Abigail’s Stage 4 Metastatic Breast Cancer Story

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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1st Symptoms and Testing

I love the Enneagram. It’s is a personality type [or] way of understanding motivations. I very much resonate with type 8, which is sometimes called the challenger. I tend to challenge systems and definitely have learned a lot in the last 20 years about being an advocate. It’s kind of in my DNA. If something is wrong, I have to fix it, which is challenging at times with the amount of energy I have during the day. 

Justice is something that’s very important to me. It’s probably why I ended up going to law school. My husband is black. He’s from Jamaica, so I’m understanding a whole lot more about the experience of people who are marginalized. That really pisses me off. I tend to get into the weeds with people about fixing those things.

Finding a lump in the breast

Then in January 2017, I felt a lump in my left breast. Because I was tandem nursing and pumping every 2 to 3 hours and had been doing that for 4 years, I was certainly very familiar with my breast tissue. But because of all of the nursing, I also had more tissue than I would normally. Even though the lump was relatively close to the surface, I didn’t really fully grasp what was going on.

I thought it was a clog and went to my lactation consultant. Interestingly enough, the cancer in my body happened in my breast exactly where I’d had clogs, and the same thing happened to my mom. The areas where the tumors were that they found when she had her DCIS diagnosis almost 20 years ago now were exactly in the places where she had clogs. 

We were also part of a milk-sharing organization, so we were able to share about 25,000 ounces during the 4 years that I was nursing and pumping. Ironically, the very first person that got milk from us was someone who had been diagnosed with breast cancer while pregnant. She literally had her baby and was wheeled into the chemo suite. She was unable to breastfeed, and everything just came full circle.

What happened at the lactation consultant?

She touched the area and said, “It’s probably nothing.” This is something that was consistent across the medical providers that I saw. “But I’d really like you to just go to your primary care physician and ask her.” 

I had actually picked a primary care physician who not only personally tandem breastfed her children, but also had an extra lactation certification. Again, there aren’t those doctors that treat you when you are nursing. It took a bit for me to find somebody, but I had. 

This was literally my second appointment with this particular doctor. She said, very similarly to the lactation consultant, “95% sure this is absolutely nothing, but since you’ve never had a mammogram…” Because of my mother’s history of cancer, she sent me for my very first mammogram.

Mammogram appointment

I went for that very first mammogram appointment. They were very unhappy with me because, of course, as soon as they squished my breast, milk went everywhere. The machine [was] covered in milk. They did a mammogram, and they did a diagnostic ultrasound.  

I got a primary care physician [right] after we got married. I’d never had a primary care physician. I went to urgent care if I had something serious, and I had my OB-GYN that I went to every year. I really just didn’t engage with the medical system all that much. Thank God I was healthy. 

My first introduction to medical things was the fertility experience, which was terrible because it was so emotional. It was invasive, and having vaginal ultrasounds every other day for weeks on end was so not fun.

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Breast Cancer Diagnosis

Testing Results

When did you realize this was something more serious?

April 8th of 2017 was when we found out it was breast cancer. I think then, we still thought [I would] go through treatment and be done. I had my mother’s experience to compare with. She is amazing and worked all the way through chemo and radiation and everything else. She had a double mastectomy and did all the things that you need to do. 

My mother still [has] no evidence of disease now, almost 20 years later. I had her experience to think about. We really thought in April of 2017 that it was going to be a situation where I went through treatment, and then we could put breast cancer in the rearview mirror. 

Being connected to other patients

We went into all of the appointments. I remember the radiation oncologist literally spent 2 hours with us, [and] the medical oncologist spent about an hour. All the doctors were so kind and caring, and it was a good introduction to something terrible. 

I had my lumpectomy. We decided on a lumpectomy versus a mastectomy. Legally, an insurance company is required to cover a mastectomy if the patient wants it, as well as reconstruction. No insurance company can refuse to cover those things. My doctor was like, “All of these options are yours.” 

She also connected me with a couple of her patients who had different surgeries, which I thought was amazing. I haven’t heard of other doctors doing this, but she connected me with somebody who had a lumpectomy, somebody who had a mastectomy, and somebody who had a double mastectomy. That was very helpful because I could compare and contrast their different experiences.

Preparing for the lumpectomy

I had my lumpectomy in June of 2017. It was pushed off a little bit because that particular surgery, there were only 2 plastic surgeons that knew how to do it with my surgeon, and I had to dry out my milk. My doctor handed me a paper with 2 or 3 things to do, and she said, “In about a week, you’ll have no more milk.” 

I had been nursing and pumping every 2 to 3 hours for 4 years straight, and it took a lot longer than 1 week for my milk to dry up. One of the things that they needed to do was do an MRI to be sure that there was no cancer in my right breast. We had to get the milk out of the way so those images would be effective and reliable.

Receiving the Diagnosis

When you received the diagnosis, what staging and details were you given?

My doctor was perfect for me because she was very direct. There wasn’t a whole lot of packaging or hemming and hawing. It was, “Okay, it came back. It’s breast cancer. It’s hormone positive, strongly hormone positive.” At that point, we didn’t have the HER2 status because they had to do the extra testing. 

Then they sent off the tumor cancer tissue from my lumpectomy to have genomic testing done. I talked about genetic testing. That’s your DNA, your blood, and what you get from your family. Genomic testing is to look at the characteristics of the cancer to see what kind of mutations it has, etc.

Oncotype test results

It’s called an Oncotype test. There’s Oncotype and MammaPrint. They’re basically the same thing, just 2 different companies. They’re able to score, based on your different markers, your risk of recurrence. 

My risk of recurrence came back in the gray area, which is super weird, knowing now that I was already stage 4 at that point. At the time, the gray area for me at my age was 27, and 25 to 30 was the gray area. That’s no longer the gray area. Now over 25 is recommended for chemo. They keep learning, which is so good. 

I had asked about the PET scan. He said, “It’s hard to get them approved by insurance, but we’ll do it if you want it.” He didn’t seem very concerned about doing scanning, so I was like, “Oh, okay,” and didn’t push it. I don’t not push it anymore, because I think my intuition was telling me we needed to get more information. 

I went in for the bone scan and the CT scan. It was a whole day at the hospital. I vividly remember having client consults, drafting pleadings, and doing all these things from the waiting area. Then we got the call June 22nd of 2017, and the nurse who called said, “You just need to come in. It doesn’t matter when. Just come.” 

I was in the middle of preparing for a hearing and was totally distracted. I called my husband and said, “I had a weird phone call. They’re not even making me make an appointment. You don’t need to go. I’m sure it’s nothing.” 

Thank God my husband had the presence of mind, because of his experiences with his father. [He said], “Doctors don’t say, ‘Just come whenever you can get here. We’ll see you.'” 

Receiving the stage 4 diagnosis

My husband took me to the last hearing that I conducted as a practicing attorney, and I won. Of course, you have to include that. My husband took me to the hearing, and then we drove up to my doctor’s office.

What’s funny is I didn’t really like the medical oncologist the first time we met him. He has a daughter that’s very close to my age, and he was just very paternalistic. [It was different] going from my breast surgeon, who was like, “Let’s talk about it. All the details. Let’s make the best decision.” 

He was very like, “You’re going to do X; you’re going to do Y.” I kind of bristled at that. It’s kind of like, “What, you’re going to tell me what to do?” In hindsight, he was the perfect doctor to have broken that news to us. 

He brought us back into his office. He put his hand on my knee. We were talking about how breast cancer was going to be something that was going to be an experience, a season, and you would die of something else. He said, “You’re stage 4. This is going to kill you.” 

That was extremely sobering. It was totally out of the blue. Totally not expecting that. I had a 5-centimeter tumor in the middle of my right femur. My breast tumor was only about 2.4 centimeters. It was bigger in my leg than it was in my breast. They were worried that my bone was going to shatter. 

Of course, I tried to pin him down onto, “What is the timeline? I get 10 years, right?” He’s like, “Well, some people do.” It was a very good balance of hope and reality. He was going to manage me being on tamoxifen, which is typically a hormonal medication that you’re on after you finish chemotherapy when you have early-stage breast cancer. He said, “Now, we’re going to be talking about totally different medications.”

How did you process your second diagnosis?

I think partly because of my training and partly because of my personality, I tend to think about something first, and then the feelings come later. At the time, it was much more of a project management type of, “Okay, how are we going to fit all this in?” I was thinking much more about the nitty-gritty. “This was going to be the plan, but now that’s all blown out of the water.” 

It was a lot of trying to assimilate and understand what’s going to happen now. I vividly remember he sent in his social worker, who was 22, right out of college, and she was trying to talk to us about how we felt about things. We were both just like, “Now is not the time. We’re overwhelmed with all of this.” 

We got into the car. I told my husband, “I can’t drive. You have to drive.” My brain was just whirling, and we both cried all the way home. A lot of it was about the kids. A lot of it was that they’re going to lose their mom at such a young age. One of my first thoughts was, “I have to protect them against the crazy stepmother that my husband is going to marry, this other woman, and there’s going to be other kids.”

»MORE: Patients share how they processed a cancer diagnosis

[I] sought out mental health treatment and got on medication pretty much right away to manage anxiety. There was depression, those dark nights of the soul, when you are just thinking about the end of your life. That’s what I obsessed over for the first couple of weeks.

Getting all those different pieces of support. My parents came up. We lived in Orlando when I was diagnosed. My parents were in Miami, so they came up. My mom was with me in the hospital, spending the night after surgeries.

Reacting to the X-ray

One of the nurses wouldn’t make eye contact with me through the whole appointment. She told me later that it was because, of course, I had started chemo. I was bald. I did not look healthy. She told me later that it was just really triggering for her because her sister had just been diagnosed with cancer. She made me this bracelet. It was very kind. 

I did not fully connect with how serious it was really until that moment. I didn’t fully understand even some of the conversations that were going on among my doctors. One of my friends actually saw my radiation oncologist recently, and she expressed some amount of surprise that I was still alive. 

I think [it was because of] the disease load. It was in every bone, and every bone was liberally sprinkled with cancer: all through my spine, it was in [my humeri], but my legs were the worst. Obviously, you need your femurs to walk and to remain upright. Those are kind of important bones. That was the focus. 

I found out on a Friday about my diagnosis. The following Friday, I was in surgery to have the titanium rods put in both femurs. We decided to finish the Adriamycin and Cytoxan, save the Taxol for later, and then we scheduled my hysterectomy, too.

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Processing Cancer and Finding Community

Processing the Diagnosis

When did you allow yourself to grieve?

There’s a lot of grief when it comes to any cancer diagnosis. I think that you go from being a healthy person generally. It’s a betrayal, right? Your body has betrayed you in a lot of ways. I think that really resonated with me a lot at the beginning. 

I did what a lot of people tell you not to do, which is I went online. Certainly there was Google, but then through some of the ladies that I talked to that my surgeon had sent me to — and my mom because she had been through treatment as well — [I found] different support groups and other people to talk to.  

[There was] one thing that was extremely traumatizing. One of the support groups I joined probably 2 or 3 weeks after I found out I was stage 4, 3 of their members died in the week that I joined. That was so sobering and overwhelming. I don’t know that I really did process things very well initially. It was not until things died down a little bit. 

Coping with cancer and loss

Finding the coping skills and finding the ability to handle that, I’m still not good at it. It’s been 5 years. I’m still not good at it, but I have more coping skills now. A lot of it has to do with these key people that have the same disease that we can really just talk frankly about what’s going on. Support groups where that’s facilitated [have] helped, in addition to the direct connection. 

I started CaringBridge sites pretty early on just to keep everybody informed. Things were changing every day, and that made a lot of sense to keep everybody informed that way. I think writing and talking with other people have really been the best things.

All of them understand. It seems like the intensity happens at night. The amount of times that I’ve texted friends of mine in the MBC community — I’m always thankful for people in different time zones because it’s not the middle of the night for them. 

[I’m thankful for] being able to talk things through and just really say that this what I’m feeling at this moment instead of stuffing it. I was a very good stuffer before this. Again, coping mechanisms that do not work for a terminal diagnosis. Stuffing is not good. That’s not a good thing.

Parenting while dealing with cancer

Making memories with your children

Both of them are very active children. They’re both boys. I was always very active with them prior to my diagnosis. That was a huge change because I was on crutches and then a walker and wheelchair, especially after my leg surgery. 

Energy is something that is in short supply when you’re in treatment and radiation. It makes you so tired as well.. I had radiation to my legs and to my back. [I had] to adjust to not being active with them, but finding other times of connection with them. 

All the parenting stuff talks about how you’re not going to be in your children’s memories if you’re not in their lives today. Because I’ve had the ability to have more time with them, because I’m not working and running around and having a million to-do’s, I’ve been able to be a lot more intentional in spending individual time with them, putting the electronics away. 

I do a date with each of them once a week, where we go out. It’s usually for ice cream because of course they want ice cream, although my older son is now quite obsessed with the French bakery and croissants and lava cakes and all of that. 

Every week, and now we’ve done this for years, I’ve taken them out and just had an individual conversation with them about whatever it is that comes to their mind. I’m just trying to be very intentional about being in the moment with them, about listening to them, trying to consider very carefully the lessons that I want to pass on to them. I also have memory boxes for them. 

For so many of my friends in the MBC community, once the cancer gets out of control, it’s a very short time period between finding out there are no more treatments and death. We typically don’t get a lot of time in hospice. I have friends in the last month that passed away, and they literally went out of the hospital into home hospice and died the next day. That is the trajectory of this disease. 

This is my legal training. I try to look at the worst possible thing that could happen, plan for that, and then everything else is taken care of. We tried to look at those kinds of things unflinchingly, but saying the things that you need to get off of your heart, I think, is one of the big things that we’ve tried to do with the kids. 

I’ve just tried to do with relationships in general because you don’t know what’s going to happen. I think those of us dealing with a serious illness, we have a little bit more of a sense of that, just because we have a serious diagnosis. Somebody can die at any point.

I love the spoon theory, where we wake up with less energy or less spoons than a healthy person. We can’t just drink a cup of coffee and get more energy. Once the energy is gone, it is gone.

For me, anyway, the idea of advocacy has always been something that permeated my entire life. I think I identified with helping people and advocating for people. That sort of thing is a big part of who I am. When you are deprived of that purpose or the thing that gave your life purpose, then you start looking around and saying, “What am I supposed to do now?” 

For me, it was a lot of boredom. You can only read so many books and watch so many videos or movies on Netflix. I very quickly found that sense of restlessness. Certainly, I also had a lot of physical impairments, having to really work at getting mobile and being able to walk better. At the beginning, there are cognitive deficits that come about because of chemo. 

That’s a huge adjustment from being very high functioning. I think that those of us who go from a 90-miles-an-hour career to a cancer diagnosis, that’s a much bigger change than those people who are either already retired or kind of winding down in terms of the things that they’re doing. Plus, I have young kids, versus people who have adult children. 

Being diagnosed with cancer at a young age

I think the younger breast cancer experience is very different. I think that a lot of hospital systems and survivorship clinics don’t often remember that it is very different for us. That has been a bone of contention between myself and every single one of my doctors about how the general rule just doesn’t apply to me. You can’t just make an appointment for me during school pickup, because DCF gets a little upset if I leave my children at school. A lot of that has been something that I’ve had to educate people about. 

Social media has allowed me to connect with other younger women with breast cancer, because our experience is so different. We’re a minority still, but the under-40 population is the only segment of the population where diagnoses of breast cancer are growing and continuing to grow. In all other segments of age ranges, it’s declining. I don’t know why that is.

In some ways, it’s kind of a double-edged sword, but it’s kind of good that more of us are educating our doctors because I think they will be more sensitive to our experiences. It’s obviously a terrible thing to be diagnosed at a young age with something so serious. 

Community

The importance of finding support and community

First, let me talk about finding people. Most cancer centers and doctor’s offices have either a support group that’s managed by a social worker or peer support groups. COVID changed a lot of that in terms of in-person groups, although I still think that meeting with people in person is so very important. 

Social media has become a really good way of connecting to people that have a similar disease experience. Even the people who don’t have children, I find that sometimes I can’t even connect with them as much. Yes, we can connect on the disease level or on health care experiences and insurance. But when it comes to the lived experience, the people who have young kids are probably the people that I end up connecting to the most. 

Making deep connections in the MBC community

Acute vs. chronic trauma

I have continued to be connected to people who don’t have cancer, but the vast majority of the people who have stuck around are the people who’ve been through trauma themselves. We have a great group of friends from Miami, where we lived for a bit, where each of them has a child with a very serious diagnosis, whether it’s autism or strokes or other syndromes. 

They get on a different level what it’s like to be in a trauma. [It’s not like] you get a diagnosis, you go through treatment, and maybe you’ve got some side effects that last. I don’t want to discount the fact that there are side effects that last after chemo. The people who are in the trauma for life, you’re in that trauma over and over and over again for the rest of your life. There’s a sense of community, and there’s a sense of connection. There’s a sense of going deep really fast that happens in no other area. 

You remember the emotions. You remember the connections with these people or with people that have made an impact on you.

Disenfranchised grief

Some of these people I’ve never even met in person, which is a weird thing and does lead to some of the concept of disenfranchised grief, where it’s not normal or mainstream grief. You talk a lot about miscarriages or the death of a pet or somebody you’ve never met online that you’re grieving for. There aren’t great grief rituals in those contexts. You can’t necessarily go to a funeral and have the expected support and things that would happen [if] you lost your parent.

My husband just lost his father, so we just went through this. It’s that sense of being disconnected at that last piece so that you don’t get a chance to do the grief rituals. A lot of families do their funeral. It’s not necessarily public, where they invite people from the community to attend those things. It’s weird, and it’s a strange, great space to be in. That’s something that we talk a lot about, just developing grief rituals that help us. 

There are 3 deaths. One is when your physical body ceases to function, the second is when your physical body is buried, and the third death is when people stop saying your name.

What do you feel when you are holding the rocks with their names?

I remember them. I remember the times that we had together. There’s that saying that people don’t remember what you said, but they remember how you made them feel. You remember the emotions. You remember the connections with these people or with people that have made an impact on you. 

One of the things that we talk about our kids quite a bit about is when they’ve had different experiences with different people — especially the ones that we’ve lost, like my husband’s father — we talk about that person. I have learned over time to not stuff (because that was one of my coping mechanisms before cancer), but talk about the people. 

On Twitter and other places on social media, we talk about these people a lot. I still tag people who have passed in some of my posts when we’re talking about various things that remind us of that person. In our support groups, we talk about these people. 

I don’t remember what tradition it’s in, but I read somewhere that there are 3 deaths. One is when your physical body ceases to function, the second is when your physical body is buried, and the third death is when people stop saying your name. I think one of the things that we do in our community for each other is that we say each other’s names.

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Undergoing Treatment

Different Treatment Options

What were your side effects from treatment, and how did you manage them?

The good thing for me was that going through Adriamycin, kind of the big chemo, meant that I could stay on targeted therapy for 4 and a half years. My first line of treatment in 2017 was Ibrance, which was approved by the FDA in 2015. I was able to be on a medication that had just recently been approved by the FDA, which is huge. 

That line or that class of drugs, the CDK4/6 inhibitors, has really changed the landscape of breast cancer. Starting in 2015 with Ibrance, and then there’s now a fourth one that’s being added to that class. People are living a whole lot longer with far less side effects. My first line of treatment after I finished chemo was Ibrance and letrozole, and I was able to be on that for 2 years.

There were very low side effects. Most targeted therapy affects the bone marrow, so we had to watch for low white blood cells, or neutropenia. I was always immunocompromised and having to be careful. The main side effects were the blood counts and some fatigue. 

One thing that has been a huge part of that is participating in the GRASP poster sessions. GRASP stands for Guiding Scientists and Advocates to Scientific Partnerships. They pick the big posters or the significant posters. I’m talking [about] an actual poster, a gigantic thing that’s full of words and really, really confusing graphs. 

We have these small groups, and it’s all on Zoom. After each of the big conferences, we have these small groups, where we talk to the poster author, we have a clinician there, and then we have patient advocates. We talk about what is happening in the science. 

Why is this thing important? When I went to the big San Antonio Breast Cancer Symposium in December of 2018, that’s when [everybody was all excited about] Piqray, which I eventually was able to be on.

The future of treatment

At the most recent conference for the American Society of Clinical Oncologists, there was a standing ovation at the news about a medication that just got approved by the FDA recently for treatment of HER2-low, and that’s [the] first one. In the last 5 years, I have seen these drugs that come [that are] the first in their class. 

They’re the first way of identifying and of attacking certain pathways in your body. It’s immunotherapy, where we’re teaching the body how to attack the cancer, which I think is the future. I think that’s the future of precision medicine, teaching our body how to deal with it versus having to stay on this treadmill of medications. 

Being in the room and hearing about these things and just hearing the excitement in terms of that. San Antonio was like 40,000 people that come to this from all over the world. These people have made breast cancer their life, their everything. They are in the lab 24/7 trying to figure these things out. 

One of the really key things that has given me a lot of hope is that there are all these really, really, really smart people who are giving their lives to figure this out, for one reason or another. For most of them, it’s not a profession. It is their life. Seeing that dedication and seeing that energy put towards finding medications…  

Unfortunately, I think breast cancer is too complicated to find a cure, but we are getting so much better at treating different subtypes. People are living so much longer. Like I said, the CDK4/6 inhibitors really changed the landscape. That’s the first line of treatment that everybody gets now, a CDK4/6 inhibitor almost exclusively. 

The importance of clinical trials

It’s still only about 3 to 5% of us that participate in trials. One area where I try to educate people a lot is the only way that we will have more medication is if people participate in trials. Trials are not for the end. It’s not for when there’s nothing else. I’ve already participated in 4 trials, and none of them have been about medication. 

It’s all been about improving algorithms to look at liquid biopsies, where we can see things in the blood without having to look at a soft tissue met. Actually, the very first genomic testing I had, which was looking at the mutations that the cancer had acquired, was done through a study. 

It’s so important that we participate in this research for the scientists to be able to discover and understand things. The fact that we enroll so few minority populations in these trials means that they’re only testing stuff on middle-aged white women. I am a middle-aged white woman, so I’m happy that they’re testing things on something that most likely would work for me. 

But then how do we know if it is going to work for somebody who’s from the islands or somebody who’s from Africa or somebody who’s from an Asian country? It’s so hard for scientists to be able to tease out all the different specifics about our bodies without having people to test it on.

Using genomic testing to plan for progression

One of the things that came up on my recent genomic testing is that the cancer has acquired the PD-L1 somatic mutation, which is an indication of sensitivity to immunotherapy. This is the knowledge that the doctors have [to use] to then build out options. I always insist that my doctors give me plan A, B, C, D, E, F, G, H, all the way down the alphabet, because I want to know all the different things. 

When there’s the progression and you have to change the medication, if you haven’t already selected or pre-selected some options, it’s chaos. You’re overwhelmed, and you’re having to make really big decisions. I like to make sure that I have the list ready. If there’s a big progression, we’re going to go this way. If there’s a more minor progression, we’re going to go that way. 

That genomic testing can give doctors the building blocks to be able to put together a treatment plan. That’s the science part. I’ve also been so blessed to be with doctors who have been doing this for so long that their clinical knowledge, their gut, because they’ve just absorbed all this data for all these years — and we as individuals are not statistics — that they can look at us and draw on that experience. 

That’s what I call the art of practicing medicine. You have to have both. You have to have the scientific data, the scientific research, the peer-reviewed studies, and the understanding of what kind of side effects you might be experiencing when you’re going into something, But then you also have these doctors who have this more intuitive feel. 

There was a study on that particular combination, or an arm of a study on that particular combination, and no one was able to stay on that combination. I was on that combination for 2 and a half years. You don’t know how your body is going to respond until you try. Some people have no side effects on particular medication. 

Piqray is known to cause hyperglycemia, so I was on glucose drugs for the entire time that I was on Piqray. Not a super easy drug, but I got 2 and a half years off of that particular rather aggressive combination. I think one thing that I’ve done in my treatment is that I have not been afraid to try something that may or may not work.

This has been a huge labor of love in a lot of ways. I’m the only patient advocate on the panel. I think there were 12 or 15 doctors, endocrinologists and a medical oncologist. We had a pharmacist. That’s probably one of the most amazing things I’ve ever done, because I brought the patient experience to the table. 

Plus, I moderate a Facebook group for people on Piqray, and we have hundreds of people in the group. I was able to do some polling of the people in the group to bring some real-time data to these discussions. This is where patients can help educate, because all the doctors on this panel are all at major academic centers. The vast majority of people being treated for cancer are in rural settings, not a major academic center.

Some of the doctors that treat you in the community are not maybe a breast specialist. You may see an endocrinologist who’s not an oncology endocrinologist or [doesn’t have] some of that specific training or experience. 

The doctors didn’t know what to do, and that was such a huge issue for so many patients that Novartis put their money where their mouth is and invested in coming up with these guidelines [from] discussion and consensus among all the different specialties. 

Yes, I was very proud to participate in that, and part of it was because I was harassing Novartis about all the things that people were talking about in the group and referring them to the patient advocacy program. Their doctors were trying to figure things out. I think they finally said, “I think we need to give this person a job.”

Designing trials with patient input

The piece that I think needs to change is getting the patient advocates involved at the time of the design of the trial. So many times the trials are designed in such a way, whether it’s transportation or parking or having to be at the doctor 3 times a week. There are things that they design that make sense to them from a gathering data perspective. It’s just not livable. 

This idea is of having trials where you don’t have to go to one place or don’t have to go to the major academic center. Maybe there’s more places, or you can get blood work yourself and bring it. COVID has helped this, too. 

They’re becoming much more aware. There are things we can relax in terms of the structure that are not meaningful overall, but it means everything to the patient. That’s huge, getting the patients in at the beginning.

Because Herceptin was such a huge game changer, a lot of the research started looking at maybe that type. If you look at your cell, you’ve got receptors, and they’re like little antennae. They’re looking for the thing that will feed them. 

What Herceptin does is it blocks that receptor and says, “Nope, you can’t get in.” Once there’s something that blocks that receptor, it’s no longer able to help fuel the cancer or help the cancer proliferate. That is my very non-scientific explanation. 

Antibody-drug conjugates

Because Herceptin was such a game changer, there’s been a lot of people who have been starting to look at that thought process of targeting that particular receptor. Maybe that would be helpful [to focus on] the people who have a smaller expression of HER2, not quite to the 6 plus. That’s where Enhertu came from. 

Enhertu is an ADC, which is an [antibody]-drug conjugate. That’s the new class. The antibody-drug conjugates is the new thing that everybody is super excited about, because it is a chemotherapy in the sense that you get it through an IV, but it is targeted like an oral so that you theoretically don’t have so many of the side effects. It goes to the cancer versus just killing all the active cells. 

Adriamycin, taxane, Taxol and Abraxane kill all the good cells and the bad cells at the same time, anything that’s fast growing. My hair is growing back. I just finished Taxol here in May. That’s why you lose your hair, because your hair is a fast-growing area of your body. So is all the good bacteria in your gut. There are so many things. Your white blood cells and your bone marrow are affected because it just carpet bombs your body. 

Being able to be more targeted, you don’t have the same overall effect. Theoretically, you don’t have the terrible blood counts, and you don’t have all of the other side effects that come along with chemo, like nausea and everything else. 

I’m not saying Enhertu is an easy drug, because I know quite a few people who have really struggled on Enhertu. Everybody’s different, and you don’t know how your body is going to react until you’re on it.

Cumulative effect of treatment

When you’ve had multiple lines of treatment, your body just gets depleted. I’m on my fourth line of treatment right now in 5 years, and that’s partially because I had multiple progressions here recently and had to change medications quickly. Once your body has been what they call heavily pretreated, your body just doesn’t respond as well. 

Those of us who are younger, sometimes we’re able to handle some of the harsher medications. It’s a double-edged sword because our immune systems are actually better, and it takes a little while for your body to adjust to some of the immunosuppressive activity of some of the medications. 

We just did an amazing presentation from Paolo Tarantino, who is at Dana-Farber in Boston, on what HER2-low means. He did a whole hour and had these amazing slides. That is something that’s available through Project Life. I’m still wrapping my head around it. He talked for like 20 minutes, and my brain started hurting.

Reflections

What is your last message to others?

When I was practicing law, I always told my clients they brought the facts, I brought the law, and we couldn’t do the case by ourselves. We had to do it together. That’s the thing that I think we all have to look at with our team. We’re on the team, because our doctors have no idea what’s going on at home. 

They don’t live in our bodies. Many of the things that we deal with on a day-to-day basis, they had a day or an hour or a little bit of continuing education about. Really understanding that when we walk into our doctor’s office, we are there to be a partner with them. We need to be an active partner in that. 

My husband, as a minority, as a black man, he’s always more worried than I am about asking questions, speaking up and challenging the doctors. I obviously have no problem with that. I think that you don’t have to do it in an aggressive or in a challenging-type way, although sometimes I get that way with my doctors. 

»MORE: How to be a self-advocate as a patient

Understanding that they don’t know what they don’t know, that you know the things. You’re an expert in your body. You bring your body to the table. They bring the scientific knowledge, plus that experiential art piece. It doesn’t work if you’re not telling your doctor what’s going on and if you’re not saying, “That doesn’t work for me,” when they run over you, as so many doctors do.

Being an active part of the team

In our support groups, we often talk to each other about, “Ask your doctor this. Ask your doctor that.” I think a secondary thing would be making friends in the community who can help coach you on the questions that you’re not even seeing. It can be huge. 

There are all kinds of people where research advocacy is their lifeblood, their thing. They’re not doing this alone. The whole idea of no man is an island, right? We cannot do this thing by ourselves. As just a consumer, we can’t just receive what the doctors are saying. We have to be active in that discussion or in that partnership. 

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