What You’ll Learn

A pro-active patient tells her story, begins with annual mammograms in her 30s due to her family history. Well educated in the healthcare system‚Äîand soon in the diagnosis and treatment of her specific cancer as well‚Äîshe had the financial means to travel beyond her rural home for second opinions and treatment at a major cancer center. Not every patient gets that choice, but here’s one that did‚Äîand the difference it made.

Interviewee: I’m in South Carolina. I live outside Columbia, South Carolina, and we’ve been here since 2000. I have two boys, we’ve raised those, and my husband is off working. We’re new empty nesters. I’m originally from upstate New York and moved to Florida after college because I wanted nice weather and then this was kind of a happy medium, so we’ve been here a while.

VIVO: Can you tell me about your experience with mammograms and being diagnosed with breast cancer?

Interviewee: My mom had breast cancer, so I started mammograms at 35, and I’m 59 now. That was going along smoothly through 2016. Then, I felt a lump in August of 2017. No prior mammogram had ever shown anything. I don’t think I had a 3D mammogram, it was a standard mammogram, and it was breast cancer. I am now seven years out. But it did turn metastatic, so it went to my liver, but I’m on treatment.

I love my facility, but I’ve only had one mammogram somewhere in that seven years. I’ve changed a couple oncologists at the same center. Some will say, “You need to have a mammogram.” And then others are fine with my PET scans or CTs. It’s been a lot. Did the whole thing, lost my hair. But I’m going on seven years, and I’ve been clear for at least two years.

VIVO: You said that you found the lump. Before that, had you had mammograms every year? 

Interviewee: Since my mom’s history‚Äîshe passed of pancreatic cancer in ’05, 20 years after her breast cancer diagnosis‚ÄîI was always diligent. She made sure I started mammograms in about 2000, so about age 35, which seemed like it was a little earlier than most people because of my family history.

I was right on top of it, but somehow I don’t know what happened. I had one at the end of the year and then I think another year passed, and then I’m thinking, “Oh my gosh.” So it probably went 16, 18 months, and then I felt the lump and thought, “I’m going in.” It seems like it came out of nowhere, but I know it didn’t. It developed somewhere within those 16 months because that’s the only lapse there really was.

VIVO: Did you give yourself regular self-exams? Was that a normal thing for you or did you just happen upon it? 

Interviewee: I don’t know if I did it monthly, but I was really in tune with my body because I turned 50 in the year prior, and I put more emphasis on my health. I ran a 5K, and I exercised, and I was at a weight I liked, and everything seemed to be going well.

Since I was doing exercise, the reason I found it in a way, which I would’ve found it eventually, was because I had started a new exercise where there was push-ups and bicep things, and I thought my chest hurt. I’m thinking, “Is it muscular?” And then in the meantime, my son’s going to be a freshman in college, so we’re all wrapped up in getting him ready to go to the dorm. But I did go, I made the appointment.

What I didn’t know is that if you feel a lump, you can’t have a regular mammogram. I got there, and I put on the sheet, “I think I found a lump.” And she goes, “Oh, no, you can’t. You need to come back. We’ve got to do diagnostic and ultrasound.” So that was the messaging. It all happened quickly – biopsy and all that. It was crazy. It was really crazy.

VIVO: Do you know what kind of breast cancer you were diagnosed with?

Interviewee: It was the ductal. It’s quite a story because my mom had passed, and then my dad had passed too, but not of cancer, so I was doing my thing, but I was feeling good about myself. I had the biopsy. It came back hormone positive. They knew that much, but the HER-2 protein came back equivocal. They knew it was breast cancer, but then that HER-2 protein came back equivocal.

Then I went about, they did other scans and everything, and I talked to a surgeon, but I wanted a second opinion. We went down to Charleston, and I had a great doctor there. They have a breast cancer center there that Columbia doesn’t have. I was in the health field before. I was in orthopedics, so I don’t go by a wing and a prayer. We researched, and we found a good doctor.

I had my lumpectomy, and then she sent me back here to see an oncologist. That HER-2 kept coming back equivocal, and HER-2 requires an infusion drug, so you either have to know you have it or you don’t. I think they sent it off again, and I found an oncologist here.

The interesting thing was after my surgery, when we started talking about treatment, I asked to have a CT of my abdomen. I didn’t feel anything, but with my mom’s pancreatic cancer, I said I’d feel better knowing. My oncologist kept telling me nothing would be found, and I had to twist his arm to do it. I know I’m talking your ear off, but this is how my story’s different.

I interrupted the initial care because I said, “I’m getting a second opinion.” Then I loved my surgeon. She did a great job, and my lymph nodes were clear, so she thought I was early stage. But when I saw the oncologist and kept asking for the CT, he kept saying, “Insurance won’t cover it,” and I said, “I don’t care if I have to pay for it. Can you do a CT of my abdomen?” He said, “They’re not going to find anything,” but darned if the liver came back positive. So he had to call me and tell me that.

It was almost amusing after a while, but now it’s metastatic. You’re stage four, and you freak out for two years. I had to do the chemo, and the liver tissue came back HER-2 positive. So that answered my question about the HER-2 status.

After that, they put in my port, and I was starting treatment, and I said, “I’m going for another second opinion.” I went to Cancer Treatment Centers of America in Atlanta, loved it, and they’re now City of Hope. I never looked back, and they’ve done fine. They never did surgery on the liver‚Äîit cleared with treatment. But it took a while. They never stated I was stable or clear until at least four years in.

VIVO: Wow, that’s incredible. You took ahold of your own health and did it.¬†

Interviewee: I know. Sometimes things come over you, but I try to tell my friends, especially if their parents are elderly, “You have got to be an advocate for yourself.” I’d still do it in another situation.

I go down Monday for treatment, and now seven years in, I had an oncologist who said, because I was doing Herceptin and Perjeta for over five years and they were doing the circulating tumor DNA tests that were zero, they’re confident that I’m not cured, but there’s no evidence of active disease. I’m careful. I don’t go around saying I’m in remission.

Now instead of going every three weeks, about a year ago I went to four weeks, and now I’m at six weeks. There’s no studies that talk about going off Herceptin. I think they’re in development now – there’s a “stop HER-2” study, but I dropped the Perjeta. I’m really only on one infusion drug and my hormone blocker. So that’s my story.

You do have to take charge. Maybe because I worked for doctors, but I never put all my trust in them. You’ve got to trust your gut, and you’ve got to trust what you’re reading. Not that it’s all Google.

VIVO: Do you know what chemos you were put on?

Interviewee: I started with Taxotere, Herceptin, and Perjeta. They didn’t do Carboplatin; they said they save that for younger or early stage patients. I was happy with that. I did six rounds. It wasn’t fun, but I didn’t do too bad. I didn’t throw up. Losing the hair stunk.

That was six rounds, and then I was scanned throughout, and they kept saying, “We see improvement.” It wasn’t like some people who get out and they’re saying, “Hey, it’s all gone.” I didn’t have that. They were more gradual about it.

I get scans every three months and an ECHO every three months for the Herceptin. The nice thing about that facility is they fly me down. I drive when I want, but I’m flying Monday. They put you up in a hotel. It was so much better than the local hospital. I already had bills from the hospital here for whatever scans and biopsy. I can’t imagine being monthly at a cancer center and being bothered with bills ‚Äî they don’t hound me. They don’t bother me with bills unless I owe something.

I think their idea is to take stress off the patient. They also have integrative care. I see a naturopath who put me on supplements. I go to a chiropractor there. I can’t rave about it enough. City of Hope bought it out, but I think they’re maintaining what was working. They offer chaplain services too ‚Äî there’s nothing like that in my town.

VIVO : When you see the naturopath, what do they say? What kind of advice are you given from them knowing that they’re employed by the same place?

Interviewee: That was important to me too because it wasn’t like I was going to go a natural route. I knew I had to do chemo, but it fell into place. During Taxotere, which was more trying, she gave me something for mouth sores. She gave me a certain regimen of probably four or five things. I took turmeric, I took ashwagandha for stress, and I kept those up until we moved to other things because then I started getting neuropathy in my fingers. Then we tried alpha lipoic acid, and we tried B12, but she always has something.

And then aside from any side effects, she wants me to have good sleep, which I don’t do too well, but she keeps encouraging me and tells me things to try. I could have reflux or something, anything that would come from the treatment. She’s really good. I see her most times I go, and the chiropractor helped too. It really was an all-around approach, and still is, but it’s all under one place. I get the scans there too and get the answers the next day.

I know people don’t always have the means to go out of town, but they really do make it as easy as they can for you.

VIVO: So you did the chemo. How often did you do that? You said there were six cycles, but I know for me each cycle was two treatments. So did you do six total treatments or six cycles?

Interviewee: This was a 21-day cycle, so you got them every 21 days for six cycles. Of course, I wanted to do four, but standard is six. I started in January and went into April, if not May. Then they give you a little break, not from the Herceptin and Perjeta, but before they start the anti-hormone pill.

When you spoke of radiation, normally it’s lumpectomy then radiation, but I had a big gap of time after my lumpectomy figuring out the other stuff, finding out I’m stage four. I saw the radiation oncologist there, and she cleared it up for me.

Any questions I had about radiation‚Äîthat’s only for the one place where the tumor was. They’re not radiating your whole body. That’s really the standard for that. It might prevent recurrence in that breast. But I thought, “I don’t want to put myself through more.” I’d come out of chemo. I could have done radiation. I know most people with early-stage cancer do radiation for sure, but I get checked every few months. I’m still on my hormone pill, anti-hormone pill, which has its own issues‚Äîit threw me into menopause with all that weight gain stuff.

VIVO: Was there a time that was low, or do you feel like you powered through everything and were real positive through the whole process?

Interviewee: I’m working on some things now. I had a therapist or counselor prior to all this because on top of losing my parents, we also had our house burned down. I’d been going to counseling for probably a decade before all this. I knew her well. I didn’t have to seek out someone new.

Now, I don’t know if she can help me with everything. I tend to treat things like a business a little bit. I’m a first-born, so I feel like I’m responsible. I’m going to do it. And I might not dive deep into how I’m feeling, but my family was supportive. There wasn’t any upsets. We tried to keep it as normal as possible.

I was one who had a wig. My kids didn’t see me walking around with a bald head. I made choices, but I did continue through therapy. My therapist would say, “I can’t believe it’s one thing after another with you.”

She trusted that I would push through, and I do, because I have that in me. I did it for my mom too. There’s probably stuff down there that could be worked through. You don’t know if you want to open the can of worms.

VIVO: When you lost your hair, you said that your kids never saw you with a bald head. Do you think wearing a wig was more to make other people comfortable or to make you comfortable? A mix of both? 

Interviewee: My problem is I always liked my hair, so more than anything, I was attached to it, and that was kind of a heartbreaker. But I was okay with it because I knew it was going to happen. It was never going to be a situation where I was going to wear a little bandana on my head. I thought, “I’m staying in control of the situation.” I think that’s what it was. I’m not a control freak, but I said if I have control over how I present myself, someone doesn’t look at me and say, “Oh my gosh, she must be going through cancer.” You know you do it when you see someone.

I tried to maintain normalcy. I don’t have a huge life, so it’s not like I’m out and about much. I was working part-time, but the company sold right before I got diagnosed. With all the appointments, it would’ve been hard to keep working.

I settled in and had two wigs that I’d switch up, and sometimes wore a baseball cap. I swear to God, I don’t think anybody noticed. My kids were in band. I was at band functions. No one ever said, “Is that your hair?” So I got through that, and that was a big accomplishment. And then it’s frustrating growing back because you don’t know what you’re going to get. And you panic because I’ll still have whole strands fall out sometimes. It’s weaker now I think. It’s not as strong.

Another challenges was trying to tune out people telling me what I should be doing‚Äîthe ones that didn’t know‚Äîbut luckily people didn’t do that to me. Or they were too scared to say anything because I maintained my weight. I wasn’t stomach-sick. The drugs and whatever the naturopath was giving me, I felt pretty decent. I feel like there wasn’t much I couldn’t do. I wasn’t hiking mountains, but I had more determination then.

Now I catch myself thinking, “My gosh, I might not even have been here. What am I doing laying around the house?” You get that guilt. But I’ve been struggling with what I should do with the information I have. I care about people, but I’m not sure I have the energy to start a fun run. I think, what can I do? In a way you feel like you got this for a reason and what am I doing with this information? I’m not helping people right now.

VIVO: You are right now, by the way.

Interviewee: Thank you. Some people do huge things. I thought if I could find something small-scale. I know so many people are suffering.

The other thing which is strange. You’re on a Facebook page with people that have what I have, and they’re having a terrible time. I don’t want to go on there and say how well I’m doing. But it’s encouraging to read about people who are seven years out. When I was two years out, I loved hearing from long-term survivors. I kept saying, “Maybe I’ll make it to 60.” And now I can say, “Maybe I’ll make it to 70.”

I thought I was a goner. I would have a notebook and make notes about what I wanted arranged. It’s a terrible mind frame to be in because stage four has that connotation.

VIVO: You thought that that was kind of it, and that you would continue treatment. What was your end point?

Interviewee: I wanted to get to five years. When you read the old Google stats, they say there’s only a 30% chance of metastatic patients living five years. At the cancer center, they do a big five-year celebration and your name goes up on a wall. I thought, “I’m aiming for that.”

We could never plan a vacation six months out. It was weird, and we didn’t talk in front of the kids like that. I was hoping to see my kids graduate. Now I can hopefully see them get married. I’m a little calmer now than I was the first two years because my first oncologist wasn’t super positive, saying “We’re maintaining.” But then she left and I had a doctor who said, “Let’s start doing PET scans, and we can do this circulating DNA test.”

And then he started saying, “There’s nothing there right now.” I was thinking, “What?” It depends on the doctor, depends on the center. That’s why I feel like I have all this information I need to share somehow.

VIVO: Tell me more about the circulating DNA. Can you tell me about that? What do you know about it?

Interviewee: It’s fairly new and expensive, but somehow my cancer center covers it. I don’t get billed for it. It started with Guardant, and then Signatera got FDA approved. I think they take an old slice of your tumor, which they keep preserved, and send it in with your blood work. I have no idea how it works, but they can see if any circulating cancer cells are in your blood.

Some people will say, “They could be micro, micro, micro cells not detected.” But then you learn that everybody has cancer cells in their body, but the immune system chews them up. It’s one of the better tests.

When I started, I didn’t know anything about it. I was probably four years in before this doctor said, “Let’s do it.” Now I’m on my fourth oncologist there, which is not ideal, but they’re all top-notch. My current doctor is the one talking to me about deescalating treatment. I came off the Perjeta about a year and a half ago. I’d pushed scans out to four months‚ÄîI didn’t want to push them to six, which felt too much.

We started visits every six weeks instead of three. The first time we pushed to six weeks in August, I had a panic attack. Not a bad one, but I thought, “I should be there at the center. I wonder if two weeks makes a difference.” If something goes wrong, I’d feel it was my fault because I agreed. But I think I’m okay with six weeks now. It feels like you’re skipping one treatment.

VIVO: Is that how often you get the ctDNA done as well? Every six weeks?

Interviewee: No. I’ll base it on my last appointment because my doctor was proactive. She said, “Let’s do scans every four months.” And on the alternating visits, she had me getting the ctDNA about three times a year.

I had it done last month, in September. When I go next, I’ll find out if it’s still zero, which I hope. Then I’ll have scans in December. It’s either scans or the test. But that’s been a huge thing and a huge sense of relief for me. It makes a total difference.

I was worried about false negatives, but I see other people using it too. Some have results that show cancer, so I know if mine is zero while others are getting positive results, it must be accurate.

They used to do tumor markers probably every visit, but I think it’s CA-15-3 or something, there’s a number after it. It would always be under 13, which is normal. But they haven’t done that in a while, maybe because they’re doing the Signatera.

I’ve been poked and prodded. But I believe they’re giving me all the opportunities. I know locally here, they wouldn’t be doing Signatera or offering integrated care. You’d have to find your own chiropractor and everything else.

When I go on a Monday in December, I’ll have a PET scan and maybe an ECHO too. Tuesday morning when I see the doctor, I’ll find out everything. That’s what makes me mad about local care‚Äîsome women are waiting one to two weeks for results.

VIVO: What advice would you offer to somebody who hasn’t been diagnosed and needs screening, someone who needs to start doing self-exams, or for a survivor?

Interviewee: Be in tune with your body. Do all you can, because one in eight women get breast cancer. I know people who tell me they’re scared so they won’t go for mammograms. I say, “How would you know? You can’t be scared.” It’s a catch-22. Because of my mom’s history, I was always proactive. It wasn’t something I was going to shy away from. It wasn’t pleasant, but I went and did it and would’ve continued getting mammograms.

I do believe, especially with that part of the body, in many ways it will tell you if something’s wrong. Not always though.

It’s October, so it’s pink month. But metastatic breast cancer has a different color ribbon. I’ve learned that Susan G. Komen and those organizations only give about 4-5% to metastatic breast cancer research. They’re all about early screening, which is fine, but you don’t die of early breast cancer, and that is something I don’t think people hear enough.

VIVO: Thank you so much. Congratulations because you advocating for yourself has completely changed your course.

Participant Profile

• Gender and patient type: Female breast cancer patient (stage IV/metastatic)
• Geographic location: Outside Columbia, South Carolina
• Age: 59 years old
• Treatment experience: 7 years post-diagnosis (diagnosed 2017)
• Current status: No evidence of active disease for approximately 2 years
• Treatment setting: Cancer Treatment Centers of America (now City of Hope) in Atlanta
• Notable challenges: Metastasis to liver despite clear lymph nodes; equivocal HER2 test results requiring persistence to get proper diagnosis
• Key priorities: Maintaining treatment schedule while gradually deescalating; accessing integrative care alongside conventional treatment
• Family background: Mother had breast cancer; originally from upstate New York; married with two sons (now empty nester)
• Prior medical experience: Previously worked in healthcare (orthopedics)