Called back after a mammogram: what happens next

If a letter or a phone call has told you to come back after a screening mammogram, the most useful fact available is this one, in NCI's own words: although it can be scary to be called back for further testing, it is important to keep in mind that most people who are called back are not found to have breast cancer.

That is not a soothing platitude. It is a description of what typically happens.

Screening is designed to be cautious. Its job is to flag anything that might matter so a human being can take a proper look. Being flagged and being diagnosed are two very different stages.

The usual next step is a diagnostic mammogram. NCI explains that diagnostic mammography requires images from more angles than screening mammography, which is exactly why it is used when an area needs closer examination.

Because more images are taken, the radiation dose is higher than for a screening mammogram. That is a straightforward trade: a bit more exposure in return for a much clearer answer.

Some people are also sent for a biopsy, where a small sample of tissue is taken so it can be examined.

Radiologists report findings using BI-RADS, the Breast Imaging Reporting and Database System. NCI describes it as providing a consistent way for radiologists to report a range of possible mammographic findings, with the recommended follow-up attached.

Three categories come up most often after a callback:

• Category 3, probably benign. The recommendation is usually a six-month follow-up mammogram.
• Category 4, suspicious abnormality. This may require a biopsy.
• Category 5, highly suggestive of malignancy. This requires a biopsy.

Seeing a number on a report without an explanation is unnerving. Asking which category you were given, and what it means, is a completely reasonable question to put to the person who calls you.

NCI's breast cancer screening summary lists the groups in whom false-positive results are more common: younger women, women with dense breasts, women who have had previous breast biopsies, women with a family history of breast cancer, and women taking oestrogen.

None of this means something is wrong with you. It mostly means the images are harder to interpret, so the radiologist errs on the side of a second look.

A callback is a request for better information, not a verdict.

The genuinely difficult bit of a false positive is not the extra scan. It is the days in between. NCI's screening summary acknowledges that false-positive results can cause mental and emotional distress, alongside requiring additional follow-up procedures such as biopsies.

A few things that tend to help:

• Ask for the earliest available appointment and say plainly that the wait is hard.
• Ask who will call you with the result and by when.
• Bring someone with you, if only so two people hear what is said.
• Resist the urge to search for image interpretations online. Your own films are the only relevant ones and you cannot read them.

If a probably benign result means waiting six months for a repeat scan, put the date in your calendar before you leave the building. That follow-up is the point of the plan, and it is easy to let slide once the fear fades.

You are allowed to find this stressful even when the outcome is fine. Most people do.

A few small preparations make the follow-up appointment easier.

Find out where your previous mammograms were done. Comparing new images with older ones helps a radiologist enormously, and if your earlier scans were taken elsewhere, they may need requesting in advance.

Ask, when you book, whether you will get results on the day or later. Some centres read diagnostic images while you wait. Knowing which kind of appointment you are attending changes how you plan the rest of the day.

Write your questions down beforehand. Under stress, people forget what they meant to ask and then spend the evening wishing they had.

And if the imaging leads to a biopsy, ask what type it is and when the result will come. A biopsy is a way of getting a definite answer rather than a sign that the answer is bad. Waiting on a definite answer, unpleasant as it is, is better than living with a maybe.