Featured in this episode
Dr Aarya Murali
Dr Aarya Murali is a haematology registrar employed through Pathology Queensland at QML Pathology. A haematology registrar is an expert in blood diseases, and in this episode, Dr Murali walks us through the different types of blood cancers, how they affect the blood and body, and how they are tested for and treated. You can also listen to Dr Murali in episode one of our podcast, as she explains How Blood Works.
Dr Joshua Richmond
As a clinical and laboratory haematologist at Sunshine Coast Hospital and Health Service, Dr Joshua Richmond specialises in conditions that affect the blood. In this episode, Dr Richmond details the types of blood cancers and his experiences testing and treating blood cancer patients.
Briony Benjamin
Briony Benjamin is an author, filmmaker and speaker. In remission for nearly six years, Briony shares her story of being diagnosed with Hodgkin lymphoma at age 31. She talks about her experiences with treatment, the way having blood cancer changed her outlook on life and the advice she’d give to those supporting someone with a blood cancer diagnosis.
Episode resources
Leukaemia Foundation
The Leukaemia Foundation provides services, information and advice for those with blood cancers and those who support them, as well as funding research into the diseases and their treatment. They provide information and support for people who have been diagnosed with blood cancer, carers and friends, people in active treatment and those not in active treatment.
Lymphoma Australia
Lymphoma Australia provide information and services to the 20 Australians diagnosed with lymphoma every day. As well as the Lymphoma Care Nurses Briony talks in her story, Lymphoma Australia provides support to lymphoma patients and people close to them through free resources, education , online forums and support networks and in-person events.
Hodgkin lymphoma
In this episode, Briony shares her experience of being diagnosed with and treated for Hodgkin lymphoma. You can find more information about this disease on the Leukaemia Foundation and Lymphoma Australia websites.
You might notice in this episode that some interviewees use the phrase Hodgkin’s lymphoma. Both Hodgkin and Hodgkin’s lymphoma are accepted names for this disease. It is named for Dr Thomas Hodgkin, who in 1832 described patients with cancers that were affecting their lymph nodes.
Transcript
Vox pops: How common is blood cancer?
What does it mean to be in remission?
How can I support a friend through their diagnosis?
Is it possible to reduce my risks of getting blood cancer?
Narrator: When you’ve got questions about your health, where do you go? From Queensland Health, It Can’t Hurt To Ask is the health podcast answering your questions, concerns and curiosities.
Throughout the season, we’ve been uncovering facts, tips and myths about a range of blood-related health topics. And today, we’re learning more about blood cancer.
Hi, I’m Lauren and this episode was recorded on the lands of the Jagera and Turrbal people. We acknowledge the Traditional Custodians and pay ourrespects to the Elders past and present.
Remember, whatever you hear in our episodes is general information. Always speak to your doctor about your individual circumstances.
Ready? Let’s get into it.
With 1 in 2 Australians diagnosed with cancer by the time they’re 85, it’s likely that you or someone you know will have a connection with cancer at some point in your life.
Today, we’re going to take a closer look at one particular type: blood cancer.
Blood cancers are the third biggest cause of cancer deaths in Australia. In fact, it claims more lives each year than breast cancer or skin cancer.
To put in perspective, there are currently 135,000 people in Australia living with blood cancer or a related blood disorder.
But how is it caused? What are the signs? What’s it like to go through – and survive? And what are some of the common myths or misconceptions?
We’re going to answer all those questions and more, with the help of two experts – Dr Joshua Richmond, and Dr Aarya Murali – who you might remember from our very first episode of the season.
First, let's meet Dr Joshua Richmond.
Dr Richmond: My name's Joshua Richmond. I'm a clinical and laboratory haematologist. I work on the Sunshine Coast.
Narrator: A haematologist is a doctor who specialises in the study and treatment of blood and blood disorders, like blood cancer.
So what actually causes blood cancers to develop?
Dr Richmond: I guess the general explanation is that blood cancers are due to changes in the in the DNA within our stem cells. So the stem cells are really what makes our blood and in almost all cases this is a random event. This is not something that we inherit from our family. And it's not something we can really change through any lifestyle measures.
Most of these mutations occur as we get older and what happens is the damage that it's done to the stem cells causes the stem cells to no longer able to make the white cells, platelets and red cells in an effective way, which is what causes the symptoms.
Narrator: The mutation, or growth of an abnormal type of blood cell, reduces the bone marrow’s ability to produce normal levels of our other blood cells.
This affects the way the rest of the body works. And all those abnormal blood cells? They’re now exploring and travelling around the bloodstream getting into places they shouldn’t.
It doesn’t take much to knock the body out of balance.
When the abnormal cells build up in the blood, they can then spread to other parts of the body, including the lymph glands or lymph nodes. These are lumps of tissue all over the body made up of white blood cells that help fight bacteria, viruses and infection as part of our immune system.
I promise we won’t get too technical in this episode but if you want to dive into the bloodstream in more detail – check out our first episode this season, How Blood Works, after you’ve finished this one!
There are three main groups of blood cancer. Dr Murali is going to break them down for us.
Dr Murali: My name is Dr. Arya Murali. I'm one of the hematology advanced trainees in Brisbane, Queensland. I'm currently employed through Pathology Queensland, seconded at QML Pathology.
You might have heard of things like leukemia, lymphoma, myeloma. Now, each of these are big categories, and within each of these categories, there are again a huge number of subcategories and further disease entities within these categories.
All of these diseases vary incredibly widely in the underlying disease pathway, in what the presenting symptoms and signs are, and what their prognosis and treatment options are as well.
Narrator: Soon, we’ll be hearing from Briony about her experience with lymphoma specifically. But first, let’s learn a bit more about those two other types of blood cancer Dr Murali mentioned.
Dr Murali: In the simplest sense, leukemia is a cancer of the white blood cells, which are the cells in your body that normally help to fight infection. All of the white blood cells are produced within the bone marrow and after they're produced, depending on the exact type of cell, travel to other sites such as your thymus or your lymph nodes and they travel to these sites to mature and to gain experience in a way to help them perform their function which is to help fight infection within the body.
Narrator: Doctors take many individual factors into consideration when working out prognosis, or how the disease will develop, and the best course of treatment.
This might include how old the patient is, any other medical problems, and their tolerance to potential treatments. Then there are disease-specific factors, like what subtype it is or the genetic mutation involved.
Dr Murali: So, in terms of broad brushstrokes, of course many people have heard about chemotherapy and it can be used to treat certain types of leukemias. It can provide disease control and in some cases it can help us target or offer a cure. Bone marrow transplant is another treatment modality that's used in the treatment of leukemias and it can be used to control and provide cure.
In certain types of leukemia there are lots of targeted therapy options which is actually a non chemotherapy sort of medication things such as tyrosine kinase inhibitors, we call them TKIs for short.
Narrator: Myeloma is another type of blood cancer. It occurs in a specific type of mature white blood cells known as plasma cells.
We all have these in our body. They’re basically cells that produce antibodies, or proteins, that see and target foreign antigens or invading threats.
Dr Murali: Now, plasma cells are made in the bone marrow, and much like other white blood cells, and they have their own maturation process. What happens in myeloma is that these plasma cells start replicating or dividing out of control. And as a result of that, what happens is that the normal bone marrow tissue is replaced by these abnormally dividing plasma cells, and the normal bone marrow is unable to produce the normal white blood cells, red blood cells, platelets like it should.
Narrator: This reduction in red blood cells can lead to anaemic-like symptoms, like breathlessness, and lightheadedness. The issues with white blood cells mean you can be more prone to infections.
Destructive lesions within the actual bones themselves can make you more prone to fractures, and the disease can also affect a number of organs and organ systems too.
Dr Murali: In myeloma, we use, you know, there's again a wide range of medications. There are immune modulatory medications. Steroids are used. Chemotherapy can be used. Stem cell transplant can be used. And all of these treatments can be used in various combinations to achieve disease control.
There are also, you know, quite novel monoclonal antibodies that are these antibodies that target specific antigens on these abnormal plasma cells and help to target those plasma cells and clear them. They've also been extremely successful in this space and now the new kids on the block are the cellular therapies that really harness the power of your own body's T cells, your own body's white blood cells to attack the plasma cells and they've shown significant promise in myeloma and I think I'm really excited to see how that plays out in the future.
Narrator: And what about lymphoma? Lymphoma develops from cells called lymphocytes in the lymphatic system. These are a type of white blood cell that helps our body fight infection.
There are over 60 types of lymphomas, but they’re divided into two categories – Hodgkin lymphoma and Non-Hodgkin lymphoma.
Dr Richmond: So, the main difference with Hodgkin lymphoma is there's a particular cancer cell called the Reed Sternberg cell which is found in Hodgkin lymphoma and is not found in non-Hodgkin. So, it's a particular type of cancer cell which we can find on the histology when the when the lymph node is actually examined by the pathologist and they find this particular cell which is really what we call the hallmark of Hodgkin.
Narrator: While a relatively random disease that anyone can develop, we do see most cases of Hodkin’s lymphoma occurring in two age groups: teens and early 20s, and in older people.
Dr Richmond: Lymphomas generally become more common as you become older because there's more chance of a random mutation affecting the lymphocytes and those lymphocytes are constantly regenerating, constantly having to repair themselves. The longer that that happens, the more chance that there can be a mutation that can set off lymphoma.
Narrator: There is currently no screening for blood cancers. So, what are some of the key symptoms?
Dr Richmond: So, in lymphoma the main symptoms can be lymph node enlargement. So that's where the glands that that are in the neck, the armpits or the groin actually enlarge because of overgrowth of some of the lymphocytes that normally are within those glands.
Overtime those lymph nodes become big and painful and they can cause compression of certain structures and body.
The lymph nodes, as they grow, can also cause other symptoms such as night sweats, fevers, and weight loss, and those symptoms can be what we call B symptoms.
Some people get fatigue, skin itch and others symptoms of bone marrow failure, which can be very nonspecific and can take some time for your GP to work out what's going on.
Narrator: Filmmaker and author Briony Benjamin was 31 when she was diagnosed with Hodgkin lymphoma. Living in Sydney and working as Head of Video for a major media company, her life was busy and fast-paced.
Briony: Life was very full, full social life, full sporting life was playing squash and touch footy and there was just sort of this pervasive tiredness that was just hanging over me like a blanket all the time. And I would get sick very easily. But you know, you just put it down to being a bit stressed and I, you know, being a bit just having a busy full life.
Narrator: 18 months passed and Briony continued to feel unwell. Doctors told her that she needed to rest and relax more. But she didn’t improve. It was her parents who ended up pushing and persisting that she saw a haematologist to take a closer look at her bloodwork.
Briony: I was having night sweats on and off. I had itchy skin. I had a bit of a cough that just wouldn't go away, you know. So, it becomes easy to put all those things down to various different things. But actually, it turns out they were all connected.
But luckily my parents persisted and so I went and saw a haematologist and she ordered a bunch of tests, got a CAT scan done, and then sort of said, ‘Oh, I think we'll do a little biopsy. There's an enlarged lymph node in your armpit’. At this point, I still was not worried at all. I really thought there was nothing wrong and we'd just get to another dead end.
Narrator: Briony was told she had Hodgkin lymphoma that was also quite advanced.
Briony: It was stage four B, it’s like as advanced as it can be, which meant it had spread outside of my lymph glands.
It was in my bones, in my hip, in my legs, in my scapula. I just had kind of gone everywhere. And she said, ‘So we're just going to clear your next six months immediately and start you on a course of treatment’. And so then that was at the point where I was living in Sydney at this point with my mum and dad being on the Gold Coast in Queensland, I just felt I just wanted to be home for this time.
Narrator: So how do you process receiving a diagnosis like this?
Briony: You know, I didn't even know what it meant when she said you had Hodgkin lymphoma.
So, to gauge sort of the seriousness of it, I remember just saying, ‘Okay, so it's a cancer of sorts. So, am I going to lose my hair? I remember asking that and she said, ‘Yeah, you will, but it will grow back’. And that was the point at which I suppose it dawned on me. Okay, so this is quite serious then.
I remember my specialist gave really good advice at that point in time. She just said, ‘I don't want you to Google it. We're not going to talk about treatment even today. We're just going to focus on the next three things, which is a heart test, a blood test, and getting you into the IVF clinic.’
So that was that was really good advice. And I say to people, I come back to it all the time now, if I'm a bit overwhelmed, or stressed, okay, don't have to solve everything right now. What's just the next thing I can do. I took that whole approach, you know, throughout the rest of the journey.
Narrator: There are a range of treatments used for lymphoma. The main one for Hodgkin lymphoma is chemotherapy or “chemo” as it’s also known.
This involves using anti-cancer drugs to destroy cancer cells. It’s often given orally or through a needle or catheter into a vein. A catheter is a thin tube that goes inside a vein to deliver a drug or medicine.
Interestingly, Dr Richmond says that children can often tolerate a higher intensity of treatments compared to older patients and because of that, achieve higher cure rates.
Dr Richmond: The chemotherapy protocol that we give to patients depends on the age of the patient and how advanced the lymphoma is. We do know that some patients as they get older can't tolerate the intensity of treatments. So, we do have to change the intensity.
But by and large we do aim to cure Hodgkin lymphoma and in some cases we can use radiation therapy to minimise the chemotherapy that's required to achieve a cure. Chemotherapy is typically given every two weeks in Hodgkin lymphoma and can be given for up to six months. So, it's quite a quite a long journey.
Narrator: The day after her egg retrieval in Sydney, Briony flew home to Queensland and started chemo at the Gold Coast University Hospital the next day. Originally, she was told she would need 18 weeks of chemotherapy or six cycles of three weeks.
However, her response to treatment, coupled with the latest research, meant she ended up needing less.
Briony: My specialist, I was very fortunate that she was really exceptional and up to date on all the latest research and information.
And so brand-new research had just come through from Germany. That said, actually, if halfway through your chemo you are negative, like we can't see the cancer in you and you're in remission, we're going to cut two rounds of chemo off
After my first two rounds of chemo I went in to get my results to work out what we would do for the next round and got almost as big a shock as being told that I had it in the first place.
When my doctor said, ‘You're in remission,’ and I didn't even know what that meant at that point in time. So, I had to clarify – I wasn’t very cancer literate at the point – I said, ‘What? What does that mean exactly?’ And she just said, ‘We can't see the cancer in your body.’ So, it was extraordinary given how advanced it was as well, that with lymphoma it can spread like wildfire really rapidly.
But with treatment, if your body responds, it can respond really quickly as well.
Narrator: Briony ended up having another two rounds of chemo rather than four because of this.
When we say ‘remission’, we mean there is no detectable disease in the body. This is different and purposely used rather than saying ‘cancer-free’.
Dr Richmond: So I guess the term cancer-free is not something we generally use because that imply is that there is no cancer within the body and that implies that the obviously the cancer is not going to come back. As a general rule, I use the term complete remission, partial remission and that implies that the testing that we've done has not picked up any detectable lymphoma. So, the scans that we use, the PET scans, the CT scans are very sensitive but obviously those tests are done to highlight any disease that's active.
So in terms of cancer-free we generally don't use those terms but we use the words complete remission. The longer you're in a complete remission the better the chance of a cure and not having the disease come back.
Narrator: It’s important to acknowledge here that while Briony’s cancer responded well to the treatment, it’s not always the same outcome for everyone.
And of course a diagnosis like blood cancer can impact your mental health, as well as your physical health.
Taking care of her mental health was also really important to Briony and it’s taught her lessons she still practices today.
Including one very helpful piece of advice from her psychologist that helped reframe her outlook.
Briony: One was very early on I went and saw at the Gold Coast Hospital, I went and saw a psychologist, and she dropped a bit of a bombshell on me when I was sort of saying, ‘Oh, you know, I've got to, yeah, lose my hair, but that's okay. You know, it’ll grow back and maybe to teach me to be less vain’ and, you know, sort of grasping at all these sort of positives.
She just said to me, ‘I just want you to know you don't have to find any positives in this and you don't have to find any silver linings. You can hate the whole thing if you want’. which to me felt a bit heavy and I thought, ‘Oh, I don't want to take that energy into it.’
But what it did, it did release a pressure valve to sort of be this perfect patient and get an A triple plus in cancer. And, you know, I often like to use the expression now, you know when you think about a battery, it has a positive end and a negative end and positive only batteries don't work and positive only people don't work either.
It's just if you are forcing this this pressure on yourself to be this really incredibly positive person, it's just really draining and it's not realistic. And so, you’ve just got to sit sometimes and just feel how you feel. It's that balance of not wallowing in it, but you've just got to find a nice balance.
Narrator: Dr Richmond says anxiety and depression can very normal responses to a diagnosis like blood cancer.
Dr Richmond: So, a lot of my patients, certainly when they get a diagnosis of a blood cancer and it's a serious diagnosis, they can get I guess quite anxious and that's very understandable. And anxiety can present with difficulty sleeping, difficulty concentrating, feeling like you're losing control. That's quite common for having a diagnosis like this. Anxiety can also lead on to sort of depression so problems with mood and that obviously is very important to treat if you're going to get through treatments for these blood cancers.
Narrator: Life post-treatment has not been without its challenges, including significant chronic exhaustion, health issues, and the lasting emotional impact of going through such an experience.
But Briony marked five years in remission in 2023. And also welcomed a son, baby Charlie.
The time since going into remission has taught her the balance of accepting that healing and recovery will take time, but remaining positive that it can happen.
Briony: You know, I had a lot of times there where I thought far out, maybe this is life now.
I'm always going to be this tired, I'm always going to be this exhausted. And to have come through it now after such a long period of time and go, wow, it actually is possible.
Narrator: So, the question people ask a lot: how can I support a friend or a loved one going through cancer?
Briony: The message to people that are supporting people through a crisis is be there once the storm has passed because that's when you really need the support and that might look like, you know, life gets busy and you forget and it can be hard to support someone well over a long period of time. It does take a lot of energy.
So even if it's like setting a weekly reminder in your phone just to check in with them, send them a voice memo, you know, a little video, those sort of things can help so much. And another thing I suggest in the book is coordinate with a bunch of other friends. So even if you're like, I actually can't do this on a weekly basis, I don't have capacity, but could you help set up a schedule so, you know, every week someone's calling them that? That's a lovely idea.
Narrator: Briony’s advice to anyone going through cancer themselves is to be their own biggest advocate. Also to write down or record (with permission!) what your doctor says so you can remember details through the fog or shock or go back and ask further questions or explanations. There are no dumb questions.
And in terms of keeping health anxiety post-cancer in check?
Briony: And I think as a cancer survivor, it can be very quick to be triggered and to jump back into that mindset. And I always try to take the approach of I'm not going to worry about anything until I have concrete evidence there is something to worry about.
If something was to flare up, I would, you know, just book an appointment with my doctor or my specialist and go get a blood test and then and not think about it or worry about it until I had some concrete results.
Narrator: In addition to her wonderful team at the Gold Coast University Hospital, Briony also found extra support from the Lymphoma Australia Foundation and the Leukaemia Foundation very valuable.
Briony: They had a nurse that was in the hospital that could just help me navigate system a bit and it was nice knowing you can have a mobile contact number for someone to call. And then yeah, the Leukaemia Foundation were really fantastic. I actually got a call from them once I was out of treatment and this counsellor just called and sort of checked in and said, ‘How you going?’
And I said, ‘Oh, actually I'm really struggling. Yeah, I'm finding it hard,’ and she said, ‘Okay, that's very normal.’ And talked me through a few things and connected me with some other services, including an exercise service, because I think after chemo you're worried about hurting yourself, you're worried about overdoing it or making you fatigue worse. So, they could connect me with I think you could do six sessions with a one on one with that exercise physio.
Narrator: You can find the links to both these foundations in the description of this episode.
How incredible is Briony and her story? We hope you’ve found some of her tips and advice helpful.
To finish, we’ve got a few more commonly asked questions to put to Dr Richmond.
Like, if there are no current screening tests for blood cancer, are there always symptoms we can look out for?
Dr Richmond: Some people come to us without any symptoms at all and they actually have early-stage diagnosis without any symptoms whatsoever
So, it might be a blood test, which is done for another reason. So, they might have a blood test because they're, they've got a check for diabetes. They might have a blood test because they're having a, you know, a issue with their heart. They might come to the emergency department for a different reason. They may have an operation which flags a problem in their blood so that there's a whole variety of reasons. They may just be having a routine yearly blood test as part of just a general health checkup.
Narrator: And do all blood cancers require treatment?
Dr Richmond: So there's a certain percentage of patients that that I see that have a diagnosis of blood cancer, but it can actually be watched and it doesn't need treatment straight away. It needs closed observation. But not all blood cancers need treatment. Certainly, a lot of the acute blood cancers do need treatment and have access to really good treatments, but not every time you get a diagnosis of a blood cancer doesn't necessarily imply you need treatment.
Narrator: Another common question about cancers are the stages.
So, is the stage of one cancer equivalent to the other?
Dr Murali: I said that you've got those big categories, leukemia, lymphoma, myeloma, et cetera, and within them you've got hundreds of different disease entities. Essentially, the stage for each of those entities is quite individualized to that disease, if you like. So, for example, what's stage one in myeloma is not stage one in lymphoma.
Narrator: Finally, as someone who works in the blood cancer space every day, are there any emerging or innovative treatments Dr Richmond is particularly excited by?
One of particular interest is immunotherapy. This uses T-cells which are a type of white blood cell called lymphocytes. They’re a big player in helping your immune system protect you from germs and disease.
Dr Richmond: So, immunotherapy means using the patients T-cells, their own lymphocytes to essentially attack the cancer. Cancer cells are very good at evading the immune system and one of the I guess advances is actually improving the ability of our immune system to better recognise the cancer cells and attack them.
So, there's a treatment called CAR T-cell therapy which has been in the news. Now CAR T-cell therapy means you're taking the T-cells from the patient and you're actually engineering them in a lab to better recognise the proteins on the tumour cells. So that's a process that can take six to seven weeks to do in the lab, but that allows curative options for patients that we know we previously didn't have any curative options for certainly in the acute lymphoblastic leukaemia and high-grade lymphoma space.
Narrator: Incredible!
Another advance is in the diagnostic space in helping us understanding how the disease might act.
Dr Richmond: The advance in diagnosis is really through the genetic testing turnaround times and the scope of genetic testing is actually significantly improved in the last few years. So, we can actually check for a whole variety of genetic changes which we previously couldn't, couldn't pick up and we can understand the disease course and predict the course of the disease later down the track as well.
So that's what we call next generation sequencing which is a, it's a genetic testing which is done in the lab and that can be done on blood and bone marrow and that's done in Queensland which has really made diagnosis and also made prognosis a lot easier for our patients.
Narrator: Thank you for listening to this episode of It Can’t Hurt To Ask. We’ve learnt how blood cancers develop, common signs, current and innovative ways to treat them, and some great ways to support friends or family living with blood cancer.
Thank you to Dr Joshua Richmond and the team at Sunshine Coast Hospital, Dr Aarya Murali and Pathology Queensland and the wonderful Briony Benjamin, for sharing their expertise and stories with us.
We’ve got plenty more blood-related health topics for you to dive into, including blood donation, mosquito-borne viruses, periods and antibodies.
New episodes drop every Wednesday.
If you enjoyed this episode, please rate or review. Even better, tell or share with a friend, family member or colleague who you think would also enjoy this episode.
Until next time, goodbye. And remember, it can’t hurt to ask.