Episode 56: What is DCIS and how is it treated?

The Patient from Hell (00:00.895)
Hi, everyone. My name is Samira Daswani, and I'm the host of the podcast, The Patient From Hell. I have an incredibly cool person with us on this podcast today. I have Erika Bell from the Bay Area Cancer Connections patient advocacy community with us. I'm going to ask Erika to quickly introduce herself, and we're going to dive into a pretty cool, a little sciencey topic today. Hi, Erika.

Erika Bell (00:27.611)
Great. Hi everyone and hi, Samara. I'm so pleased to be with you this afternoon to talk about this study and to talk about DCIS in general. I am the Director of Cancer Information and Education at a local nonprofit cancer support center called Bay Area Cancer Connections. We have been an integral part of cancer support in the Bay Area and beyond for now 30 years.

And we were located in Palo Alto for a long time. A few years ago, we moved our headquarters to San Mateo and we are currently looking at delivering our services even further using a mobile type of resource center. So I'm excited to be here today, tell you more about the ACC and also DCIS.

The Patient from Hell (01:18.591)
Erika, did you know that BACC was one of my first places of outreach when I was diagnosed?

Erika Bell (01:24.923)
That is really good to know and I'm glad that you knew about us because I think that is one of our biggest struggles is making sure that anyone who's newly diagnosed does know about us and all of the ways that we can support people as they go through their cancer. So I'm.

The Patient from Hell (01:40.575)
Yeah, sorry, I didn't mean to interrupt you. I get very excited when I'm talking about back because I got diagnosed in January of 2020. And by the time I found you guys, I think it may have been Feb or March, but all the cancer nonprofits had like, especially the ones that had physical offices had like locked doors already because of the pandemic. So.

Erika Bell (02:03.611)
Yes.

The Patient from Hell (02:05.631)
I remember emailing you guys and going back and forth because I think I was still missing the wig banks at Stanford. And I just happened to get stuck in the like, y 'all had just shut it down and we were looking for a wig. And I remember just going through that. And it was just a moment of I found you guys in the right time and then COVID happened. But then BACC has been part of my experience actually even beyond that, because my wigs ended up going to BACC as well.

So in a way, it was like super full circle for me. So you guys have a very, very special place in my heart.

Erika Bell (02:35.356)
Oh.

Yeah. Oh, thank you so much. That's a very difficult time to be diagnosed and going through that. I remember the day that we decided we had to close our doors and start working from home. And it was a scramble, but I work with an amazing group of women and we pivoted very quickly. And we were able actually to hold our boutique service on our back patio in a very safe way,

and still get people the wigs that they needed during the pandemic, which I think made a huge difference for a lot of people. And as you note, a lot of wig banks did permanently close during the pandemic. And so now we are one of the only go-to places in the Bay Area because so many places have shut their doors. Yeah. Yeah.

The Patient from Hell (03:25.823)
Whoa, I did not know that.

Wow. Okay. On that, on that very bright note. Erika, I would love to talk to you about DCIS. So maybe we start there. Can you just explain it? What is it? How is it different than IDC? How many women get diagnosed with it? Any sort of code? That would be great.

Erika Bell (03:34.331)
Yeah.

Erika Bell (03:50.715)
Yeah, absolutely. So first of all, DCIS stands for ductal carcinoma in situ. And it basically means that the cancer is in place. That's what in situ means inside of the duct of the breast. So within our breast tissue, we have some functional structures called ducts and lobules. The lobules are responsible for making milk when a woman is lactating,

and the ducts I like to think of as sort of the little roads that carry the milk to the nipple where it's expressed for the child. The majority of breast cancers develop in those ductal structures. So I think about 80 % of breast cancers are in the ducts and only 20 % in the lobules. And when ductal breast cancer first develops, it tends to be just an accumulation of cells within that duct.

So sometimes I like to compare it to a straw. If you think of a straw, it has a hole in the middle, and in a duct, there's typically just a single layer of cells that are supposed to line that duct. But over time, as we age, and those cells might accumulate mutations due to a variety of different reasons, the cell growth of those, that single layer of cells can change and there can...

start to accumulate cells in that duct, so multiple layers of cells, to the point where the duct can actually get filled almost like a clog in the straw. And that is the beginning stages of ductal breast cancer. So if a pathologist looks at that and sees that all of the abnormal cancer cells are still contained within the duct and haven't figured out how to break through the walls into the surrounding breast tissue, then they will classify that as ductal carcinoma in situ,

which is also known as stage zero breast cancer.

The Patient from Hell (05:49.887)
That is a very, very cool explanation. I think for the first time, Erika, in four years, I think I finally understand what being a teacher is like.

Erika Bell (06:02.555)
Well, that makes me feel good. I feel like I should have brought a straw with me.

The Patient from Hell (06:08.991)
That was very, very helpful. Okay. All right. So can you talk a little bit about why DCIS is sometimes considered pre -cancer?

Erika Bell (06:19.771)
Yeah, so DCIS in and of itself is not actually life threatening. Breast cancer that hasn't figured out how to break out of those ducts is gonna stay put and then there's no, there's no fear that it's gonna spread somewhere else in the body, which is when breast cancer becomes life threatening. So, sorry, I lost my train of thought for a moment, but a lot of, so in the past, like many, many years ago, we,

weren't very good at detecting ductal carcinoma inside you at all because you can't usually feel it. On occasion, it will form some type of lump or mass that you can feel, but most of the time it doesn't. And so it tends to be diagnosed by being picked up on a screening mammogram. And women until fairly recently, believe it or not, did not undergo frequent screening mammograms. So DCIS is kind of like a

a problem of our newer generation. The problem is that not all DCIS will stay contained in that duct. So if we were able to say with 100 % certainty that, oh, there's some DCIS, nothing's going to happen, it's just going to stay there, we don't need to treat it, then people could move on with their lives and they wouldn't need to undergo any treatment. Unfortunately, a certain percentage of DCIS,

actually does change or mutate and the cells figure out how to break through the walls of the duct and it does become invasive breast cancer. And at that point, treatment is generally required. So there's some research going on trying to discover which DCIS will stay put and is low risk and which is likely to become invasive someday. And if we could give...

people that information upon diagnosis that would stratify how we treat it or not treat it. But unfortunately, the field is not at that point yet. And so in general, most women who are diagnosed with DCIS do undergo surgery. And depending on what type of surgery, oftentimes they also undergo radiation. And then most DCIS is positive for the estrogen receptor.

Erika Bell (08:44.091)
which means that the female hormone estrogen acts like a growth signal for these cancer cells. And so depending on the type of surgery they have and other factors as well, many women also undergo hormone blocking therapy to treat the DCIS. So it's a lot of treatment for something that is very unlikely to affect someone's lifespan.

The Patient from Hell (09:11.839)
I have so many questions. Okay let's roll all the way back to DCIS is a problem of our generation and largely because women are now getting screened usually with a mammogram. So let's say a woman guidelines is what 40+ unless you're an exception but 40+ women get screened for a mammogram.

Erika Bell (09:13.243)
laughs

The Patient from Hell (09:39.679)
There's a finding on the mammogram, what happens next?

Erika Bell (09:43.643)
All right, so DCIS often will show up as a calcification or a little speckles on a mammogram. And some calcifications a radiologist can look at and classify as low risk and likely not DCIS, but some, you know, they're well-trained enough to say, oh, this might be of concern. So the next step tends to be a biopsy where they take a little bit of tissue from that area where the speck is,

and the pathologist looks at it under the microscope and then makes that call as to, you know, are there multiple layers of cells filling the duct? Has it come out of the duct, et cetera? And then after that, you know, they do test the DCIS to see if it expresses the estrogen receptor and the progesterone receptor.

unlike invasive breast cancer where they also test for HER2, which you might know they tend not to for DCIS, although that may change in the future. And then usually the person goes through sort of the same process or similar process as someone who's been diagnosed with invasive breast cancer where they need to meet with a surgeon and figure out what their surgical options are, meet with a radiation oncologist to see if radiation might be necessary.

meet with an oncologist to see what might be recommended there, and then a plastic surgeon as well. Yeah, so.

The Patient from Hell (11:09.279)
reconstruction. Let's maybe go into the conversation for the surgeon. Because a lot of the others seem like they're contingent on that first, I put first in quotes because it's not not the first decision, but one of the earlier decisions. In that conversation, let's say at this point in time, you have the mammogram results, you have biopsy results, the surgeon is essentially an

Erika Bell (11:15.451)
Thank you.

The Patient from Hell (11:36.543)
correct me if I'm wrong, but you're basically choosing between a lumpectomy and a mastectomy, either unilateral or bilateral. Scientific words are really hard to pronounce. Very hard. So you're making that decision. Let's maybe zoom in a little bit more into that decision point because it's, see, and this is where I think the study we were talking about,

Erika Bell (11:46.651)
Yes.

The Patient from Hell (12:03.423)
and we are talking about sort of starts to intercept with this conversation is it's a decision around the type of surgery. And of course you have the reconstruction piece of it as well, but I'm guessing there's also decisions around what type of, how do you gauge if the cancer is still there, it's spread, surgery was effective, not effective. Maybe you can talk a little bit about those decision factors.

Erika Bell (12:30.555)
Yeah, so the surgical decision is a big one and it can be challenging. Some women are not actually given a choice. It depends on the size and extent of the DCIS. So there are times when the DCIS might be as large as like longer than five centimeters and it might span different quadrants of the breast. And if a woman's breasts are small, then the surgeon may say, you know, a lumpectomy would not really give you the...

cosmetic results that you would be happy with. So you'll need to do a mastectomy. But for the most part, most people do have the option of doing a lumpectomy or a mastectomy. And because the outcomes are the same, so the overall survival is the same, regardless of that, which choice you make, it very much becomes up to the individual.

And there are pros and cons with each. There are a lot of people where maintaining their as much breast tissue as possible is the most important thing to them in addition to still having feeling in their breast. So they opt for a lumpectomy. Other people really have a strong urge to just get everything out. I don't ever want to have to deal with this

again, please remove everything. And those people also tend to be thinking about double mastectomies, which in the case of DCIS and no inherited genetic predisposition to breast cancer or no strong family history really is not medically indicated, but there are still women who make that choice, either driven by their anxiety or future screenings or symmetry that they want to achieve, et cetera. So,

It is a very personal choice and it comes down to what women value in their life, what's important to them. Sometimes also the timing of things, maybe how well they do with surgery. It can also do with their thoughts or fears, et cetera, about radiation or hormone therapy. Because if you get a mastectomy for DCIS, you won't need...

Erika Bell (14:46.331)
radiation therapy unless perhaps for some reason they can't get everything out. And then the use of hormone therapy is also not really recommended unless you want to protect the opposite breast. So it becomes more of a preventative. So yeah, there are sort of oncological implications about the surgical choice, but

The Patient from Hell (15:13.791)
These decisions I find are so complicated. It's truly multifactorial decision-making, right? And I think.

Erika Bell (15:19.707)
They are!

The Patient from Hell (15:27.327)
We were in the, a lot of the digital product that has not come to market, but will be coming to market at least from our company is about Mac making, really is about navigating all the decisions and like how they intersect and the order of decision-making and things like that. So we spent a lot of time talking about decision-making at Manta and it is so hard. It is so, so hard. And where clinical data.

Erika Bell (15:38.459)
Okay.

The Patient from Hell (15:53.727)
and scientific understanding start to intersect with preference is actually, it's actually kind of complicated. And I was hoping that we could spend maybe five or seven minutes talking about the PCORI study, right? Because even in our brief interaction prior to this podcast, you said a couple of things about the movement of scientific data, how it's changed over time, how our understanding is evolving, whether a study is still

Erika Bell (15:58.107)
Okay.

The Patient from Hell (16:21.759)
relevant in today's day and age versus kind of getting out of context, and how patients and family members going through this decision-making process can figure out a way to understand the decision dimensions. Sorry, that was a lot of abstract words I just used. Maybe we start with what is the sentiment? I see I knew I was gonna stumble on this today. Sentiment? I cannot.

7 node biopsy. Maybe we start there. Maybe we can talk about the different types of biopsies, how that intersects with surgery decisions, and we can go from there.

Erika Bell (16:51.323)
Okay, I guess.

Erika Bell (16:54.971)
Yes.

Erika Bell (17:02.267)
Yeah, so one thing I didn't bring up in terms of surgical decision-making was the sentinel lymph node biopsy, which is what the study focused on. And that procedure is really a staging procedure. And so it's looking at whether there is cancer in the lymph nodes or not. So we don't often think about our lymph nodes unless we feel them swollen when we're sick.

But in breast cancer, if cancer is gonna travel out of the breast, the first place that it usually travels to is called the axillary lymph nodes, which is the lymph nodes that are under the armpit. So the lymphatic system can, you know, it's a way that lymph flows through our body. And I'd like to think of it almost as our body's like recycling system. So the way that a surgeon can determine whether cancer,

has spread to the lymph nodes or not. In the past used to be to just remove all the lymph nodes under the armpit. And we can have many people can have upwards of 30 lymph nodes under the armpit. And if you do that, that vastly increases the risk of women or anyone developing something called lymphedema, which is a chronic swelling of the arm. You may have seen pictures where people's arms just look like puffy balloons. It's a very difficult

thing to deal with. It's not curable, it's treatable, but it can really affect someone's quality of life. So thankfully, science has progressed and they developed what's called a sentinel lymph node biopsy. And during this procedure, either a blue dye or a radioactive material, or sometimes even a magnetic material,

is injected into the breast, and then that material flows to the first set of lymph nodes under the armpit, the so called sentinel nodes, which is the sentinel is another word for guard. Apparently, it's like the guard of the lymphatic system that drains the breast. And typically, so a surgeon can't see these lymph nodes when they're doing surgery, right? I think.

Erika Bell (19:15.003)
A lot of people think, oh, well, they're just going to go in there and they're going to find my nodes and they're going to carefully remove them. But my understanding, at least not being a surgeon, is that they see the blue dye or they use a little guy your counter to hear the radioactivity. They hone in on that area and they remove that tissue. And on average, there tends to be between one and three lymph nodes that are in that tissue that they remove.

A tissue then gets handed off to the pathologist and processed. And then about a week later, it's determined whether or not there were cancer cells in that tissue and how many lymph nodes were there. So that's in general what a sentinel lymph node biopsy is. But this study was specifically looking at whether doing a sentinel lymph node biopsy,

in the context of DCIS made any difference in outcomes for people. And so it was an observational study, meaning it wasn't a randomized clinical trial where they took a group and then assign them to different treatments. They just looked back on the Medicare database. And this was a study done only in older women. And they all had DCIS and...

Interestingly, all of them had had a lumpectomy, sorry, yes, a lumpectomy for the DCIS. And this is where sort of the age of the study comes in, because nowadays, a lumpectomy for DCIS really isn't done, because if you have DCIS, we're assuming everything is contained within that duct, and the risk of having some invasive breast cancer along with the DCIS.

It's there and it may be determined after the lumpectomy that there was some invasive breast cancer there, but the majority of people won't. And so there's no risk that the DCIS has even traveled to the lymph node because it's all stuck within the duct. So there's no reason to remove lymph nodes in that situation. The situation is a little bit different with a mastectomy because if you remove all of the tissue, you can't really go back and do that sentinel lymph node

The Patient from Hell (21:19.295)
Hmm.

Erika Bell (21:35.643)
procedure without the tissue being there. So it's kind of done as a proactive step in case some invasive breast cancer were to be found when they looked more closely. Then if there was invasive tissue there, you've at least done the sentinel lymph node biopsy and know whether it spread or not. In the setting of the lumpectomy, if they find invasive breast cancer, they can actually go back and pretty easily do the sentinel lymph node.

So nowadays this whole talk about sentinel lymph node biopsy in the terms of lumpectomy and DCIS is a little bit of a moot point and I hope that this is not being done very often, especially in this older population who tends to have very low risk breast cancer.

But if you look at the study, they had high numbers of people who were getting this procedure done. I think the study, you can correct me, but I think it went up to 2013 or 2015 that they looked at people. And they were seeing an increase in sentinel lymph node biopsies for DCIS during that time. So that's a little bit perplexing to me. But to make a long story short, when they compared the group that had a sentinel lymph node biopsy to the group that didn't,

they did not find any difference in their outcomes. So there was no benefit to doing this procedure in terms of recurrence or overall survival. And it seems, according to the summary, that they did show an increase in side effects, though, including that lymphedema that I mentioned. So it was harmful in terms of side effects and not helpful in terms of outcomes.

The Patient from Hell (23:28.863)
Uh, Erika, can I take a stab at summarizing? Cause I think we just covered actually quite a few things. And I think there are a couple of things that you mentioned that I think we should underscore. Um, so maybe I'm going to attempt the summarization. I just asked you to correct me if I get the summary wrong, which happens, you know, very simply often. Um, okay. So if I heard you right, this study was a observational study.

Erika Bell (23:44.315)
Sure.

The Patient from Hell (23:55.967)
So it was not a intervention. Like nothing was being done to this patient. It was just looking at data that has happened in the past, summarizing the data and trying to make sense of it. In that study, the study essentially was seeing the pros and cons of the sentinel node biopsy in the DCIS patient population. And the macro, macro point, I think that you were making that I think is super important to underscore is,

Today, DCIS is considered a very low risk type of cancer. And we don't actually know whether or not the cancer has become invasive. At the point of surgery, the assumption is the cancer has not become invasive. And especially in that if a lumpectomy is happening, there really is no need to do a sentinel node biopsy because we're working under the

educated assumption that the cancer has not even spread within the breast, let alone outside the breast. Is that a fair summary?

Erika Bell (25:03.963)
Yeah, you're exactly right about that. And I just wanted to clarify the instances where invasive breast cancer is detected at the time of surgery. That can happen because the way that we've diagnosed the DCIS, remember, is by biopsy, right? So they're taking little pieces of tissue that they see, but not taking the whole thing out. So it's possible that they haven't sampled the right area.

And that's how, when they do take the entire thing out, there can be evidence of invasive breast cancer.

The Patient from Hell (25:41.247)
And if there is evidence of invasive breast cancer, now we're not talking about DCIS anymore. Anyway, now we're operating under the world where the patient is actually not a DCIS patient. You're talking about a world where it truly is IDC, invasive ductal carcinoma, assuming it's still in the duct.

Erika Bell (25:59.291)
Yes, yeah, and in that context, then the sentinel lymph node biopsy does become important for future treatment decisions, you know, that knowing whether the cancer has spread to the lymph node has implications for radiation, for oncologic treatments like chemotherapy, for example, so yeah.

The Patient from Hell (26:17.471)
So that was a macro point number one. The second thing I heard you say at the very tail end of the summary of the study is there is actually, again, in DCIS, not IDC, in DCIS, if a sentinel node biopsy is being done without knowing that the cancer is invasive, there is actually risk that is being taken on that may harm the quality of life of a patient.

And specifically in the world of side effects, there are many of them, but the one that we are specifically talking about right now is the risk of lymphedema. Is that right?

Erika Bell (26:55.003)
Yeah, I think they saw increased lymphedema, also increased swelling, I believe pain as well. And I can speak from my own experience, not my own personal experience, but in talking to many women who have had a sentinel lymph node biopsy procedure, they often tell me that that incision and healing from that is far more painful and takes longer than the actual breast incision. So this procedure is not without,

I mean, it's way better than when they used to do complete axillary dissections or removing all of the lymph nodes, but it still carries a cost.

The Patient from Hell (27:34.751)
Yeah, if you're okay with it, I'm gonna do a little bit of personal anecdote because there are a couple of things there that I think from a personal lens I can actually speak to. I was not a DCIS patient. I had invasive ductal carcinoma, triple positive. So it wasn't just estrogen progesterone, but I was also HER2 positive. And my tumor was actually in the axilla. The tumor was actually in the axilla.

Erika Bell (27:58.331)
Okay, and not in the breast.

The Patient from Hell (28:00.095)
Not in the breast, it was actually in the axilla. And it took us a while, well, it took me a while to wrap my head around the fact that I had breast cancer that was not in the breast. Turns out that from a biology perspective, it's actually kind of cool. All the way outside the diagnostic window. Definitely not the reaction I had when I got diagnosed, but right now I'm like, huh, cool.

Erika Bell (28:11.035)
You

Erika Bell (28:20.155)
Yeah, yeah, sometimes it doesn't feel good to be an anomaly. It's like...

The Patient from Hell (28:27.167)
No, no, no. I like being on the outlier in general life, but when it comes to cancer, I much rather be in the middle of the pack. I do not want to be an outlier in the world of cancer. So it was in the axillary tail. What I learned was that the breast tissue can sometimes go all the way into the axilla. And therefore there is actually breast tissue up there, which is how I guess it was for me breast cancer.

Erika Bell (28:33.787)
Yes.

I hear you.

The Patient from Hell (28:56.607)
in the axilla. The reason I'm sharing all this is in my case, it was always this like funny, funny dance. It was called a lumpectomy, but it was in the axilla. When it was like, did it spread to the lymph node? I got different answers from different people because, because to the point you were making that there are 30 lymph nodes in the axilla. So I had clinicians who were like, maybe the tumor ate up the lymph node and we can't find it because in the biopsy,

Erika Bell (28:56.667)
Mm -hmm.

Erika Bell (29:05.051)
Hmm.

The Patient from Hell (29:21.599)
sampling bias kicked in and therefore maybe we didn't sample it. So there was all this like back and forth on like, ah, maybe you're not positive, maybe you're not negative, but it doesn't actually change treatment. So it doesn't matter. I was like, okay, took me a while to get around that. So I said all of this because I remember, I actually remember the discussion with my surgeon about axillary lymph node biopsy versus sentinel lymph node biopsy. And in my case, he was like, look, because we're going into the axilla anyway, we actually don't know

which one we're going to do until we open you up. And I remember just sitting there going like, and maybe, okay, I should say this. It's been like three and a half years. So maybe my memory is kind of fuzzy and maybe the conversation happened and like, I don't remember all the details. So like all of those caveats being out there. I just remember being pretty scared because it was this like funny, like I'm going to be under anesthesia and actually don't know what the decision will be.

Erika Bell (30:07.483)
Sure.

The Patient from Hell (30:21.727)
So that was probably one of the more moments of like me actually being a little like, ah, I don't know how I feel about this. And then he did a sentinel node biopsy, did not do the axillary node biopsy in my case, but we did remove three or five. I can't remember how many nodes I should have looked at before this conversation, but three or five, I think in the range. And the risk for lymphoedema was really low, but I had radiation also in the axilla.

And then I got lymphedema and went through the whole dance of lymphedema for a good year and a half. And now even today I wear a sleeve and I fly and all the preventative stuff. It's just, it's interesting because it's when, when the decision was being made, because we were talking about three or five notes, lymphedema and the side effects were not a big factor in the decision. At least not with your number. Now again, it's been three and a half years, my memory, you know.

Erika Bell (30:53.851)
Hmm.

Erika Bell (30:58.363)
Oh wow.

Yeah.

Erika Bell (31:15.867)
Mm -hmm.

The Patient from Hell (31:19.807)
Who knows, but I don't recall doing a lot of like, "Oh, side effects, pros, cons." And in retrospect, I almost wish I had because I at least underscored or underappreciated the impact lymphedema would have on my life. I definitely did not appreciate the impact on the quality of life it would have. And it, looking back, it is definitely one of those symptoms where I'm just like, huh.

Erika Bell (31:36.859)
Hmm.

The Patient from Hell (31:49.503)
I really wish I was not dealing with this nonsense. Sorry, not nonsense, but it's, it's actually very debilitating as a side effect. It is truly debilitating. Like you can't lift your arm above, at least for me I couldn't lift my arm above my head for a good year.

Erika Bell (31:55.323)
Yeah.

Erika Bell (32:04.443)
Oh, wow, gosh. Yeah. So it sounds like your situation was very complex and that decision-making was quite complex, but what you eventually had done sounds like it was very medically necessary. But if you think back to these people who have DCIS where it's actually not really medically necessary, and then you think of the risk of lymphedema, even though it is, as you said, very low, just having a sentinel lymph node biopsy,

these people who are having a lumpectomy are probably also getting whole breast radiation, probably not the same type of radiation that you had experienced to the axilla. But if you can eliminate a risk of lymphedema, I think that's a benefit. So...

The Patient from Hell (32:58.911)
I appreciate the synthesis on my vent. I really do because I am happy with you. I think the, honestly, one of the goals of the podcast is to be able to talk about these things that are pretty, when you're in the space, it doesn't feel very complicated because it's so, it's so common. But as a patient who comes in and out, it, it feels very, very daunting to differentiate like for a very engineering term, signal from noise.

Erika Bell (33:02.235)
Yeah.

Erika Bell (33:21.819)
Mm -hmm.

The Patient from Hell (33:27.167)
Because there's a lot of noisy data, right? Like, there's a lot of just like...

Erika Bell (33:29.499)
Yes.

The Patient from Hell (33:32.959)
Is this relevant? Is this not relevant? It was done 2013, 2015. Is it relevant today? Has science changed? Like it's actually hard to identify relevance and relevance clinically broadly and then relevance to your situation. Almost like you do separate things. And it's, I would love for you to talk about how you do that at BACC.

Erika Bell (33:48.731)
Yes.

Erika Bell (33:57.915)
Yeah, so the program I direct at BACC is our personalized cancer information and education program. And we will, I guess, first, I'll say what we don't do is we don't provide any medical advice or second opinions or recommendations or referrals or anything like that. But what we do do is really educate people and

hook them up to resources and information that can help them with this complex decision-making. So, you know, as we've talked about sentinel lymph node biopsy, it's hard enough to get those words out and understand them. And if you can put yourself back to when you were diagnosed and hearing these things for the first time, it's a whole new language and you don't speak it.

And yet you have to learn it very quickly and you're almost expected to become an expert within a matter of a few weeks. And intertwined with all of that is so many emotions that you're trying to process and likely some grief as well about being diagnosed and denial and just it's very, it's a very difficult time. And so we're there to help with that.

We have programs that help with the emotional and practical parts, but what I do is really focused mostly on the information. I do provide emotional and practical support as well. But my role there is really to help people become kind of the experts that they need to be, to be involved in the decision-making with their medical team. So...

You know, someone could come to me with the paper like this that we're talking about and say, hey, I don't get this. Can you explain this to me? And I could start by saying, well, this actually may not apply to you if you don't have DCIS. But if the person does have DCIS, I can sit down and explain it to them. And then we can talk about what they've been recommended as far as treatments go and what they're thinking in terms of decisions. What

Erika Bell (36:07.163)
questions they need to get answered by their team or other influences in their life and then how they're ultimately going to make these decisions and get through their treatment. So what we do is extremely personalized. We're not like a, you don't pick up the phone and you get a standard answer out of us. We...

we do request as much information from our clients as possible so that we can get them information that's tailored to their specific situation. So usually what will help me understand their situation is their pathology report, any genetic testing that they've had done, for example, or genomic testing on a tumor if that's been done.

any recommendations that they've been given and then also a talk about kind of what they value and what's important to them.

The Patient from Hell (37:02.847)
Thank you for sharing that. I'm watching the clock a little bit and I'm conscious of time. My last question to you is more personal, Erika, why go from being a molecular biologist to doing what you do today?

Erika Bell (37:04.219)
Yeah.

Erika Bell (37:15.643)
Oh, that's a great question. Well, let's see, I first got into becoming a molecular biologist because of my family. So I was interested in genetics at a very young age because there is a genetic disorder that runs in my family, which I don't have, but my grandmother did, my mother does, my brother does, my niece does. And that's called neurofibromatosis type one. That's a mouthful.

But because of that, I always thought I was always intrigued by genetics. And I thought that someday I wanted to become an expert in that and figure out how to basically solve that disease or, or make it better at least. So I embarked on getting my PhD in molecular biology at that UCSF. And then after that, I did a short postdoc at the cancer center there, studying the specific pathway that's disrupted in that disease.

and I thought this is what my future was going to be like. But I have to say I was frustrated at the end of every day. Don't know how well you know science, but it usually there's a lot of failure, you know, there's you can run an experiment 100 times and not have it work for a variety of reasons. And then finally, that hundred and first time it works and then things are great for you. But you have to deal with the fact that most of what you do,

is not showing much. You have to do it over and over again. And I needed, I just felt deep within myself that I needed something that felt more impactful at the end of the day, more fulfilling. I don't mind pipetting, but I also do, I'm more of an introvert, but I do like talking to people.

And so it actually was the birth of my first child that made me realize I actually need a career change. And I happened upon the job description at BACC. And when I interviewed there, I thought, I don't even understand what this job is or if I could possibly do it. But I don't know. These people seem nice and it sounds interesting.

Erika Bell (39:34.331)
And then they decided to hire me, which I thought, okay, well, I guess they have some confidence that I can do this. So I better figure out how I'm going to do this. And then, yeah, through a lot of reading, and we used to have a program where doctors would come to our office and hold an open house where clients could come and ask questions. I learned so much, and then attending national meetings. So it was kind of like self-taught.

And that was about 14 years ago and I've been with the organization ever since and I tell them all the time that I'm never gonna leave.

The Patient from Hell (40:18.015)
That is incredible. I'm a bioengineer by training, by the way, and started my life in the lab too and understand the bane of pipetting. Not for me. I think I realized that maybe a time in the future when you did, including a PhD, I was like, yeah, no, maybe not.

Erika Bell (40:30.619)
Yeah.

Erika Bell (40:35.195)
Yeah, for some people I had many colleagues where it's their passion and I could see it in their eyes, you know, that was where their heart was and for me it always felt a little off target.

The Patient from Hell (40:43.071)
Yeah.

The Patient from Hell (40:47.583)
I totally get it. I am totally grateful for all of our researchers in the lab. Don't worry. I am. I go, thank God. I don't have the drugs. I don't have the skills or the patience.

Erika Bell (40:53.595)
Hahaha.

Erika Bell (40:58.747)
Yes, I much prefer reading about what they're doing and then talking to other people about it.

The Patient from Hell (41:07.263)
Well, Erika, this has been super, super fun. I truly, truly appreciate you coming to our podcast and talking about the study. And honestly, more importantly than that, doing kind of a DCIS 101. Like I'm truly walking away with a much, much better understanding of that disease, the benefits, the risks, the, how do you even think about the sort of foundations?

of what it means to be diagnosed with DCIS. So I really appreciate you spending the time with us and explaining.

Erika Bell (41:42.715)
Yeah, you're very welcome. It's been my pleasure to be here. And I will just end by saying that in addition to the personalized cancer information that we provide at BACC, we do have a support group that's specific to people who have been diagnosed with DCIS. So sometimes the emotional needs there are very different and there's some being in a group.

with people who have kind of a more severe diagnosis can make them feel a little bit guilty or a little bit scared sometimes as well. So just to know that we do offer group support in that way. And if a group is not right for someone, we offer one-on-one counseling sessions as well. So just throw that in there as different ways we can be of support to people with DCIS. So thank you so much for having me.

The Patient from Hell (42:32.479)
Thank you, thank you for all the work you do. And as you know, BACC has a very, very special place in my heart. And we are here to support you guys and appreciate everything you do. So thank you.

Erika Bell (42:39.547)
Thank you.