Breast cancer can return years later

Dear Dr. Roach: Sixteen years ago, at age 56, I was diagnosed with Stage 3 HR+ breast cancer. I was treated with a modified radical mastectomy, followed by chemotherapy, six weeks of radiation, then about seven years of oral anti-estrogen drugs. I also had a prophylactic simple mastectomy on the opposite side.

My primary care doctor retired last fall. While looking for a new one, I went to my cardiologist who saw that a chest CT two years earlier showed two small lung nodules. She felt that a follow-up was needed, so she ordered it. The followup CT showed multiple small lung lesions and a new nodule in the liver, but the radiology report included the statement that low-risk patients required no follow-up.

It took six months to get a new primary care doctor, and when I shared that I had some concerns about the findings on my scan, she read the report and said, “It says right here that low risk patients need no follow up, so don’t worry about it.”

I read a recent study with a very large number of participants that showed recurrence rates as high as 15% to 20 % in patients up to 30 years after treatment. My cardiologist was very upset by the new doctor’s response, but says she “cannot assume the responsibility.” She gave me names of other primary care doctors she highly recommends.

This all leaves me a bit confused. My oncologist’s office informed me that they do not do any diagnostic work, and only treat once a cancer is diagnosed. They told me my primary care doctor should instruct me as to what to do.

Should I worry about these results? Am I really a low-risk patient? Should

I find a new doctor, or stop worrying about it?

K.B.

Answer: I am disappointed in the responses by your primary care doctor and oncologist. You should have had, at a minimum, a careful physical exam and scrutiny of the CT scans to see whether these lung lesions — “lesion” is a nonspecific term that only conveys something that shouldn’t be there — and liver nodule are compatible with breast cancer. If they are, your doctors should consider a biopsy. If not (and they may well not be), your doctors should explain why.

Having been the primary care doctor in situations like this, I will tell you I work carefully with the oncologist to decide on the right diagnostic plan. You deserve a doctor who will take this seriously, and not immediately dismiss you as “low risk.”

You are absolutely right that breast cancer can recur after many years. I spoke with one of the authors of the study you mentioned. The doctor recently saw a patient 27 years out from her original breast cancer diagnosis whose original breast cancer had spread without any new primary tumor.

Breast cancer is terrible for many reasons, but this way in particular: You did everything you could to reduce your risk, but even “low risk” breast cancer can come back. While this happens most commonly in the first five years, it can sometimes happen much later. Patients and physicians need to stay vigilant.