Tests and Cancer
The thing about cancer is that you need to have many tests to diagnose cancer, and see how you’re tracking during and after treatment.
But there are many questions that may crop up before and after your cancer diagnosis, such as what’s the difference between all these tests? And why do you need so many? Why does it take so long to get the results?
In this episode of The Thing About Cancer, Julie sits down with medical oncologist Dr Lorraine Chantrill, to tackle these questions, and much more.
Lorraine describes the most common tests used for cancer, and outlines the differences between CT, MRI and PET scans. She talks about how the doctor decides which test to suggest, and who does imaging tests and who interprets them.
I went for a check-up because I was tired and I couldn’t walk up hills anymore. He put me through all the tests and he said, ‘look everything is perfect, you’re really healthy, you’re really really fit. Let’s just do some blood tests. Within a few days we’ll get the results.’ I say ‘sure’ He phoned me the next day and he said, ‘We have a problem’.
— Phil, diagnosed with bowel cancer
Why are there so many tests?
Lorraine explains that there are a lot of tests, but some people may need more tests than others. Tests help doctors identify the cancer type, and how far it has spread – and this helps them develop the best treatment plan possible.
A range of tests may be needed depending on the cancer type. For example, in pancreatic cancer, the tumour often doesn’t show up clearly on a CT scan, and in this case an MRI scan can detect the cancer more effectively.
What are some of the most common tests?
The most common tests you are likely to have are blood tests. Most of these blood tests are used to check the function of the liver and kidneys, and whether there are any abnormalities in the way the bone marrow is producing red cells, white cells and platelets.
Lorraine explains that there are also some cancer specific tests, which are called tumour markers.
Listen now to learn about tumour markers – and how they are used to track how well the treatment is working, or whether the cancer has come back.
Lorraine also describes biopsies, and tells us how they are used during a cancer diagnosis.
What are the different scans, and how do they help?
Lorraine talks about the most common scans, like CT, MRI and PET scans, what they involve, and how they help doctors develop the best treatment plan possible.
Learn about the people who do the tests and interpret them, such as radiographers in radiology facilities.
Why does it take so long to get results?
Lorraine also explains why some tests results come back quickly, while others can take longer.
Tune in now to learn about these topics and more, including what staging is, how consent works, and how much all this will cost.
Want more information or support?
If you heard something mentioned in the podcast, you’ll find a link to it below. We’ve also added links to other sources of information and support.
From Cancer Council NSW
- Cancer Council 13 11 20 Information and Support service – call 13 11 20 Mon–Fri, 9am–5pm, to talk confidentially to a health professional about anything to do with cancer
- Cancer Council NSW diagnostic tests video – watch this short video to learn more about some of the diagnostic tests used for cancer
- Easy-to-read information about cancer – cancer types, treatments and issues
- Exercise videos and information – a series of easy and quick exercise videos and information about how to get involved in Cancer Council’s survivorship programs
- Managing Fear podcast – Julie McCrossin chats with psychologist Cath Adams about ways to cope with the fear that often comes with a cancer diagnosis
- Making Treatment Decisions podcast – Julie McCrossin chats with GP Professor Lyndal Trevena about choosing the best cancer treatment pathway for you
- Genetic Tests and Cancer podcast – Julie McCrossin chats with genetic oncologist Dr Hilda High about what genetic tests can tell us about cancer
From other organisations
- American Cancer Society – read about understanding imaging (radiology) tests for cancer and how they are used by health professionals
- American Cancer Society – read about some possible reasons for delays in biopsy and cytology test results when they are taking longer than expected
- My Health Record – an online summary of your health information, including test results, that you can share with health care providers
Transcript of Episode 15: Tests and Cancer
The Thing About Cancer podcast, Cancer Council NSW
You’re listening to Tests and Cancer, an episode of The Thing About Cancer podcast.
[woman] The very essence of all cancers is a change in the way that cells divide.
[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about.
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen. It’s not going to be like this all the time.
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.
Julie McCrossin: Hello, I’m Julie McCrossin and today, the thing about cancer is that there are so many tests. It’s natural to wonder what the tests are for and if you need to have them all, and then there’s waiting for the results.
Dr Lorraine Chantrill: So you may get an answer as to whether it’s cancer or not quite quickly but the oncologist might say, “Look, we know it’s cancer but we’re just still running a few more tests to see exactly what sub-type of lung cancer it is, or exactly what sub-type of breast cancer it is.” And I would implore you to be patient while that is done because it really helps us design our treatment better.
Julie: That’s Dr Lorraine Chantrill, a medical oncologist from the Kinghorn Cancer Centre at St. Vincent’s Hospital in Sydney. To help plan treatment, Lorraine has ordered many tests. In a moment she’s going to talk about what tests you might need, and in the second half of the episode she’ll explain how these tests help guide cancer treatment.
Just to be clear this podcast contains general information only so we recommend that you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.
We’ll hear more from Lorraine in a moment, but first here’s Phil talking about the tests he had before he was diagnosed with cancer.
Phil: Went for a check-up because I was tired, I couldn’t walk up hills anymore. The GP put me through all the tests, he said, “Look everything is perfect, you’re really healthy, you’re really, really fit. Let’s just do some blood tests. Within a few days we’ll get the results.” I say, “Sure.” He phoned me the next day and he said, “We have a problem.”
Julie: At the start of this episode, oncologist Lorraine Chantrill spoke about how tests take time and the importance of being patient. And it’s my pleasure to welcome Lorraine now to the podcast. So Lorraine, often the very first thing that happens to you if a doctor suspects you may have cancer is that you have a test. To prepare for these tests are there two or three basic questions to ask first?
Lorraine: Yes, I think so. I think you can ask: Why do I need this test? Is this test really important and urgent? And is there anything special I should know about this test? Is there any preparation that I should have to have to do this? And when will I get the results, and will I be able to talk about the results with you personally?
Julie: Just before we hear about each of the tests and what’s involved, why are there so many different tests?
Lorraine: There are a lot of tests. Sometimes more than others. But it’s very important for the treating oncologists to know exactly what the cancer is and where it is. That makes an enormous difference to our treatment plan.
Julie: So each test is giving you different kinds of information and different clues as to what may be happening for the patient?
Lorraine: Yes, that’s right. In some cases different types of tests need to be ordered. So, pancreas cancer is actually quite a good example because often on a regular CT scan we don’t see the tumour very well and sometimes we have to do something like an MRI scan.
Julie: So for each kind of cancer is there a common sequence of testing that you would do?
Lorraine: More or less yes, but it’s always individualised for the person sitting in front of you. And that might change, for example, if the person who I’m seeing is an elderly person who has kidney failure, then the sort of tests I would order would be very careful because I wouldn’t want to affect their kidneys with the contrast, for example. So yes there’s a kind of a standard list of tests but it is modified for each cancer and then modified for each person.
Julie: And then again modified depending on what you find?
Lorraine: That’s exactly right. So the findings will dictate the next step. Hopefully in most cases we’re able to do one, two or three tests and get the final answers, but you’re right, there are some situations in which we have to keep doing tests until we find the answer.
Julie: Well, now let’s talk about the most common tests that you’re likely to get, and they seem to be a mixture of blood tests and then the use of various kinds of technology. Can we just run through the most common tests someone with a cancer diagnosis is likely to experience during the journey?
Lorraine: You’re right, Julie, in that blood tests are very commonly done and most of the blood tests are really just a sort of a screening to check what the liver function is, what is the kidney function, are there any abnormalities in the way the bone marrow is producing red cells, white cells and platelets. There are some cancer-specific tests that we do. So those we call “tumour markers” and they’re very specific to certain cancers.
Julie: Could you just explain that term “tumour marker”?
Lorraine: It’s a complicated thing, and the best example I can give you is a tumour marker that is used routinely in the monitoring of bowel cancer. Most bowel cancers but importantly not every one of them, produce a tumour marker which is shortened to CEA. And that stands for carcinoembryonic antigen. That test is used to monitor people after they’ve had curative treatment for bowel cancer, but we also use it in the monitoring of people with advanced or stage 4 bowel cancer to monitor their treatment to see if their treatment is working, but it is not foolproof. We don’t actually have any markers that are foolproof.
Julie: Well we’ve talked about blood tests, just before we come to the scans, there’s also the biopsy. If you get a new diagnosis, there’s often a biopsy. What’s that?
Lorraine: A biopsy is literally obtaining a small piece of the cancer tissue in order for it to be looked at under the microscope. We get a lot of information from biopsies. Now it’s important to know that the biopsy can be of the primary site – that is, where the cancer is originating. Sometimes it’s easier to get a biopsy from a metastatic site, which is where that cancer has spread to. The pathologist looks at those biopsies under a microscope and can give us information about what type of cancer it is. And the other thing the pathologist is able to do now – and more and more so now – is look at molecular markers within that biopsy, which again helps us subdivide the cancers into increasing number of subgroups for each cancer.
Julie: Well look let’s turn now to the most common scans – the CT, the MRI and the PET scan – and get a sense of what each involves for the patient and their purpose.
Lorraine: The commonest test to have done is probably a CT scan. CT stands for computed tomography. What it means is it’s a very careful scan where you lie on a table. And I say to people it’s a bit like being a loaf of bread and having sort of virtual slices along the loaf of bread and then what we do is turn those bread slices up and we’re able to look at your body in cross-section.
Julie: And when you say it’s virtual slices, these are slices like slices of pictures, aren’t they?
Lorraine: Yes, it’s like taking a 3D photograph of the inside of your body. Usually we do have to administer some intravenous contrast into a vein and sometimes some oral contrast, which you drink. A lot of people do find the contrast a bit unpleasant, and by that I mean the contrast can make people feel a bit hot, a little bit weird, and if that’s all that happens, that’s not dangerous, but there are a very small number of people who do have an allergy to contrast. And if you do have an allergy to contrast it’s very important that you tell your medical staff and the radiology practice.
Julie: And what’s the purpose of the contrast? What does it do?
Lorraine: So the contrast enables the radiologists to differentiate different structures. So the oral contrast is taken by mouth and coats the bowel and the stomach in contrast so that it can easily be separated from the other tissues around it where the contrast isn’t. If you have intravenous contrast, most CT scans will have that, then of course that contrast is in the blood vessels, and so again it allows the blood vessels to be differentiated on the pictures from other structures around them.
Julie: So that’s the CT scan, let’s turn to an MRI – magnetic resonance imaging. How does that work?
Lorraine: So an MRI is a more complicated test. MRI uses a big magnet so if you’re going to have an MRI scan, the MRI team will ask you a lot of questions about previous treatments you might have had or whether you’ve been involved with any injuries that involved metal. They even may ask about shrapnel injuries, because if you have metal in the place of the body that is going to be in the MRI scanner – because the MRI is a magnet that could present some danger to you. That’s why you get those weird questions about metal implants.
Julie: So, what information does it give you and how do you go about having that test with the magnet?
Lorraine: So it gives you very, very accurate information about soft tissue and can also be done for some bone studies as well. It’s just a very, very accurate way of looking at that tissue. Generally speaking, MRI scanning is not used for the whole body. It would be true to say that the most common part of the body where an MRI is very important is the brain. The other part that’s commonly requires MRI for assessment is the spine. So it really depends on the part of the body as to whether an MRI is required or not.
Julie: And what does it involve for the patient, what does the machine look like, what do you do?
Lorraine: Yeah, so again, it’s quite a big machine. You lie on a metal table and the machine is like a really big doughnut and it spins around you. Now MRI can take a little time and it involves being in quite a small space, so some people with claustrophobia do find an MRI quite challenging. We do have some solutions for that problem. We do sometimes use short-acting sedatives to relax the patient. The staff, however, who do MRIs are very skilled at getting people to relax and they might do exercises like counting to help people relax to have the scan.
Julie: And now let’s talk about PET scans. I understand that PET – P-E-T stands for positron emission tomography. What do these scans involve?
Lorraine: A PET scan is a very special sort of scan and available now in most cancer centres, but not all – sometimes people have to travel for a PET scan. There are a few different types of PET scans but the commonest one is actually a glucose PET scan. So we inject into the person radiolabelled glucose. Cancer cells divide faster than any other cells in your body and so they take up glucose very avidly, and that shows up as being very bright on the pictures that are taken after the PET scan.
Julie: And what are PET scans used for?
Lorraine: It’s very, very useful in a number of situations and very sensitive at detecting cancer that’s spread outside of the primary site – that’s the main reason we use it. Mainly it’s before a big surgical procedure we want to do a PET scan – to make sure that before we do a big surgical procedure, for example, like removing a lung for lung cancer, we’ll want to make absolutely certain that there’s no cancer outside of that space, because if there is, then doing that really big surgery may not be the right thing to do
Julie: And are there risks involved when you’re having scans or x-rays?
Lorraine: So in the case of PET scans, the stuff that’s injected is radioactive. But in the case of CT scans the contrast is not radioactive, where you’re receiving a radiation dose is from the x-rays that make the pictures. So yes, there is a theoretical danger to having too many x-rays but the number of x-rays you require to have a dangerous level is enormous and most cancer patients throughout the course of their treatment do not reach those dangerous levels. And the tests are getting better all the time and they’re quicker and the dose of radiation to a person received during a test is actually getting smaller.
Julie: And from the patient perspective, I’m a cancer survivor myself and I’ve had a few PET scans, I’ve noticed the person injecting the contrast is behind a lead screen. And I just think that’s worth mentioning because that is a slightly confronting thing – that the person administering it needs to be protected from the substance that’s going into your body. So can you explain why that’s necessary?
Lorraine: Yes, absolutely. So the glucose that is injected into you is radiolabelled, which means it’s radioactivity. And it’s this radioactivity which is taken up by those fast-dividing cells and which lights up on the photographic film later when the photos are taken of your body. So it does involve radioactivity, which is precisely why we’re very careful about when we order PET scans. The reason why the person who’s administering the contrast wears a lead apron is that they’re doing many of these every day of the week, and their exposure over many years might be quite high and we want to make sure that we protect staff against any radiation exposure. But for a patient who’s having a single PET scan, the danger to them is almost zero – not completely zero, but almost zero.
Julie: And what about x-rays? Are they relevant when we’re talking about cancer?
Lorraine: So, x-rays are relevant, but there are a lot more sophisticated imaging techniques that we’ve talked about that give a bit more information. But x-rays are occasionally used, yes, particularly for bones. For example, if someone had a cancer like prostate cancer or breast cancer that might have gone to the bones and we want to check and see what’s happened to that bone and whether there is any possible fracture, then an x-ray would actually be the best test. Chest x-rays can be a good screening test for lung cancers, but generally speaking we prefer what we call a low-dose CT scan to look at lungs.
Julie: And what about ultrasounds, how are they different?
Lorraine: Ultrasound is different altogether, and the big advantage of ultrasound is that it’s non-invasive and it just involves using sound with a probe that’s run over the skin. Ultrasound is very useful at looking at ovaries, which are deep inside the abdomen. We also do use ultrasound to guide us in some of our cancer treatments and therapies. For example, some people with cancer do develop fluid in their abdominal cavity, and we will use an ultrasound to guide were we put a needle to drain that fluid. So there are a number of situations were ultrasound might be your preferred test.
Julie: What are the skills of the people who are doing all these tests for us and what are they called? And then who interprets the scans?
Lorraine: Yeah, so the people who are doing the tests are the radiographers in the radiology facilities. Radiologists are people who are skilled at looking at the scan results and interpreting them for us.
Julie: There’s a lot of waiting, waiting to have the tests, then waiting for results, all this waiting can make people really anxious. What’s your basic advice to people who are finding this waiting difficult?
Lorraine: I would say, tell us. Call the cancer care coordinator and tell them that you’re really anxious about waiting for the scan and you’d really like some information. It may be possible to bring your appointment forward. It may even be possible for the doctor to call you if you’re happy with that. So just tell someone because we may be able to help you.
Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to medical oncologist Lorraine Chantrill about the different tests you have when doctors are investigating if you have cancer. If you have any questions about this topic, or just want to talk to someone about your concerns, you can Cancer Council 13 11 20.
And for links to any of the resources or services we mention – or to listen to more podcasts – visit cancercouncil.com.au/podcasts and click through to this episode, Tests and Cancer.
We’ll return to Lorraine in a moment, but first we’re going to hear from Matt who talks about how he coped with the anxiety of waiting for test results.
Matt: The experience of doing some of these tests was another point of fear. There’s a lot of waiting around and I use that to read up fact-based material on the internet. So not so much people’s personal experiences because they’re well-meaning but I’m not sure that their emotional reactions were going to be the same as mine. But certainly the fact-based material on the web I found very useful to just helping manage my fear about what was about to happen.
Julie: So Lorraine, it often takes quite a long time before the results come through. Why is that, what’s happening? What does it take so long, because it can be a time of, well, considerable distress to the family and patient?
Lorraine: Yes I agree, and in an ideal world it really shouldn’t take that long. So, yes, some tests we should receive results very quickly. So a chest x-ray, for example, would be reported very quickly, and most CT scans are reported fairly quickly. PET scanning may take 24–48 hours to report, but the thing that probably does take time is actually biopsy reporting. So what happens first is that the pathology department takes the piece of tissue and they embed it into paraffin. So they actually fix it in formalin and then embed it in paraffin. This is a way of preserving the tissue. They then take tiny, tiny slices of that paraffin embedded tissue and they examine it under the microscope after staining it.
Julie: And what is staining?
Lorraine: So staining is using antibodies to attach to the surface of the cell and then applying a colour to those antibodies so that we can see whether the protein of interest is present or not. So as you can imagine, if you need to do several of those, it will take time. Now the number of stains that are done, depends on the cancer type and what we’re looking for exactly. And more and more so, we’re also doing some molecular tests on biopsy tissue.
Julie: And what can those molecular tests tell us?
Lorraine: So probably one of the most common examples now is in lung cancer. So if a person has a diagnosis of adenocarcinoma of the lung, a special type of lung cancer, we will then routinely look for mutations within that tumour tissue. And if a mutation is present in a gene called the EGFR gene, that will determine treatment. And that takes a little time too. So you may get an answer on whether or not it’s cancer quite quickly, but the oncologist might say, “Look, we know it’s cancer but we’re still just running a few more tests to see exactly what sub-type of lung cancer it is, or exactly what sub-type of breast cancer it is.” And I would implore you to be patient while that is done because it really helps us design our treatment better.
Julie: Really, you have to trust that the team is working as quickly as possible to work out the best possible treatment and that they’re keen to get you into treatment as quickly as possible, but some things take time.
Lorraine: That’s right, and usually a few days is not going to make a big difference. There are some exceptions and when there are exceptions we really do hurry people along and go down to the pathology lab and put our head over the shoulder of the pathologist. So there are situations in where we really do rush through results, but most of the time that’s not necessary.
Julie: The reality is though, isn’t it, the system is so busy and you’re dealing with so many different aspects of patient care, sometimes we’re probably waiting for the doctor or clinician to be free to talk it through with us – because a little bit of information without a personalised explanation could just generate more anxiety.
Lorraine: You’re right, but if you communicate your anxiety to your treatment team, they will try and accommodate that as much as they can.
Julie: Let’s come to some practical issues around tests and scans – it goes to consent and money, I suppose. Let’s start with consent. Should you always consent when a doctor suggests a test?
Lorraine: No, I don’t think you have to. So if you feel uncomfortable about the test that is being suggested or ordered, you need to voice your concerns, because in fact we can’t do anything to you without your consent. So if you really do not want the test, you need to let us know so that we can try to explain why we think the test is necessary, and usually after an explanation most people accept that that’s reasonable. But you may have special reasons why you don’t want to have the test and maybe we can think of other ways of investigating the problem.
Julie: So speak up if you’re concerned, is that what you’re saying?
Lorraine: Yes, yes. But for interventions, Julie, but for a biopsy, it’s very important that we get consent because something like a biopsy could have possible adverse effects or side effects, so it’s very important that you know about those before you embark on the biopsy so you’re aware that things can go wrong.
Julie: Let’s just turn to the financial side. Are there financial issues that people need to be aware of, whether they’re a public or private patient, can that influence what tests you’re offered or what tests you may ask for?
Lorraine: Yes, sometimes, not always. So most tests are required for cancer diagnosis and staging are covered by Medicare, and if you’re being treated in a public institution, generally speaking, you won’t pay anything. There are some tests, however, that are not covered by Medicare. Usually there is good reason for that actually, but occasionally if I really want a test that does not happen to be covered by Medicare for that patient, the first thing I’ll do is ask the radiology department, could you possibly do it for this patient if there’s reason that the patient can’t pay? And often they will do it for me compassionately. Sometimes there is a cost for tests that are not approved by Medicare.
Julie: Can you give us an example?
Lorraine: The best example of this is probably some MRI scans where a surgeon is trying to get some very specialised information. If you’re in a public hospital, that will be done and you won’t pay for it, but if you’re an outpatient and you’re seeing a specialised surgeon and they want a test that is more than the standard, you might be asked to pay for it. There are some PET scans that don’t fall under Medicare, and again I often manage to get those compassionately, but there are rare cases were people have to pay for them, and PET scans might be as much as $900 depending on where it’s done. So yes there are sometimes costs but if a test is ordered that you can’t pay for, please talk to the doctor who’s ordering the test, because they may have other ways of doing it.
Julie: It’s very interesting, isn’t it, that that notion of compassionate provision is still within our current system?
Lorraine: I think particularly for people with cancer, whether that’s right or wrong, but ah, I order tests and so, you know, I order hundreds of tests that are completely reimbursed in that situation. The radiologist is very nicely saying we can do one or two compassionately and that’s fine.
Julie: You’ve already mentioned the possible side effects of tests, but are there any general messages about risks that people should be aware of?
Lorraine: Yes, so I would say in general the government and the guidelines are really encouraging us to do less tests. Partly because of radiation exposure to patients, but also partly because of cost to our community. So that’s the first thing to say, we try not to do them unnecessarily. Secondly, as I mentioned earlier, allergy to contrast is not common but can happen, and it’s very important that if you have an allergy to contrast that that be carefully documented and sometimes people even wear a medi-alert with that on it. Other than that, I think the amount of radiation exposure from each scan is very, very small and is getting smaller as our technology is getting better and scans can be done quicker with less exposure. So the risks are actually getting less, not more, with time.
Julie: And what about pacemakers?
Lorraine: That’s a good question. So the situation where pacemakers are important is in the MRI scanning. So it depends on the material that the pacemaker is made from. So most people who have a pacemaker or indeed any metal object in their body will have some sort of identification of that metal and that needs to be provided to the team if an MRI is ordered. CT scans and x-rays can be done with pacemakers in situ, but they just distort the images a little bit.
Julie: Are there any other conditions that carry risk? I’m thinking of pregnancy, in particular?
Lorraine: Yeah, so, generally speaking, any x-rays or scans should be avoided in pregnancy because of the remote chance of there being some damage to the fetus from the radiation exposure. However, again, that dose is tiny and there are some very special situations where scanning may be required in pregnancy. But, generally speaking, it’s avoided. Ultrasound is safe in pregnancy.
Julie: And diabetes?
Lorraine: If you’re diabetic then we try to time the scans so that you’re not too much put out with your diabetic medications. So in some scans where fasting is required, we might actually ask the patient not to have their diabetes medicine that morning if they have been fasting. There is an issue with diabetes and PET scanning because PET scanning relies on glucose metabolism. So if you’re a diabetic and you’re having a PET scan, you just need to let the team know, again because you may need to modify or stop your diabetic medications.
Julie: I just want to turn to children. Are there some particular issues for children, both in terms of the nature of the tests, but also in assisting them to cope with the experience?
Lorraine: Absolutely. I think, in principal, the same process is undertaken for diagnosis of children’s cancer but you’re absolutely right, children need special care and assistance when having these tests. Sometimes, depending on the age of the child, sometimes in fact an anaesthetic is required for some of these tests, but the specialist will advise if that’s needed.
Julie: Let’s turn now to staging – the process of working out whether the cancer has spread and, if so, how far. You often hear about TNM. I understand T is for tumour, N is for nodes and M is for metastasis, but what does it all mean?
Lorraine: Staging really applies to all cancers but the staging systems are slightly different depending on the cancer that you have. But very broadly, staging is divided into the tumour stage, the lymph node stage and then the metastatic stage. So the tumour stage is essentially the measurements of the tumour in the primary site and whether it’s kind of gone through the area where it started. Nodal stage is looking at lymph nodes that are nearby the tumour and seeing whether any of those lymph nodes have cancer within them. Most but not all cancers tend to go to lymph nodes first. And then metastatic stage is distance spread. What that means is that the cancer cells have had to go through the blood system usually and landed somewhere distant. So we shorten that staging system to TNM. And we have different numbers for each T, each N and each M. So that’s the staging system and that determines what our treatment should be.
Julie: And there’ll be people listening to this who are frantically riffling through a file to look for their staging right now, and so I guess, I’m someone who’s had a stage 4 cancer, it’s important isn’t it to say you can have numbers that aren’t great and still survive?
Lorraine: Absolutely you can, that’s right. So I don’t think you should hang too much on it, it’s just a way of us labelling things. I think that’s probably the best way of thinking of it.
Julie: And are the tests and scans heading towards that staging?
Lorraine: Exactly, the purpose of the tests and scans and the biopsy is to make that stage for you.
Julie: Often when you have a test, the people hand you something. Sometimes it’s a disc, sometimes it’s a bit of paper – do you always take what you’re given to your next appointment?
Lorraine: You should do, although increasingly now these scans are available electronically to your medical practitioner, so you may not be given anything and that’s okay because presumably your doctor can access those scans on your computer. But if they do give you something like a disk or envelope, a large envelope with films in it, yes, please take them to your doctor.
Julie: I must say, as a cancer patient, what I learned was despite the use of computers and electronically messaging in many other industries, health still has a lot of disconnection and incompatibility or interoperability is not there, is the language I learnt. So I ended up having a list of all my medications with the date, all the relevant medical issues, the sort of things you’ve been describing, whether I have metal in me or other diagnoses and so on. And I took them, multiple copies of them to every appointment I went to, because you were never sure if the person had all your information or if they’d got it yet.
Lorraine: I think that’s very sensible and I would concur with what you did. I think that’s a very good idea because if they don’t need it, no harm done, but if they do need it, you’ve got it right there. And I do meet some very, very organised patients like yourself who have all their information in a folder, and they often find it very helpful to themselves as well as to the practitioners they’re seeing. If you’re having your treatment in one centre, we hope that all the information will be available to the people treating you within that centre. But especially when you go from that centre to another place, I think it’s very important to take the information with you.
Julie: We’ve already mentioned that at various points along the cancer treatment journey, as we often call it, that you may have other tests to check how everything’s going. But tests aren’t always perfect, are they? Can you tell us what we need to face up to as patients, which is that you are diligent professionals doing your best, but you’re on an investigative analysis, aren’t you?
Lorraine: Yeah, tests are not perfect, you’re absolutely right. They’re not perfect for lots of reasons. The best example I can think of, is that in cancer medicine, particularly in cancers of the gastrointestinal tract that I treat, we’re often faced with a situation where cancer has spread to the peritoneal cavity or the abdominal cavity and disease in that cavity is notoriously difficult to see on scans. It can be very hard to see and it’s not until the surgeon actually looks inside the abdominal cavity with a laparoscope or with an operation that the disease becomes visible. So that’s a good example of a test that is not perfect. And as I mentioned earlier, the tumour mark or a blood test, they’re really not perfect at all, they’re not that specific. So yes, we do have to qualify what we say about tests and scans with that knowledge that they’re not 100%.
Julie: Which brings me really to one of my closing points, which is one of the key skills as a cancer patient that I felt like I learnt was: we have to learn to live with ambiguity. We have to learn to communicate constantly with our team two-way and we have to learn to live with ambiguity because we’re on this journey of discovery and treatment and hopefully survival and recovery together.
Lorraine: Yes, as doctors we also need to express sometimes that we just don’t know. And I think it’s very useful for doctors to communicate that to their patients to explain exactly why it is that they don’t know. Sometimes I don’t know the answer but I have a plan for how we’re going to work it out.
Julie: And that you’ll stay with us.
Lorraine: Yes, that’s right.
Julie: That’s really important that you know we’re in this together and I will stay with you and sort this out.
Lorraine: Yes, exactly.
Julie: That’s it for this episode of The Thing About Cancer. Thanks to Lorraine, Phil and Matt for sharing their insights. If you’re looking for more information, you can ring Cancer Council 13 11 20 Information and Support service from anywhere in Australia. Or go to cancercouncil.com.au/podcasts. If you have any feedback on this episode, we’d love to hear from you, so leave us a review on iTunes or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.
If you found this episode helpful, you might want to listen to our podcast on making treatment decisions. In that episode, I talk to practising GP and Professor of Primary Healthcare at the University of Sydney Lyndal Trevena about how to decide on the best cancer treatment for you.
Lyndal Trevena: One of the things often weighs on people’s minds at that time and later on is, did I make the right decision? And I think you can be satisfied that you have if you’ve done your best to get all the information, consult all the right people, weigh it all up, and that’s the best you can do at that time. So do that, do that when you have the opportunity, and then don’t look back.
Julie: You can find that episode Making Treatment Decisions on our website at cancercouncil.com.au/podcasts.
The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only, and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals.
I’m Julie McCrossin and this has been The Thing About Cancer, a podcast from Cancer Council NSW.
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