[00:00:00] Adam Walker: GE HealthCare (GEHC) is a leading global medical technology and pharmaceutical diagnostics innovator. GE HealthCare is deeply committed to ensuring that the MBC community gains greater familiarity with the expanding and critical role of molecular imaging in patient care, and that people living with MBC and their loved ones have access to the tools that physicians rely on when developing treatment plans.
[00:00:32] From Susan G. Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:45] Advances in diagnostic imaging have the potential to personalize care for the MBC community. This is because these more disease-specific or target-specific imaging agents can more precisely measure cancer activity and burden at multiple time points starting at the time the patient is diagnosed and is commonly used to determine whether a therapy has been effective. On today’s show we will be discussing diagnostic imaging and its role in breast care to help enable patients to understand their diagnosis and treatment options. Joining us to share their knowledge and experience with diagnostic imaging and self-advocacy are Dr. Hannah Linden, a medical oncologist, and Gwen Manchion, who is currently living with metastatic breast cancer. Ladies, welcome to the show!
[00:01:30] Ladies, welcome to the show. I’m very excited to talk to you. Such an important topic. So, Let’s start off let’s first start broad by defining diagnostic imaging for our listeners. So, Dr. Linden, when we speak about diagnostic imaging in breast cancer today, can you help us understand what that is and what it’s used for?
[00:01:54] Dr. Hannah Linden: So, diagnostic imaging is, you know, a fancy term for the pictures we’re going to take to try to figure out what’s going on. And I think for most women, you know, this is when you get that call back from the screening mammogram. Screening mammography. It’s a screening tool. It’s pretty comprehensive, but it’s a screening tool. So it’s not going to be as deep a picture or as vivid a picture.
[00:02:18] And honestly, when we are screening breasts, we’re comparing the two breasts and we’re comparing with prior screening mammography and just looking for any abnormalities that pop up. It’s a pretty good tool. It’s not perfect but it’s very good. And it’s an advance and allows us to find tumors before you feel them and before they’re a problem.
[00:02:40] So you, you get to be treated with definitive therapy for cure at an earlier stage. It’s huge advantage. But it is screening, it’s not honing in on a specific region of breast. Diagnostic imaging is when you get an ultrasound and a diagnostic mamo. They literally are magnifying it more, so they’re honing in on a particular area.
[00:03:04] And that’s used when you have either a palpable abnormality or an abnormal screening. Breast MR is used when you know that you have breast cancer or you know, you’re at a very high risk for breast cancer. So gene mutation carrier, we would use standard breast screening as with mammography, as well as MRI in those cases.
[00:03:31] But most commonly it’s used for diagnostic workup of when you have a small tumor in the breast or a large tumor in the breast. You want to see how far it’s going, where does it lie on the chest wall, and what are some physiologic differences, which we can light up with contrast between the areas that are abnormal and the areas that are normal in the breast.
[00:03:53] A lactating breast looks extremely abnormal, but you know, it looks like it’s lactating, cause the glands are active. So it can kinda give you a window on what the tumor’s doing and show a greater extent of the disease, point to regions of other abnormalities that are equivocal and that might need biopsy. And that’s where it becomes, it feels like an obvious advantage to the patient.
[00:04:15] So, those are the toolkit for breast diagnostics. The other realm of rdiagnostic imaging is we’re looking at distant parts in the body and our group has done some work on this, both with FES PET and FDG PET, to show that they’re helpful tools to look at what’s happening at a molecular level in various places in the body. But the most common site of breast cancer metastases is bone.
[00:04:45] And so bone can be a challenging spot to image with the standard tools. And there are some advances in molecular imaging for that particular site too that really are huge game changers for people and very helpful in terms of making an accurate and precise diagnosis. In that case of FDG, how fast it’s up to the sugar. In the case of FES, how dense is the functional estrogen expressors?
[00:05:14] So those are more specialized tools. Nowhere near the level of screening, but useful when you’re trying to understand the extent of disease, what we call staging. So if the original workup shows that you have lymph nodes that are positive, then it becomes relevant to go deeper into the body and find out what the cancer’s doing and where it’s hanging out.
[00:05:39] Almost every study that’s ever been done to describe the use of different therapeutics requires measurable disease, meaning 3D, you get calipers around it, you say it’s two by three by four centimeters, some mass, and then you measure that over time and you need to see that those dimensions are shrinking or growing in order to describe it as response or non-response or stable disease.
[00:06:07] So, the bone dominant patients have been left out of all those studies. That’s terrible since our, it’s our most common group. So I’m a believer in the PET.
[00:06:19] Adam Walker: I love your passion for this. That’s great. That’s great. So Gwen I do want to, I want to go to you here. And I’d like to hear about your breast cancer story, your initial diagnosis, and then ultimately your recurrence. Do you mind sharing that with us?
[00:06:33] Gwen Mansion: No problem. It started December 2019. I found a lump. It wasn’t thought to be a super huge mass at the time, but the biopsy confirmed that it was lobular breast cancer and that tends to show bigger once you actually have had a surgery mastectomy. So, I had right away kind of known that, I definitely had lymph nodes involved. I was just already convinced that I did not want to try to have this happen on the other side. I was left sided only but I just wanted to try to be done with this as quick as I could. And so I had a mastectomy. After the mastectomy was done. Actually I can’t remember now if they do staging scans prior to mastectomy or after, I think maybe prior.
[00:07:26] Once they know that you have lymph node involvement, so I had a CT bone scan and I was shown to have just, you know, still limited to lymph nodes and the left breast. And so, we proceeded with thinking that I could have mastectomy, chemo radiate- chest wall radiation, and go be done. After the mastectomy as I’m home recovering from that, you know, I get the pathology back and it’s you know, very scary. It was all of my lymph nodes involved, 29 lymph nodes that they removed and it was all found to have cancer. And the left breast had several lesions, but the largest of which was, I think, almost seven centimeters.
[00:08:10] So I was home, you know, already doing a little bit of diving in and homework and things. And just thinking about what else could happen with this diagnosis. I mean, honestly, knowing that I had already been a high risk patient and was getting MRI and mammogram every six months and never having even heard of lobular breast cancer, even though for about two and a half years I’ve been followed with this every six month interval of imaging, I never heard of lobular and this was all missed.
[00:08:43] And it’s very scary to think that I understand that mammogram…well, first of all, once I learned a little bit about lobular, it’s not a, it’s not surprising that mammogram missed it. I’m still like, a little bit bewildered on how all of this grew when my previous MRI had been about nine months earlier and it missed it as well.
[00:09:06] And so either my body was on just like hyperdrive creating cancer in nine months, or these imaging tools were not, you know, didn’t work for me. So I’m already a little bit sensitive about the topic of feeling like I just can’t get the complete story that, you know, I had never heard of lobular, that these imaging tools aren’t working, that, you know. And so I’m home recovering from mastectomy and prior to radiation- or prior to chemotherapy, I just started realizing that, well, nobody scanned my brain and everything I read about cancer is you know, in every infographic I saw about lobular specific, I mean, it was all the places. It was the stomach, stomach lining, liver, bones, lung, brain. Okay, well, we didn’t cover the brain and so I put in a call to my oncologist and said, I’m just not sure I understand this.
[00:10:01] Why we wouldn’t be scanning this area of the body. Well, it, you know, and understandable, you have to have standards of care, but that was the answer I got. That’s not standard of care. We don’t typically scan the brain and I sort of pushed a little further with, for the nurse to at least relay the message to the oncologist so that we can, I can get like a more complete answer directly from her.
[00:10:24] And it didn’t take a lot of convincing. I think because of the number of lymph nodes, because of the size of the tumor, I was given the okay to get a brain scan. So prior to chemo starting, I also had a brain scan and it was also clear. So here we are doing great. I, you know, go through five months of chemotherapy, you know, lose my hair, the whole bit. Didn’t offer reconstruction, so that’s healing. Everything, you know, it’s just a process. And we get to the end of that five months and I have restaging scans prior to radiation starting and everything checked out from the neck down. And let’s do the brain MRI for good measure and we’ll move on. June 2020, I just was at home just like today, sunny Seattle Day, and you know, just wham like.
[00:11:16] Really did not expect that to happen. There was three to three or four brain metastases found. And so, yeah, I could easily say hands down, worst day of my life. Just really floored, you know? So I suppose the recurrence came, you know, not really as a reOcurrence. It was almost like was I de novo? Although there wasn’t anything on that initial brain scan.
[00:11:38] It just feels like… how did this happen in five months? As you’re also getting chemotherapy. Like I’ve come to find out that one type of the chemotherapy may maybe have reached the brain, but the other type that I was getting for three months, every week for three months was not actually good at reaching the brain. So I wasn’t actually doing anything systemically to help me for the bulk of that five months of chemotherapy. The recurrence was almost less of a reOcurrence and more of thaT.I was probably somewhere going to be stage four from the beginning.
[00:12:10] Dr. Hannah Linden: Yeah, no, you’re the imaging, you know, lobular tumors spread like they’re in single file and they’re really, you know, they’re just much harder to see. And so obviously though, you know, a lot was missed here by traditional imaging. They just didn’t appreciate the extent or depth of the involvement of your tumor. And who knows, you know, what was going on with the brain and the chemo. I’ve definitely seen it where people pop up with this after chemo.
[00:12:37] You know, your brain is protected site for, you know, a lot of good reasons, but some not so good reasons. You know, so, so whether the your brain barrier kept some of the treatment out or whether it’s that the treatment wasn’t good for what your tumor type is, but you know, it’s really disappointing that the imaging, you know, really failed you at every step of the way. You were smart enough to say, could you look at my head? And that has to have, something has to have been there before that, right? I mean, that’s too fast.
[00:13:08] Gwen Mansion: Yeah, it feels very fast. And I didn’t say that I’m estrogen and progesterone positive. Well, I was at initial diagnosis and HER-2 negative by FISH and 2+IHC. So, anyway, a lot of learning has happened since June 2020.
[00:13:28] Adam Walker: So Gwen I’m curious, you know, you advocated for yourself. You felt the need, you knew something else was going on. You spoke with your medical team about, you know, w was that something you were comfortable doing? And do you have any advice to listeners about how to advocate for themselves with their medical teams?
[00:13:46] Gwen Mansion: Yeah. Well, I want to preface it by saying that I definitely feel like it’s just an innate personality trait to be a little bit outspoken. And I also had a bit of a healthcare background, so I think some like scientific healthcare background in addition to kind of just also being a natural, like information gatherer.
[00:14:09] I say researcher, but I, you know, not like, probably not of the caliber that, you know, we might think of researchers, but I am, I’m kind of that I definitely need to know what I’m dealing with. And when you put somebody… when you put that kind of scary diagnosis in front of me, there’s just no way I can just put it in someone else’s hands and not understand really for myself as much as I can what we’re dealing with. So I was always planning, and I always did right from the very beginning of even thinking that I was in a curable state that I was going to be, you know, right there asking the questions, coming to my oncologist with questions.
[00:14:47] So it, it feels a little bit like I might not be, you know, necessarily representative of everybody out there asking people to be an advocate. But I do think there are probably simple things that everyone, I guess I shouldn’t say everyone, but it would be great if people could take, you know, some aspect of advocacy on for themselves and whether that’s really understanding, maybe just their subtype. Finding even one organization, because there’s so many and there’s so many great webinars and so much information, but if you- even if you just hone in on one, and you just kind of use them as your, you know, information gathering.
[00:15:27] I mean, I’m, my inbox is inundated constantly with different things. I could be watching or reading and I go to bed feeling like I didn’t do my homework, oh my gosh, what am I missing? But it doesn’t have to be like that. It can just be one organization.
[00:15:41] It can be, you know, if you’re at a really big cancer center, it may just even be following their webinars. I go between Fred Hutch in Seattle and Dana Farber in Boston, and you know, between those two, I get a lot of information just through my cancer centers. But I guess I just feel like whatever degree that you can be an advocate. Facebook offers a lot of very specific groups to your subtype or to maybe the treatment that you’re on, and you can get a lot of really, you know, meet people through, you know, all these different kinds of, you know, means… Facebook and support groups and things. I would say just try not to do it on your own and and come to your oncologist knowing that they are there for you.
[00:16:28] Adam Walker: So then, Dr. Linden, like how can, or how do you think the standard of care might evolve to limit some of the barriers that exist for patients today?
[00:16:37] Dr. Hannah Linden: The standard of care has radically shifted now we’re, you know, we routinely do genomic profiles, we routinely look for germline mutations. We- there are all kinds of, you know, things that we do for people that just are better than before.But we at the University of Washington, we’re very involved in the development of a tracer using… to help us understand tumors like Gwen’s. And it’s not a screening tool. I mean, I know you wish it was, but it’s not there. It does. It’s not. It’s a fuzzy image and we can’t do that. We could have, at the time that you first were diagnosed, told you that it was going to be in a lot of lymphnodes and figured all that out. I might even seen the brain then. And so we’re getting there With that. This developed a technology that actually old, but but very new.
[00:17:35] The way we used to look at the estrogen receptor was radio lagging binding, but that was in a test tube in the lab. We now do it in the patient. So we can look for estrogen uptake in the body and so in a tumor like yours, we can see it in, in the primary, we can see lymph nodes, and we do actually see the brain and bone very well. We use it for the, to aid in diagnosis of metastatic disease, and also to aid in the staging of the metastatic disease, and to aid in the decision making about… Should you get endocrine therapy or not? Or shoul we give you chemotherapy?
[00:18:12] So I think that’s a huge improvement, but I’m not satisfied. You know, we want to be able to help people when they were in your shoes being diagnosed. And I think, you know, we’re working on that hard because that’s the obvious thing to do. You know, where we, you shouldn’t offer somebody to sit in lymph node if you already know it’s more advanced and you shouldn’t offer somebody a lumpectomy if you already know that it’s not going to work. That shouldn’t have to be a guess and then try on one and see if it fits maneuver. That’s not good.
[00:18:41] So I think we’re going to get there. I think we’ll over that one relatively quickly. And I think it’s in advance. We’re looking at other tracers and other things, but this one is FDA approved. It’s real. We have MR at our facility now. And so I can combine that MRI with that… and I think it’s a real advance for everyone you know it’s sad to me that we’re going to upstage people, we’re going to find out that you have more disease than anybody wants to have. But knowledge is power, you know? Then you can decide what you want to do with it. And I think, you know, you, your experience, Gwen, is like, you know, it’s not just one thing that lay you down, it’s a series of things to let you down, and that, that’s really hard. That’s just a really tough road for a patient because it really doesn’t make you feel trustful of the medical system when you had these tests and it didn’t show up! I mean that’s really crummy.
[00:19:38] Gwen Mansion: Definitely that is definitely a piece of what has happened over the last couple of years is trying to get over some of that whatever you call it, post-traumatic stress, about just like completely feeling like who do you trust? And how? And it put you, put me in definitely in a tailspin.
[00:19:54] I had an FES PET scan actually after learning about it through, through you and through in a webinar that I watched with you and Dr. Elainer, I believe from Hogue and I think that the other thing was I wasn’t sure that it would show the brain meds. They’re all very, they were small and I don’t know how small is too small, but I did want to have that because the first line of treatment CDK four six with endocrine therapy, what’s not working?
[00:20:22] And it’s always like, is it the this? Or is it the this? And you can’t have a biopsy very easy of your brain. So, I was really hoping that this was going to show, you know, estrogen, you know, was still a driver of these, of this particular area of metastatic disease and whether it’s size or whether it’s not a driver.
[00:20:44] Anyways, they didn’t show up. It did also make, give me some sense of like, okay, this tool didn’t, you know, didn’t show cancer in another part of my body as well. Granted, it’s not showing the liver well or the stomach. But at this point I didn’t have a lot of faith in any of the scans I was getting. So this tool would’ve shown me if I had, I think you said, is bone any other area other than the stomach and the liver that I could have felt, okay, a little bit more security. That FES PET did not show any other disease in my body, so that made me feel better. And this was actually after I had hysterectomy at my, like I drove that and they said, no, you don’t really need to have that. Well, I went ahead and had that and found no tumors, thankfully, but cells in my ovaries of lobular breast cancer.
[00:21:36] So again, yeah.
[00:21:37] Dr. Hannah Linden: Cause they’re hanging out right next to the estrogen.
[00:21:40] Gwen Mansion: Exactly right. And I was like, no I’m getting these ovaries out. I’m getting a full hysterectomy. “Oh, it’s not necessary. You can just have you just have shots.” And I was like no, we’re doing this. So, so happy to do that.
[00:21:52] Dr. Hannah Linden: But the ovaries are trophic cause they’re, that’s where your estrogen’s being produced. And so your ovaries… we find those little surprises there. Because you know that, that’s near the source. So you were, you made it, you made a good call.
[00:22:06] Gwen Mansion: Yeah. So after, I think I did the FES after I had found the cells in the ovaries and I was like, okay, where else is this stuff hiding? So I was really happy to have learned about that tool for sure.
[00:22:20] Adam Walker: So, so then last question. Obviously, like we’ve talked about a lot of different scans, and I would imagine a lot of these scans come with some degree of cost for patients. Are there any financial resources that are available to help assist with the financial concerns of patients as they get some of these scans and use some of these diagnostic tools?
[00:22:40] Dr. Hannah Linden: Yeah, so, so, The reason I was sort of talking about these tests is because these are all approved tests that we’re talking about. Ok, so step one is that we need to advocate for our patients and I will tell you that’s a pain in the neck. I mean, it’s not a fun thing. And so some doctors don’t have time for that. And our system, in our system, I personally do it some of the time. My team helps me a lot. My APP is exceptional at this. You know, we, but we all know we have to do it.
[00:23:11] And what I do is I prepare the patient for a, oh, this test or this drug could get disapproved. Or it’ll be approved, but you’ll have a high copay. So what I want you to is just fill out dang form, say the truth. It’s okay. They’re just trying to wear you out. We’re going to keep it going. Don’t pay for it yourself. I, cancer’s not affordable in the US like it, it’s all supposed to be covered.
[00:23:39] And so now it’s our job to make the system cover it for you. So we just go through the process. But what’s I think most frustrating for all of us is it’s an iterative process. Meaning you don’t just, you know, I do my best when I write it. I write on indication for right there. So in bold it says, this is why I’m ordering the test in and I know that that’s got…
[00:24:03] but you know, for some things they’ll say no. And, or they’ll say you know, this is for the expensive oral therapies. They’ll say, oh, congratulations, you’re covered and you have to pay thousands of dollars a month. I’m like, that’s not covered. You know that’s not true. But I, we try to see that coming for people and help them. But one of the ways that our system truly broken is that you gotta be able to do all that to get yourself coverage.
[00:24:30] And so, but my job and my team’s job is to say, well, we’ll help, and don’t just pay for it yourself. Don’t let themem wear you down. We think if you have extra money, maybe you should go on a nice vacation. You know, don’t spend, you should not be spending it on your healthcare that’s not, you know, and I really shouldn’t joke about it, it costs you money to be a patient.
[00:24:53] You have to get to care. You have to miss work for care. You have to track spend time tracking your stuff. It’s expensive and effort to be a patient, so you’re already contributing to the cost, but for we should cover that other stuff. So we try really hard to do that. But I also will admit to you that sometimes there are things I don’t bring up because I know they won’t be covered and I don’t really want to go that route. But I do feel like that there’s a structural bias built in there to try to get me to just give you, you know, some cheap IV drug.
[00:25:28] Adam Walker: Gotcha. Wow. Well, thank you for sharing that. Well, this has been an important conversation a really good conversation. Gwen, I really appreciate you sharing your story with us and opening up your life to us.
[00:25:43] And Dr. Linden, thank you for sharing your expertise in this field and all the work that you’re doing. And thank you both so much for joining us on the show today.
[00:25:52] Advances in diagnostic imaging have the potential to personalize care for the MBC community. This is because these more disease-specific or target-specific imaging agents can more precisely measure cancer activity and burden at multiple time points starting at the time the patient is diagnosed and is commonly used to determine whether a therapy has been effective. On today’s show we will be discussing diagnostic imaging and its role in breast care to help enable patients to understand their diagnosis and treatment options. Joining us to share their knowledge and experience with diagnostic imaging and self-advocacy are Dr. Hannah Linden, a medical oncologist, and Gwen Manchion, who is currently living with metastatic breast cancer. Ladies, welcome to the show!
[00:26:28] Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.komen.org. And for more on breast cancer, visit komen.org. Make sure to check out at Susan G. Komen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.