Finding Out You May Have Cancer Through a Patient Portal

Since April 2021, US health systems have had to release most electronic health information to patients as soon as it is available. That comes from the information blocking rules in the 21st Century Cures Act. In practice, a pathology report, a radiology report, or a lab value posts to your portal the moment it is signed. That is often at night, often on a weekend, and frequently before your clinician has read it, let alone called you.

This is a genuinely new experience. For decades the sequence ran one way. The doctor read the result. The doctor phoned you. Then you found out. That sequence has been flipped for millions of people. If you have just read the word "carcinoma" on your phone with nobody to ask, you have not done anything wrong. The system has not malfunctioned either. It is working exactly as written.

A survey of more than 8,000 patients across four US health systems was published in JAMA Network Open in 2023. It found that about 96% wanted to keep receiving results immediately online. That preference held among people whose results were abnormal, at roughly 95%. Most people reported feeling the same or less worried after reading their results. Among those with abnormal findings, about 17% reported feeling more worried, compared with 5% of those whose results were normal.

So immediate access is not, on average, harmful. But the group that finds it hardest is exactly the group reading a possible cancer result. Knowing both things are true lets you make a deliberate choice rather than a reflex one.

You can choose when to look. Portal notifications can usually be turned off, or set to email only. Nothing obliges you to open a result at eleven at night, alone. Some people prefer to wait until someone else is with them, or until the next working day when they can call. Others find waiting worse than knowing. Neither is braver than the other.

If you do open it, decide in advance what you will do next. Put the phone down and call the clinic in the morning. Or tell one specific person. That way the moment has an exit.

Pathology and radiology reports are written between clinicians. They are unforgiving to read cold. A few things are worth knowing before you try.

The diagnosis line is not the whole story. A report saying "invasive carcinoma" tells you a cell type. It says nothing yet about stage, spread, treatability, or what will actually be recommended. Those answers come from staging scans, further tests, and a meeting of specialists that has not happened yet. Almost every frightening question you have at midnight cannot be answered by the document in front of you, however many times you reread it.

Preliminary means preliminary. Reports carry additions, corrections, and pending sections. A line such as "additional stains pending" means the pathologist has not finished.

Searching individual phrases will mostly surface worst cases. Search engines are not weighted to your situation, your stage, or your tumor biology. And the survival figures you find will be years out of date.

Write down what you actually read and what you want to ask. Then call the clinic or nurse line rather than waiting to be called. Say plainly that you have seen a result in the portal and need someone to explain it. Most cancer services run a triage or navigator line for exactly this. Using it for exactly this is appropriate.

If you know you cope badly with reading results before speaking to someone, say so at your next visit. Some systems let you set a short delay on certain result types. Some let you note a preference that particular results be discussed by phone first. And if checking the portal has become compulsive, handing your login to someone you trust for a few days is a perfectly sensible thing to do.

• The Conversation — summary of JAMA Network Open research on immediate result release
• NCI — Pathology Reports Fact Sheet
• Cancer.Net — Reading a Pathology Report