Joelle Kaufman: Today I am thrilled to welcome Sheila mackay, A remarkable entrepreneur. Wow. And my screen goes dead. A remarkable entrepreneur who's making waves not just in biotech, but in women's health advocacy. Sheila Co-founded Asbi, which was acquired by Bayer for over 4 billion, and after her own bilateral breast cancer was repeatedly misdiagnosed.
She v she founded. BC Ruckus named after an oncologist. Told her she was creating a ruckus, my kind of gal, and demanding better screening. Now she's fighting for legislation to ensure women with dense breasts get life-saving supplemental screening. Sheila, it is my honor to welcome you to kicking Cancers Ass.
Sheila Mikhail: Well, thank you so much for inviting me.
Joelle Kaufman: Of course. So let's start at the beginning. Tell us about your breast cancer journey and how being repeatedly mis misdiagnosed led you to create BC Ruckus.
Sheila Mikhail: Sure. So I went every year like most women, to get my mammogram. I was always told that I was at low risk for getting breast cancer. I'm thin, I eat well. I don't smoke, I uh, don't drink. I exercise. And so, and there's no family history. So, uh, I was always assured, uh, that I didn't need to worry about it, but still, you know, I went because it was just the right thing to do. Um, I had my last mammogram, uh, early in 2022. In November of that year, I came outta the shower. I noticed a slight indent, like it was really so minor on my left breast, and my first thought was, well, I just turned 56. It's cellulite and it's really horrible getting older. Even your boobs get cellulite. I talked to my daughter and she said, mom, maybe you should get that checked out. cancer was the furthest thing from my mind, um, to basically, you know, calm her fears and, you know, just to make sure, I, I went in, uh, and I had a diagnostic mammogram at one of the best institutions here in North Carolina, they mammogram the left side and the right side. And they didn't see much on the left hand side, but they were a little alarmed by that small indentation, uh, on the left hand side. So they said, okay, let's do an ultrasound. They did an ultrasound. They saw something that looked suspicious, and uh, they did, uh, and they also saw something that looked suspicious, um, in my, uh, lymph node on the left hand side. So they said, well, we're gonna go ahead and do, um, uh, ultrasound. Guided biopsy. they did it and it was, took 'em a while. It took 10 days for it to come back. And when came back, uh, they said I had, uh, a large tumor and it's all a bunch of numbers and letters when you get your biopsy report. So I sat down and I tried to figure out what it was it was slow growing. Um, and so that really set off alarms because I just had a mammogram.
Earlier in the year, which was perfectly clear, I didn't have any indication of any problems. And so, um, I, when I sat down with the oncologist, I said, how do you know, right, that I don't have breast cancer in the right hand side? I didn't expect that I had breast cancer in the right hand side. You know, people always tell you to look for lumps.
My breasts, because they were dense, were very lumpy. They were like bags of marble. So I really didn't see, you know, didn't feel anything new. but to say, look for the lumps, it was sort of, you know, I, I, I mean literally my, my breasts are lumpy. And so, um, you know, she told me, well, she goes, you know, these 3D. Domo Synthesis, mammograms, they're incredible. I keep hearing that over and over, right? All the years that I went to my primary care physician and I had breast exams too done twice a year, I always heard, oh, these 3D tomosynthesis are great. They're meant for people like you that had heterogeneously dense breasts. If you had extremely dense breasts, then we'd be concerned. But most women have dense breasts and you know, you just have a little bit dense, so these are meant for you, these machines. The oncologist started off saying the same thing and I'm like, look, clearly they're not so great because they missed this very sizable, almost three centimeter tumor on my left hand side. Said, I want something more. I want some kind of additional screening to make sure there aren't any other tumors and to make sure that I don't have any cancer on the right hand side. I got, well, it's not the standard of care. Right. It really got a lot of pushback and I said, well, I don't care. I, I don't, I want something else.
And I didn't know at the time, uh, because AI isn't as good, uh, then as it is today, today I can ask my phone and it gives me more relevant information. There's a lot more stuff about dense breast screening. But in 2002, you know, I didn't know what to ask for. I said, look, I don't know if it's an X-ray. If it's a P, you know, PET scan, CT scan, MRI had no clue.
I said, I just want something more. then I got, well, you know, insurance isn't gonna pay for it. And I said, I don't care. And then I go, it's gonna cost you $1,200. I said, fine. Here's my credit card. Right. And that's when she said, you know, you're starting to really create a ruckus. And I said, it's my life.
I, you know, let's say I'm I, let's say, I'm just totally paranoid, right? 'cause I just got diagnosed with breast cancer and I'm just. You know, a little emotional, but I want additional screening. Well, uh, I had the screening a few weeks later and it came back with an even larger tumor that was missed on my right hand side.
And it was so funny because, uh, they asked me to go back down to mammography and the radiologist. You know, uh, who had done my initial screening, uh, at the time when I was diagnosed with breast cancer in the left hand side, he, um, after they did the biopsy on the right hand side for the second tumor, he took me into a separate room and he showed me the mammogram image that I had done when I first came in to get a diagnosis.
And he said, see, it's not my fault. See, there's nothing there. And, but that didn't make me feel any better, right? I felt like I was in a horror show.
Joelle Kaufman: Exactly.
Sheila Mikhail: It is like nobody knew what they were doing. I went back to, uh, to Duke, that's where I got my screening done, after I got treated. And I said, how do we make this better for other women?
How do we make sure that, you know, we find breast cancer? Timely. 'cause women are doing the right thing. They're showing up. Right? We're doing our part, but yet we're not getting the right test. And it was interesting because I was basically told, well, it was my fault because I hadn't demanded from the beginning in all my screenings for the supplemental screening. So, you know, and I didn't even know what to ask for. Right. And even when I had cancer and I pushed, I had a hard time getting it. So I decided that, you know, it's really important, number one, that women are educated about what they need because the burden really lies on them. Um, and number two, you know. Even after women are educated and they know they need supplemental screening, they get so much pushback. So they really have to have like all the facts in hand and they have to be really armed and assistant on it. in our state, in North Carolina, insurance does not cover the supplemental screening. Think there's now a total of 37 states that. Do mandate that insurance covers the supplemental screening for women with dense tissue. But in my state, that's not the case. And women continue to have difficulty getting that supplemental screening even when they ask for it. They almost have to be really insistent on it. and it, it's really problematic. We are told overwhelmingly in our state that the 3D mammograms, uh, are fine. They work great. Um, but now there's, you know, evidence that that's not the case. A recent trial, the braid, uh, study, and there's so many trials that have indicated that supplemental screening, you know, misses a lot of tumors, up to 50% of tumors in women with dense tissue. So you need either an ultrasound or breast MRI to be assured that you don't have breast cancer. but it's still a fight. It's still a fight in states. Uh, in particular where insurance does not cover that additional screening.
Joelle Kaufman: And your breast cancer was particularly hard to detect because it was lobular, if I remember properly.
Sheila Mikhail: So lobular doesn't create any lump. So even though I had lumpy breasts, my breast cancer wasn't contributing to the lumps. So lobular, uh, is almost like I, I've been told it's a bunch of cells that sort of line up almost like cars in a traffic jam. So it's more linear. And then after it gets bigger, uh, almost like a spiderweb, then it starts to get that hard mass.
But in the initial stages. Um, it's harder to, uh, to see on a mammogram. Uh, it was no problem. Uh, when they did the breast, MRI, it showed up very clearly. Um, you know, if I had only had breast MRIs earlier, uh, you know, I was diagnosed at stage two, thank God it wasn't more, but, uh, or later stage. But if I had been di, if I had gotten access to the breast MRI, it would've shown up years earlier.
Joelle Kaufman: Yeah, I was, uh, I tell people often, I actually feel. Lucky that I am in the BRCA one community because we do get intensive screening because we know and at an 80% lifetime probability of breast cancer, they were looking with a cadence, uh, because it was almost a when, not an if now.
Sheila Mikhail: I think, you know, I think that's really important for BRCA two people to know that they have the gene mutation. I'm surprised that a lot of people don't know. They find out later life, uh, which is, you know, really talk about playing Russian roulette. Um. You know, I, uh, found out that I did not have BRCA two, uh, because I did 23 and me, and that was one of the things they tested for. It should be more readily available. Right? That's something like genetic screening, especially for things like BRCA two. I mean, I,
Joelle Kaufman: Or BRCA one,
Sheila Mikhail: Or BRCA one or BRCA two. It just
Joelle Kaufman: right?
Sheila Mikhail: that should be something that should be part of standard testing, right? I mean,
Joelle Kaufman: Yeah.
Sheila Mikhail: and me, I just spit in the tube and they could tell it wasn't that complicated of a test and you know, it was part of a battery of tests that I paid, I think $139 for. So it's not cost prohibitive to test women to see if they have the gene.
Joelle Kaufman: And so, um, interestingly, Dr. Esman talks about you, it's still the vast majority of breast cancers have no genetic, but the Wisdom Study, which she is the leader of, but the wisdom study is about personalized screening and genetic testing, and ensuring that different women. Women with very, with heterogeneously dense breasts versus women with non dense breasts.
Women with family history, women with genetics. Like we are unique in our medicine. Our screening needs to match what's unique about us.
Sheila Mikhail: Yes, I agree. We are treated too much. It's like, um, mass production. It's almost like we get, you know, in the McDonald's of healthcare instead of, instead of something that
Joelle Kaufman: Yeah.
Sheila Mikhail: individualized and more thoughtful, right? It's just mass produced, uh, and we're mass processed. Rather than looking at us as individuals. and
Joelle Kaufman: Yeah,
Sheila Mikhail: very unfortunate.
Joelle Kaufman: it is. Uh, we've, if you, if we are getting McDonald's version of healthcare, we're paying for it, uh, at the um, French laundry level.
Sheila Mikhail: Oh, that's true.
Joelle Kaufman: So, so let's talk about, I love the name you advocated for North Carolina's Save More Tatas Act. Um, now I want you to tell people why you chose that name. Um, and please share what the legislation is trying to accomplish and why it matters and how people can help.
Sheila Mikhail: Sure. um, the legislation got the name because, uh, when I went into the state legislature, North Carolina, to talk about breast cancer screening and, uh, the need right, for insurance to be expanded to cover these supplemental tests. Uh, I was told by many of the male, uh, members of the legislature not to use the word breast because it made them feel uncomfortable. And so, uh, you know, I, how do you talk about breast cancer without using the word breast, right? It do we say booby cancer. It's. Bizarre. But you know, if they don't wanna listen because they're turned off by the word breast, then you know, we, we have to address that. Right? Because unfortunately in my state, just like many other states, I. have to convince men about a women's health issue. And so, um, it's important that they hear us. And so we came up with Tatas, instead, uh, and our bill, uh, say more tatas was introduced by, uh, Senator Sidney Batch, and she is also a breast cancer survivor. Um, uh, unfortunately that bill, um, did not pass this year.
Uh, in North Carolina, we will not have, uh, any, bills that will address better breast cancer screening, uh, in our state. Uh, it's very unfortunate. We have a very strong, uh, insurance company, uh, lobbying group, and they think it's. Too expensive, uh, to cover a supplemental screening I think that's misguided because there have been studies done, uh, by Medicaid, in fact, Medicaid in North Carolina cover supplemental screening for women with dense tissue.
And the reason for that is because they did the economic analysis and uh, there's a big jump in treatment costs. Uh, between a stage two diagnosis and a stage three diagnosis, it's over a hundred thousand dollars per, uh, patients probably more than that 'cause the study is a bit, uh, outdated. Uh, and so if you can, you know, get more patients diagnosed where the cancer is, uh, more localized, rather than having it regional or you know, metastatic, can significantly reduce the cost of care. Earlier stage diagnosis means less treatment costs, pretty common sense. Um, and so that's why again, Medicaid, uh, covers it. And you know, it's about, uh, in the study that they did, they said about two thirds of women are diagnosed with an earlier stage, uh, diagnosis, stage one and two, but there's a one third, uh, of the women are diagnosed with that later, those later stages three and four.
So it's really about how many of those. Uh, latter third, can we get into earlier stage diagnosis? And, you know, that's just looking at treatment costs. It doesn't take into account all the other costs associated with a later stage diagnosis. As you know, if you have a later stage diagnosis. Treatment is much more, uh, extensive and harsh on a woman, meaning that she may be out of the workforce for a longer time period. A later stage diagnosis means that a woman's more likely to have a double mastectomy and a double mastectomy usually involves multiple surgery, especially with reconstruction. And that means, you know, a lot of recovery time, um, you know, taking women out of the workforce. Often has detrimental impacts on their, on their own financial state, but also on their families. So there are many studies that show later st that later stage. Diagnoses often result in increased number of bankruptcies. So. You know, this is, and, you know, later stage diagnosis also means you get more out-of-pocket costs that you have to cover in addition to, uh, being out of work. Uh, it, it's extremely detrimental to have a later stage diagnosis.
There are other papers that show that if a woman gets a stage three diagnosis. That there's a higher likelihood than the other stage one or stage two diagnosis, there's a higher likelihood that she's never gonna return back to work. And so, you know. Uh, these tests are not that expensive, right? Uh, getting an abbreviated breast, MRI, which there's a, a Journal of American Medical Association, uh, publication that says an abbreviated breast MRI is just as good as a full MRI in detecting breast cancer. breast MRIs are now available to women for $400, around $400 out-of-pocket costs. So that's, you know, at the higher end, an ultrasound, which isn't quite as good, um, as a breast MRI in detecting, uh, earlier stage cancers, but still is better than a 3D Uh, mammogram ultrasound is about a hundred and. 50 to $180. So we're not talking that these sur uh, cost, we're talking really pretty marginal costs for increased survival for a woman right earlier breast cancer, uh, diagnosis. Means better chance of beating cancer. In fact, if you have a stage one diagnosis, it's almost a hundred percent curable.
Joelle Kaufman: Right.
Sheila Mikhail: have a stage four diagnosis at the other end of the spectrum, there is a 75% chance you won't be here in five years. So it's life and death, right? And a few hundred dollars to give a woman a better chance at life seems to me like a pretty good economic investment. But it's also about morbidity, the quality of her life.
Joelle Kaufman: Mm-hmm.
Sheila Mikhail: If she can, you know, avoid multiple rounds of chemo, multiple rounds, you know, or the minimum rounds of radiation, she can avoid a double mastectomy and double, you know, getting reconstruction. I mean, why wouldn't we want that? The few hundred dollars investment is really worth it. It's, it's so absurd. I mean, it's just ridiculous. I can't even believe that we're still debating this, and there's so many studies now that make it very unequivocal that 3D mammograms are not adequate for dense tissue.
They're just not adequate. They're not gonna, they're a good chance they're not gonna find. You're breast cancer, right? We're we're talking about up to 50% of tumors are missed in women with dense tissue.
Joelle Kaufman: Yeah.
Sheila Mikhail: of us have dense tissue. That's a lot of people affected, and that's a really high probability of a miss. you get on a plane if you knew that TSA missed 50% of bombs? You would not,
Joelle Kaufman: Of course not.
Sheila Mikhail: is expected to get these, you know, 3D mammograms and be satisfied with it. And I would say it's even worse in some instances than having no screening at all, because you walk away with this sense of false assurance that everything is okay. So, you know, you may be more vigilant if you hadn't had the, you know, negative mammogram report. Then you are, you know, with you being told repeatedly, everything's okay.
Joelle Kaufman: Yeah. Well, and I think it's amazing that 37 states agree with you and 13 states don't. And you know the, I wonder if there will be liability cases against those insurance companies for denying a screening that resulted in a later stage. Because you're right, it makes complete economic sense. Um, it's, it's just not, it's not that expensive and beyond, yes, they, they have trouble working, but often women are primary caregivers.
So a woman with an advanced stage. We're talking about impact on children, on families, on workplaces. It's a, there's a big ripple effect. And who wouldn't want, I mean, look, early detection is everything. Until we know how to prevent this disease, which we don't yet, until we know how to prevent it, early detection is the most efficient way to minimize the societal and personal costs of breast cancer.
Sheila Mikhail: Absolutely. And I have to feel, I have to tell you, I still feel, and many women like me, I've met many women who, like me, showed up for our mammograms, relied the advice of our doctors, right from top medical institutions. We feel really betrayed because they, they took away our ability, our right to have an earlier diagnosis. They, they made decisions for us. The, by telling us that 3D mammograms are fine. They would work for us not to worry about it. If there's any issue, the radiologist will, you know, call you back and you'll have additional tests. By doing that, right, and not saying, Hey, you know, there's this additional test, it may cost you, you know, a few hundred dollars. Are you willing to invest in this additional test? Right? Maybe that means you can't buy that plasma tv, you know, this month. Would you be willing to do that? You know, they took that option away. Were treated like, I don't know, you don't have the right to spend your money. order to, you know, make sure that your health is okay.
That seems like, I don't know, it's just so demoralizing in how women are, uh, perceived by our healthcare system. Um, I mean, to this day, I think that's the thing that upsets me so much. You know, I asked, I asked repeatedly, uh, my primary care physician and my GYN do I need anything more? And I kept getting these assurances that 3D mammograms, you know, they will find cancer the size of the head of a pin. was not the case. I had a total of six centimeters of breast cancer that went undetected. I
Joelle Kaufman: So if it makes you feel any better, and it may not, but, um, I was on the other side, right? I was screened constantly. Um, one of the things I, I tell a story that I'd see my. General practitioner. I saw him 'cause I had a weird clicking in my elbow and he's like, take off your shirt. I'm like, what does that have to do with my elbow?
And he says, nothing, you're never coming in my office without a breast exam. So I don't care if you have an ear infection. So I was screened, I was touched. Um, when I was diagnosed I had had an MRI six months prior. So the gold standard, right? Full bilateral MRI. And uh, I remember when Dr. Chen and Dr.
Esserman are looking at the MRI from January and June and I hear them go, wow, check that out. And Dr. Peter Kon, who we both know, also knows the story. June, nothing. January stage two. Now mine was smaller, nine millimeter and mine was ductal. Um, and mine was hyper aggressive as opposed to slow growing. So every, you know, the cancers are all different.
Um, but your point that not only do women have to advocate, but I think that we also have to make sure women understand cancer treatment Screening is a massive. Area of research and growth, which I we're all thankful for. The probability that your GYN or your primary is state-of-the-art current on it is zero.
Sheila Mikhail: yes,
Joelle Kaufman: It's, it's, it's simply zero. So I'm sure when they went to medical school, they were taught or they did their residency. Yeah. 3D mammograms. Awesome. Dr. Borovsky on, uh, the episode that she's on spoke about, we're now doing mammograms with contrast. Now, I don't know if that would've helped with your type, with my type.
Sheila Mikhail: it
Joelle Kaufman: So now we have another and, and this can be your standard mammogram.
Sheila Mikhail: yes.
Joelle Kaufman: with contrast. Contrast is cheap. You know what lights up under contrast tumors.
Sheila Mikhail: Right.
Joelle Kaufman: you know, these are cost-effective approaches. But your ob, you know, that's why. Dr. Borovsky recommends, and I'm sure you did this, so this isn't a critique of you, but for women who are listening or people who are listening, you want to go to a American College of Radiologists accredited Breast screening center,
Sheila Mikhail: Yes.
Joelle Kaufman: and then start asking for, can I have a mammogram with contrast?
Sheila Mikhail: Yes.
Joelle Kaufman: the contrast is cheap.
Sheila Mikhail: But I would say in states where there is no insurance coverage, it's harder to get that additional screen. Even with contrast. insurance, insurance coverage really dictates, uh, medical practices,
Joelle Kaufman: Yeah,
Sheila Mikhail: not science,
Joelle Kaufman: which is crazy. Which is crazy,
Sheila Mikhail: And, and in fact there's a paper that demonstrates this very clearly when it comes to, you can tell I read a lot of papers when it comes to, 'cause I think there's nothing better than evidence, right?
So if there are people out there who are studying practices and they're determining why certain things are happening, you know, I think I put a lot of credibility in that. Uh, rather than just anecdotal, you know, what was my experience? What was your experience? But there's a paper that, um, looked at medical practice for supplemental screening for women with dense tissue between North Carolina and New Jersey.
And this was right after both states had, uh, the breast density notification law go into effect. So North Carolina had our law go into effect back in 2014. We knew we had dense breasts you know, we went and we talked to our, our doctors about it. And like me, many women are just told 3D mammograms, don't worry about it.
Right? They're, they're perfect. They're designed for your dense breasts. And in fact, I was told in many other women are told, you are getting supplemental screening, you're getting something beyond. The 2D 2D
Joelle Kaufman: Oh.
Sheila Mikhail: you're getting digital breast tomosynthesis. So it was almost like, you know, that, um, who's on first, right?
It was, it was a slight of language. I was always told I was getting my supplemental screening. uh, in any event, this paper did an analysis between the experiences of women in, in North Carolina versus the experiences of women in New Jersey After the, uh, breast density notification laws went into place in both states, and what they found is in North Carolina, women were more frequently referred for, uh, 3D tomosynthesis. 3D mammograms. Uh, but in New Jersey, women more and more frequently referred for, uh, breast MRIs. And the authors concluded that the difference between the two states was that in New Jersey, insurance covered the breast MRIs and the North Carolina. They did not. Insurance only covered the 3D tomosynthesis,
Joelle Kaufman: So how do we expand on your movement? How do we, you know, I'm having a whole Lysistrata movement, right? Like, oh, you're uncomfortable with breasts. We'll just take them away from you. I. Until you cover their screening, that that's not really what they were for. So like, you know, uh, it worked in ancient Greece, but what can we do?
For those of you who don't know what Lysistrata is, it's a famous Greek play, um, about women withholding sex
Sheila Mikhail: Yeah.
Joelle Kaufman: they got what they wanted. So what can we do? Uh, what can people do around the country, around the world, both locally, but also for this movement that you're so right.
Sheila Mikhail: So a few things. One, educate yourself. So first, protect yourself. Make sure you're getting the supplemental screening. And in North Carolina, you know, I actually paid, uh, to have, little cards made up in banners. About, uh, the need for supplemental screening and, uh, we mailed them to all of the breast imaging centers in North Carolina and asked, uh, the, um, you know, managers of those centers to put the cards out on the tables and the waiting rooms and to put up the banners. And, you know, I distribute flyers through churches and everything else. Really get out the message so that women can advocate for themselves. That's number one. And there's a lot of good information out there on the web. Uh, breast dense, uh, dash info.com. My density matters. Uh, you can print the flyers and go in and, you know, have information available to really, you know, sort of fight, right, to get this additional screening.
So that's number one. Uh, number two, uh, you know, know what to ask for. Uh, it's not only just, you know, ask for the. Supplemental screening knows specifically what to ask for. lot of women, um, think that an ultrasound is enough. It may or may not be. It finds like two to three additional, uh, tumors per thousand women screened. In contrast, a uh, contrast enhanced mammo, which is not readily available, right? Those, they're just starting to get ruled out here, breast, MRI. They'll find up to 12 to 14 missed tumors for a thousand women screens. So if you want the gold standard, it's not an ultrasound. Uh, it really is the contrast enhanced mammo, uh, or the breast, MRI.
And the problem too with the ultrasound is there's two different types. There's one where they're automated. And then there's one that depends on the skill of the technician. The skill of the technician is not as good. Uh, it's just not as consistent. An automated one appears, right, to have a better outcome. Um, but again, if I had to do it over, I would've asked for a breast. MRI. Or a contrast enhanced mammo. And that's what I do now in my surveillance. Every six months I go and I make sure I get one of the, two of those, to, you know, make sure that I don't have cancer at this point in time. There's no, uh, recurrence. Um, and
Joelle Kaufman: Do you have, you did, did you have a bilateral mastectomy or No. Okay.
Sheila Mikhail: I had double, oh, that's the other thing I wanted to mention. the event you get diagnosed, you know, I got pushed, uh, because of, I had bilateral, I was really pushed to get a double mastectomy. And to me that just made a lot of sense and I signed up for that right. Until, um, somebody who worked for me.
I have the. Luxury of having, uh, run biotech companies. And so I have many doctors who work for me, unfortunately not in cancer, in the breast health area, but still they're pretty educated. And one came up to me and said, you know, double mastectomies are what we used to do commonly, but these days we're really trying to conserve the breast as much as possible doctors. you should investigate. You know, uh, double lumpectomy. when I did the research on it, the survival, uh, for people who have a double mastectomy versus a double lumpectomy, it's like marginal difference. It's like two to three, absolute percentage points. Better for a double mastectomy, but it's a lot more involved, right?
There's a lot of side effects and multiple surgeries, and those surgeries themselves have, um, some potential consequences. So I was able to get a double lumpectomy and, you know, I, I'm very happy with my outcome. Uh, and even if you have a double mastectomy, it doesn't mean that you won't have a recurrence. Some women get a double mastectomy and they still have a recurrence of breast cancer. Um, you know, it's a personalized decision. The thing is, it gets. It's really hard because you'll be in shock when you get the diagnosis and then doctors are looking to you to make the decision and you have no education about this.
And I have to say, that was probably one of the most stressful points in my life, getting a double mastectomy because I had double uh, tumors, um, was, it was very complicated. I had to, they basically had to do an outline of where the tumors were. Underneath, uh, ultrasounds and multiple, uh, like biopsies. It was quite painful. Um, and it took me over, it took me about two months to have all the preoperative work done before I actually had my, uh, breast cancer, uh, removed. I, because I had slower growing tumors, I was able to. You know, the luxury of having that time, but still your mind goes crazy when you're waiting two months knowing that you have cancer inside.
You growing. Um,
Joelle Kaufman: Well, let's pause there a second. Let's pause there a second because I think that's a thing people get confused about. Like, I had a very aggressive, fast growing and I still didn't have surgery. I was diagnosed on Jan nine. I didn't have surgery till May 4th because with No, no, no. It was good in my case, and again, this is where you have to talk to an oncologist.
'cause Sheila, you and I just, we've effectively had different diseases.
Sheila Mikhail: Yes.
Joelle Kaufman: Right, so, so like, oh, I had, you know, arthritis and you have asthma. Let's compare treatment plans. Like that's craziness. So it's the same thing, but you know, for me. The, they recommended doing the chemo and using how the tumor was responding to chemo to decide how much more chemo I needed and how aggressive.
So it actually prevented me from needing the most toxic chemo because we saw that my tumor had fully responded to the less toxic chemo. So I consider that a win.
Sheila Mikhail: Yes, absolutely.
Joelle Kaufman: Right. And then because I'm BRCA one, it was, you know, there, there it was, you're gonna have a bi. I, I was already planning to have a prophylactic bilateral, so it, it was a decision I'd already wrestled with.
Sheila Mikhail: Right,
Joelle Kaufman: Um, and for me, the surgery was no big deal. The recovery was actually no big deal. And, and I did the reconstruction concurrent
Sheila Mikhail: yes.
Joelle Kaufman: the surgery. So, you know, I think your point that's so valid is. You have time to ask questions. You have time to gather data from other parties and to explore. You have time to craft this to be the solution that fits you and, and the anxiety, oh my God, I have a cancer and it's growing inside me.
If it has to come out immediately, your doctors are gonna tell you that.
Sheila Mikhail: right.
Joelle Kaufman: And breast cancer. Uh, Dr. Esserman says it's only urgent because you know about it,
Sheila Mikhail: Yes.
Joelle Kaufman: we have to take care of it, but it's not actually an emergency. You have the time to do what you did, Sheila, ask some people, change the approach, do all that preoperative work so that you got the least invasive and, and most successful for you.
Sheila Mikhail: Tailored for you. I think that, and your
Joelle Kaufman: That's right.
Sheila Mikhail: that's absolutely right, but it's important to get at least two and maybe three opinions because first, you know. The doctor basically said, no choice in the matter. You must have a double mastectomy the size of the tumors. They said there was no way to take them out. The second doctor said, I think I can do it, but I'm gonna try it one time. And if I don't have clean margins, then you'll have to have a second surgery for double mastectomy. And you know, I used to be quite a bit larger, but I'm very happy, right? It, it just, you know, I'm happy with what my choice was and the outcome. Now that doesn't mean I might not get a recurrence later, but I might have anyway. even with a double mastectomy, I, you know, there's just a lot of education,
Joelle Kaufman: Yeah.
Sheila Mikhail: you have to undertake very quickly when you're not in the right emotional state. It, it was surprising to me time and time again where, um, I. Like I had to do a lot of research, right? And it was like I was going through my pathology reports. I didn't wanna read my pathology reports. They're scary as can be.
Joelle Kaufman: Right.
Sheila Mikhail: I'm, you know, learning about, well, I have this lobular breast cancer, what does that mean? Like
Joelle Kaufman: Mm-hmm.
Sheila Mikhail: I have ER pr, there's all this nomenclature that comes at you very quickly.
You know who her two negative and, but the treatment is substantially different. on whether you have, you know, hormone positive or negative or HER two negative or positive. And then two, I had to push for genetic testing.
Joelle Kaufman: Mm-hmm.
Sheila Mikhail: was not something that was automatic. Again, because insurance did not cover it. It was something that I insisted on. And so this is in many states, this is not something that is part of the. You
Joelle Kaufman: Standard of care. Yeah.
Sheila Mikhail: So, you know, for me it was like, okay, my first thing was common sense. I'm new to this whole breast cancer regime. I had very little information, but common sense, if I have it in both breasts, maybe I have a genetic basis for it, right? So I did all this testing, and even then you get back this information that says, well, it may be, uh, of significance. It's unknown, right?
Joelle Kaufman: Right, right. May have genetic link, link unknown. 'cause we don't know everything yet. No, I mean, the point that you went through, uh, you know, when I wrote the book right, I wrote it as a, a playbook for the newly diagnosed because I. That moment when someone, and it's, it's random, unexpected, arbitrary, you know, in your case you had no symptoms.
I couldn't feel it. Uh, you know, we're just like, what? Um, and that moment the world stops spinning. And you are suddenly, I call it, you're thrust into an amusement park. That's the worst amusement park in the world, cancer land. And no one wants to spend time there and there's no map. And so I tried to create a map to give people a bit of comfort, a bit of hope, and a bit of space because this, you know, cancer is a plot device for entertainment.
So we all think cancer, I have to move faster. I'm gonna die.
Sheila Mikhail: Yeah.
Joelle Kaufman: There are cancers like that. Your doctor will tell you if you have one, and it usually comes with, you have leukemia, you need to be in the hospital tomorrow for treatment. Right? Like it's, it's like that. If they say it came back positive, we have to get you an appointment, we'll have to get you to oncologist.
That's signaling like you have to do something. But you can breathe.
Sheila Mikhail: Yeah. Yeah,
Joelle Kaufman: You can breathe. And so take the breath.
Sheila Mikhail: yeah. It's hard though.
Joelle Kaufman: It's so hard. It's I'm, I, I, yeah. I mean, Sheila, I was telling people over and over again how lucky people are. Like, what do you mean lucky? Like, I've seen this multiple times and I told people I don't need a support group.
I was born into one and they all lived.
Sheila Mikhail: Yeah. Yeah. Well, I think most people though, when they get the diagnosis, they automatically go to the worst place. I
Joelle Kaufman: Of course, of course you did.
Sheila Mikhail: breast cancer did not run in my family, and all I knew about breast cancer is what I saw on tv. And it's always a melodramatic thing where, you know, the mom got breast cancer and she died and she'd leave the kids behind.
Right.
Joelle Kaufman: And, and it's fast. Like, and she died and she's gone like, you know, like that's what I mean by a plot device. Like, and, and I can appreciate. A, there are situations where that happens and it's horrible.
Sheila Mikhail: Yes.
Joelle Kaufman: B, the frequency of that is much less frequent than the proportion that it shows up in movies, TV, and books.
Sheila Mikhail: Right, right. Yeah. But I would say one thing that I did find disheartening, there wasn't a lot of empathy, at least in my experience. I did not get a lot of empathy from my doctors.
Joelle Kaufman: Mm.
Sheila Mikhail: didn't. I felt the system was overwhelmed. Um, you know, it wouldn't be atypical. I remember waiting to see, you know, a surgeon and I waited like three hours in the waiting room. It's like, I think the system right now is overtaxed after COVID. Um, and people are just too rushed to give you the time of day. They don't, they don't take into account like, how are you doing mentally? It's really like. It mass production, right? There's, there's a whole waiting room of people who have been diagnosed. It seems to me that more of us are getting diagnosed. I, I mean, I was 56, I'm not that young, but when I was going through my radiation in the waiting rooms and whatnot, there were a lot of women there in their forties
Joelle Kaufman: And younger.
Sheila Mikhail: Yeah. And, uh, you know, with children and whatnot. Um, but it just doesn't seem like. I don't know.
I didn't really, I felt like I was very alone and sort of, you know, don't ask questions. I don't have time. Let's go, let's go. I felt always rushed and um, yeah. And so, you know, I went through depression. I have to say I had depression and I had a lot of anxiety when I was going through treatment. I felt very isolated and sort of at odds, right?
I mean, it started off fighting to get the screening that saved my life. Um, and so I, you know, I did not, I really did not appreciate that, and I think that's one thing
Joelle Kaufman: Of course.
Sheila Mikhail: sort of have to understand. Uh, and I don't think my situation's unique. I've
Joelle Kaufman: Mm.
Sheila Mikhail: from many people. You're, you're sick, you've just been diagnosed with cancer.
It's a huge blow, but yet you've almost gotta suit up and be ready to fight.
Joelle Kaufman: That's what we call it.
Sheila Mikhail: sorry.
Joelle Kaufman: That's what my family calls it, putting on our armor.
Sheila Mikhail: Yeah, I had to fight to get my radiation schedule, I had to fight right. To, you know, get my surgery done. And then, you know, they had a shortage at the hospital, so they pushed it back a week and I was like, you know, you're, you have a date in mind.
And then when it gets pushed back a week, yeah.
Joelle Kaufman: I, I hear you.
Sheila Mikhail: it's, you know, that's the thing I think that surprised me. A lot. I mean, that just really sort of shocked me. I thought there would be more empathy, more support, um, just a little bit more kindness.
Joelle Kaufman: Yeah, I think there's a, this balance between keeping their own emotional health and being there. Did anyone recommend to you like psycho-oncology or some sort of mental health support for what you were going through? I.
Sheila Mikhail: Yeah, I mean I actually reached out at one point and said, Hey, I think I need to talk to, you know, uh, so I don't know, psychologist, a therapist or whatever. And I started taking, um, medication and that screwed me up so much. I mean, that's not so simple either.
Joelle Kaufman: Nope.
Sheila Mikhail: Lexapro, I tried and that made me more anxious. I tried something else and that kept me up all night. So I got off the medications and. Uh, there's no quick fix. Right. And
Joelle Kaufman: No.
Sheila Mikhail: you know, the whole therapy thing didn't really work either. I just, I doubled down. Right. I was a, a Catholic and I doubled down on religion. That was the only thing that made sense for me.
Joelle Kaufman: That brought you peace.
Sheila Mikhail: Yeah. And it brought me a sense of, you know, clarity and peace. Right. But
Joelle Kaufman: Yeah.
Sheila Mikhail: I have to say, that was one thing to this day that I just, I don't know, maybe I shouldn't have been so surprised by, but I really, I felt more like a. feel like a person. I didn't feel like I was being seen as a person.
Joelle Kaufman: I think that's important for people in the medical community to know. Like, it, it doesn't take much.
Sheila Mikhail: No.
Joelle Kaufman: It, um, you know, it takes and, and I, I didn't have that experience. I also didn't have the level of anxiety because I had such patterns of successful outcomes that I could latch onto. Like my mental model was, this is a damn inconvenience.
But, but that's it, right? I mean, my mother's a 43 year survivor. Like it's, it's a very different mindset, uh, and. Not many people are gonna have that mindset. So realizing that people are scared,
Sheila Mikhail: Yeah.
Joelle Kaufman: people wanna know, and you can't say it's gonna be okay. 'cause we don't know. I don't know what's gonna happen when you drive home, but you can say like, what are your questions?
What are your concerns? I mean, one of the best lines, I asked Dr. Erman in my first appointment, so what stage do you think I am?
Sheila Mikhail: Yeah.
Joelle Kaufman: she looked at me, she says, who cares? I said, excuse me. She said, all that matters is if your tumor responds to treatment.
Sheila Mikhail: Oh, that's nice.
Joelle Kaufman: Right. And I was like, oh. And, and she goes, and that we'll be able, we'll be checking all along the way
Sheila Mikhail: Yeah.
Joelle Kaufman: know how your tumor's responding.
And if it doesn't respond the way we want, here's the next options. And I really appreciate, I mean, it wasn't a hug, it wasn't a, you know, I, I did not feel condescended to, I felt like a partner. I.
Sheila Mikhail: Yeah. I think that's important. I think that's important. Yeah. I think I started off on the wrong foot. 'cause again,
Joelle Kaufman: You were angry. You were really angry too.
Sheila Mikhail: and I had to fight to get
Joelle Kaufman: Yeah.
Sheila Mikhail: there was a lot of mistrust. Right. I was told from the beginning, don't worry, you know, these tests are gonna find your cancer. It didn't. And then it was like, don't worry, you only have breast cancer on the left hand side. You're crazy to think you might have the right. And then I the right.
Joelle Kaufman: I will say, and again, like I'm like in the world's like global services for screening and when I had my, my bilateral, they did find a tumor in the other side
Sheila Mikhail: Wow.
Joelle Kaufman: and I'd gone through chemo,
Sheila Mikhail: Yeah, that's,
Joelle Kaufman: Like
Sheila Mikhail: yeah.
Joelle Kaufman: these, these are stubborn, stubborn diseases. But, um, all right, let me do a quick, rapid fire, um, and. The before I do, I wanna ask like it, it was 2022.
You're obviously a phenomenal advocate, fighting a great fight on behalf of all women, and I think everyone should. Thank you. How did having cancer change you, if at all?
Sheila Mikhail: Yeah, I mean it absolutely changed me. Um, I don't put up with. Uh, like BS as much as I used to. Right. So, uh, you know, I've run companies, right? My last company, um. know, I was employee number one. Uh, I built it to about a thousand people operating in five different countries. Sold it to Bear, continued to run it as an independent subsidiary of Bear, and then was diagnosed with cancer.
And, uh, I had, uh, I didn't have chemo. Uh, chemo doesn't. Really work on lobular. So you, I didn't have that and I had 66 radiation treatments.
Joelle Kaufman: Wow. Oh.
Sheila Mikhail: in the middle of, uh, radiation I was really tired and I had to give up, being the CEO of my company, which was quite devastating,
Joelle Kaufman: Mm-hmm.
Sheila Mikhail: I built over 20 some years. Um, but it really, I think, you know, sort of put in perspective like what's important, what's not important. And I've started companies since and I'm just much less tolerant of a lot of things that I used to just sort of grin and bear. It's sort of like, I, I don't tolerate when people, you know, waste time, waste my time over nonsense.
Right. If it's important, if it's, you know, if it's material, then great, but it's just. don't know. A lot of times in organizations, people spend time just on, they get so focused on little petty things and you're like, really? I, I face like life and death. Right? This is not something that I am going to allow you to waste my very valuable time on.
I think you'd become very cognizant of the fact that there's only so many grains in the hourglass. I, I mean, I felt great most of my life. I was. thought I was physically fit and you know, I was always running really hard, so I don't think I was as, um, stingy maybe with my time and now I'm sort of, know, I, I don't like to waste it on nonsense.
I really don't. I wanna be focused with my time. I wanna. Use it for maximum, you know, impact. I still wanna change, you know, the world. I've always, uh, worked on diseases that affect, um, children. Right? That's my, been my career for 25 years developing drugs for rare diseases that primarily affect children. And now I still wanna do that and I wanna do it with focus and, you know, maximum impact. But I also wanna change, you know, women's health. 'cause I think it's actually easier. It takes me, you know, hundreds of millions of dollars in decade, right? To bring a drug, uh, to treat some kind of, uh, rare disease. We can save women's lives by just giving 'em access to the right screening for their breast type mammograms. Work well for 50% of women who have fatty breast. But for the rest of us, let us get access to the right tool so we can find our breast cancer early. And by doing that right, I can have a bigger impact than I could have had in the last 20 years, uh, developing drugs for sick kids.
So
Joelle Kaufman: Oh, that, that's awesome Sheila, that, that I think many women will owe their lives to your advocacy and you're bringing visibility to this.
Sheila Mikhail: Well, it, it, I would, I ask everybody to join in the effort. There's legislation pending in Congress, the Find It Early
Joelle Kaufman: Mm-hmm.
Sheila Mikhail: You know, this is the third year that we've been pushing, uh, for, uh, its passage. It's tough. Uh, you know, write your state, uh, senator and. Uh, in particular the Senate, you know, let them know that this is, uh, something that's important.
If you live in a Republican state where you have a state senator, or you're representative is a Republican, even more important to write them and, uh, you know, it's economically rational and it can save a lot of lives.
Joelle Kaufman: Outstanding. All right, let's do the rapid fire, by the way, I'll put a link to the Find It Early Act. Um, and. And, uh, if you're deeply involved with that, something in the, the Jewish community, we've gotten pretty good at making it very easy with the Action Network to just push a button and it fills in all the blanks of who you need to be talking to and sends the letter.
Um, so it, I did not see that on the Find It Early website, so you can easily find the name of your representative and your senator and send the letter and you should. Yeah, everyone should. This isn't a women's health issue. This is a human issue. Uh, last I checked, most men are all men came from a woman
Sheila Mikhail: Yes.
Joelle Kaufman: and most men are fond of women in some way or another.
So we want to keep people healthy. And Sheila, I do wanna correct something you said you were healthy even when you had cancer. Right. You were not suddenly an infirm sick person. You were a healthy person with cells that had run amuck
Sheila Mikhail: I
Joelle Kaufman: and
Sheila Mikhail: mindset. I like that a lot.
Joelle Kaufman: Good,
Sheila Mikhail: I think
Joelle Kaufman: good.
Sheila Mikhail: way of thinking about things. I really do
Joelle Kaufman: Yeah. So, all right. Rapid fire. What does kicking cancer's ass mean to you personally?
Sheila Mikhail: Overcoming. The word overcoming,
Joelle Kaufman: Fantastic. What's one thing about breast cancer that you wish everyone knew?
Sheila Mikhail: get supplemental screening. If you have dense tissue.
Joelle Kaufman: Amen. Amen. Okay. Best advice for women newly diagnosed with breast cancer.
Sheila Mikhail: Sorry, say again?
Joelle Kaufman: Best advice for women newly diagnosed with breast cancer.
Sheila Mikhail: Get informed.
Joelle Kaufman: If you could change one thing, I know what the answer is about our healthcare system overnight, what would it be?
Sheila Mikhail: Insurance not being so stupid about things.
Joelle Kaufman: No kidding. No kidding. Um, what gives you the most hope for the future of cancer care?
Sheila Mikhail: 37 states have seen the light. 13 more to go and it will, it will change, right? There's so much information coming out now. Uh, so many studies being done. It's overwhelming evidence that women with dense tissue need supplemental screening. So it's just a matter of time and every woman in America will get it and insurance will cover it.
Joelle Kaufman: And in the meanwhile, all the women, we need to be making noise. We need to be advocating, we need to be asking for it. If we have dense breast tissue, we need to be asking what's the right screening for me.
Sheila Mikhail: Exactly.
Joelle Kaufman: Um, I.
Sheila Mikhail: All of our boobs are not the same.
Joelle Kaufman: No, they're not. Um, nothing in our bodies are identical.
Sheila Mikhail: Yeah.
Joelle Kaufman: So Sheila, I really wanna thank you for sharing your story, your vulnerability, your, your righteous fury, uh, which is fully justified and for continuing to create a ruckus.
Um, is there anywhere you'd tell listeners to go to learn more about your work and to your advocacy work? Is there a link they should go to?
Sheila Mikhail: well, we have a website BC Ruckus, but what I would say even more importantly, go to our partners. Uh, my Density matters and dense breast info.com, they have more comprehensive, uh, websites and we work in conjunction with, uh, both of those organizations. Uh, there's also, uh, Liz Powell, uh, is, uh, an individual lobbyists and she's also taken up, uh, an effort. Uh, so, uh, she has breast, uh, cancer screening, advocacy, uh, lobbying effort that's underway. And a whole bunch of us are going to be, uh, up in Congress next month trying to really advocate for the passage of the Find It Early Act. So a lot of people are, uh, getting involved in this effort. Uh, and hopefully right this year, uh, we can get it passed.
Joelle Kaufman: That'd be great. Sheila. Thank you again.
Sheila Mikhail: Thank you. You take care. Thank you so
Joelle Kaufman: You too. Yeah. Okay.
Wanted to add one other thing that changed since you've
Sheila Mikhail: Yes. The other thing that's changed is I focus more on today and now I always used to be planning for the future and I still, you know, plan for the future, like a vacation trip or spending time with loved ones, but I spend a lot more time appreciating everything that's around me and really being immersed in the feelings and the environment and just being more conscious and aware.
Of all the good things that are here now, and I try not to focus on, you know, bad things that could happen in the future. And every time my mind starts racing about recurrence or oh, even death, right? I just keep bringing it back, like, Hey, right now it's happy and it's good, and let's see all the, the good things, right?
So truly like smelling the roses, taking time to smell the roses, it became much more of a practice than it did before.
Joelle Kaufman: It also sounds like you have a lot of gratitude for, for. I
Sheila Mikhail: Oh,
Joelle Kaufman: the sun coming up. sun
Sheila Mikhail: absolutely.
Joelle Kaufman: I am thankful. Love it. Love the
Sheila Mikhail: Absolutely.
Joelle Kaufman: it.
Sheila Mikhail: Well, I think that goes also to not sweating, right? The little things and, and really not being drugged down by petty things anymore, right? You really look at the materiality of something as like, hmm. That's not worth spending. Right. The my hours of my time glass on, that's something that's just not worth it.
Refocus.
Joelle Kaufman: I, I also found that with people I. Like
Sheila Mikhail: Yeah.
Joelle Kaufman: people that I wanna spend time with and then there are people who I'm like,
Sheila Mikhail: Yeah. Yep. And you get more stingy. In the past, you might've felt guilty and you may have spent time with them just to avoid, right. Being perceived as, uh, you know, not being a nice person. It's okay not to always be nice.
Joelle Kaufman: okay. And on that, I think we'll call that a wrap. It's okay not to always be nice, particularly if you need supplemental screening. Don't be nice,
Sheila Mikhail: Absolutely. Be very demanding. It's okay. It's
Joelle Kaufman: Awesome.
Sheila Mikhail: your doctor says you're creating a ruckus. Create a ruckus and save your life.
Joelle Kaufman: Amen.
Sheila Mikhail: Amen.