancer has spread to lymph nodes. Also, I felt a lump on my neck and went to the ER in between this, and had 2 CAT scans and nothing was found. I was diagnosed 4/17 inflammatory breast cancer stage 4, triple-negative. This is my 3rd recurrence. I say scans 6 wks-3 months is best.”

PET scan frequency

The most common answer given in the community was every 3 months. This seems to be a safe, conservative amount of time in between tests for metastases, spreading of cancerous cells. Some of you are getting PET scans, which provide images of the organs and tissues, and others of you are getting CT scans, focusing on bones and soft tissues.

“I get a PET every 3 months at this point.”

“Pet Scan 3 to 4 times per year.”

“I get a CT scan every three months.”

No evidence of disease

Those of you who have reached a NED stage, that is, no evidence of disease, can allow for more time in between tests. With NED, the most common answer for how often you have to get tested is every six months.

“When NED, a CT scan every 6 months, 3-4 when not. Brain every 2-3 months. Bone scans are not very accurate for me and never had a PET.”

“PET/CT every 6 months after being NED for 2 years. For the first year after NED, every 3 - 4 months. Brain MRI every other year.”

“Every 6 months for now. Next one is in April.”

“My spine surgeon said it is best to do it every 6 months for me at this point simply because the chemicals they put in your veins can help cancer spread. So I learned something new there.”

Yearly testing for advanced breast cancer

Others of you have found that your doctors are only recommending testing once a year. When they determine that you are at an ultra-low risk for recurrence, you do not have to come in often for tests and procedures.

“Once a year now! Woop woop.”

We want to thank everyone who shared their experience with the community. We want everyone going through advanced breast cancer to know you are not alone.