Beyond The Diagnosis: A Patient’s Perspective of Breast Cancer

Introduction to Young Breast Cancer Stories 0:00

Cancer is a diagnosis of the old. At least that's how most people think of it. Environment, genetics, smoking, drinking, all can lead to individuals getting cancer. Oftentimes it comes down to just bad luck. But what happens when it strikes someone who is young? How would you deal with a diagnoses that you may not have been expecting until you had kids of your own or grandkids even? Today we're exploring that very situation in two women who were diagnosed with breast cancer. You'll hear from them firsthand what they went through, their treatments, and what the want other women to know about their own situation.

So let's get to it. Welcome everyone to this episode of the Jaffercast. I am your host, Dr. Mark Papadakis. No one particularly special, just another freaking ER doctor. October is Breast Cancer Awareness Month, and this is episode is going to be conducted slightly differently. Rather than have a panel of experts on or one expert, I'm actually going be speaking to a couple of very special individuals. We're going talking about breast cancer, not as a disease in the pathological sense, but as disease as in a personal sense.

In 2022, the World Health Organization estimates that globally, there are 2.3 million new cases of breast cancer diagnosed. That same year, an estimated 600. In 2025, it estimated 2,3% of women die of cancer. And in the U.S., the American Cancer Society has estimated 42,000 women with diabetes cancer, just this year alone. So for that reason, rather than talk about the nature of the disease, the treatment, detection, we'll get to all that in a different episode, I'm sure. But for now we're going to hear about breast cancer from a first-person perspective.

Two women who have been diagnosed, actually treated once, twice, multiple times. You'll hear it from them yourselves. So, for know, let's bring on Tammy and Kelly. All right, Tammy, Kelly. Hi, welcome to the show. Thanks for joining me. Hello, thanks for having us. So on my screen left to right we have Kelly and you know, my, screen anyway, there's Tammy. so Kelly, we'll start with you. Um, tell me just about, you about who you are, your experience, how old, whatever you want to talk about. Go for it.

Sure. I mean, My binder at my doctor's. office is like this thick. So the condensed version that I try to tell people, I've had three diagnoses, so it's a lot. It's been almost 16 years on and off. I was first diagnosed in 2000 and I about stage three at that point. And so I had done Chemo double mastectomy right away, you know, didn't have a choice in that because it was aggressive. I had two lumps in the nodule and then one in a lymph node. Did more chemo, radiation, tamoxifen, reconstruction.

You name it. It was like year of health and I was only 31 years old. That was my next question, how old were you at the time? So you were diagnosed at 31. Now, so in your situation, was it just routine screenings that you did?

Kellyu2019s First Diagnosis and Treatment 2:50

Did you have a family history? Like, how did you even get diagnosed? How'd you know? So, interestingly enough, my boyfriend at the time felt it, and he noticed that it was a hard nodule. I thought it a muscle from working out at a gym. And I was like, well, no, I've been using the elliptical. He said if that was true, you would have the same nodules on the side. On the other side, it would be a symmetrical kind of knot, but it wasn't. And my father had colon cancer for quite a long time at that point.

He was not doing well. Three of my four grandparents had died of cancer, but no breast cancer. Averse diagnosis, my aunt got breast-cancer after I had it. Interesting. Yeah, so I, I have good insurance. When I was going to look at it, thank goodness, said better to be safe than sorry. It didn't just turn me away saying you're too young. which could have been the case because I have had a lot of instances of technicians and ER doctors not really taking me seriously when I complain about symptoms and things because.

I was so young because, I looked so healthy because you know, if I hadn't lost my hair yet, so I really had to have, had the fight for, for proper care throughout the history of my, my illness. And I want to touch on that too, because I've seen many people, you know, yourself included when I first met you talking about people taking them seriously when it comes to certain symptoms, conditions, things like that. And age is definitely an issue for a number of people. So we're gonna touch back on. Tammy, what about, so how old were you when you were diagnosed?

And first of all, before you start, completely, honestly, your Tammy is my cousin. That's how I kind of coerced her to get onto this show in the first place. Slightly older cousins. Slightly older. You didn't have to say that. I wasn't going to. So how old were you when you were diagnosed? So I actually thought I was really young. Yeah, I had just had our third daughter. She was 15 months old. And I, Black Friday, felt a lump in the shower, and just kind of was like, this isn't anything, but let me just reach out to the doctor.

So I went to be gynecologist and she was, like yeah, it's probably nothing, let's just get it checked. And then I had a mammogram, because I wasn't a mammogram age. They were like oh no, probably it was nothing. Then they were, you know what, come back, do a biopsy. Of course, I was diagnosed In December of 2009. And I was just over 36 years old and you did you offer reconstruction at the time I forget so I did so it was in my right breast. And I just was like, I'm just going to get them both removed.

Let me just do them, both. But prior to reconstruction, i did do six rounds of chemo. I was HER2 positive, so I also did a year of Herceptin. So I did six round of Chemo, then I Did reconstruction. i Did a tram flap with a bilateral mastectomy in July. And then I had all plans for doing radiation after that. And then my biopsy, or not my biography, but my results from my surgery came back that there was still cancer in my body. So then the oncologist wanted to do four rounds of a different kind of chemo.

He said it was very like, you know, the norm. It was in the breast. The six rounds hadn't killed it all. I thought you meant this was after surgery. I was going to say you didn't get any margins. Okay, no. So they did get clear margins, but during the surgery, which was post the chemo, they said that there was still evidence of cancer. He wanted like a little insurance policy, he called it. And so he wanted to do four more rounds of a different chemoe. and I did one round of that one. It was, I don't really remember what it was called, But they called like Red Death or Red Devil.

Oh, the Red devil, it's nice and awful. Yeah. It took all the hair that was on my head slowly growing back right back off. So I did one round of that and then my blood count was so low that I was about to go into the hospital and I don't want to do this anymore. I can't do it, I'm so weak and awful. And so we did 1 round and radiation and that's it. Your treatment effectively finished when? Because this was over the course of 1 year, wasn't it? Yeah, it was just about one year. So I finished. I went back to work.

And well, I worked through chemo. so I took the fall off.I work at a school.So I take the Fall off to go to radiation every single day.so I think I was probably done in like by November.And I remember my doctor, he said to me, like, just give me a year and I will give you so many more.and it Was just like something that I just need to get like this year,like just keep. plugging away and you know, it's going to suck. Where'd you get your treatment at? Cause you were at the time you're living in, uh, I think we were still in Southeast Philadelphia or Southeast Pennsylvania.

Were you in your Jersey at that time? No, no I was in Jersey and I had, because I'd had my daughter of the year before and she was a high risk pregnancy. I just switched like obstetricians. So I delivered at Cooper in Camden. And so then that gynecologist, OBGYN became a gynaecologist. And so I was with her at the time was only a year later. So I went through Cooper for pretty much everything, really, except for radiation. Yeah. I kind of just stayed in that system. And then Kelly, you were, so you mostly you're New York native or you from like, is your family from?

Okay. so your Newark native. You got your treatment where? So, I decided to go to just kind a private practice and he was Dr. Milliman. amazing. A few of my mother's friends have gone to him. I contemplated going to Memorial Stone Kettering because my father went there and they were amazing, but my Father kind of explained to me like they're long days, they are tough days because we don't live in them proper. They lived in Worcester at the time, I was in now in Rockland, which is just a little bit further.

It's a long day and he basically said it's You know, when you're going to those sort of places, it's all inclusive. You have to do every test, every blood work, and every scan. And he said, you know because we live in such an amazing area, so close to Manhattan, there are so many amazing doctors and you now breast cancer is so treatable that he really encouraged me to go to somebody closer to home just so it wasn't so physically, emotionally, mentally draining on me. Um, And it was great because the doctor I actually ended up going with had originated from Memorial Sloan Kettering, so still had that strong background.

So it worked out really well and it was more convenient and he was amazing. I still see him twice a year, even though I don't live in the area, I will still come back home. Um, see friends and families and make an appointment. So he's still kind of part of my, um, part my team, even though now I'm going to Moffitt cancer center in Tampa. And that's important because for, I feel like for an oncologist, you know, to see a success story, at least to your extent, come back to say hi to visit. It's like, that has to be a great feeling for him.

He's been a part. Even though I moved away five years ago, still I've been going. Twice a year coming home to, To see him I'd moved to Orlando. The healthcare is garbage in Orlando. Honestly, in Florida in general, it's terrible. The doctor down here, he was really bad.

Tammyu2019s Diagnosis and Treatment Journey 10:20

I could tell you more stories than we have time for today. failed when it was so blatantly obvious that the cancer had come back. The second one just didn't really ask any questions, wasn't up on things. It was still Dr. Middleman that was making a call saying, oh, we have progression. We're going to put you on Exchiva. Okay, this hormone is failing. we're gonna move to injections instead. He's still pretty much just pulling the strings. I finally found an oncologist that I feel is as good as him that it gives me a little bit of relief.

Now, what type were you, so we have HER2 from, on Tammy, your cancer, were your HER 2 positive as well, or were some kind of other variation? No, I'm a weird case. The first time I was ERR-positive, HER-2 negative. the second time, it was, ERPositive HERR2 positive. So I had perceptin for a year then. And then this last time HERr2 low. so not technically negative, but low, So it's kind changed a few times. So for people who are listening, we talk about ER, HER2, all these things, they're cancer biomarkers.

And the idea is cancer cells will have biomarks that chemotherapy or therapies will attune to. Generally speaking, her2 positive is the more easily treatable one just because there's more therapy attuned to it. Tammy, you guys can correct me if I'm wrong there. That was best my understanding. I've heard that as well. And I was just going to say, it's kind of crazy. Years ago, I think it was one of the worst ones because they didn't have Perceptin. There's a movie, like I don't know how many years ago.

I know what movie you're talking about. Do you know? I can't remember the title for it. And I want to say it was Harry Connick Jr., maybe, but it about the study of Herceptin and all the women that were dying because they were HER2 positive and there was no treatment. Chemo alone was not enough. Years later, I think it's a testament for how important studies are in progress. Medical fields, you know, because I think so, we have two people on here who were in their early to mid thirties getting. Diagnosed with breast cancer and this was we're talking 2010 2009, there's a lot of conspiracies right now about the COVID vaccine, for example, and young people and all those turbo cancers coming.

People don't understand that these quote unquote turbo cancers that, you know, a lot of people like to push online. Young people getting diagnosed with cancer decades ago. This is not something that just happened over the past five years. Are there more diagnoses? I have to number the numbers. I think the answer is yes. And the question is why, but that's not neither here nor there. You have people who are getting diagnose younger and younger. It was, um, Kelly, You brought it up that. You had to get a mammogram the age of 31. I'm surprised insurance allowed that because one of the things that we're seeing right now in the medical field is people who are getting, you know, proactive diagnostic studies, either, colonoscopies, mamm diagrams, insurance companies are fighting it tooth and nail saying, oh, not in their right age.

You don't have any risk factors. And yet. We're seeing people in their 30s getting diagnosed with these cancers. And it's frustrating that people can't get these tests. The doctors know this and they have to make sure that they're really explaining the risks. So my father at that point was essentially dying of cancer. He only lived another year after. after I was, and with three of my four grandparents, with it being suspicious, especially because they'd also felt it in my lymph node. I think the doctor was aware of all those things and made sure to write it all, code it properly.

Because I've been told several times that they have to really make the case for it. It drives me through a wall. I'm like, who is this pencil pusher that has no idea about myself, my cancer, or my history? Or any medical, has medical schooling and is saying, no, it's my oncologist who has been saving my life for 10, 15 years at that point. It's infuriating. They know that and they have to kind of go above and beyond. Yeah, and Pennsylvania, at least as a state, is trying to fight back against prior authorization.

Now there's all kinds of things in the news about how insurance companies are using AI to automatically down code and AI automatically reject things. And yet it's just frustrating that, like you said, there are people with no medical training saying no to studies. We're not shoving cameras in people's rectums or we're rating people breast for no reason. This is life-saving interventions that we're doing. And the ironic part about this is early detection not only saves lives, it saves you guys money, right?

Like, you know, the later you detect cancer, yeah, You know you're going to spend more money treating it. So what are we doing here? Tammy, did you get any pushback from, Did you, get delayed diagnosis at all? Was there issues with your? No, actually I was shocked. Everything really went through fairly smoothly and I'm not sure for what reason. I didn't have a family history of breast cancer. I have the history a lot of cancer in the family, but breast wasn't one of them. You know, even to the point of getting the genetic testing and stuff, that was like...

You know, at the time they were only testing for BRCA1 and 2, and you know they approved and covered all of that. I think they, I, think my doctor did have to kind of push a little bit for that one, but then even years later they now test for like, how do I even know if it was like 19 or 21 or something like that? And they called me again and they said, you know, do you want to participate in this test? And that was covered as well. Surprisingly, it was all good. I think that I don't know if it depends on also like the insurance provider as, well, I that things have gotten harder.

Like I feel like I'm constantly fighting for every stupid thing now. You know what I mean? Like, tired of calling. Oh, there's only like three anymore. There's no like use like Cigna, United Health and like Aetna or something or no Blue Cross I guess is in there too. So maybe four major insurance carriers in this area. But yeah, pick any one of them, throw a dart board and you know, you can hit one and there is an issue. It is the coding. The coding is, it's unbelievable that when you call, if you just communicated with each other, You would figure out that what they requested and what you should be paying for because it is covered under my plan.

Correct. Like, why am I wasting two hours of my day? Yeah. And why are you denying me on a technicality? It's like, can we just use some common sense here? You know, here's what we're looking at. Kelly, you mentioned- A technicalities that can lead to your fatality. Yeah, yeah, exactly. A technically can leads to fatalities. That's the title of the episode. Thank you. I'm good at titles. By the way, we had talked about us being in our 30s. My best friend who lived in the town next to me was diagnosed a month after me.

She was 30. I got sick and she had noticed she has a lump and said better to be safe than sorry.

Cancer Biomarkers, Insurance, and Access Issues 17:20

Look what's going on with Kelly. It was an interesting experience to go through it with somebody as young as I was. you know, um, because we were, we, were the rarity. So, you, know we had different issues, which Tammy, I'm sure you felt too, You know? We kept thinking, well, We're not in our seventies or eighties. Like we care what we look like. We, care if we're bald, that we have lymphedema and we'd have to wear these sleeves. And people are asking us questions. we We were both single. so it was like, do we want it?

Well, actually I can take that back. I was with somebody when I first was diagnosed. Tammy I think you were. Yeah. You married, yeah. I've been married for 26 years. I feel really old. He's a rock star. Honestly, I think about what that was like. And I had three young kids at the time. A 15-month-old, a six-year- old, an eight- year- olds, and my husband. I don't think we could have, I dunno how I would have functioned if it wasn't for all of them, you know what I mean? And you were still working?

I was still I'm a school counselor, an elementary counselor. I worked through chemo, then we had off in the summer, so that was the Summer of Surgery, it was so fun. And then I took a few, like, the first two months off for radiation, just kind of like to get myself together. But I did, with the wig on and eventually the way to off and the scarf on, and have my students asking questions. But kids are so like, especially like elementary kids, they just take you as you are. They don't care. You know, because they're germ carriers and you're going in there with a compromise.

Yeah. So it was, I would take, i had treatment i think on Thursdays and so i would be out Thursday, Friday, off Saturday, Sunday, and usually the Monday, maybe the Tuesday. And then I'd go back, work like two weeks and then do it again. Were you getting the immune boosters, the neupogen or the nalasta? Well I had the, was it nalaasta, that I have the shot every The day after, right in the rear, it was really fun. Hurt, hurt. Man, literal pain in ass. Yeah, a literal in pain the ass, but it did its job.

I get two of those now every month, one in each cheek. One in its cheek? Yeah it's not last year, its full vest red but its thick like molasses and its a big needle. Oh my gosh. Now, Kelly, you're, so you were diagnosed at 31, first round reconstruction and all that, and then you are cancer free after that. I think when I, when, I met you, were cancer-free at the time and that it came back. So how long of the remission period were you between diagnoses? Seven years. so I had hit that five-year mark, which everybody thinks is like a really great one.

you know, really good about things. And then it came back. They actually noticed it on just one of my regular screenings that I was still doing, but there was something there. I only, I had less than a 1% chance of it coming back in the breast wall after a double mastectomy. twice in the breast wall. So at that point, we did another surgery to get back in there, take it out. We did more chemo. You can't radiate the same place twice, so we couldn't do radiation, but we switched. I started doing lupron shots, which is to stop my menstruation because being estrogen receptor cancer, any estrogen in my body is feeding that type of cancer.

They were like, well, you need to got your hormones down to like nothing. So we did that and then I did a full hysterectomy the next year in 2018. And then went back into remission for three years and I came back again. My body's like final destination. Like I always say, like it just keeps trying to kill me. So you've been currently in treatment now since 2022, is that correct? So, you're still going through treatment? 21, sorry, 21. Yeah, June 2021, I came back again and it came as stage four.

So I've been doing indefinite treatment since then. Okay. All right. Can I ask about Outlook? Sure. I mean, who knows, right? That's the thing, they don't know. It had gone to my bones and had been in my skin and my breast when it had come back in 2021. We did surgery. Um, to remove it from the breast, felt good about things. Um we added Exchiva, which is really good for stopping it for moving around the bones, Which did a phenomenal job. It no longer showing up in my bones. But it's at my thought I was NED, no evidence of disease, even though I still doing active treatment.

but I've been watching this nodule in long grow and grow, and I have not had a great feeling about it. And I had to fight my ass off. to get them to take me seriously. Even with stage four cancer, with all these diagnosis, nobody wanted to touch it. I actually went to a pulmonologist at Moffitt and he fought me. And he said, oh, the chance of it being cancer is 1%. I said well, they told me I had a less than 1% chance coming back in the breast wall and it happened twice. They told I only had 4% of chance at getting cancer under the age of 40 and that happened.

I just started spewing out all these numbers and I thought, well protocol is, and my name is not protocol. My name is not protocol. I am a person, I'm crying in front of you and I telling you, this nodule has been getting progressively bigger for the last three years, albeit slowly, but I've been on treatment. So I think the treatment is keeping it at bay. Still wouldn't touch it. Came back to a doctor at Orlando Health who agreed with me and said, it's worth getting in there and looking at. He said I don't really think it something, But I hear you.

Let's do this. Lo and behold, the nodules in my lung is cancer. And the bronchoscopy and the doctor looked really somber. I was like, I'm so sorry. It is cancer. And I, was just so grateful that I had the answer finally. Yeah. Like I wasn't crazy. Sometimes you just know when your gut and you have to just like fight people. And it's funny that both of you have said that. The doctors have say, I don't think it is this. It's low probability, it probably not. You know, they're hedging in the positive sense, which, okay, fine, but at the end of the day, 1% is 1%. It is not zero.

Exactly. 4% of 4%, it not 0. And the reason why we throw out these percentages is, speaking as a physician, It makes us feel better. it makes feel us better when we miss something that says, well, you only have a 1 percent chance of getting it. You know, will I have it now? Oh, but it's only 1% chance. Doesn't matter. Like the person in front of you now has this disease that you have to deal with now. If this person now, has his diagnosis, you'll have the deal. And we may not like to do a test because we're afraid of the results.

But if that result is going to change somebody's treatment outcome, he got to the test. I don't care what percentage it actually is. And if your clinical suspicion is high enough, a bit of a tangent here. One of the things that ER doctors for some reason loathe to do is a CAT scan of lungs to check for pulmonary embolism. And it's just, you know, we do, Yeah, we do, algorithm after, you know, blood test, whatever to avoid it and say, oh, it's probably not a pulmonary embolism. So I'm going to look at this, cheat sheet here and, yeah, probably we're not going test for it.

I tell my residents, I said, if this person in front of you, based upon their clinical signs and symptoms and their vital signs, If you did a D-dimer, that's what the test is called, and it came back negative. Would you go to sleep happy at night that it was negative that you didn't pursue it further that they probably don't have a polyambulism? Because if the answer is anything other than, you know, no, then do the CAT scan. Do the test to just make sure that this person doesn't had this diagnosis.

You know, and they do it and it's negative and great, just do. You now there's obviously there are issues with, you know contrast and a kidney, whatever. That's not the point here. Point is if somebody, if you have a reasonable degree of suspicion based upon their symptoms presenting with or their history or whatever, do the freaking tests.

Recurrence, Metastasis, and Self-Advocacy 25:40

It doesn't matter. If the test comes back negative, You get to go to the person and say, Hey, good news. The test is negative. Okay. And if it is positive, congratulations. Now you can start treating me on somebody that may have had a bad outcome later on. You know, right. A deadly one. I also had a pulmonary embolism about two years ago and ended up in the ER and it was presenting like a heart attack. And so they did EKG. They said your heart looks fine. Actually called 911 and they came and said, your blood pressure is.

And I said, I've been through a lot. I don't freak out. And stay calm and I keep myself, but something is seriously wrong. It feels like a heart attack. Said, you know, your EKG is fine. Do you want to go to the hospital? And, yes, called you. No, no, because you're on speed dial. Do you want to go? Yes, I want go. Get me there now. I feel like I'm dying. So we get there and they're taking their time. They can't get a vein, they are like laughing and I am in so much pain. And I was like, something is seriously wrong.I need you to move faster.

Something is wrong, taking our time, and finally come back after CT, the doctor, it looks very somber. You have a pulmonary embolism and you're wrong and again I knew something was wrong! And again, you have a diagnosis of cancer. That puts you at the highest risk factor for that to begin with. Yeah. I had a thought, I just lost it. Shit. Happens a lot on the show. People are willing to take that 1% chance when it's something good. And there's like a less than 1 percent chance of winning the lotto.

Everyone and their mother goes out and plays the Lotto, but they're not willing agree for somebody to do a test that could save their life with the same percentages. Why? Because it doesn't affect you directly? Well, screw you. This is my life. Right. Tani, what's your prognosis at this point, if you don't mind me asking? So it's been almost 16 years I was released. So my oncologist wanted to release me many years ago, and I just kept coming back like every year. I said, no, I'm just still going to check in with you.

And the same with the radiation oncologists. You know, well, just need somebody to like, you know check me out. No scans, no blood work, just once a year appointments for several years. And then at some point my oncologist left and he did something in the more of the pharmaceutical space. So when he left, of course I was crushed because I thought this is just going to be my person for the rest of my life. you know, because I felt very safe with him and I trusted him. I did meet his replacement once, scheduled an appointment just to meet her and hope that I'd never need to see her or anybody ever again.

So I, I don't know. Yeah, for, what did the oncologist tell you to look out for? Like as far as like, you know, if there was a concern that the cancer does return, were there any signs or symptoms, especially that they're like if you experienced this, do you need to come back to us or get scans or imaging, whatever? But do they say anything to you? While I was still with him, I would reach out occasionally if I had like a pain or something weird or whatever. And, you know, certainly earlier on, and it doesn't go away, if there's something that seems a little off, like I automatically used to be like, oh, well, it's cancer, its spread, It's the back, this, that, um, Dr.

Google is a dangerous space for me, but also it is my space. I just try to not let it be the forefront of my thoughts, but I have had a few other things go on. Like I had SVT for my heart, so they'll do like a scan and check that every now and then. And like, a spot came up once on my kidney and my liver and they were like no, you know, it's okay. But it still something like it in the back of your head. You know what I mean? Worst case scenario is I was going to go through your, you know, your thoughts at this point for everything.

Yeah. So at point, I don't know. I didn't really say anything. I think there is a misconception among people who get diagnosed and treated cancer that it's gone. And we don't say it is cured, you know, we say its in remission. Right now the cancer is not detectable in your body, but for any cancer there's always a chance it could come back. I've seen cases of, 20 years later, somebody has one cancer and it's gone and all of a sudden it pulls up again. We're seeing case studies of people who have other cancers that are immunosuppressed suddenly and then it returns.

There is unfortunately no guarantee, but what I want to point out with this episode is for both of you, You both felt something, whether it was your significant other or yourself, you both feel something weird, something is wrong, and you pursued it. You didn't blow it off, You sought help, And you advocated for yourselves too. And I think this is where we run into issues with people who either they blow or they don't know how to advocate for themselves. And, you know, I'm not going to lie, right now, for those of you who are on Spotify or Apple Podcasts, You're hearing this from two white women, and there is a demographic challenge associated with diagnosis and treatment in people who're non-white.

Both of have the education to know that a lump on the breast means there's a problem here. We need to get this looked at. There are people who don't and with people, who scoff at being the whole breast cancer awareness stuff going on. No, that's the part of education. The people are educated enough to know that I need to do a breast exam, even at the age of 30 something or even earlier than that. It's, you know, what is that looking for? Why should we be doing this? Well, I'm not in the risk factor yet.

Doesn't matter. You should be checking yourself. And these are, these two women in front of you or on the radio, whatever, are examples of why awareness and self exams and education, especially are important. But then recognize that both of you lived in or near major metropolitan areas that you had a lot of options to get treatment. So somebody listening to this in Kentucky and rural Wyoming, you know, they're going to have to drive an hour and a half to their nearest tertiary care center for treatment and care.

You know it's a little different than somebody who's living in New York or Philadelphia. Philadelphia and New York, like two major cancer center hubs of the country. It's insane how lucky people are to live in this area and have that, but other people in parts of country aren't. So now all of a sudden, even to see a doctor, hear from a Doctor, they're getting pushed out. it delays her treatment. And now you have the insurance issue now where insurance is denying these tests or this care, or maybe they are uninsured and they can't get it until months later.

Ideally, best case scenarios, but there are other worst case scenario where they can't even get their foot in the door. And it's frustrating to see cases like this. People that live in an underserved area that I take care of can get the timely diagnosis they need to for financial reasons. There's a lot here, and then when you hear for the rest of this month, you know, breast cancer awareness, to understand that it's not just, not to speaking to you, who may have the education and knowledge to do this, we're speaking a population of people that don't have education, the financial means, everything.

And it is important that we try to bridge that gap a whole lot more than what we are doing right now. As Kelly was saying too. Don't just listen to watch and wait. Watch and Wait can be a death sentence. I met a woman in the chemo room. She was in her mid-30s. I want to say she was 35, 36 when she had lung cancer. And she'd seen a doctor and they said, well, it looks like something's there. We'll watch and wait six months. Her gut told her something was wrong. So she went to Memorial Center in Kettering.

They took her seriously and did all the tests and found that it was lung-cancer. He said if you had waited six-months, we wouldn't have been able to treat you. 15 years ago, lung was still kind of a death sentence. Things have changed a little bit, but she's still here because he had caught it earlier because she advocated for herself. She listened to her gut and she didn't wait and watch. So. My best advice to people is to just fight. It's better to be safe than sorry. If one doctor says no, find another one.

Get a second opinion. Yeah. And I had a case shortly being in attending actually. So this was 2019 now. I'd a patient who came in my first month and she was complaining of constipation. You know, and her abdomen was getting more, you know swell and extended and painful. and you, know like, okay, well I looked at her and I did a quick ultrasound on her. So I knew this wasn't good. Anytime you have fluid in your abdomen, it's not a good diagnosis. The best you can hope for is basically your liver's going south here and you've, you know, issues with your livers.

So, I did a CAT scan and it came back that the reason why she had constipation for a few months was because she has ovarian cancer. There's a big tumor in the ovary and she had basically, we call them malignant ascites or basically there's, a collection of fluid growing inside the abdomen because of loss of protein and things like that associated with the cancer. And again, it was one of those things where she kind of kept going back and forth to the doctor. The doctor was giving her, you know, well, let's try, supplements to make you less constipated and stool softeners and let us try some antibiotics.

Then finally she got a prescription for a CAT scan. You know, months after this started, but then the pain became so unbearable. She came to the ER and I had to make the diagnosis for her. And as an ER physician, one of the things I absolutely hate is seeing somebody that I don't know personally, who's I've never seen before in my entire life. and, I have to tell them, Hey, you have cancer. I made that diagnosis more times than I care in the E R either because their primary did a test and they didn't have time.

view the result or sometimes, rarely thankfully, but sometimes the doctor sent them to the ER to be hospitalized but didn't tell them why.

Support Networks and Living With Uncertainty 35:40

So now I have to tell the them, the doctors sent you here because your scan showed cancer and I'll have admit you for treatment. And ER doctors across the country will kind of share a similar story. Again, it's not common. I personally work with a number of colleagues who thankfully do not do that, But it has happened and it is still frustrating. Do you talk to other breast cancer survivors? Do have a support group? Did you speak to people who are undergoing treatment? And do you do any of that?

Let's start with, I guess we'll start Kelly first. Go left or right. So my very good friend, Lauren, I still talk to her. She and I are still good friends. We've also had a diagnosis, a re-diagnosis since our first time. So her and have a lot in common. we both have lymphedema, so we talk about that. so she's been an amazing sort of support. I'm still friendly actually with that woman I mentioned that I met in the chemo room way back when. And I don't think I really know. The second you meet somebody that has cancer, you immediately have this kinship where you realize that you're all kind of part of the same club that you don't want to be part, of but you immediately have something in common with them or you kind of talk shop or compare notes and it's nice to know you're not the only one.

I am a member of a couple of Facebook groups and that has been really, really helpful. i've learned a lot from other women that will post questions or mention something and i'll put following i want, to learn this too what's the answer so That has been really helpful, but not as much in real life. I would say, for me, it's been very personal. Unfortunately, I've had a lot of friends. A group of high school girls, there are 10 of us, and more recently I have had two friends in that group who have been diagnosed and their sisters were also diagnosed.

you know, statistically, we're a 3 in 10 group. Also, a lot of the girls I work with, I've worked with quite a few ladies in school who have had breast cancer. And then in my town, so I live in a little small town and it seems that if you knew somebody who was recently diagnosed or somebody knows somebody and they're like, wait, i can connect you to my friend. So like hey, do you mind talking to this person just to kind of give them a you know, like if they want to know about like your surgery or something like that.

And I do remember for me deciding what kind of reconstructive surgery to do, that I talked to somebody that my doctor had connected me to. So I feel like I've got good friends here in my town who have gone through it. I have a book club also. There's three or four of us in that bookclub that have also had it, So, you know, talk about clubs that you don't want to be a part of. However, I will say that the support network with these women, especially when they are your people, and, it really is amazing.

And when I was going through it, just sometimes talk to people that had been through treatment. Um, but I really used, uh, I think it was breastcancer.org. There was like an online, it, was definitely like, an, online. I was never an in-person support group person or anything like that, But I did really feel comfortable in that space. So. Yeah. If people who have diagnosed with cancer, obviously there are online support groups or. You know, if you know somebody that has it, you don't ask around.

Ideally, I think it's interesting that your doctor pointed you towards a support group online too. To kind of say like, look, If you want to talk to somebody, talk, to other people like you. It's good to have people who have gone through this or are going through that you can also rely on too, because, it can feel lonely. Yeah, and I was just going to say especially like again at the age that I Was at in the stage of my life that i was at it's different than having a conversation With somebody in their 60s who was going through treatment so for me that was a good space to just kind of find women who were in Their 30s or people who had children or Treatment is was definitely much more aggressive I think because of the Age being a factor at least that's what my oncologist said He was like we're just gonna go at It hard so you know I do think it looks different from person to person, diagnosis to diagnosis, and also just like where you are in your life, stage, span.

Yeah. Oh, you know, I went to Gilda's Club when I was still living in NYAC. I got there. There's a couple chapters throughout the country. They were amazing. young women's support group, but it wasn't really for me. But they also had other great stuff they had like Pilates and yoga for cancer patients. So you didn't have to be embarrassed if you couldn't keep up with the young Pilate instructor and everybody else, you could kind of just go at your own pace. That was great. I would highly recommend.

anyone if you live near a Gilda's club and you've been diagnosed to get in touch with them, they were amazing. Good. Is there something that you give the opportunity now, you know, one thing or one thought you want to leave people listening to this with, as far as breast cancer, diet, anything, can be anything you'd want? I have so many thoughts. so many. I think that Kelly, you've said it many times, but I feel like the first one is just like to really trust your instincts and to be your own advocate.

Get as much information as you can.I think knowledge is power. So when you have knowledge,you have the power tobe able to fight for what you need and also to make really informed decisions.So Ithink that's thefirst one. One thing I wish that I had if you know those like, you could do things different. I wish I had taken a little more time to make decisions about my reconstruction. And I felt like everything needed to happen, happen happen. Like in like a really quick phase and I do wish that I just maybe done the mastectomy and then revisited the reconstruction and not done it all at one time, just because my experience was really awful.

So I feel like looking back, that's something I wished I'd taken more to really, I think fear made me do a lot of things that, held out a little bit and taken a bit more time for that. So I think those are two things. And then the other one is just, so my very best friend would say to me when I was having really bad days, she'd say, you can stay in the dark space. You can visit the Dark Space, but you just can't stay there. For me, that was really important that I allowed because everybody loves a Everybody loves a strong, strong person.

You're so strong. So brave. God, it's freaking exhausting. And you're not strong and brave all the time. Sometimes you are a basket case. Be a basketball case, like it is okay to be in the dark, sad, scary space. Just don't stay there for a really long time, but allow yourself to feel the feelings that you need to fill because they're yours and they are real and nobody else gets to tell you. that they're not, because this is your experience.

Advice for Patients and Closing Remarks 42:30

This is nobody else's. So, you know, allow yourself to have those and then also to celebrate those small victories. Like, it doesn't have to be the completion of something. It could be that you freaking got out of bed that day and that, put on your wig. I don't know. Just celebrate the small stuff too. Those are my things. Well said. Thanks. Definitely. Yeah. Kelly, any thoughts? Um, yeah. So for me, I think I've had the same experience to have me where people will connect me with somebody, oh, someone's always going to do this.

And so I find that I'm kind of, will always kind help be somebody's guide. There are a couple of things I always say to them, um, bring a notebook because the doctor is going say a lot of thing that you are going forget. And he's going to say a lot of terms that it's gonna go in one ear, not the other. But when you pause and say slow down and how do you spell that? And then you can, you know, do a deep dive later and you kind of reflect back and ask a lotta questions. Give them every symptom that you've had because it may seem like it irrelevant, but I found a lot of times that symptoms I've had have become relevant and have made sense.

So explain as much as you can. Even if you feel like you're talking too much, it could save your life. It could make the difference. And questions. I would ask the same questions, even if I'd already gotten the answer from one doctor to another doctor, whether it was to a different nurse or different technician. Ask questions about PET scans. Well, what is this? How does this work? I was really valuable. That would help me to explain it to my friends and family or for me just to wrap my brain around it.

Like Tammy said, knowledge is power. I find myself every time I go and I just ask as many questions as I can and learning gives me a sense of control. in a world where I have no control. I can't control what is happening to me. It's either take this pill or die. Okay, I guess I'm doing it. But when I learn about it, it helps me when i ask questions. When I understand it I feel like I am kind of involved in the process. Somehow mentally that helps me, totally makes sense. Totally. Yep. Good stuff.

All right. Well, Kelly, Tammy, thank you so much for coming on and sharing your stories. I think women everywhere should and can hear these types of stories and the very least are in to educate and advocate for themselves. So hopefully, hopefully this message gets out there more. We'll see, but that's my hope. Thank you all so. There wraps up another episode of the Jaffercast. Thanks again for Kelly and Tammy for joining me. Talking about their journey with terms of breast cancer, treatment, prevention, diagnosis.

If you are having issues with trouble diagnosing or trouble with treatment. Listen to them. Understand that you're not alone. Okay. if you have cancer that runs in your family, please do not ignore symptoms. Get tested and always be aware there's somebody in shoes that has gone through it or is going through right now and reach out. The support is there. If family and friends are not available, find some other means, but please don't go through this alone. As always, I encourage constructive thoughts, comments, feedback.

Please like and subscribe on YouTube, Spotify, Apple Podcasts, all the fun places you can find podcasts. And if you have comments or questions or if want to be on the show, feel free to reach out to me at jeffordcast at gmail.com. Like with anything, please. Don't take my word for it. Your own research, talk to your own doctor. I keep you reminded at work. Make good choices everybody, we'll see you next time.