Categories
Blood Tests Medical Tests Patient Events

Blood Work Basics: Making Sense of Your Test Results

Blood Work Basics: Making Sense of Your Test Results

What do your cancer blood test results really mean and how do they help doctors detect or monitor cancer?

Join hematopathologist Dr. Kamran Mirza and cancer advocate Stephanie Chuang to break down the most common diagnostic cancer blood tests, including the CBC (complete blood count) and the CMP (comprehensive metabolic panel). Learn how pathologists interpret results, what those ranges mean, and how small changes in your numbers can offer big insights into your health.

Blood Work Basics: Making Sense of Your Test Results
Hosted by The Patient Story
What do your blood test results really mean — and how do they help doctors detect or monitor cancer? Learn about the most common diagnostic tests, including the CBC and the CMP.
Powered by
Powered by

Find out more about:

Why doctors order cancer blood tests: What they’re looking for and how to prepare.

Making sense of the CBC: Understand what each number represents — and what it doesn’t.

How blood results guide treatment: From diagnosis to tracking remission or recurrence.

Whether or not you should be worried: When out-of-range numbers matter and when they don’t.

What’s next in the series: Learn how this session leads into condition-specific follow-ups for six different blood cancers.


Blood Cancer United partnership logo

We would like to thank Blood Cancer United for their partnership. They offer free resources, like their Information Specialists, who are one free call away for support in different areas of blood cancer.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.


Edited by: Katrina Villareal


Introduction

Stephanie Chuang: Hi, everyone! Blood Work Basics is part one of a multi-episode program designed to empower you with the information you need for your next blood work appointment. While the other episodes will be about specific blood cancers, this episode is more focused on the initial tests that you may deal with as you try to get a diagnosis or following your initial treatment.

I’m the founder of The Patient Story. I have gone through a myriad of blood tests, poked and prodded constantly, when I was getting diagnosed, which ultimately would be a non-Hodgkin lymphoma, diffuse large B-cell lymphoma, and all through treatment.

I remember having to wait to get my blood drawn. First, it was through my veins; then I got my PICC line and a port. They needed to make sure that my white blood cell counts were okay for me to be able to withstand the next round of chemotherapy. Each round of chemo lasted for about six days at the time, which was definitely not short or easy.

During that time, I started imagining what would eventually become The Patient Story. I felt so lost. There were so many things that I wanted to know the answers to, but I wanted to know them in a humanized way — don’t give me the medical jargon. That’s what The Patient Story focuses on.

We help curate humanized information to help you navigate life at and after diagnosis. We do this through in-depth patient stories, educational programs, and discussions to amplify the voices and concerns of patients and care partners.

Stephanie Chuang
Dr. Kamran Mirza

I want to give a shout-out to our friends at The Leukemia & Lymphoma Society. They have so many fantastic resources, including their Information Specialists, who can help talk about things like blood tests if you need.

While we hope that this discussion is helpful for you, keep in mind that this is not a substitute for medical advice, so please consult with your team about your decisions. Hopefully, you’ll have some questions from this discussion that you can ask.

I’m excited to introduce someone I now consider a friend whom I met as a patient advocate: Dr. Kamran Mirza, the Godfrey Stobbe Professor of Pathology Education, Professor of Hematopathology, and Assistant Chair for Education at the University of Michigan.

Dr. Mirza also shares medical insights online to help people like us, patients and care partners, understand the science of diagnosis. You may know him from social media as @kampathdoc. Dr. Mirza, welcome again. It’s so good to see you.

Dr. Kamran Mirza: It’s always a pleasure to see you. Thank you very much for having me, Stephanie.

Blood Work Basics - Dr. Kamran Mirza

What Does a Pathologist Do?

Stephanie: Dr. Mirza, before we kick off this discussion, we want to humanize the word pathology. A lot of patients, their families, and friends may not see a pathologist during their experience at the hospital or at a clinic. Can you break down what a pathologist does?

Dr. Mirza: I always say to my patients that the pathologist is the doctor you never see or usually don’t see 99% of the time. A pathologist is a physician. They work in the medical laboratory, where all of the human body tissues and fluids go for any type of diagnostic work.

Whenever your physician orders any kind of testing, which could be blood tests, urine tests, or other types of tests like biopsies, they always come to a physician behind the scenes who is a pathologist. The work we do is pathology.

Blood Work Basics - Dr. Kamran Mirza

Like other parts of medicine that you might all be aware of, pathology is also subspecialized. I’m a specialist in blood pathology. My diagnostic area is leukemia, lymphoma, anemia, etc. Similarly, I have colleagues in pathology who deal with disorders of the brain or disorders of the liver, etc. Every part of medicine has a pathologist associated with it. We are physicians who will provide the diagnosis, which is what your patient-facing provider uses in order to treat you.

Stephanie: Thank you. I know there are a lot of things that you do as a pathologist and I’ve learned a lot from that already.

Blood Work Basics - Dr. Kamran Mirza

Initial Testing Before a Diagnosis

Stephanie: When we’re talking about blood cancer and the reason why pathologists are so focused on different blood tests at different times, could you give a generalized overview? If someone has a suspected diagnosis, what is the usual testing done at the very beginning, before people know exactly what they have?

Dr. Mirza: Whenever you present to a doctor, whether it’s a well visit or an urgent care visit, doctors are trying to piece together from your clinical history. They ask about how you’re feeling, how long you’ve been feeling this way, and your family’s health. They’re trying to ascertain whether these symptoms are short-term, long-term, from an ominous cause, or a more benign cause.

When you give a sample of blood, that is a snapshot of your internal health.

Once they’ve established in their mind what path they’re going down, they need to have some backing from diagnostic testing in order to clarify what it is. Typically, diagnostic tests include radiology, which is a visual imaging of the body. If they’re worried that there might be a mass lesion, they may send patients for X-rays or CT scans. The radiologists take a look at a particular part of the body and give you a report.

Similarly, the diagnostic laboratory is the pathology part. What we can provide you in the simplest way is a blood test. When you give a sample of blood, that is a snapshot of your internal health. Your blood can tell you so many things. Because we’re talking about blood cancers, it’s one of the simplest ways for your physician to find out if something is wrong in your blood or in the factory where all of the cells of the blood are made, which is the bone marrow.

Blood Work Basics - Dr. Kamran Mirza

All of us have bone marrow, which is the factory producing all of the cells. It’s inside our long bones, so it’s in the bones of our arms, our legs, and the pelvis. All of these bones are producing marrow, which is going to make all the cells in the blood.

A very simple way to figure out if the factory is working is to take a snapshot of the blood. In the blood, you have different types of cells. You can look at their numbers. Are they going up or down? There are a variety of other things that we can pick up from the blood as well. It can tell you things, whether it seems like an infection or cancer, or if everything seems okay.

All physicians need the next step of diagnostics to move things ahead. Whether it’s radiology or pathology, that’s where you will end up if you’re presenting symptoms to your physician.

Stephanie: Thank you for walking us through that. The stage we’re talking about is a period that’s very hard for people. It’s hard to wait because there are a lot of questions and uncertainty, and there’s no plan of action yet.

Blood Work Basics - Dr. Kamran Mirza

What is a Complete Blood Count (CBC) Test?

Stephanie: In the initial stage, one of the most commonly ordered tests is the CBC or complete blood count. I was diagnosed with non-Hodgkin lymphoma, but I don’t know if any numbers were flagged in my CBC results. What is the CBC? What is it looking for? Can go down each blood cancer area and what the focus may be for pathologists?

Dr. Mirza: The CBC is the complete blood count. There are three different aspects of the CBC that you can start thinking about, which go back to what the blood does.

Our blood carries oxygen. That oxygen is the oxygen we inhale into our lungs and the red blood cells in our lungs pick up all of that oxygen.

If you don’t have enough red blood cells, that might be anemia, for example. Associated with red blood cells is your level of hemoglobin, which is your oxygen-carrying protein. The RBC or the red blood cell count, the hemoglobin, and the hematocrit are used to look for your red blood cell component. Numbers going up or down may indicate that something is wrong with your red blood cells.

Blood Work Basics - Dr. Kamran Mirza

Another thing that your blood does is fight off infections, which are fought off by a variety of cells known as your white blood cells. You have different types of white blood cells. Your white blood cell count is an indicator of inflammation, infection, and a variety of things. The numbers going up or down can also indicate what may be happening to you as a patient.

Blood Work Basics - Dr. Kamran Mirza

The last number that you look for is the platelet count. Platelets are tiny fragments of cells that are floating around. Typically, these are in high numbers. Platelets help you clot or stop bleeding anytime bleeding occurs. For example, when a person who has a normal, healthy bone marrow has a small cut on a finger, that cut clots pretty quickly because the platelets are doing their job and the bleeding will stop. Similarly, you could have internal bleeding and not even know, but normal platelet counts and normal platelet function take care of all of that for you.

The CBC has a variety of numbers on it, but primarily, it’s looking for these three aspects of your bone marrow that produce cells and come out into the blood. It’s a snapshot of how those three things are performing.

What Happens if Your Blood Counts are Abnormal?

Stephanie: I love that you put it into these buckets for people to understand: red blood cell count, white blood cell count, and platelet count, and their different functions. This is not about any specific case but a generalized conversation. As a pathologist, can we go into each area? Let’s say there is an abnormal red blood count, white blood count, or platelet count. What might that generally indicate? How would you suggest further testing, or what are the next steps for the patient?

Dr. Mirza: If white blood cell counts go up, typically the most common reason will be an infection. This can be either a viral infection or a bacterial infection. When you look at the white blood cell count, it may also be associated with a differential count.

Typically, if a patient has a bacterial infection, neutrophils go up. If they have a viral infection, lymphocytes may go up.

A white blood cell count gives you the total number of cells, but that number won’t tell you what the cells are, so we need to figure them out. Either machines or human beings, who are medical laboratory professionals, look at the blood and then count how many different types of white blood cells there are.

There are different types of cells: neutrophils, lymphocytes, and monocytes. These are the words that you would potentially be coming across if you see a differential count. Depending on what is going up, you may have an idea of what it might be. Typically, if a patient has a bacterial infection, neutrophils go up. If they have a viral infection, lymphocytes may go up.

But then, abnormal cells might start showing up in the blood as well and the differential count might flag abnormal cells. These are what we typically call immature cells and by immature, we mean that they came out of the bone marrow too soon. They needed to cook in the bone marrow a little bit longer, but they didn’t and came out.

Now, having immature cells come out can also be part of an infection. It can be normally seen in an infection, but depending on how the patient is presenting, it could be something more ominous or even be part of leukemia, which is a cancer of the blood.

If the blood cancer is just presenting in the lymph nodes… chances are that the blood may not show anything abnormal.

You mentioned before that patients with non-Hodgkin lymphoma sometimes may not have any abnormalities in the blood and that’s absolutely true, like what you experienced. If the blood cancer is just presenting in the lymph nodes, which are all over the body, and you can feel them as masses, then chances are that the blood may not show anything abnormal and you need to take a look at the lymph node in order to diagnose what the lymphoma is.

However, there are other times when lymphoma can be floating around in the blood as well. There are many lymphomas that float around in the blood. They will be picked up in the white blood cell count and differential count as an increase in the number of lymphocytes because lymphocytes are the cells that constitute the blood cancer lymphoma.

Blood Work Basics - Dr. Kamran Mirza

Normal lymphocytes in all of us are floating around and they’ll be within a normal number. But if they go up, it can either be because of a viral infection, or if they’re really, really high, it could also be because of a lymphoma that’s floating around. It’s very context-dependent. These are just numbers. You have to put your story and your history. Every patient will have their own presentation. What we do as pathologists, as your physicians, is put all of that together in order to give a diagnosis.

With red blood cells, often the problem is a decrease in red blood cells. This could be either because of simple things, like a patient not having enough iron in their diet. If they don’t have enough iron, they may not make enough hemoglobin and then their red blood cell count goes down because they have anemia.

Blood Work Basics - Dr. Kamran Mirza

Anemia is a decrease in the oxygen-carrying capacity of the blood. This could be in patients who have been in an accident and lost blood, which can lead to anemia. The red blood cell count goes down because you’ve lost so much blood. It could also be because of nutrition or something more ominous, like a blood cancer. A blood cancer taking over your bone marrow could decrease the number of red blood cells that are being produced and also show up as an anemia.

Context makes a huge difference. If a patient is known to be nutritionally deprived or if it’s a female patient who has very heavy menstrual periods or losing blood regularly, that anemia will most likely be because of iron deficiency. But if there is no history of blood loss, the patient has been doing well nutritionally, and they’re still anemic, then you start worrying why there is anemia. Normally, patients should not be having anemia.

Blood Work Basics - Dr. Kamran Mirza

Lastly, platelet counts can go up or down. Usually, what happens is that the platelet count goes down, which will hinder the ability of the patient to clot properly. For example, a cut happens and they keep bleeding when it should have stopped, or they may have bruises. Under the skin, they see splotches of bruising, even with the smallest amount of trauma and that could indicate that their platelet count is low.

In all of these three cell types, things can go up or down and all of that could be part of a reactive process, which could be benign, or it could be part of a more ominous process, which could be malignant. Again, it all depends on how the presentation has come to the physician and a variety of things that the physician will likely ask you before coming to a conclusion and ordering a test.

Stephanie: Thank you. Even after all these years of advocacy, it was helpful to have them spelled out and learn what they all mean. What I’m hearing is there are signs and signals of your internal health by the CBC, but also, context is important. What you and other healthcare team members are doing is putting together the entire story.

CBC Tests for Non-Hodgkin Lymphoma Patients

Stephanie: Our audience comes from across a lot of different blood cancers, primarily non-Hodgkin lymphoma. We have aggressive and slow-growing Hodgkin lymphoma, chronic leukemia, acute leukemia, multiple myeloma, and myeloproliferative neoplasms. CBC is a very basic test start off with. With non-Hodgkin lymphoma, is it the same with aggressive versus indolent? What are you looking for in the CBC that might be a flag?

Dr. Mirza: Let’s talk about lymphoma in general. I’m sure patients like you are familiar with the fact that we divide them into Hodgkin and non-Hodgkin.

An increase in the number of lymphocytes by itself does not make it lymphoma.

Hodgkin lymphoma by itself typically does not show up in the blood. It will show up usually as masses or lymph nodes that you can palpate, which can be all over the body.

Non-Hodgkin lymphoma can also present with no abnormalities in the blood and just show up as masses or lymph node enlargement in different areas. When it does show up in the blood, that is what we call lymphoma in the blood or lymphoma in a leukemic phase.

Leukemia means there are white blood cells in the blood. Leukemia is a historic term. When people look at blood, they see red because red blood cells have a pigment. Next to them, they saw clear, colorless cells, which looked like they were white. White blood cells are not white at all. It’s just the contrast that they’re not red.

When you see white blood cell counts go up in a lymphoma, which is a non-Hodgkin lymphoma, what we’re typically looking for is an increase in the number of lymphocytes. An increase in the number of lymphocytes by itself does not make it lymphoma. You need to make sure that the lymphocytes that are increased are, for lack of a better term, malignant. They’re all being driven by a genetic problem that is causing a proliferation of lymphocytes that’s not normal. Abnormal lymphocytes are being created and propagated and continue to propagate.

If you are a patient with a lymphoma that did present in the blood, an example of which is chronic lymphocytic leukemia (CLL). Often, CLL is a disease seen in middle-aged to elderly patients. They might feel well, go to their PCP, and get a CBC done, which then shows that their lymphocytes are increased. Then they might do some additional testing, which will confirm that this is part of a lymphoma process. Typically, one of the tests that they do is called a flow cytometry test, a test that confirms that these lymphocytes are lymphoma cells that are floating around.

If we talk about non-Hodgkin lymphomas, you will see an increase in the number of abnormal lymphocytes floating around in the blood. The CBC will only give you the number. You will need extra testing in order to confirm that it’s a non-Hodgkin lymphoma.

Now leukemia can be of multiple types. You can have a myeloid leukemia or a lymphoid leukemia. This all goes back to the bone marrow, which produces all types of cells, including lymphocytes and other types of cells. If a patient has an acute leukemia, then that primarily means that their blood has a very high number of very immature cells.

If we see patients who have lots of blasts in the blood, then we immediately think of an acute leukemia.

What’s happening is that the most immature cell from the bone marrow is not undergoing any differentiation or growing up that it normally does and it’s coming out directly into the bone marrow. These immature cells are called blasts. If we see patients who have lots of blasts in the blood, then we immediately think of an acute leukemia. Very different from non-Hodgkin lymphoma, which are mature lymphocytes but are abnormal and proliferating. Acute leukemia is when blasts are coming out and are very immature.

Flow cytometry studies would be done to figure out whether those blasts are from the myeloid line or the lymphoid line. If they’re from the myeloid line, it’ll become an acute myeloid leukemia and if they’re from the lymphoid line, it becomes an acute lymphoblastic leukemia. But in general, the blood will show you very high numbers of immature cells or blasts.

When a patient looks at the CBC, the WBC count will be increased, but by itself, that doesn’t mean anything. Then you look at the differential count, where they will have counted the number of neutrophils, lymphocytes, and monocytes. There’ll be another one there that will be labeled “other” or “blasts,” and that will be increased. That’s how we will be able to tell the PCP that your patient likely has an acute leukemia.

The bone marrow is throwing out lots and lots of a particular type of cell. Depending on what that type of cell is, we can look at that and figure out what the disease entity is.

With a myeloproliferative neoplasm, it’s when the bone marrow is producing a lot of cells in the myeloid lineage, but they are not blasts. It’s not an acute leukemia, but there can be a high number of red blood cells, which we know as polycythemia vera, or there can be a very high number of platelets, which is known as essential thrombocythemia.

There are different types of myeloproliferative neoplasms. What’s happening there is that the bone marrow is throwing out lots and lots of a particular type of cell. Depending on what that type of cell is, we can look at that and figure out what the disease entity is. Often, patients will need to undergo bone marrow biopsies for that.

You also mentioned myeloma or plasma cell diseases. Plasma cell diseases usually are diagnosed by a bunch of blood tests that look at the number of proteins in the blood, but you also need to have a bone marrow examination. There are times when we can look at the blood and see slightly increased numbers of plasma cells, which are the abnormal cells for myeloma. But again, you have to put into context a bunch of things for myeloma.

You have to take into account any radiological lesions the patient may have. Typically, these patients have lytic lesions in their bones. You also have to take into account their kidney function, how much protein they have in their blood or urine, and how many plasma cells are in the bone marrow. You have to put all of that together to make a diagnosis of myeloma.

The blood and the numbers in the blood going up and down can start pointing us towards what could be happening within the blood cancer world.

To characterize the blasts, you need to study where the cells are coming from and what makes up that cell.

How Do You Process the CBC?

Stephanie: When you talked about the acute leukemias and the blasts, you said that you’re looking at different numbers as you do with all of these. But after the CBC, to confirm for AML or ALL, what is typically the next step in terms of testing? Is there one go-to?

Dr. Mirza: Yes, absolutely. When the blood is drawn, the phlebotomist takes the blood and brings it to the laboratory. The laboratory will immediately run the numbers. When the numbers are off, the machine starts flagging the sample as abnormal.

A medical laboratory professional, another hidden hero in the diagnostic journey, will make a blood smear quickly and start looking at the cells. If abnormal cells are there, we’ll be paged as a pathologist. I will look at it and confirm whether there are abnormal cells.

Typically, in high-resource settings like in the United States, the tests that are done are tests that will characterize the blasts. To characterize the blasts, you need to study where the cells are coming from and what makes up that cell. Is it a myeloid cell or a lymphoid cell?

The DNA of the cell might have some abnormalities that either gives a good prognosis or a bad prognosis.

The first test would probably be a flow cytometry analysis. Imagine if you’re going to a party and you don’t know who anyone is and everyone is wearing name tags. The name tag tells you who you are, where you’re coming from, etc. My tag says I’m Kamran and I’m from Pakistan.

Similarly, blasts have tags on them that can be studied by flow cytometry analysis. What flow cytometry analysis does is it shines a light on all of these cells and identifies what tags these cells are wearing.

When the tags are saying myeloid, we can say acute myeloid leukemia. When their tags are saying lymphoid, we can say acute lymphoblastic leukemia. Flow cytometry analysis is a study of the tags. In high resource settings, we don’t stop there because that’s important from a diagnostics perspective, but we also go forward and help the hematologist-oncologist by giving a prognosis.

Often, prognosis is associated with what is inside the genes of the cell. The DNA of the cell might have some abnormalities that either gives a good prognosis or a bad prognosis. We know, over decades of looking at this, that there are some leukemias that have a better prognosis and some that have a worse prognosis, and usually that stems from DNA. You have to figure out either mutations or looking at chromosomes.

If you are in the United States and you went to a tertiary care center and got a diagnosis of leukemia, you’ll often find a karyotype report, which are your chromosomes. Every human cell has pairs of chromosomes and those will be studied. The DNA in those cells will also be studied.

You’ll get a report with mutations, potentially a report of how chromosomes were affected, and that will all come together in your final pathology report. It won’t just be acute myeloid leukemia; it will be acute myeloid leukemia with translocation 821 or something. It will be a long report that can be very confusing.

It’s telling the hematologist that not only is it leukemia, it’s an acute leukemia, it’s an acute myeloid leukemia, and it’s an acute myeloid leukemia with a particular translocation. All of that will be put together and then that will help guide the hematologist in the treatment, if that makes sense.

What’s the Difference Between CLL and SLL?

Stephanie: You started talking about non-Hodgkin lymphoma and then went into CLL. I know that when we talk about CLL, there’s also SLL. Usually we hear CLL more often, but is there anything that you want to add as to how you look at things on the pathology side?

Dr. Mirza: CLL/SLL is actually one disease entity. You’re absolutely right. CLL is chronic lymphocytic leukemia and SLL is small lymphocytic lymphoma.

What happens is that in this particular disease state, the blood is full of lymphoma cells but lymph nodes are involved as well. When it’s just presenting in the lymph nodes, it’s called small lymphocytic lymphoma. If it’s just presenting in the blood, it’s called chronic lymphocytic leukemia, but it’s the same disease. Often, we’ll call it CLL/SLL. It’s the same disease; it just depends on where you’re picking it up on.

Because the blood is a very easy tap — all you need to do is find a vein and get a little bit of blood out — it’s much easier than doing a lymph node biopsy. Often, it will be diagnosed in the blood. But if a radiologist does a scan and sees a bunch of lymph nodes everywhere, most likely it’s part of the same process. In our classification schemes, it’s all lumped under one: CLL/SLL.

What are the Symptoms I Should Be Looking Out For?

Stephanie: You’ve done a great job laying out some of these signals. We’re talking very generally and in a vacuum, but you’re looking at signals that other people are providing individually. On that note, people might think how they can start to match some of this for themselves.

You talked about anemia, which is something that people are more likely to be familiar with. But what about some of these larger symptoms of things that might be wrong? Could you translate how they might manifest in the body? Could you laundry list and go through the major symptoms, starting with anemia?

When the numbers are off, then their functions are also off. If the function is off, then typically the three buckets are infection, tiredness or breathlessness, and bruising.

Dr. Mirza: Anemia reduces our ability to carry oxygen in the blood. Think about what we need oxygen for. We need oxygen for energy. We burn oxygen for energy, so patients will be tired and feel fatigued. They might be out of breath because they’re trying to breathe in more oxygen because they can’t carry it.

They might look pale. When you look at your hands and you press and get redness, that’s because of the hemoglobin. Under the eyes where you can see redness might be pale. If patients are pale, tired, are out of breath or have increased breathing, those might all be because of an underlying anemia.

For platelets, when they are decreased, you might see prolonged bleeding or bruising. They might accidentally hit their arm against the door and all of a sudden, they have a huge bruise. That’s probably because the platelet count is low.

With white blood cells, because what they’re primarily doing is fighting infections, the patient may present with recurrent infections if the white blood cell count is low.

All of these, when the numbers are off, then their functions are also off. If the function is off, then typically the three buckets are infection, tiredness or breathlessness, and bruising. Those will be the three that relate to the function of the three main types of cells.

What Recurring Tests Will Patients Need to Have Done?

Stephanie: Shifting over to chronic blood cancers, what are the typical recurring tests that patients will likely be undergoing? Also, could you give a little bit more detail of why that’s what they’re looking at?

Dr. Mirza: What your physician wants to know is real-time updates, especially if you have an indolent disease, which means it’s either slow growing or not giving you that many symptoms. For example, there might be situations where if a patient has CLL, they don’t treat it because the number is low, not giving them any symptoms, and was identified by chance. They may give a drug that decreases the number of lymphoma cells, which isn’t heavy chemotherapy.

Ultimately, what we want to do is monitor how the cell numbers look over time. Repeating your CBC may be a very common thing for your physician so that they can keep check to make sure that everything is stable. It isn’t as much about one value; it’s about trending over time.

Take a patient who has CLL. When they presented, the only abnormality was an increased WBC count. There were lymphocytes but no anemia and no thrombocytopenia, which means that the red cells and the platelets were good. They chose no therapy or very minimal therapy and the patient’s fine.

But then when they present the next time, you see that there’s anemia associated. There was no anemia before and there is anemia now. Could this be because the lymphoma is getting worse and it’s disrupting the red blood cells? Or is it all OK? Is their platelet count OK, etc.?

Routine testing can take a variety of shapes accordingly.

I would think of them as real-time updates. You need to figure out whether things are progressing, staying the same, or improving. It could be that the lymphocyte count is totally normal. They got a drug and it took care of many, if not all, of the lymphoma cells. Even though it didn’t cure it, the number is so low that now it’s barely abnormal. It’s more a matter of follow-up.

In some cases, the disorder might be identified genetically. For example, chronic myeloid leukemia has a particular type of mutation or rearrangement in our chromosomes that can be detected by molecular testing. The patient is treated with therapy and can go into remission. All they need is that molecular test to tell the hematologist whether they are in remission or still have the disease.

It depends on what the disease is, how it presented, and what types of tests we have available for it, but routine testing can take a variety of shapes accordingly.

Using Blood Work to Identify Minimal Residual Disease

Stephanie: I don’t want to get too in the weeds, but there’s more and more conversation in the last few years about getting more precise with detection of disease. I don’t know if there’s anything you could talk about with minimal residual disease and in what areas people might be more part of the conversation than others.

Dr. Mirza: That’s excellent. You are so deeply thoughtful; it’s amazing.

Minimal residual disease is our ability to take a look at a very tiny amount of residual disease left after treatment. Our detection methods have become so good that we can potentially detect that.

We want to know before a transplant if the patient free of disease or if the patient has minimal residual disease left.

When we think about minimal residual disease, the two types of diseases that come early to mind are myeloma and B-cell acute lymphoblastic leukemia. We have good mechanisms to figure out if there’s a very tiny amount of disease left. We’re talking about one cell in 10,000 cells.

It’s harder for minimal residual disease studies to be done in acute myeloid leukemia and there are a variety of reasons for it. We can do MRD testing in AML, but it’s harder.

Minimal residual disease can be very helpful in a variety of ways. For some blood cancers, the curative treatment is a bone marrow transplant or hematopoietic stem cell transplant. We want to know before a transplant if the patient free of disease or if the patient has minimal residual disease left. It’s an indicator of their disease status before they go for a transplant.

Minimal residual disease testing can be by PCR or molecular testing, or by flow cytometry testing, depending on what the disease is. There are a variety of tests.

Precision-based therapies target a particular molecular alteration in the disease. We talked about CML. The molecular problem in chronic myeloid leukemia has a drug that you can treat with, but if that problem doesn’t exist, the drug is not going to work.

Patients get cured of CML by using this drug. It’s miraculous. There will be certain mutations that have specific drug targets. There will be certain chromosomal rearrangements that have targets. All of those are important when it comes to longer-term monitoring of testing.

Why Would My Doctor Order a Comprehensive Metabolic Panel (CMP)?

Stephanie: We focused a lot on the CBC. What role does the comprehensive metabolic panel (CMP) play? Those are generally the two tests that patients probably see the most or have ordered the most.

Dr. Mirza: The comprehensive metabolic panel, like the name suggests, looks at the metabolic status of the body. The CBC is looking at the numbers and the differential will look at the types of cells, etc. But the CMP is going to give you a better understanding of the patient’s kidney function, liver function, and electrolytes.

All of this balance is effectively given to us as a snapshot in the CMP.

Electrolyte imbalances are not going to be picked up by the CBC. Blood sugar levels are not picked up by the CBC. When you think of metabolism in the body, you’re trying to figure out how the body is managing the different byproducts of what we eat.

The way we do that is by controlling blood sugar and keeping electrolytes balanced, and those are due to liver function. The liver is a huge player in the metabolism of what we eat. The kidneys are a huge player in what we excrete in the urine. All of this balance is effectively given to us as a snapshot in the CMP.

Blood Work Basics - Dr. Kamran Mirza

How Doctors Decide Which Blood Tests You Need

Stephanie: In the blood cancer space, is CMP a complementary test always given or not necessarily? And in what case is it a must?

Dr. Mirza: If it’s an initial diagnosis and we’re still trying to figure out what’s happening to the patient, I don’t know if it’s a must, but I definitely would order it. I would want to know. Indirectly, it can tell you a variety of things that are happening with different organ systems. It’s reassuring if it’s normal. But it depends on how the patient is presenting.

These are reasonable tests because what they provide you versus the cost is a good cost to benefit ratio.

The patient can have concurrent diabetes and the CBC isn’t going to pick that up. Patients can have CLL and diabetes, but the CBC is not going to pick up the diabetes component. Because CMP is a snapshot of overall health, it’s helpful. Would you need to do it every single time if everything else was normal? Unlikely.

I don’t want to be flippant about it, but in the context of how expensive health care is, the CBC and the CMP are relatively cheap tests. I don’t know the cost, but they’re not very expensive. We’re not talking about thousands of dollars or even hundreds of dollars. The hemoglobin by itself is a very cheap test. These are reasonable tests because what they provide you versus the cost is a good cost to benefit ratio.

Blood Work Basics - Dr. Kamran Mirza

Conditions That are Monitored More with CMP Tests

Stephanie: For blood cancers, is there something where the CMP is more frequently utilized as a complementary test?

Dr. Mirza: Myeloma is a disease where the cancer cell is the plasma cell and the job of a plasma cell is to make proteins. It makes antibodies to fight off infections, but in myeloma, it’s all abnormal. You will need more than the CBC to figure out how much protein there is. That could be a urine test, but it could also be a blood test.

What you find is that in the blood, the normal protein ratio is all out of whack because you have all these abnormal proteins, so you’ll get another test to figure out what type of protein it is. But again, you can think of the CMP as a screening tool, a first test that will give you a big picture and then you can do a more specific test.

Blood Work Basics - Dr. Kamran Mirza

Both the CBC and the CMP in that sense are quick screens. For example, when you get a CBC and the lymphocyte number is up, you need a flow cytometry to figure out what’s happening. Flow cytometry is more expensive. You don’t want to do that for every single person. Similarly, the CMP can guide you and say the liver function is off, so you may want to do a whole other panel of liver function tests, which you don’t want to do upfront.

Blood Work Basics - Dr. Kamran Mirza

Should Patients Check Their Lab Results Online Before Talking to a Doctor?

Stephanie: We’re in the age where many patients get the test result notifications even before they hear from the doctor. Would you recommend that patients take a look at their results online or that they wait? How should they interpret these different values over time?

Dr. Mirza: I’m not hesitating because I don’t know the answer. It’s very nuanced and very patient-specific. It also depends on your level of health literacy in general and your personality.

Some people like to go to the airport early. Some people like to go to the airport late. Some people think knowledge is power, but some people think knowledge is not power and they get stressed out about it.

By law, tests and diagnoses that we write are immediately transferred to the patient portal. There are some scenarios where there is a small pause of a couple of days for whatever reason, like if we feel that the patient may not understand it, giving the physician an opportunity to look at it.

The patient has the full right to know what is happening to them. But it’s tricky to think about how that process unfolds.

Let’s say it’s a Friday evening and the patient went to the clinic and had their blood drawn. I look at the blood, do the flow cytometry, and conclude that they have acute myeloid leukemia. I write acute myeloid leukemia and sign it out. Meanwhile, the patient’s physician is still seeing patients in the clinic, but by the time the patient gets home, they’ll get a result on their patient portal, which says they have acute myeloid leukemia.

Think about this patient. Do they want to know this diagnosis? Do they understand what this diagnosis is? What will happen is that their physician who is going to treat them hasn’t had a chance to talk to them about any of this yet.

But that said, all of the information that we provide in reports is the patient’s material. We’re not gatekeeping anything. The patient has the full right to know what is happening to them. But it’s tricky to think about how that process unfolds.

There needs to be a conversation with your patient-facing provider to make sure that you understand the details of the information that can be bombarded to you.

Now, you can have a patient who is very up in their health literacy, understands exactly what all these things mean, can manage the stress or anxiety associated with this information, and can manage looking online where all sorts of opinions will be there. You need to have trust in your provider. There are so many nuances here.

Ultimately, though, it’s not our information to gatekeep. It is the patient’s information. Broadly speaking, it is correct that the patient gets access to that information, but there needs to be a conversation with your patient-facing provider to make sure that you understand the details of the information that can be bombarded to you.

Remember that even if it’s monitoring of tests, there might be variations of fluctuations. If I look at them, I can say that it’s a tiny fluctuation and no big deal, but the patient might think the worst.

Blood Work Basics - Dr. Kamran Mirza

Within the world of testing, what’s complicated is that in certain situations, certain tests being a little bit flagged is not such a big deal. With hemoglobin, for example, if it’s off by one point or half a point, it may not be such a big deal, especially if it’s in the normal range. But if it’s a creatinine value and it’s off by 0.6, which can go from 0.8 to 1.2, that’s a huge change. It all depends on what the test is and what it’s being monitored for.

A variety of these things will be different based on what was happening with the patient. Was the patient dehydrated? Some numbers might be off. Is the patient on a completely new drug that is making some changes? Did the patient run a marathon before they got the test? All of these things make a big difference in the way the laboratory test results can be interpreted.

At the University of Michigan, we have a Patient and Family Advisory Council, which I co-chair. Patients are actively involved in a bunch of these decisions. Many of the faculty at Michigan are working on things like patient-centered reporting. They’ve looked at patients reading their pathology reports and have figured out that patients don’t even know what the diagnosis is. There’s so much scientific jargon, which can be difficult to write out.

Blood Work Basics - Dr. Kamran Mirza

Similarly, we have a pathology clinic where breast cancer patients talk to their pathologists who show them their cancers. There’s national literature now on patients, by and large, who are feeling value in speaking to their pathologists. This is something that is happening in only a few places, but it’s certainly happening now.

As a pathologist, I went to medical school. No one took away my license to speak to patients. It’s just that we are in a system where that typically does not happen. But it can be valuable to speak to your pathologist.

Your laboratory pathologist’s name is at the bottom of every pathology report. You can call them. Typically, patients don’t, but I have received calls from patients and I try my best to explain their test results. I obviously can’t talk about the treatment as I’m not that well versed on that aspect, but I do know what their biopsy is showing or what their blood test is showing.

Blood Work Basics - Dr. Kamran Mirza

It’s complicated because you want the information to be delivered to the patient in a way that will benefit the patient. Ultimately, it is their information. Let’s say no one follows up on it and it’s been a couple of days. At least the patient will know that something happened. Let’s say you’re in a very remote part of the country. There aren’t that many providers. Nobody’s checking the reports. That would be horrible if the patient didn’t realize that they have something wrong with them.

We have many checks and balances, but sometimes, the checks and balances don’t come through. It is important for the patient to know what their report was. I’m glad in a way that they get it, but that whole process is nuanced.

Stephanie: It’s a necessarily nuanced answer that you have to give because there are so many different situations. I also appreciate that you’re part of that Patient and Family Advisory Council. Thank you for doing all the patient-led work.

Blood Work Basics - Dr. Kamran Mirza

Dealing with Delays in Getting Test Results

Stephanie: You talked about being in the middle of the country versus somewhere, like Michigan, where it’s highly resourced. You have lots of research there and people like you. What are the reasons why people wait sometimes longer than other places for results? Does that have something to do with who they have on staff or whether they have to outsource the reading? How does that work?

Dr. Mirza: We always talk about low-middle income countries or low-resource settings, but there are some areas in remote parts of the United States where they may not have ready access to a laboratory or a pathologist that, for example, you may have in Chicago, New York, or San Francisco.

Often, if it’s a complicated case, then all of these places have contracts, affiliations, and agreements with pathology departments. Ultimately, everybody finds a place for their pathology to be read. But that said, sometimes it can be delayed because of several reasons.

Primarily, anything that’s delayed is because the test has a turnaround time of a particular amount of time. For example, some molecular tests can take up to two weeks. It can take up to a month in some settings.

It can be delayed because of several reasons. Primarily, anything that’s delayed is because the test has a turnaround time of a particular amount of time.

Think about when the blood was drawn. I hate to give this very negative example, but let’s say the blood was drawn in the middle of a state and the closest laboratory is a three-hour drive away. A patient got the blood drawn at 4 p.m. on Friday and the cutoff for the van was 3 p.m. To them, they’ve given the blood at 4 p.m. on Friday, but the actual pick up for the blood won’t be till Monday morning.

On Monday morning, the blood will be picked up. That’ll go to the laboratory three hours away. It’ll be put on the machine. It might be a little bit complicated. They may not have an answer until Tuesday morning. But in their mind, they gave the blood on Friday, but the laboratory only got it on Monday. I’m not defending the laboratory. I’m just saying that sometimes, these things happen.

On Monday, they might get the specimen and say, “Oh, before we give a real answer, we need some specialized tests,” and then somebody like me will probably call their physician and say, “I have to run a few more tests.” They’ll say, “OK, fine.” But then it’ll be Wednesday by the time the answer comes. It can be a little bit complicated. But by and large, if it’s a simple test, it’s pretty quick.

Blood Work Basics - Dr. Kamran Mirza

Conclusion

Stephanie: Thank you so much, Dr. Mirza. We appreciate you joining us. Let’s continue the conversation as this is beneficial to so many people out there.

Dr. Mirza: It’s a pleasure always talking to you. Thanks, Stephanie.

Stephanie: We want to point out some incredible resources from our friends at The Leukemia & Lymphoma Society, including their Information Specialists. You can reach them via phone call, email, and live chat. They also have regional support groups and peer-to-peer connection called First Connection®.

Thank you for joining. I know that there’s a lot to go through. We hope to see you at another program because hopefully, today was helpful for you. Thank you and take good care.


Blood Work Basics: Making Sense of Your Test Results
Hosted by The Patient Story
What do your blood test results really mean — and how do they help doctors detect or monitor cancer? Learn about the most common diagnostic tests, including the CBC and the CMP.
Powered by
Powered by

Blood Cancer United partnership logo

We would like to thank Blood Cancer United for their partnership. They offer free resources, like their Information Specialists, who are one free call away for support in different areas of blood cancer.


Non-Hodgkin Lymphoma Programs


Categories
Blood Tests Diagnosis FAQ Medical Tests Patient Events

Understanding Cancer Blood Tests

Blood Work Basics: Making Sense of Your Test Results

Watch ON DEMAND

What does your cancer blood test results really mean — and how do they help doctors detect or monitor cancer?

 

Listen in as hematopathologist Dr. Kamran Mirza and cancer advocate Stephanie Chuang to break down the most common diagnostic cancer blood tests, including the CBC. Learn how pathologists interpret results, what those ranges mean, and how small changes in your numbers can offer big insights into your health. 

Key Topics:
  • Why doctors order cancer blood tests: What they’re looking for and how to prepare.
  • Making sense of the CBC: Understand what each number represents — and what it doesn’t.
  • How blood results guide treatment: From diagnosis to tracking remission or recurrence.
  • Should I be worried?: When out-of-range numbers matter and when they don’t.
  • What’s next in the series: Learn how this session leads into condition-specific follow-ups for 6 different blood cancers.
Understanding cancer blood test results
The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.

We would like to thank The Leukemia & Lymphoma Society for their partnership.

The LLS offers free resources like its Information Specialists, who are one free call away for support in different areas of blood cancer. 

Register now to get notified about the follow-up program tailored to your cancer type.
Blood Work Basics: Making Sense of Your Test Results
Hosted by The Patient Story
What do your blood test results really mean — and how do they help doctors detect or monitor cancer? Learn about the most common diagnostic tests, including the CBC and the CMP.
Powered by
Powered by
Categories
Kidney Papillary Renal Cell Carcinoma Patient Stories

Laura’s Stage 4 Kidney Cancer Story

Laura’s Stage 4 Kidney Cancer Story

Interviewed by: Alexis Moberger
Edited by: Chris Sanchez

Laura survived stage 4 kidney cancer. 

Originally from south Louisiana, Laura now lives in Southern California. She splits her time between working full time in marketing in the gaming and hospitality industry, being a kidney cancer patient advocate, enjoying her sports and hobbies, and caring for her family. 

Laura had been struggling with her health for at least two years before her symptoms were properly diagnosed as cancer. She suffered from elevated blood pressure and fatigue so significant that she would sometimes have to nap in her car during lunch breaks, and was also found to have a very high red blood cell count. But the doctors she would consult chalked her symptoms up to lack of sleep, stress due to her demanding job, excess weight, and so on.

Later on, Laura’s health took a turn for the worse. She started to experience back pain so bad that she sometimes had a hard time walking, and her legs became so swollen that she was unable to wear pants to a dinner out to celebrate her 29th birthday. She returned to the doctors, who started taking a closer look at her symptoms and ordered more procedures. 

Blood work uncovered kidney issues. Her doctor told her to have a CT scan done that week, but she decided to take immediate action. That very night, just 5 days after her 29th birthday, she went to the emergency room. It was a pivotal and timely decision: the doctors discovered that she had stage 4 cancer and a massive 13cm tumor on her right kidney. The doctors also found that this tumor was what was causing her legs to swell, because it was blocking her vena cava–the main artery bringing blood back up to the heart from the lower parts of the body–making immediate treatment even more urgent. Laura was also diagnosed with the rare genetic disorder, hereditary leiomyomatosis and renal cell cancer (HLRCC), or Reed’s Syndrome.

Laura’s ER surgeon, a kidney cancer survivor himself, connected her with the UCLA-based surgeon who had operated on him years ago, and she ended up heading there for surgery. During a 5-hour session, the surgical team removed her right kidney, right adrenal gland, most of her inferior vena cava, and 7 lymph nodes. However, a checkup some weeks later revealed that the cancer was not only still present but had also spread to her lungs, liver, and nearly all the lymph nodes in her chest. 

Laura started seeing another doctor in Las Vegas, who recommended that she take part in the S1500 PAPMET randomized clinical trial organized by the global cancer research community, SWOG Cancer Research Network. After some deliberation, she decided to join the trial, where she ended up taking the targeted therapy drug Cabometyx (cabozantinib). 

The side effects of cabozantinib were crippling. But just a year after Laura started taking it, she was found to be in complete remission. Out of 147 patients who joined the trial, she was 1 of only 2 who had had a complete response to their treatment. 

Laura continues to be healthy to this day; she undergoes scans every six months, and to date her status continues to be “NED” (no visible evidence of disease). But not only is she enjoying her life once again, she is also now a patient advocate, and actually works with the very doctors who concluded the clinical trial she joined.

Laura is sharing her story with us to show that a Stage 4 diagnosis does not have to be a reason to give up hope; to exhort cancer patients to advocate for themselves as a lifelong responsibility; and to urge them to get to know both their bodies and their disease, in order to be able to make the best possible choices for themselves.

In addition to Laura’s narrative, The Patient Story offers a diverse collection of stories about kidney cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.


 
  • Name: Laura E.
  • Diagnosis:
    • Genetic condition: hereditary leiomyomatosis and renal cell cancer (HLRCC) (Reed’s Syndrome)
    • Type 2 metastatic papillary renal cell carcinoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Profound fatigue 
    • Hypertension 
    • High red blood cell count 
    • Severe back pain 
    • Badly swollen legs
  • Treatment:
    • Chemotherapy: Cabometyx (cabozantinib) assigned under S1500 PAPMET clinical trial

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


I’m not the same person I was before I was diagnosed. There’s no way I could be.

I definitely look at life differently now…

I try my best to live as authentically as possible. Because I know time is a gift.

Introduction

I am 36 years old. I live in Southern California, and I’m originally from outside of Baton Rouge, in the south of Louisiana.

I’m a proud graduate of Louisiana State University, where I got a bachelors and masters from National University. I’ve been working in marketing in the gaming and hospitality industry for over a decade now. Just busy with my family when I’m not at work.

I also like to read and do Zumba and watch global reality TV. I’m actually am part of an all women’s Mardi Gras krewe; I ride in a parade in New Orleans every year and it’s one of my favorite things to do. I just rode earlier this year and I’m already ready for next year.

Pre-Diagnosis

I was having symptoms of my kidney cancer probably two years before I was officially diagnosed. 

I had horrible fatigue and was actually going to my car in my lunch breaks to sleep. My blood work was really off. I would go get my blood work done and there would be this one level that I was like, why is it off? And actually had a doctor tell me, oh, if something was really wrong, it would be like hundreds off the charts.

My blood pressure was high, too. I talked to my primary care doctor and she said, well, hypertension runs in your family. And I said, I know, but I’m in my 20s. It’s usually people in their 40s and 50s in my family that have hypertension.

Everyone just kept telling me, lose weight, get more sleep, reduce your stress. And at the time I was working in marketing for a casino corporation that has multiple properties across the country. I was the marketing manager over three of their properties on the strip. And so I thought, okay, well, I probably am stressed. 

You know, I was working a lot of hours and, and had a lot of responsibilities. My kids were in middle school at the time or late elementary school. And so I just thought that’s kind of how things were. And then it was about six months before my diagnosis.

Diagnosis: Type 2 metastatic papillary renal cell carcinoma

I went to get another biometric screening done, and they almost called an ambulance because my blood pressure was so high.

So I went to my primary care doctor. But she again said, lose weight, reduce your stress. I ran my blood work and my red blood cell count came back really high, which I later found out is an indicator of kidney cancer. But the doctor said, oh, you probably just had an infection or something.

I felt like a hypochondriac at that point. These are all specialists. These are all doctors. They know what they’re doing, who am I to question it? So that was December. 

And then one day in May, ten days before my birthday, I woke up and I just had the most horrific back pain I’ve ever had in my life.

I was honestly struggling to walk. It felt like I was a puppet and someone was just pulling the strings, you know?

And so I went to urgent care because my primary care couldn’t get me in. But it was more of the same. They said, yeah, you probably pulled a muscle here. I was given some muscle relaxers. Of course, they didn’t work.

It progressed to the point that a few days later, for my birthday, we went out to dinner and I couldn’t even put pants on. I had to wear a dress because my legs were really swollen. 

So my mom was in town at the time and I didn’t want to freak her out, so I waited until she left town a few days later to go to my primary care. And when I went there, the doctors did more blood work and said, something’s wrong with your kidneys. I’m going to send you for a CT scan. Go get it done within the week. 

But I was really feeling that it couldn’t wait. Thankfully I didn’t listen. I went to the ER that very night after work. 

The ER doctor diagnosed me with a 13 centimeter tumor on my right kidney and told me I needed to have surgery as soon as possible. He told me to go to a specialty hospital, not to just let any surgeon operate on me, which now that I know so much more about my disease than I did at the time, I realized it’s because it was a very complicated surgery they had to do.

And that was five days after my 29th birthday. I know my outcome would have most likely been very dramatically different had I not gone to the ER that night.

I was also diagnosed with a rare genetic disorder, known as hereditary leiomyomatosis and renal cell cancer (HLRCC), or Reed’s Syndrome.

Reaction to the Diagnosis

It took forever for me to get diagnosed, but once I did, everything lined up into place.

I think I just kind of shut down mentally after the ER doctor said, you have cancer. And I really struggled to process it. I almost felt for a minute there like if I said it out loud, it made it real, you know? I’m a very logical person, but it was hard to process. 

I remember we got home from the emergency room, early the next morning because I had been there all night. I had to call my boss. It was a work day; I actually had a presentation that I was supposed to be giving that day. And so I’m thinking, oh my gosh, I have to call my boss and tell him I have cancer. And I actually sat in my chair in my living room and was practicing saying, “I have cancer” before I called him. I was trying to: one, make my experience a reality and, two, keep myself from crying while I’m telling him this. It just felt like a bad dream, honestly. It didn’t even feel real. 

And there was about a month between my diagnosis and my surgery, and I was in terrible pain the whole month. You know, I just wanted to sleep and just not think about what was happening. So it took me a while, even after my surgery, to really come to terms with what was happening.

And I remember distinctly after my surgery, I was in ICU for, I think, about five days. And then they moved me to a regular room, and it was there that I finally went, I should probably look at my gown and see my doctors. I hadn’t even done that at that point. I think that was the moment that it really hit me, like, oh my God, my life is never going to be the same again. Like I knew that cognitively. But that was my emotional process. This isn’t just “I have surgery and I’m done with it and I move on with my life.” This is forever going to be something that I am now identifying as a cancer patient and cancer survivor.

It’s frustrating whenever I look back, because I know that at the time of my diagnosis, I had to have had cancer for at least a year, probably two plus. And the idea that had I not been diagnosed at stage four, I could have just had surgery and been done with it, I wouldn’t have reached a point where I’m being diagnosed with a terminal phase of this disease. It’s pretty heartbreaking and it’s really frustrating.

I went back and talked to my primary care doctor a few months after I was diagnosed. Obviously, I’d switched doctors at that point. But I talked to to her and the head of the clinic and I said, look, I know that you will probably never see another case like mine again, but, you know, there’s this phrase with rare cancer patients that they tell doctors at medical school to look for horses when you hear hoofprints, not zebras. And I’m a zebra. 

Look, you’re going to go on and treat other patients. And you may never see another case like mine again, statistically speaking, but it doesn’t mean that you don’t have to see other cases that aren’t rare on their own. And I think that we are conditioned a lot of times, especially as women, to just accept diagnoses, if you’re telling me nothing’s wrong, nothing’s wrong, and I’m just going to believe that. But we know our bodies.

I really encourage people to trust their instincts when it comes to their health. You know your body best, you know if something’s wrong with you.

And I really wish I would have just kept listening to that little voice that I had in my head. You know, in my heart that said, Laura, something’s wrong.

I’m glad that I finally did, because that’s what encouraged me to go to the ER that night.

Surgery

The ER doctor told me that he’d already contacted a local urologist in Las Vegas, where I was living at the time, and that the urologist was going to help me get to either USC or UCLA in California for surgery. The ER doctor was very adamant that I needed to go to California for surgery. 

I’m now realizing how extensive the tumor was. It’s not just that it’s 13cm, which is very large for a kidney tumor, but it was also blocking my vena cava, which is your main artery that brings your blood back up to your heart from your legs and all. Which is why my legs were so swollen. And so that’s a life threatening condition, which I’m glad I didn’t know at the time because I probably would have just completely shut down at that point. 

I realize now that’s why the ER doctor was so insistent that he needed to go to California for surgery. And so the next morning we went to the urologist in Vegas, and he said there was one surgeon in town who may be willing to take your case. Didn’t want that. But he said, if you go to California, I’ll get you in at UCLA.

The doctor added, actually, I was you seven years ago, with kidney cancer. And if you go to UCLA, I will send you to the surgeon who operated on me. And sure enough, he did. He actually walked out of the exam room and called the surgeon on his cell phone and said, I’m sending you a patient from Vegas. And so I got into UCLA. 

They did a phenomenal job with my surgery. I was incredibly lucky. I had two amazing surgeons and it was a five and half hour surgery, and they removed my right kidney, my right adrenal gland, most of my inferior vena cava, and seven lymph nodes. And we were hopeful that they’d removed all the cancer. And maybe I would need to do immunotherapy afterwards to keep it from coming back. So that was in June.

Cancer metastasized

But when I had my first scans in August, the cancer was spreading like wildfire. 

And so at that point, the cancer was in my lungs and my liver and pretty much all the lymph nodes throughout my chest. 

And the doctor at UCLA said, I could put you on this one treatment.

Again, I would just go back to if something doesn’t feel right, listen to your body.

I think even as cancer survivors, we tend to dismiss things sometimes, and so even if you’re in your cancer journey or you’re a survivor, you have to.

It’s advocating for yourself as a lifelong responsibility.

Treatment

Treatment Options

The doctor said, I don’t know if it’s going to work for you. I think you probably should look into clinical trials, but if you do that, you’re going to have to come back and forth a lot. And I know that’s going to be kind of a burden for you to do that. So there’s a doctor in Vegas who is a specialist in kidney cancer, and I would recommend you go see her. 

And I was really nervous about switching my care back to Vegas because of the experiences I had before, obviously. I actually had debates with my family and friends on whether I was making the right decision to move my care from UCLA? And I said, you know what? I’m going to go ahead and try it.

And I wound up with the most wonderful oncologist, who, again, was a GU, a kidney cancer specialist named Doctor Vogelzang. And at the first appointment, he sat me down and said, look, here’s what you have. He was the first doctor to explain to me what specific type of kidney cancer I had, answered all my questions, said, I have these treatment options lined up for you. There were all clinical trials because at the time there was no standard of care for the type of kidney cancer I had.

And so he said, here’s the one I think is the best option for you. There were three other ones that he had lined up. And then he said, look, I’ll even do chemo if I have to.  Chemo isn’t usually used for kidney cancer patients. But I was so young that he just was like, I’ll do whatever I can to try to give you as much time as we can. 

So he explained the first trial and he said it’s four different types of treatments. It’s a randomized trial. I can’t promise you which one that you’ll get. We have no control over that. But there is one treatment on this trial that I think would be your best bet. He said, look, think about it. Let me know what you think in your next appointment, what you want to do.

Decision to Join a Clinical Trial

And I decided to join the clinical trial. The clinical trial that I was on was sponsored by a group called SWOG.

Even now people say to me, oh, that was so brave of you to choose a clinical trial. And I recognize now that it was a brave decision to do a clinical trial. And I’m really proud of my decision to do that. But at the time, it just felt like, what choice do I have? I have terrible choices to make. And, if I make the wrong decision, that’s my life in the balance. That’s how it felt.

I also remember having this conversation with a close friend on my next steps. I said, look, the doctor I met with in Vegas is saying he doesn’t think the treatment that UCLA recommended is going to work for me. And let’s be honest, I’m dying anyway. 

So maybe this is a Hail Mary. Maybe this will help me to live a few years. My goal at the time was to see my kids graduate high school. But if not, at least I’ll be doing something that will help other patients at some point. And so that’s why I decided to do the trial. 

Cabometyx (cabozantinib)

 And I remember when they randomized my treatment. My doctor said, oh my gosh, you hit the jackpot. This is the drug I wanted you in. It was a drug called cabozantinib. 

And, at the time, I didn’t know what that was. I thought I was going to be doing immunotherapy, which  I’m now embarrassed to admit because I know the differences between the drugs now.

And so I’m like, I can’t believe I thought I was doing immunotherapy because I just didn’t know the difference. It was a targeted therapy drug. And I started it and I was just terrified. And of course, my doctor explained the side effects and I’m going like, wait, what’s going to happen to me?

But again, I was like, what choice do I have? I mean, I can’t die now. I knew at that point that I had no more than a year and I would be lucky if I had another year. 

And so I actually pulled my kids out of school for my first day of taking my pills. They needed a mental health day anyway, I’m sure, they had been watching me go through this all summer. And so I brought them to this little hotel outside of Vegas. And they have a really nice pool and all and then I’m sitting here thinking gosh, this is probably dumb. What if I take the first pill and I have this terrible reaction and then my kids are, you know, even more scarred, because mom had to go rushing to the E.R., which thankfully didn’t happen.

Side Effects

The side effects of cabozantinib were rough, to say the least. 

What’s hard about being a cancer patient who’s doing one of these newer forms of treatments, like targeted therapy or immunotherapy, is you don’t typically have the same outward side effects that people recognize, whether they think of cancer patients. 

I didn’t lose my hair, but it actually turned white. That’s one of the typical side effects from this type of treatment. And that was heartbreaking for me because I’m 29, 30 years old. My hair is going white; even my eyebrows went white. And it’s just all those things that you try to tell yourself, okay, the prize is I live longer and it’s true. It worked for me. I don’t regret it for a second. I would do it all over again in a heartbeat. But, you know, it does a number on you. It changes who you are.

I always say, kidney cancer helped me take the best pictures of myself that I ever took, which is terrible. I mean, I lost an unhealthy amount of weight. Honestly, looking back at pictures now is honestly kind of painful because I go, oh my gosh, I looked sicker than I realized I did

And because you don’t look like people expect a cancer patient to look, when I got back to work and all, they’d go, you’re doing great now, right? And like, no, I threw up three times before I left the house and had to drag myself out of bed because I was so fatigued and also, these targeted therapy drugs actually create a lot of GI issues. You get horrible diarrhea.

I recall standing in the grocery store aisle like about six months into my treatment, trying to pick out what adult diapers I was going to wear. I’m 30 and I’m buying adult diapers. And then I go to check out, I’m thinking, oh my gosh, this woman’s going to know, right? And she probably thought I was buying it for a grandparent or a parent or something. 

You get all these side effects like it’s almost shameful to talk about. Your body is crumbling. And, again, it’s things that with traditional treatment you don’t always encounter. And of course, the side effects from traditional treatment are also horrible, too.

… if something isn’t sitting right with you even once you’re diagnosed, you know, if your doctor is telling you, oh, you should do this and something’s just not sitting right, get a second opinion. Get a third opinion if you need to.

You have to feel comfortable with your care.

NED Status

I reached NED within a year of starting Cabometyx, which is, like, insane. Incredibly hard to come across, to say the least. 

I had a very rare response where I was 1 of only 2 of the 147 patients who had a complete response to treatment.

I wound up staying on Cabometyx for another about three years, because we just didn’t know what was going to happen after I had that first med scan. And so in 2020, my oncologist said, look, I think the side effects will kill you before the cancer does. Let’s see how you do coming off of it, which was terrifying because at that point it was my security blanket, right? 

But I did successfully transition off Cabometyx. I stopped treatment in April of 2020, and now I have scans every six months. And thankfully I have had NED scans ever since. I just had a scan last January: I’m still NED. So I’m really, really fortunate. 

And now I’m actually a patient advocate for the GU committee. And so I’m now actually working with the doctors that concluded the trial that I was on that saved my life. 

So it’s honestly one of the most meaningful things that I do in my advocacy work, because it’s just a complete full circle.

Knowledge is power in every sense of the word.

You are a better patient if you are knowledgeable about your disease.

Words of Advice

I really encourage people to trust their instincts when it comes to their health. You know your body best, you know if something’s wrong with you. And I really wish I would have just kept listening to that little voice that I had in my head. You know, in my heart that said, Laura, something’s wrong. I’m glad that I finally did, because that’s what encouraged me to go to the ER that night.

Again, I would just go back to if something doesn’t feel right, listen to your body. I think even as cancer survivors, we tend to dismiss things sometimes, and so even if you’re in your cancer journey or you’re a survivor, you have to. It’s advocating for yourself as a lifelong responsibility. 

And, you know, I’ve had the unfortunate gift of being not just a patient, but also a caregiver to my mom who passed away five years ago from complications of kidney cancer and lymphoma. 

Also, I really encourage you, especially if you’re a younger patient who has a rare cancer, get genetic testing done. I encourage my family members to get genetic testing done, and receive their carrier for it as well.

And I always encourage anyone who has any kind of outliers in their health history that would indicate maybe they could benefit from genetic testing to take the tests. I know it’s scary to have a genetic disorder diagnosed, but I really wish I would have had the opportunity to know I had my disorder before I had cancer. 

Knowledge is power in every sense of the word. You are a better patient if you are knowledgeable about your disease, which is what I really try to encourage patients and caregivers to do, to understand their disease. 

And also, if something isn’t sitting right with you even once you’re diagnosed, you know, if your doctor is telling you, oh, you should do this and something’s just not sitting right, get a second opinion. Get a third opinion if you need to. You have to feel comfortable with your care. And if you’re not, you know it. 

So you’re the best person that’s most knowledgeable about yourself, your body. Honor that in all the ways.


Thank you for sharing your story, Laura!

Inspired by Laura's story?

Share your story, too!


More Kidney Cancer Stories

Maria F. kidney cancer

Maria F., Kidney Cancer (Wilms Tumor)



Symptom: Back pain

Treatments: Surgery (nephrectomy), chemotherapy, radiation
...
In Loving Memory: Mia Hamant 2004-2025

Mia H., Kidney Cancer (SMARCB1-Deficient Renal Cell Carcinoma, Non-Sickle Cell Trait), Stage 4



Symptoms: Bad cough, fatigue, nausea

Treatments: Chemotherapy, radiation, immunotherapy
...

Alexa D., Kidney Cancer, Stage 1B



Symptoms: Blood in the urine; lower abdominal pain, cramping, back pain on the right side

Treatment: Surgery (radical right nephrectomy)
...
Bill P

Bill P., Papillary Renal Cell Carcinoma, Stage 3, Type 1



Symptoms: Kidney stone, lower back pain, sore/stiff leg, deep vein thrombosis (DVT) blood clot

Treatment: Nephrectomy (surgical removal of kidney and ureter)

...
Burt R. feature photo

Burt R., Pancreatic Neuroendocrine Tumor (pNET) & Kidney Cancer



Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
...