Waiting for your pathology results

What is happening to your tumor tissue while you wait. Why it takes as long as it does. And why the name of your diagnosis can change along the way.

The short version

Your tissue is in a lab, and it is being worked on in a set order. The answer comes back in layers, not all at once: a quick look during surgery, then the microscope about a week later, then the gene tests a few weeks after that. The name of your tumor can change as those layers come in. That is the system working, not someone changing their story.

What is being done with your tissue?

The piece of tumor that was taken out has gone to a lab. 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 works on it. That is a doctor trained to look at brain tissue and say what it is.

They do two kinds of work. They look at the cells under a microscope. They also test the genes inside those cells. The answer you are waiting for is both of those, put together into one report.

Why does it have to go to a lab at all?

A scan shows where a growth is, how big it is, and what it is pressing on. It cannot tell you what the cells are. Only the tissue can do that.

The rules for naming brain tumors changed in 2021. For many types, the name is no longer settled by what the cells look like on their own. The gene results are part of the name. Two tumors that look the same down a microscope can end up with different names, and different treatment, because their genes are different.

That is truest for gliomas, where the gene tests are required before the tumor can be named. For some other kinds, the microscope answer can stand on its own. Ask your team which tests yours is waiting on, because that is what sets the length of your wait.

What happens to your tissue, step by step

1. A quick look, while you are still asleep. Whether the tissue came out in an operation or through a needle, a small piece is often checked right away, while you are still in the room. It is frozen, sliced and stained on the spot. This is called a frozen sectionfrozen section: A quick look at a piece of tissue while you are still in the operating room. It can guide the operation, but it is not the final diagnosis. See the glossary, and it usually takes twenty to thirty minutes. It tells the surgeon they have the right tissue.
2. The rest goes into a fixative. The tissue sits in a liquid called formalin, which holds it steady so it can be cut and stained later. It needs about 6 to 24 hours in it. Nothing else can start until that is done.
3. It is turned into a block. The water in the tissue is taken out and replaced with wax. This is machine work, and it takes hours. How long depends on the size of the piece and on the machine.
4. It is sliced and stained. The wax block is cut into slices far thinner than a hair. They go on glass slides and are stained so the cells show up.
5. The neuropathologist reads the slides.
6. Extra 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 particular proteins are present in the cells. Each round is another set of slides.
7. The gene tests. DNA is taken out of the tissue and tested. Some hospitals do this themselves. Some send it to another lab.
8. It is all put together. The neuropathologist writes one report that combines what they saw with the gene results. That is 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.
9. The meeting. Often the finished report is 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 plan is set.

Most of that list is chemistry and machine time. It cannot be hurried by asking, and it is not a line you have been put at the back of.

How long does it take?

Ask your own team, because the answer is different at every hospital and they are the only people who know how yours works. What follows is the shape of the wait, not a promise about yours.

• The quick look during surgery: twenty to thirty minutes. Your surgeon may have it before you wake up.
• The report from the microscope: often about seven to ten days.
• The gene tests: usually a few weeks.
• The full answer, with everything in it: a few weeks from your operation.

Those last two are worth putting a real number beside. One national study looked at 21 brain tumor centers in the United Kingdom. Gene panelgene panel: One lab test that checks many genes at the same time. It is run on your tumor tissue, not on you. It is one of the tests that takes weeks rather than days. See the glossary tests and methylation tests each took about three weeks on average. For half of those centers the full answer took three weeks or less, and the wait had grown longer over three years rather than shorter, as more testing was added.

The centers in that study are measured against a national target of 14 days for the full answer. Most of them did not meet it. So if your wait is longer than the number you were first given, you have not been forgotten and your case is not strange. Ask your team where yours has got to. They can usually find out in a phone call.

Why some of it takes weeks

Two reasons, and neither of them is about you.

The gene tests are run in batches. One of them, called methylation profilingmethylation profiling: A lab test that reads a chemical pattern across the tumor's DNA. The pattern is a bit like a fingerprint. It is matched against a library to help name the tumor type. See the glossary, is run with about eight samples at a time. It takes around seven or eight working days once it runs. The batching, the cost of each sample and the small number of labs able to do it are all known drawbacks of this test, and between them they are why it is counted in weeks.

Some tests are sent somewhere else. Not every hospital runs every test, so tissue or DNA gets posted to a lab that does, often in another city. That is normal and it is not a bad sign. It does add time. In the United Kingdom, one national standard gives a lab 14 days when it does the test itself and 28 days when it sends it out.

It is fair to ask which of your tests are being sent away, and where they have gone.

What the wait is like

This is the part with nothing in it. There is no appointment to get to and no decision to make, and that emptiness is its own kind of hard.

Two things about it are worth saying out loud.

You do not have to have an answer ready for people who ask. "They are still testing it, and I will know more soon" is a whole answer, and you can give it to everyone.

And you may be told part of the answer before you are told all of it. That is the next section, and it is the thing most worth knowing before it happens.

The name of your tumor can change, and that is normal

If the name you are given changes, the tumor has not changed. What changed is how much of it has been looked at.

The layers arrive in this order.

• The quick look during surgery is there to guide the operation, not to name the tumor. It matches the final answer about nine times out of ten. When it does not, sometimes the grade changes and sometimes the tumor turns out to be a different kind altogether. It is also less reliable for slow-growing tumors than for fast-growing ones.
• The microscope answer is the more accurate one, and it comes days later.
• The gene results can change the name again, because for many brain tumors the genes are part of the name.

So a name can gain words, lose words, or change grade while you wait. Reports are laid out in that same shape, and your pathology report, part by part walks down one.

This is worth knowing in advance, because when it happens it feels like being told two different things by the same team. Almost always it is not a mistake being fixed. It is the answer arriving in the order the tests finish.

One question makes the whole thing easier to live with. Every time you are told something, ask: is this the final answer, or are we still waiting on tests?

What if the tests cannot give a clear answer?

Usually they can. In one large study, nearly all of the needle biopsies done for a suspected gliomaglioma: A tumor that starts in the glial cells. Those are the support cells of the brain and spinal cord. Gliomas are given a grade from 1 to 4. The grade says how the tumor is expected to act. See the glossary gave a complete diagnosis.

Sometimes they do not. The piece that was taken may not hold enough tumor to test, and your team may need to talk to you about getting more tissue. Or the answer may come back less exact than you hoped, with a general name rather than a precise one. Neither of those means anyone has given up on the question.

If you are told either of these things, the useful questions are the same two: what would the next step tell us that we do not know now, and what happens to my treatment while we do it.

Why is there a second report?

Sometimes the pathologist is sure of the diagnosis before all the testing is finished. Rather than sit on it, they issue the report with what they know. When the rest of the results arrive, they get added to the same report. The added part is called an 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.

An addendum is not a correction. It is the rest of the answer.

There is a second thing that can happen, and it is a different thing: a report is amended. That means something already in it has been changed. An amended reportamended report: A report where something already written has been changed. It was not added to. It is labeled as amended. It normally says what changed and why. Most changes are small ones, like a typing mistake. See the glossary is labeled as one, and it normally says what was changed and why.

The commonest reason is a correction, such as a typing mistake or a measurement that was wrong. Sometimes it is more than that, and something learned later, from further testing or from a second opinion, changes the diagnosis itself. So what an amendment means for you depends entirely on which of those it was. Ask what changed. A corrected typing mistake may change nothing at all about your care.

Being handed an amended report is unsettling, and it is worth saying what it actually shows. The checking worked. Something was caught and put right instead of being left to stand.

If someone hands you a report, it is fair to ask whether it is the complete one and whether anything is still to come.

Can someone else look at my slides?

Yes, and asking is a normal thing to do.

Naming these tumors is genuinely difficult, and a second opinion is usually given by a neuropathologist who does this all day. They look at the glass slides, not at you, so you do not have to travel to get one. Sometimes they run extra gene tests as part of the review.

The practical side is ordinary. Your team can send the slides, or you can call the other center and ask what they need. Expect some paperwork to sign. Ask about the cost first, because that depends on your insurance.

Two things people worry about, answered. Asking does not offend anyone, and care teams arrange this often. And it does not usually mean going without treatment. Treatment for a brain tumor should not be put off or ignored, but there is normally room to have someone else look first. If the delay is what worries you, ask your team how much time you have. That is a question they are used to.

What you can do while you wait

Not much of this is under your control. These parts are.

• Ask who is going to call you, and when. Then ask for that appointment to be booked now, so you are not sitting by the phone.
• Ask whether the report will appear online before that call. See the next section. It is worth deciding in advance.
• Ask for a copy of the report when it comes, and keep it somewhere you can find it. You will be asked for it more than once.
• Write your questions down as you think of them. Waiting produces questions at three in the morning and they are gone by the appointment.
• Search carefully, or not at all. If you look up a name you were given early, remember it may not be your final name. It is another reason to ask whether the answer you have is the finished one.

If someone is waiting alongside you, this is hard on them too, and they are allowed to ask their own questions of your team. Get help now has the phone lines, including ones they can call themselves.

Who reads it, and how do I get the result?

The neuropathologist writes the report. It goes to the doctor who ordered it, usually your surgeon or the specialist looking after you, and that doctor is the one who explains it to you.

Your case may also go to a tumor board.

A tumor board is a meeting where specialists look at one person's case together: surgeons, cancer doctors, the lab, and the people who read scans. It tends to happen when a case is complicated or something is hard to read.

You do not go to the meeting. Afterwards, the doctor who knows you best explains what was said.

What they decide is advice, not an order. The choice is still yours. Because you are not in the room, tell your team what matters to you before it happens, so it is taken into account.

There is one more thing to know if you are in the United States. Since April 2021, the law says your records have to be released to you as soon as they are ready. In practice that means your pathology report can appear in your online account before anyone has phoned you. In a survey of brain tumor specialists, nearly all of them agreed that some patients are badly upset by reading results this way, on their own, with no one there to explain them.

So decide now, while it is still a choice. Do you want to open it the moment it lands, or wait for the call? Both are reasonable. If you would rather not see it first, ask your team whether the release can be held until you have spoken.

And if you are reading this because you already opened it on your own and it knocked the wind out of you: there are people who will talk it through with you today, and get help now has their numbers. Your own team will go through the report with you as well, and you can ask them to start again from the top.

What to ask your team

• Is this the final answer, or are we still waiting on tests?
• Which tests are being run on my tissue?
• Is any of it being sent to another lab, and to which one?
• When should the full result be ready, and who will call me?
• Can we book that appointment now?
• Will the report show up in my online records before we speak?
• Can I have a copy of the report?
• Would you go through it with me line by line?
• Would you send my slides for a second opinion?
• Is my case going to a tumor board?

Where to go next

• Your pathology report, part by part once the report is in your hands and you want to know what each part of it is for.
• How tissue is taken for the step before this one, and for what happens if the sample does not give an answer.
• Just diagnosed? Start here if this is all new.
• Your MRI scan, the scan that started this and the ones that come later.
• Follow-up scans, and what the results mean for the scans that carry on after treatment, and the shorter wait that comes with each one.
• Brain tumor types once you have a name you trust.
• The glossary for any word on your report you do not recognize.
• Get help now if the waiting is more than you can carry today.