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Metastatic Breast Cancer: Translating the Tests

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Published on July 24, 2020

Radiologist Explains Metastatic Breast Cancer Tests

What's the difference between a PET scan and a bone scan? ·What's the best imaging modality to follow lobular breast cancer?

In this replay of the third show in our eight-part Let's Talk: Metastatic Breast Cancer series, host and MBC patient advocate Andrea Hutton gets the answers from radiologist, Dr. Lora Barke from the Invision Sally Jobe Breast Cancer Center. They are joined by Tigerlily Foundation patient advocates, Jamil Rivers and Fabianna Marie, who share their testing experiences. Tune in to hear more questions answered and be inspired by our advocates' stories.

This is the third program in our eight-part series. Watch previous programs and register for future episodes here.

This program is sponsored by Seattle Genetics in partnership with the Tigerlily Foundation. These organizations have no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.

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Transcript | Metastatic Breast Cancer: Translating the Tests

Andrea Hutton:
Hello everyone, I'm Andrea Hutton. And welcome to Let's Talk Metastatic Breast Cancer at Patient Power. I'm a patient advocate and been living with metastatic breast cancer since 2010, so I'm quite familiar with the topic of the day, which is testing because I've had quite a few of those tests myself.

We'd like to thank our sponsors, Seattle Genetics. As always, our sponsors have no editorial control. Our content is our own, and I want to thank our guests today for joining us. Our first guest is Dr. Lora Barke. She's a radiologist from Invision Sally Jobe Breast Cancer Center. We also have two women living with metastatic breast cancer and angel advocates from Tiger Lily Foundation, Jamil Rivers and Fabianna Marie. Thank you so much for joining us today.

My story was I found my own lump and went in for a mammogram. I was actually scheduled for a regular mammogram in a few weeks, and we just changed it to a diagnostic mammogram. I could tell right away from the look on the technician's face that I was going to have a problem, and then I just went down into the medical vortex of testing and got my diagnosis. I'm very curious to hear how Jamil if you want to tell your story as well because I know how devastating it can be. I was diagnosed de novo, so I was metastatic from the start. Jamil, what was your experience like?

Jamil Rivers:
I was also diagnosed metastatic de novo from the start. It was the wintertime. My family had caught their colds, and everyone had their turn. Mine stayed and didn't go away. I also had a little pinch on my side that felt like a little pinch like I had pulled a muscle. I know that appendicitis and gallbladder issues run in my family, so I asked for an ultrasound. When I received the ultrasound, that's when they identified I had lesions in my liver. Even though I was feeling totally fine, no real signs or symptoms, I had always fibrocystic breasts, but nothing out of the ordinary. No pain, no lump specifically that was alarming or anything like that.

Having the ultrasound, then we moved forward with the mammogram, the diagnostic mammogram. I could tell even from the radiologist's face during that time that it was definitely breast cancer. The biopsy then determined... Both the breast biopsy and the liver biopsy and the CT scans after that confirmed that I had metastatic de novo breast cancer. My primary tumor was three centimeters, and it had already spread throughout my body. So not just my liver, but my lungs, my stomach, my chest, my lymph nodes, my spleen, and so all over. Sixty percent of my liver was taken over by tumors. I had no pain, was feeling absolutely fine. It was really shocking and scary.

Andrea Hutton:
It's just unbelievable how we can just be walking around in our regular lives, and then find out through these tests that this is what's happening. It's just always a complete and total shock. Fabianna, what's your story? You've been living with triple-negative breast cancer for a very long time.

Fabianna Marie:
I have been living with triple-negative for a very long time. I was diagnosed at 27. I was not diagnosed with metastatic at 27. I went in for a breast reduction surgery because I have an autoimmune disease called lupus. The doctor at the time - since we knew that we couldn't have any more children because of the autoimmune disease had said, "You have some really large breasts," which I did. We went in. The doctor gives you your exam. At the time, I didn't know that he had felt something until he was like, "You know what? Let's go in for... Insurance is going to pay for the test because I like to keep all my bases covered."

I went in for a mammogram, and the mammogram at that time obviously sent up some red flags. I went in for an ultrasound, and I knew at that point stuff was happening. You just feel it, you know it. You're like, "This ain't good. This ain't good." At that time, I also had my biopsy, and then within two and a half weeks, I was having my partial mastectomy. Then within a year and a half, I was then diagnosed with metastatic at that point.

Andrea Hutton:
Dr. Barke, I want to talk about the specifics of some of these tests. We are all familiar with mammograms. We have hearing about mammograms now for a very, very long time. But after the mammogram, there's a whole host of tests that happen to really dig down into that specific diagnosis. The same day as my diagnostic mammogram I had a biopsy, a needle core biopsy, which is extremely painful and unpleasant. After that, there's bone scans and PET scans and all these different types of tests that we go through to then determine the extent of spread, type, all kinds of things.

Can you talk to us? First, what's the difference between a bone scan and a PET scan?

Dr. Barke:
Sure. Thank you so much for having me. It's an honor to be amongst this group of women who've been through a lot. I think this is a really great opportunity to allow us to educate others, so thank you. The difference between a bone scan and a PET scan. Bone scan as it sounds is looking only for bone disease. It's very targeted. As you may know, breast cancer can metastasize to several areas of the body, the more common being bone, lung, liver and brain in addition to lymph nodes.

Many times you have your lymph nodes evaluated at the time of your diagnostic imaging as you were mentioning, and we can look with ultrasound in the armpit or axillary region. Bone scan is really targeting at looking for bones, and it really is detecting processes of growth or repair that are happening within the bone. So essentially it can be a sign of metastatic disease. You can have a bone scan that will show an area of a previous fracture, maybe a fracture that's fairly new or something that we might call subacute. That can also show up on a bone scan or an infection in the bone.

It's not as specific as let's say a PET scan where a PET scan is much more specific for metastatic disease even if we're just targeting our focus on the bones comparing that to what we see on a bone scan. A PET scan is actually more comprehensive. It is much more specific for metastatic disease because we are looking at the chest, abdomen and pelvis. So we are actually hitting with that one study other areas where metastatic disease can occur as we were just talking about such as the liver. So we would see the liver. We would see the lungs, the entire abdomen and pelvis. It is oftentimes a favored study because of that.

The PET scan is actually looking at irregularities of biochemical activity and typically is looking at areas where glucose is being taken up pretty fast.

Andrea Hutton:
That's why we have to drink that milky, chalky, disgusting liquid before because that's what you're seeing lights up basically. Right?

Dr. Barke:
Well, it's actually the injection that you're given, but that's actually why you're told not to chew gum beforehand. You have to be quiet for a while before the study because you don't want all sorts of activity going on in muscles or areas that would show activity.

Andrea Hutton:
The stuff we drink is for the CT portion of the PET scan.

Dr. Barke:
Correct.

Andrea Hutton:
So sometimes you have a PET CT scan.

Dr. Barke:
Yes.

Andrea Hutton:
It's basically two together. Is that recommended?

Dr. Barke:
It is.

Andrea Hutton:
I don't know whether other people have had their insurance company maybe pull one of those tests off just to prove one or the other.

Dr. Barke:
You're right. It's not uncommon that the insurance company may request a bone scan and a CT scan of the chest, abdomen and pelvis before doing the PET CT scan whereas you can actually just do the one study of the PET CT scan, which is preferred by most oncologists.

Andrea Hutton:
Can you also describe to us when you're... Just as a patient we take these tests, and then they say, "Okay, you'll get your radiology report." Is that you? What's the process? Let's peel back the curtain for a second and tell us what we can't see that happens after we go home.

Dr. Barke:
Yes. There are a lot of images taken. Those images need to be processed. Sometimes there's post-processing computer work that needs to be done after your study, and there's specific software that we use to analyze that because some of it is related to enhancing the images so to speak. But then the images come to us, and we then will report those images. We're typically voice dictating those images. We're also sometimes waiting to ensure that we have your other images. We don't like to just look at one study, we like to look at you as a whole person, so we ensure that we know your history, we know exactly what biopsies you've had, what's been diagnosed. All of that is really important information for us to give an accurate and comprehensive report.

Then once we dictate that report, it typically goes to your physician right away via the internet and computer lines that are all secure. Days of faxing are pretty much gone. Reports can get to your physician very quickly. Through medical records systems, they can be accessed very quickly as well to ensure that there isn't a delay in your care.

Andrea Hutton:
Quickly is, I would say, a matter of interpretation from our perspective.

Dr. Barke:
Right.

Andrea Hutton:
Fabianna, Jamil, how many tests have we had? I actually know I have one scheduled probably in November. Fabianna, you can probably speak to "scanxiety" is what we call it. Right?

Fabianna Marie:
I hear from so many women about scanxiety because I'm a writer by profession as well as a naturopathic doctor, so I write a lot of blog posts, and I write a lot of blog posts about obviously how I'm feeling. It's so funny, not funny, but how many people respond with, "Oh, my gosh. I am feeling the same exact way. I get the same exact anxiety. I get the same exact feelings in my stomach." It almost brings you back to the day of diagnosis because whether or not you're metastatic, those feelings are always there. They don't just magically disappear.

Andrea Hutton:
We always hear about the risks for exposure to radiation for having the test but then also we have the need to know what's happening. How do we balance the risks of exposure, and then how much do you really need to know... How much do our radiation oncologists need to know all the time?

Dr. Barke:
It's a really good question. Obviously one of the areas that's been studied very thoroughly is in screening mammography because the concern is are we performing a test that is going to yield important results without doing harm? A lot of studies have been done to look at that. What's nice about mammography is it's very low dose. What has improved over time with studies like CT is that CT has changed and has evolved so that dosing is much lower than it had been. Studies like MRI, you actually don't get any radiation as well as ultrasound. I think there is a balance. Obviously, when there is a finding that needs to be further assessed or potentially even followed, I would have to say that amongst the radiology community there is definitely a balance between how much we recommend and what the dosing is. We think about that.

There is an algorithm called ALARA, As Low As Reasonably Allowed. We really try to keep that dose very low and be conscious of it when we're recommending studies and maybe even try to do an ultrasound so that someone doesn't have to undergo a follow up CT or MRI or something like that to ensure that we're conscious of that. I think the medical community has gotten much better at that.

Having multidisciplinary teams, having conversations with our colleagues, our radiation oncologists and our medical oncologists to discuss what the best test is, is really important. Most places meet weekly to discuss patients to ensure that we're communicating and doing the right thing.

Andrea Hutton:
As a patient, we get to ask our oncologists lots of questions, but we never see the radiologist who's writing the report. I want to encourage everyone who's watching online and our guests, Jamil and Fabianna, this is your chance to ask the radiologist the questions because we never get to see you.

Dr. Barke:
I should say that we have access... It's one of the reasons I'm in this field is because I really do enjoy patient contact, and I want to make sure that I'm doing the best for our patients. As you know, going through a diagnostic study is very different than a screening study so that there is no lapse in time in terms of getting those results. We give the patient results at the time of their diagnostic study, the results immediately, and talk about next steps.

The radiologists are also involved in your biopsies, which should not be painful. We use plenty of anesthesia, so I'm sorry you had that experience, but we really try to make it as comfortable as possible for the patients. That's a great time for us to communicate and have conversations also on how we can participate in your care. But please know that we're always in the background, and we're working with the multidisciplinary team to have collaborative conversations about your care.

Jamil Rivers:
You know how with the scans and you have a treatment and you're trying to assess whether or not your tumors are responding to the treatment, does that length of time vary depending on the treatment?

Dr. Barke:
Yes, it really depends on... We follow the oncologists in this regard. There are some oncologists that will send their patients sooner depending on if it's maybe a palpable area that they're assessing and they're wanting to see if there's treatment response. There is essentially a criteria that's used. There is a criteria called RECIST (Response Evaluation Criteria in Solid Tumors) criteria. It was actually a widely accepted standard in measuring tumor response. It was for this very reason because we wanted to make sure we were all communicating the same way.

It was developed in 2000, and it was reassessed and updated in 2009. I think they're continuing to look at this to ensure that we're doing the right thing. Essentially we're looking at that response. Sometimes patients will come after several treatments and we'll reassess to see if there's response. Sometimes we'll look with ultrasound depending on how the lesion was best seen. Sometimes it will be with MRI or even CT if it's something maybe in the liver or abdomen and pelvis, that sort of thing, maybe in the lung.

There are strict criteria to look at that. For example, a decrease by 30% or greater would yield a partial response or progressive disease might be noted with 20% increase in a lesion or more. Complete response is also found. I'm always happy when I can meet with a patient and tell them that I'm noticing a complete response because we can't see the lesion anymore.

I think it really helps to make sure that you're moving down the right road and going down the right trajectory for the best care and the best therapy for your process.

Andrea Hutton:
We have a question from the community about the tumor markers and how people's tumor markers can fluctuate. They go high low, and then they'll have a scan, and it doesn't always get... They don't necessarily see that reflected from the scan to the tumor markers. Do you have any explanation for that?

Dr. Barke:
Well, it's tough actually. Tumor markers are difficult. Medical oncologists have a lot more information in terms of how they're feeling their tumor markers can modulate. A change for you, maybe a little change, may not show anything whereas a little change in someone else might show something a little bit more significant in terms of imaging. It really is kind of a moving target, and it's one of the things that it's really a data point. You look at one of those things, and then you determine is there something by imaging that we are seeing or that we can find. Sometimes it's a little bit of trial and error I'd have to say to make sure that we're following you the most appropriate way.

Andrea Hutton:
We're getting questions about different machines and different radiologists. How important is it? Should we get second opinions on a scan? Is one radiologist likely to see something that another isn't? How can you make us feel better about where we're going?

Dr. Barke:
Good question. I'm a breast radiologist, which means I did a full residency in radiology, but then I did a year of subspecialty in breast imaging. There are many of us out there, many of us devoted to the field of breast imaging, but not every person who is practicing and reading breast imaging studies is fellowship-trained. That doesn't mean that they're not skilled at what they do, but I think obviously the more you do the better you get. There are requirements from the American College of Radiology to ensure that quality that you're getting.

There's a certain number of studies that need to be read in the field, certain number of procedures that allow us to practice at a particular level.

Andrea Hutton:
Is there a way for a patient to know that? Because like I said, you're behind... not even behind that glass door in the scan, you're... I don't know where the radiologist is.

Dr. Barke:
Right.

Andrea Hutton:
We just get the report through our medical oncologist. Is that a question that I should be... As a patient, should I be asking my oncologist whether the radiologist is a specialist in breast radiology?

Dr. Barke:
I think that certainly is a reasonable question. Do know that accredited programs must have people that meet those certain criteria to even read those studies. There is certainly a minimum level of requirement that the American College of Radiology insists upon for someone to even interpret one of these types of studies. Then beyond that, obviously there is greater expertise for those who really dive into it and really make it their passion. We have a special society, Society of Breast Imaging. So do know that there are a lot of people in my field who are very devoted and dedicated to taking care of our patients.

Andrea Hutton:
What about lobular breast cancer? I know that it's incredibly difficult to diagnose. It looks different. We keep hearing that that's a difficult process. How does that work?

Dr. Barke:
Lobular cancer is the second most common cancer in the breast. The first is ductal. Lobular cancer occurs in about 5% to 15% of all the cancers that we see. The changes can be very subtle on a mammogram. That's because of the pathological structure of the tumor. Essentially the tumor lines up like little rows of cells rather than forming more of a mass-like area and cause destruction of the tissue. It likes to hide. Do know that with the advent of tools like digital breast tomosynthesis, we are able to find lobular cancers a little bit better because we can see architectural distortions, which is one of the things that they do.

MRI is also good at finding invasive lobular cancers, not quite as good as ductal cancers, but it still is a way for us to evaluate the breast for extent of disease prior to surgery. For those patients who are diagnosed with lobular, it really is important to get an MRI for your staging prior to surgery. That's an MRI of the breast specifically. PET scans can see lobular. It's not as sensitive as it is for something like a ductal cancer though.

Andrea Hutton:
Fabianna, can you even guess over the years how many scans you've had or tests that you've had?

Fabianna Marie:
Honestly, I don't think I've ever counted because I feel like when you're in it you're going through these motions, and some days it's like, "Okay, well, we need to do these tests," and then they'll schedule the tests out for three months or six months especially when you're changing chemotherapies or they're changing courses of treatment. Honestly, I don't know. I don't know how many scans I've had at this point or tests or anything else for that matter.

Andrea Hutton:
It's overwhelming. Dr. Barke, what is the future of these tests? Is there anything new that we should know about? Jamil talked about her liver METS and having it throughout her... How many places did you say, Jamil?

Jamil Rivers:
Everywhere. Everywhere except my brain.

Andrea Hutton:
Is there anything new that's been approved or is on the horizon as far as imaging goes?

Dr. Barke:
One really exciting area is markers that are very specific to tumor types and looking at tumor receptors. In May of this year, one of those markers was actually FDA approved. Essentially instead of that typical sugar that is given, that's tagged sugar essentially for a PET scan, which is FDG, it's an estradiol derivative that will target cancers that are estrogen receptor-positive. There are a lot of cancers out there that are estrogen receptor-positive. Obviously, the triple negatives would not fall into this category. For those types of cancers, it's very exciting to have a PET study that can be very specific and look for tumor cells that have this estrogen tag on it.

That's something very exciting that I think will only continue to evolve in terms of very targeted specific type imaging studies. There is also a practice that is being studied that's essentially looking at all the data that we get. There’s tons of data from PET studies, from CTs, from MR, even from tomosynthesis. When that data comes in, the question is can that data be utilized in some way to help predict?

Radionomics is a practice of radiology that is getting a lot of attention, and essentially it's combining all of that data, all anonymized data, and combining that with biology information so that in the future hopefully all of the studies that we've done thus far can help predict when maybe someone comes in five years from now, and we get an imaging study, it will give us more information in terms of what the risk factors are for that particular lesion and what might it respond to better in the future. It's similar to something that some of you may have had like an Oncotype DX study or a MammaPrint study where it gives you more information about risk and recurrence.

Hopefully, we can learn more and more by analyzing data to move us forward in this direction.

Andrea Hutton:
I get this question a lot actually. For metastatic patients who are having PET scans and/or CT scans, et cetera, do they still need to have mammograms? Do they still need to have colonoscopies? I feel like the jury is... I don't know. We kind of swing back and forth on this one. I'm sure my fellow patients are going, "Yeah, if I'm going to have all this stuff, do I really need to have those original ones also?"

Dr. Barke:
Right. It depends on your treatment. Typically, if bilateral mastectomies have been performed, then following up with mammograms as a screening tool is not necessary. If there are clinical findings, then doing some targeted imaging is really important. If one of the breasts was conserved or if maybe you had breast-conserving lumpectomy type surgery, it is really important to continue with mammography because mammography is actually the only test that has proven to decrease mortality and really important to ensure that even for recurrence it's the best tool that we have.

While you may not want to go back to that mammogram, PET studies as I mentioned are less diagnostic for lobular and even some lower grade tumors. If there was a recurrence of something like that, we may not see that on the PET study until it measures over a centimeter or more whereas in a mammogram we can find them when they're much smaller and hopefully deal with that while you still have better options in terms of treatment.

As far as a colonoscopy, doing a CT scan unless it's a virtual CT scan that actually inflates the colon and such, does not help screen for colon cancer. So it really still is important to do colonoscopies or virtual colonoscopies to ensure that we're screening for other cancers.

Fabianna Marie:
I was going to ask the question about ultrasounds versus mammograms because obviously that's been raised... numerous times has been asked of me about why can't we just automatically go to an ultrasound instead of having a mammogram. Like the doctor was saying, she was talking about that, that's still a line of defense. That's still the first thing that they go to.

Dr. Barke:
Yes, I agree. You're absolutely right. The mammogram is the first line of defense, and it's very important to do that. If we do need to add an ultrasound maybe for evaluation of a palpable area like you had, a lump or something like that, very important to use it as a targeted tool. There are different types of breasts out there. Some of them have more fatty tissue and some of them are denser. There are some limitations with mammography. It's not perfect. While we can find cancers in extremely dense breasts even on a mammogram, there are some cancers we may miss in someone who has dense breasts that ultrasound may find.

Ultrasound can be used as a supplementary tool in someone who may have dense breast tissue to ensure that we're improving our sensitivity of finding cancers. You bring up a good point though is about patients who have elevated risk of cancer. Actually, for patients who have dense breasts and a personal history of breast cancer, MRI is a better tool to add to a mammogram as a surveillance type of tool for screening.

Also, in patients who have elevated risk because they may have some genetic mutations, very important to use MRI. MRI has also been studied recently in a screening population of patients who are at average risk and doing it in an abbreviated fashion, so maybe only taking 10 to 15 minutes instead of 30 to 45 minutes. We're hoping that as an improvement in technology, we're going to be able to screen more women down the road and also potentially lower the cost of doing that by doing it in an abbreviated fashion.

What they found was they found two and a half times more cancers using an abbreviated MRI study compared to doing a breast tomosynthesis type study, which is a mammogram that does it in sort of a 3D fashion. I think there's a lot that we're learning, a lot being studied. We're also just trying to improve what we have in terms of technology to make sure that we're utilizing it with our greatest capability.

Andrea Hutton:
If you all have a last-minute ending statement you'd like to share with us about your story and what you're thinking of for the future.

Dr. Barke:
I just want to leave my last word is really about hope. I have a lot of hope for our future. I think what can help us in that regard is utilizing ourselves as vehicles to educate others and ensure that others are getting the screening tools or diagnostic tools that they need especially during times like this where patients may be fearful if they feel a mass that they may not want to leave their house and go get it looked at. It's really important to make sure that those patients get seen in these safe environments that we have in health care because it's so important for them to get diagnosed sooner than later.

Andrea Hutton:
Fabianna.

Fabianna Marie:
For anybody that's watching, obviously seeing and hearing all the numerous tests, it can be so overwhelming. It can be scary. You can fall on fear. At the beginning of this we were talking, and we talked about the fact that I've been MBC now for over 13 years. I got the best piece of advice the very first time I sat in an oncologist's office from a patient who sat next to me and could see how extremely nervous and just scared I was. Her advice to me was, "My darling, 99% of this is going to be your mental fight." I have taken that with me every day, and I give that piece of advice to anybody that ever has to hear those words, "You have cancer.” It is 99% your mental fight along with the numerous tests that we have.

Andrea Hutton:
Absolutely. Jamil.

Jamil Rivers:
I would just echo what Dr. Barke and Fabianna stated. I do believe that your outlook contributes a lot to your quality of life and navigating with living with MBC. I implore all of the patients and caregivers and families and people that are impacted by metastatic breast cancer to really reach out to organizations like Patient Power and other platforms available in order to educate themselves because the screening, the tests, all the innovations are really providing that outlook of time where we're really just trying to get to the next treatment, get to the next scan, uneventful if possible, and just knowing what's available. A lot of the different screenings that Dr. Barke mentioned, I participated in those clinical trials just so that I would have an extra level of scrutiny and monitoring available just because the earlier the better you can intervene. I think the sooner we can be more precise and targeted about our treatments, the better outcomes that we can anticipate.

Andrea Hutton:
Absolutely. Well, thank you all again so much for joining us. You are all inspirational. Thank you for providing messages of hope and also providing additional education for all of our viewers at home. Thank you all for joining us.

I'm Andrea Hutton. I want to thank you again for joining us at Patient Power today. Remember, knowledge can be the very best medicine of all. Thank you.


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