Your pathology report, part by part

What each part of a brain tumor pathology report is for. Why gene results can change the name at the top. And what the grade and the words NOS and NEC mean.

The short version

Your pathology report is the document that names your tumor. A doctor called a neuropathologistneuropathologist: A doctor who works out what a tumor is by looking at the tissue itself. They specialize in the brain and the nerves. You do not usually meet them, but they are the person who names your diagnosis. See the glossary wrote it, once your tissue had been looked at and its genes tested. The answer is usually at the top, and everything under it shows how they got there. If the name on the report is not the name you were given first, this page explains why that happens.

What is a pathology report?

It is a written report about the piece of tissue that was taken out of you.

A pathologist is a doctor who works out what a disease is by looking at cells and tissue under a microscope, and by reading lab tests. For a brain tumor that work is done by a neuropathologist, who is trained in brain tissue.

For a brain tumor the report says where in the body the tissue came from, what type of tumor it is, its grade, which stains were used, and what the gene tests found.

It has two jobs: to name the tumor, and to help your team choose treatment. It is one of the most important documents in your care, and your treatment plan is built on it.

What it holds is a description of the tumor. Deciding what to do about it is the next conversation, and that one is yours and your team's.

Where the answer sits on the page

Most reports put the final diagnosis at the top. That is the pathologist's answer, and it is the part your team acts on.

Underneath come the layers that led to it: what the cells looked like, the grade, and what the gene tests found. For brain tumors that order is on purpose. The rules ask for the combined answer first, with the reasons set out under it.

So the top line is the conclusion, not the beginning. Reading from the top down means reading the answer first and the evidence second.

Not every report is laid out the same way, and some put the diagnosis further down. Look for the word "diagnosis" rather than for a fixed place on the page.

Your report, part by part

Reports differ, and yours may not have all of these. These are the parts you are most likely to see.

1. Your details and the sample. Your name, your date of birth, the date of your surgery or biopsy, a hospital number, and a number the lab gave the sample itself. Contact details for the lab and the pathologist are often here too.
2. Clinical information. What the doctor who took the tissue told the lab: your history, the reason the tissue was taken, and anything they asked the lab to look for.
3. The diagnosis. The name of the tumor and its grade. This is the part your team plans from. On a brain tumor report it is often headed the integrated diagnosisintegrated diagnosis: The final diagnosis. It is made by putting what the cells look like together with the gene test results. For many brain tumors both parts are needed to name it. See the glossary, because it puts what the cells showed and what the genes showed into one answer.
4. Gross descriptiongross description: The part of a pathology report that describes the tissue as it looks to the naked eye. It notes the size, the color, and how the tissue felt. Here "gross" means seen without a microscope. It does not mean unpleasant. See the glossary. What the pathologist saw with the naked eye, before any microscope: size, color, how the tissue felt, how many pieces there were. This part can be hard to read, because it describes your tissue the way it would describe any object. That is what it is for: a record of exactly what reached the lab.
5. Microscopic description. What the cells look like under the microscope. How abnormal they are, how they are arranged, and how they behave.
6. Stains. Special stainsimmunohistochemistry: A way of staining a slide to show whether one protein is there in the cells. Each stain answers one question, so a report may list several of them. See the glossary show whether certain proteins are in the cells. On a brain tumor report you may see one called GFAP. The results may sit in their own part of the report or inside the microscopic description.
7. Gene results. What the tests on the DNA found. Words like IDHIDH gene change: A small change in a tumor's IDH gene. It is the first thing your team looks at when naming an adult glioma, and it can affect which treatments are offered. Your pathology report says whether your tumor has it. See the glossary, MGMTMGMT promoter methylation: MGMT is a gene whose protein repairs damage to a tumor's DNA. Methylation turns it down. Your report says how much, and your team uses that when they choose chemotherapy. The line between high and low is not settled. See the glossary and EGFR belong here. These results may arrive as their own report, linked to this one. The words on your gene results takes them one at a time.
8. Comment. Anything the pathologist wants the treating doctor to know. It may raise a concern, suggest more testing, or set out other possible answers. It also names the tests that have not come back yet, which is often the answer to "why does my report look unfinished".
9. Addendumaddendum: A part added to a report that has already been sent out. It holds results that were not ready the first time. An addendum is not a correction, and it does not mean anything went wrong. See the glossary. Results that were not ready when the report was first sent out, added on afterwards.

A missing part is not always a mistake. Some reports have no microscopic section at all. If you cannot find something you expected, ask, rather than assuming it was left out by accident.

When is the report finished?

Ask your own team, because the answer is different at every hospital.

The shape of it is this. The part that comes from the microscope usually reaches your doctor within about ten days of your surgery or biopsy. The gene results take longer, and they often arrive after that first report has already been sent.

That is why a report can turn up in pieces. Waiting for your pathology results covers the whole wait: what is being done to your tissue, why some of it takes weeks, and what you can do while it is going on.

Why the name may not be the one you were told

If the name has changed, the tumor has not changed. The rules for naming brain tumors changed in 2021, and gene results are now part of the name itself.

Before then the name came from what the cells looked like. Now, for many brain tumors, the lab has to know what the genes say before it can finish naming it. Two tumors that look the same under a microscope can end up with different names.

So a name can gain words, lose words, or change grade while you wait. "Astrocytoma" can become "astrocytoma, IDH-mutant". Most often those extra words are the rest of the answer, arriving in the order the tests finish. Sometimes a gene result changes the grade as well, and what the grade means sets out how that happens.

It also means older paperwork and older websites carry names that the rules have since dropped. That is worth knowing before you go looking.

If you are holding two reports with different names on them, ask your team which name is the current one, and which tests it rests on.

What the grade means

The grade is a number from 1 to 4 for how the tumor is expected to behave. It is worked out from what the cells look like and from what the gene tests found, and your team uses it as one part of planning treatment.

Two things about grades changed in 2021, and both of them cause confusion.

The numbers are written differently. Grades used to be written as Roman numerals: I, II, III, IV. They are now written 1, 2, 3, 4. The reason is plain. A II and a III, or a III and a IV, are easy to mistake for each other, and an uncaught typing error in a grade can change someone's care. Your report may say "CNS WHO gradeCNS WHO grade: A number from 1 to 4 for how a tumor is likely to behave. Since 2021 it is written in plain numbers, not Roman ones. Gene results can set it too. See the glossary 3". An older report, or an older website, may say "grade III" for the same thing.

A grade now belongs to a type of tumor. Grades are given within a tumor type, not across all of them. A grade 3 of one type and a grade 3 of another are not the same thing, so putting them side by side does not tell you much.

There is one more thing worth knowing. A grade used to come only from what the cells looked like. Now a gene result can set the grade on its own, even when the cells under the microscope look lower grade. If your grade does not seem to match what you were told about the cells, that is the likely reason, and it is a fair thing to ask about.

What NOS and NEC mean

Two short codes can turn up after the name of your tumor. Both mean the same plain thing: the name could not be finished in the standard way. Neither is a grade, and neither of them says the tumor is worse.

NOSNOS: Short for "not otherwise specified". It means the gene tests needed to name the tumor fully were not done or could not be done. Ask your team whether they can be. See the glossary is short for "not otherwise specified". It means a test that was needed for the standard name is missing. It may not have been done yet, or it may have failed and need repeating. It is a flag to your team that something is outstanding.

NECNEC: Short for "not elsewhere classified". The tests were done, but the results do not match any named tumor type. Ask your team what it means for your plan. See the glossary is short for "not elsewhere classified". It means the testing was done and it worked, but the results do not add up to one of the standard names. The pathologist then describes the tumor in their own words instead.

Both are doing a useful job, because they tell your team exactly where the answer has got to. If you see either one, ask what is missing, or what did not fit, and whether anything more can be done about it.

What you can do with your copy

• Ask for a copy, and keep it somewhere you can find it. You will be asked for it more than once.
• Write the name down with all of its words. "Astrocytoma, IDH-mutant, CNS WHO grade 3" is a different search from "astrocytoma", and the extra words are the ones that matter.
• Check the date and the report number before you read it, so you know which report you are holding.
• Ask which parts are still to come. The comment usually says so, but asking is quicker.
• Take it to appointments, and ask for it to be read through with you line by line. That is a normal thing to ask for.
• Look up the whole name, not single words from it. One word out of the gene results will bring back papers written for doctors. The glossary explains the words on the report in plain English.

Who else sees this report?

The pathologist sends the report to the doctor who ordered it, usually your surgeon or the specialist looking after you, and that doctor is the one who goes through it with you. Everyone on your care team can see it.

Your report may also be discussed at a tumor boardtumor board: A meeting where specialists talk through one person's case together: the surgeon, the cancer doctor, the lab, and whoever read the scans. You are not there. What they decide is advice your own doctor goes through with you. See the glossary before your treatment is settled. Waiting for your pathology results explains what that meeting is, and who is in the room.

There is one more thing to know if you are in the United States. Your report can appear in your online records before anyone has phoned you about it. That same page covers what to do about that, and it is worth deciding in advance whether you want to open it on your own.

What to ask your team

• Is this the final report, or is something still to come?
• Would you read the report through with me, line by line?
• What is the full name of my tumor, with every word?
• What grade is it, and what set the grade?
• Does my report follow the 2021 naming rules?
• Does my report say NOS or NEC, and if it does, what is missing?
• Which gene tests were run, and are any of them still pending?
• Has the name changed since the last time we spoke?
• Can I have a copy of the report?
• Do any of these results open up a treatment or a trial I should know about?

Where to go next

• Waiting for your pathology results if part of your report has not arrived yet.
• The words on your gene results, one by one for the short words in the gene section.
• Just diagnosed? Start here if this is all new.
• Your MRI scan, the scan that led to the tissue being taken.
• Brain tumor types to read about the name on your report.
• The glossary for any word on the report you do not recognize.
• Get help now if reading this has been more than you can carry today.