Dorothy: [00:00:00] Does a woman have to be her own best advocate? Yes, says our next guest, who had no problem firing her doctor, fighting with insurance companies and winning, and most of all, beating breast cancer. She threw a party for herself while in the hospital, then went on to raise thousands of dollars for different breast cancer organizations.
She is quick to tell you why you have to fight for yourself.
Let’s Talk About Your Breast. A different kind of podcast presented to you by The Rose, the Breast Center of Excellence and a Texas treasure. You’re going to hear frank discussions about tough topics, and you’re going to learn why knowing about your breast could save your life. Join us as we hear another story, and we answer those tough questions that you may have.
For years, Emma Jacobs has advocated for women of [00:01:00] The Rose. She remains a force in the medical community through the Emma Jacobs Breast Cancer Foundation. And while she is a breast cancer survivor, the foundation wasn’t always about breast cancer.
Emma: I started it just as a foundation. It was the Emma Jacobs Foundation. It didn’t have the word breast in it. And actually, my goal was to raise money for a lot of different things. I didn’t have a breast purpose, of course, back then. It was only a year before I was diagnosed, or probably less than a year, because I was diagnosed in January of ’01, but my motivation at that time was I had a really close friend in the UK whose partner had been diagnosed with breast cancer, and even though she had great health care, at that time, trying to get any kind of, um, vitamins, or as they say in England, vitamins, or anything to combat any of the chemo treatments was terribly expensive. And there was just [00:02:00] no way that, uh, they could afford it. So, you know, that was my first mission, was to raise enough money so that she could get this. And it was, it was like over a thousand dollars a month, or maybe a thousand pounds a month. It was ridiculous.
Dorothy: Let’s talk about your diagnosis. I know you were faithful about getting your annual mammograms, but breast cancer wasn’t found as a result of a mammogram.
Emma: Correct. And interestingly, you know, I started getting mammograms, I want to say, At 35. Um, I was a smoker, and that’s probably why.
So what happened was, I was on the telephone, uh, one day, and I was laying back in bed, chatting to somebody, and I don’t know why, but I put my hand up, and suddenly, I felt a lump. And, uh, it was interesting, really, because I was nine months out of a mammogram. And two months before that, I had started into the pause, which was strange.
My mother started at 43 [00:03:00] and I was 43 and I was having night sweats that were unbelievable. And I was talking to somebody at the Houstonian and they said, “Oh, there’s this woman at the woman’s hospital and she’s amazing and blah, blah, blah. Maybe you need to get on some meds.” Of course, back then, we didn’t know a whole lot about those kinds of medications.
So, um, I went down there and, look, I can’t remember, but she probably had me fill out a form. It probably asked when my last mammogram was, which was nine months. It was clear. It asked was there breast cancer in my family. I’m sure, because they all do. And I didn’t have it. So, yep, she put me on them. And I think, you know, well, at least I thought about, I thought about this a lot at the time.
I don’t think about this too much now. But I think that, um, whatever happened in that two month period that made that cancer grow so fast [00:04:00] may have saved my life. She may have actually done me a favor because if it wasn’t on there nine months before, it It may not have been on there in three months and it may not have been on there another year from that when I was diagnosed. I was diagnosed stage three because it was microscopically in four lymph nodes, so it’s on its way and hopefully It was only on its way. It wasn’t out the other side of the lymphatic system And so they blasted me with chemo and they blasted me with radiation and they put me on tamoxifen, which, incidentally, my doc, who I love, she’s brilliant, um, she said that was actually more important than the chemo and radiation, even though she didn’t tell me at the time, because tamoxifen, you know, is the joy for estrogen positive people.
Um, and I spent, I think I was on that for three years. And then [00:05:00] they switched me to a Remedex, which I was then on for, I don’t remember how many years, seven in total, eight in total, it used to be something like that. So yeah, I think that really changed things for me.
Dorothy: Back then there wasn’t much information about a woman’s hormones and how they might affect Impact breast cancer. It’s not like it is now, but that didn’t stop Emma from making what some would consider a very unorthodox move.
Emma: Of course what happened when I found the lump was I made a phone call to somebody that I knew that was married to a plastic surgeon because my first idea was well, you know, somebody’s cutting them off; somebody is making new ones, he’s gonna know the guy who cuts them off. I mean, that was like, just went into my head. Stupid, stupid. And, actually, I have to tell you, this was weird too. About two months before, I was watching something at the Houstonian, on TV, On Oprah, about [00:06:00] the fact that they were using stomachs to make breasts.
And I remember thinking, I’d actually thought about getting a tummy tuck at the time, you know? Early 40s, why not? And something in my head said, Whoa, you might need that for something. Hold on. That’s weird. That’s really weird. So, I did hold on. So, when I went to see the plastic guy, a little later down the road, of course, the thing that he decided for me was to use my stomach to make a new breast.
So, you know, I had some weird stuff that happened to me that were maybe sending me signals. I don’t know. The story about, um, my diagnosis was, and I hope they’re better at doing this today than they are, than they were then, but, uh, the guy, the guy that I, I called is a plastic, and of course he knew, um, he worked at that time [00:07:00] both at Anderson and at Methodist. Well, it was Baylor Methodist back then. And so he said, you know, where do you want to go? And I said, I don’t know, um, whoever will see me first. And he got me in with a surgeon at Methodist. Well, the surgeon had looked at all the information, and he said, you know, am I really I don’t think it’s going to be that bad.
It looks like it’s probably still in situ. You can probably do a lumpectomy, maybe some radiation, maybe question mark, but a lumpectomy, whatever. So the next day I’m being wheeled in for my lumpectomy. And I don’t know why I said this, but I looked at him, the last thing I said was, just promise me one thing, if there’s a problem, please just don’t cut my breast off.
I don’t want to wake up without my breast. I want to at least be able to go back to the plastic and discuss options. [00:08:00] He said, okay, well, the next thing I know, my now husband of over 20 years, who at the time was my boyfriend, um, who I’d known for less than a year, is standing over me. And I wake up, and, and basically he has left.
What has happened to him is, the surgeon comes out, tells him what’s going on, and says, “Look, I’ve got another surgery you are gonna have to tell her.” And as he’s running out the door, he’s saying, “Tell her? Do you know who she is?” He had to tell me pretty damn hard.
Dorothy: What was the impact of having to tell someone you love that they have cancer? Did he ever talk to you about how he felt?
Emma: Can you even imagine how boring it’d have to be to be the news carrier? Um, but at least, the doctor had done what I asked. He said, he said to Patrick, “look, there’s too much there. It’s in the nipple. We’re going to [00:09:00] lose too much. You know, I’ve shown her back up because that’s what she requested and now she needs to go see a plastic.”
So, that’s basically what happened. Then I went to see the plastic and the plastic is like, Oh, we’re going to use your belly. How fantastic. Because it was really great back then having had a son six years previous.
Dorothy: Talking to children about what is happening to mommy, especially very young children. Emma, you use the best technique available.
Emma: You don’t use a whole lot of words with a six year old and they actually did help me at the Breast Care Center at Methodist Baylor because they had a program where they would help you, you know, with how you’re going to tell your children and lots of other things. But my son looked at me and he just looked at me and then he said, “Can I live with Patrick if you die?”
Dorothy: Oh my gosh, well at least he was a planner.
Emma: I think maybe he sort of got the got out of jail free card on that one.
Dorothy: From an early age, Emma didn’t have any [00:10:00] problem stepping out, taking charge, and doing what needed to be done. And of all the stories having to do with her cancer diagnosis, one of them stands out from the rest.
The one in which she fired her doctor.
Emma: Once you’re diagnosed and have surgery, Then I’m allotted an oncologist and the oncologist at Methodist that I was allotted, um, you know, was then going to look at, along with everybody else, um, at the team that they put together, look at, you know, what I was stage three, it was in my lymph nodes, in all, in four of my lymph nodes, even though it was microscopic.
You know, what was the best treatment plan? Because, you know, that’s what oncologists do, they treat. So, I’m in the hospital, I’ve just had a mastectomy. And it’s ironic, really, when I look back on it, you’re taking two— two suites in the Overdone Tower, I think you know where I mean, in the Fondren Suites. And we’d [00:11:00] set one up as a bar so my husband could, you know, entertain and, and greet people as they came to see me, you know, and I’m on the morphine drip, so I’m doing great.
Um, and so, and so people were coming and going and coming and going, and it was five o’clock, one afternoon, and Patrick had just gone down the hall to get something, and this guy, who I’ve never met before, walks into the hospital room, takes a look at me and says, Okay, well, I’ve looked at all your pathology and, uh, your stage three.
And so we’re doing chemo and radiation, but you know, I’m just too tired to talk to you about it right now so i’ll be back on monday and left! Friday afternoon five o’clock Patrick come as just after he’s left. He comes back into the room and I tell him this in floods of tears and he goes running down the hall to find this guy, but he’s gone. And I don’t think he knew what the guy looked like. [00:12:00] So I called My plastic and said look, you know, this is what’s happened You This, our kids were in school together actually, in elementary school together, in kindergarten. And so there was, you know, a connection that I could pick up the phone and call him. And, uh, and I said, get me another oncologist. And told him what happened and he said, “absolutely.” And then, within 24 hours, I’m emotional because I think about it. Um, Jenny Chang is sitting at the end of my bed. Couldn’t have got me a better person.
She is amazing. She’s now, she now heads up the whole facility. She then was working, you know, she was the number two person at Baylor. Now she heads up the whole of the Methodist facility. But she was just what I needed, a breath of fresh air. A woman, uh, she was British, from Singapore originally, and she would read about the bush, and I loved her.[00:13:00]
So, that’s what happened. But, what happened was, two or three days later, I’m home from the hospital. And I start thinking about this guy, and I thought, you know what? I’m gonna tell him. I’m gonna tell him. So, I called his office, and I got him on the phone, and I told him, I said, “I don’t know if you even are wondering or even care why I fired you and got another oncologist, but this is how it felt for me,” and I told him. Exactly how it felt. I said, “you were having a bad day? How do you think my day was going?” I mean, really? Anyway, there was silence on the other end of the phone and he apologized and I said, “that’s fine, but don’t you ever do that to anybody else.” Well, as luck has it, guess what happens to Emma about a year later?
Well, she’s volunteering in the chemo room. And the doctor [00:14:00] sees me every Tuesday morning in the elevator. Every I mean, as luck had it, he saw me every morning in that elevator, and every morning I introduced myself. “I’m sure you remember me. I’m Emma Jacobs.” And he’d look, and he’d look flushed, and he’d say, “Oh yeah, I remember you.” And I have to tell you that I think he’s probably a good guy. He just got, he was in a, he had a bad moment with me, because I, whenever I was working with his patients, I say working with, I’m volunteering in a chemo room, while people are doing chemotherapy, but when I knew it was one of his patients, I always asked, You know, “how is he treating you?”
And, you know, how’s it, and he, the reports were never negative. So it may have been a one off situation.
Dorothy: So the moral of your story is that we need to feel comfortable. With whoever’s taking care of us.
Emma: We need to speak up, and we need to advocate for ourselves.
Dorothy: Despite the [00:15:00] long road to recovery, Emma made sure to have some fun along the way.
Emma: All I can tell you is, is that I also, somebody brought me, while I was in the hospital, a guestbook. So, I don’t know where it is now. Everybody had to sign the guest book if they wanted to have a drink. So they had to come see me first. And I was out of it. I mean, I don’t really remember very much about this except asking if I could take morphine drip home with me when they arrived. And they were getting me ready to go home. Um, because you know, this is not minor surgery. It’s uh, it wasn’t. I of course had, at this point, a mastectomy and reconstruction. So they took my stomach to make a breast, and so there were, you know, it was 13 hours I think I was on the tape.
So I was really out of it. But yeah, so I’ve got, I guess there must be 30 or 40 people who came by over that 3 or 4 days, or 5 days, or however long it was that I was in there. [00:16:00] Unbelievable support. And for my husband too, because you know, people miss the caregiver. You know, they’re so busy. Worrying about the person who’s sick and the caregiver just gets, slips between the cracks and I know now from doing the kind of work that I’m doing that the caregiver, you know, that is the hardest job.
Dorothy: And we’ve had several episodes talking about the caregiver. During episode four, Dr. Cotes, one of our physicians, who was a caregiver herself, talked about how we really need to pay attention to that person sitting next to the patient.
Emma: Seven years went by with me wanting to change insurance, but because of pre existing conditions back then, I couldn’t.
And at seven years I could, and they wanted to know what stage I was. And I had no idea, because I had chosen not to hear that. And so I called up to Jenny’s office and spoke to Tony, who was her go to person. And when she [00:17:00] told me I was Stage 3, I was completely in shock. And, of course, I wasn’t going to be able to change my insurance when Stage 3, it’s just not going to happen.
And Patrick knew I was Stage 3, but he never, he never told me. I mean, I was in the room when they told me. He heard it when I heard it. But that wasn’t a message that he was going to carry to me because it may have had a very negative, uh, you know, connotation. And when I approached the whole breast cancer thing, I approached it like it was something that I would do if I was trying to get a sale.
Because I knew that when you sell, it’s a numbers game. And so the more things that you can do, if you know what your numbers are, right, Then the better of the outcome. And so, you know, we totted it up. Oh, chemo was whatever percentage it was back then, and then radiation, and then tamoxifen, which I think was 40 or 50 [00:18:00] percent back then.
And then, if you listened to new age music while you were doing chemo, it was 1%. And if you squirted lavender, it was another one. And if you, you know, exercised, it was another one. And if you went to a support group, anyway, by the time I finished, I was at 125. I had me convinced I was going to be okay.
Dorothy: Despite raising tens of thousands of dollars for The Rose through her partnership with Nice Wines, including $50,000 last year alone, this was the one area where Emma’s foundation has made an impact in the Houston area.
Emma: I look back on how it was for me when I had breast cancer, and how the breast looked, and how it looks today. Because even the plastic stuff has moved. The kind of research that, you know, has taken place.
You can’t move. You can’t [00:19:00] say, well, I’m raising money for a cure. Even though you are, you’ve got to go down a path of some kind. Um, and, and again, you know, it was kind of, I raised quite a lot of money for Dr. Lucci at MD Anderson, who I love, love, love. I’ve also sent him so many people and will continue to send people to him because it’s the way he treats his patients.
And as we’ve talked about already, there are doctors that Don’t treat their patients as nicely as they should, but make them wait hours and hours in corridors, and you know what I realized was It’s, it’s, it’s trickledown. Lucci’s patients never sit in corridors. So there’s, it’s not MD Anderson. It’s the doctor and their patient and how they run their group and the people they have working for them and how they respond.
[00:20:00] And that’s terribly important. Sure, you’ve got to be an amazing surgeon too because the work that you do in the way of the surgery is more important than, in other words, you don’t have to have a doctor with the best side for the bedside manner. You’re not going to invite him to dinner. You just want him to be the best doctor.
Um, but Lucci is all those things, which kept me doing it for as long as I did it, which I think was 10 years. The research research was really important. And what you’re doing at The Rose is incredibly important. And I think the difference for me is: As much as I, I adored working with Lucci, how much of a difference can you make at MD Anderson?
Well, you know, you can be one of the big long list of donors, but with you guys, I actually know I’m making a difference. That means more to me.
Dorothy: Did you research us?
Emma: You know, I [00:21:00] don’t know if you even remember this, but before I started doing stuff with Lucci, I was actually fundraising for you for a year or so.
And I think My memory serves me that it was Jenny Chang that pointed me in your direction. She was doing some pro bono work, I know, quite a bit of pro bono work. And I think we were chatting about something and she said, “Oh, well, you really should go talk to The Rose” or— and I did, I would hang and spoke to whoever it was, anyway. So I did know, I didn’t know a whole hell of a lot, but I did know what you were doing.
Dorothy: When I hear your talks and I, I hear your stories, I’m reminded that besides just being an incredibly generous donor to so many people, you’re also that connector. And that within your network, you can put people together.
Emma: I’m very well connected in Houston, having been through the program, so to speak. I was invited to a 75th birthday party, a close friend of [00:22:00] mine out here, and it was in a restaurant, and I’m sitting next to a guy, who’s, you know, I’m chatting with, and he was telling me that, you know, his brother had died fairly recently and that on his wife’s side, there was a lot of breast cancer Well, lo and behold yesterday, he sends me an email out of the blue He said, you know, I got your information from these guys and my daughter and he sends me this report she had gone in for a genetic test, and they had sent it back to her with the word positive across it.
So, he said, I’m sitting outside a hospital room right now, while she’s seeing somebody to find out what this means. So I said to him, you know, Jim, I’m really not familiar with this gene, but I can tell you one thing, and that is, If she is seeing a doctor, she needs to see one in a cancer hospital. Because I’ve talked to more people off the ledge that have been [00:23:00] misdiagnosed in hospitals that were not cancer hospitals.
There are amazing amounts of doctors who don’t know what the heck they’re talking about. And they are telling people terrible things, or their receptionist or secretary is telling them terrible things. Um, it has to be. And he said, that’s very good advice. Would it be okay if my daughter and I call you later?
And I said, yes. So I talked with that, with her really, on the phone for a while. And, um, and I said, look, I’m, I’m really well connected in Houston. She’s got three small children. She’s 30. Her mother had it. Her grandmother. I mean, it’s, she’s wriggled with, you know, the gene. This person had actually told her what her options were.
You can either be watched or you can do the radical thing. And she said, I don’t want to be watched, which I thought was really brave. I mean, I told her, which was really brave, but I said, absolutely, you have got [00:24:00] to see somebody who knows what they’re talking about. She’s not in a position to come to Houston.
So I said, look, let me reach out and see what I can get for you. Well, I sent out four emails. And I’ve already got three names for her. Surgeon, two surgical oncologists, and I’m now waiting on the oncologist. All at, now look at me, I’m terrible. There’s two cats hospitals here that are fabulous. Sloan Kettering. All at Sloan Kettering. And she lives in Westchester and Sloan Kettering has a branch in Westchester. And now I feel a lot more comfortable because now she’s going to go see people at Sloan Kettering and probably some of the best people at Sloan Kettering. Because if my guys in Houston are saying,” oh, this is the best person,” They know.
And so that was great. I was able to do that. Um, I wish that, [00:25:00] you know, she had said, Oh yes, I’ll jump on a plane and go see Dr. Lucci, but you know, or see Jenny Chang or whoever, because I can rustle up people like that in Houston.
Dorothy: What advice would you give someone battling breast cancer?
Emma: You know, I think Talking to another survivor is really important because you know the difference between sympathy and empathy and nobody feels it like an empathetic person.
Also, to have pointers. I mean, it’s great to have all these people in your wheelhouse. Of course, that’s the cherry on the top. Um, that when people are referred to me, they know, A, I’m going to listen. B, I’m gonna share my, as people call it, experience, strength, and hope, if you like. It’s no different than how AA works, really.
That it really isn’t. I mean, that’s the reason it’s been such a huge success, is talking to somebody who is, who’s empathetic, who’s been there. But also having those connects. And, you know, I have to shout out to [00:26:00] Lucci, boom, came right back with a name. They’re so quick, so fast to follow up. I can call them on the phone and, especially Antony, I think that’s, you know, they are amazing.
You just have to reach out, I think people are afraid to ask. People, you know, well I don’t really know them or I really feel I can’t ask. And you know, one of the things that I always say is, You know, “I don’t just do this for you. I do it for me. And if I can do something that makes me feel good, that helps my self esteem, you know, that is really important to me.”
The fact that people come to me and ask for my help, that’s huge. And I think people miss that. They think, “Oh, well, you know, I’m just going to be a burden, or I don’t want to be a thorn in their side, or It’s amazing.” All you have to do is ask.
Dorothy: Final thoughts before we wrap up.
Emma: Let’s just add one quick thing.
It was somebody else’s idea. But it’s [00:27:00] taking initiative to survive. Which spells T I T S. And I think we all have to have TITS.
Dorothy: Absolutely. Well, thank you again. Thank you for all of these encouraging words. I know someone’s going to hear this and go, “Oh my gosh, I can do it.” I can get through this. And we so appreciate you, Emma.
We appreciate everything you’ve done for The Rose.
Emma: I appreciate the fact that you’ve given me the opportunity to do it.
Post-Credits: Thank you for joining us today on Let’s Talk About Your Breasts. This podcast is produced by Freddie Cruz Creative Works, and brought to you by The Rose, visit therose.org to learn more about our organization, subscribe to our podcast, share episodes with friends and join the conversation on social media, using #Let’sTalkAboutYourBreasts.
We welcome your feedback and suggestions. Consider supporting The Rose. Your gift can make the difference to a person in need. And remember, self care is not selfish. It’s [00:28:00] essential.
