Heather Gensler lives in Charlotte, NC and was a Medical Equipment Planner for a major hospital system in the Carolinas. She was diagnosed in 2015 with HER II Triple Positive at the age of 29 and found herself to be a patient of the very equipment that she planned for the hospitals. Heather was not taken seriously in her mid-twenties when she was complaining of her lump because insurance doesn’t pay for mammograms at that age. She is now very passionate about all women getting equal care because cancer does not discriminate. Not all is lost because she found that the cancer brought her closer to the Lord and is steadfast in her faith and therefore views it as a beautiful disaster.
Gwen Manchion is a mom to two young girls, a runner, a former physical therapist assistant and a lifelong learner. Despite being closely monitored as high risk for breast cancer, her cancer was not detected on MRI or mammogram and at age 44, she was diagnosed with stage 3 ER/PR positive, Her2 negative breast cancer. Initially limited to the left breast and axillary lymph nodes, Gwen underwent a standard chemotherapy regimen, and despite her body remaining free from detectable cancer, a brain MRI showed limited new areas of metastasis. Various systemic therapies and stereotactic radiation have controlled her disease since June 2021. Gwen is passionate about equal access to imaging, encouraging patients to self-advocate for diagnostic testing and making themselves heard in medicine.
Angela “Jersi” Baker was born and raised in northern New Jersey and now resides in Charlotte, North Carolina. She is the mother of one son, who is the light of her world. She was diagnosed with DCIS in 2003 and underwent a full mastectomy and reconstruction. In 2011, Jersi became metastatic and in 2021, she learned she had central nervous system metastasis. In 2015, Jersi founded a nonprofit organization named Angel in Disguise Inc. She considers Angel in Disguise Inc. her greatest accomplishment.
Background on Jersi
Yes, Angel in Disguise is six years old. I started her in 2015 when I decided I no longer needed to work. I needed to go on disability because my job wasn’t flexible. And I started handing out business cards, and I met someone that needed a ride. And after that, I was like, if she needs a ride, there’s more people that need these services and that’s how it started.
And I just enjoy – I have one lady – I call them VIDAS, which means, victorious, inspired, delicate angel survivors. And I have one lady that called me. She moved, she doesn’t live in my town anymore. She lives about an hour and a half away. And she said, “I saw you on TV,” and I was like, “that’s my girl!”
And she’s older than me, but she calls me Miss Angela. And she’s like, “Miss Angela, I sure appreciate everything you did for me.” She’s like, “you were so good to me.” And then she told me that they found a spot on her lung which made me really sad. And so she’s like they said, if there’s more than one spot, then I’m stage four.
But I thought about it and I’m like, it came back and it’s in your lung – you’re already stage four. So, you know, just the fact that they still call me and want to chit chat. It’s that, that makes my heart smile.
How have your symptoms, do you think leveled off now? Because I think you got some good news recently with your scans, if I’m not mistaken.
Yes. They said that everything was stable. So that was good news. Now my symptoms are just my hands, but I guess that’s from the chemo. They’re very tight and I’m left-handed but it’s hard to use both hands, but very hard to use my left hand.
And I do walk with the walker, but I think that, you know, I have a wheelchair in hell too, so I use that more.
You were actually one of the easiest patients that I’ve worked with because you took all the advice that I gave you. And it was really a pleasure to work with you, watch you really taking initiative to make these – I mean, I think second opinions are just an invaluable resource.
Yeah, because you know, my oncologist, they said something different from the second opinion people. But at the end of the day, she knew that I was going to do whatever I thought was best for me. And at the end of the day, they were all on the same page. So that was very helpful.
Yeah. When I was diagnosed, I did the same thing. I just kept getting more and more opinions and what I was really looking for was consensus. I wanted everybody to be on the same team and especially with any kind of central nervous system metastasis, it can be tricky. You know, it’s just you really need specialists to kind of come in and look at it. Not every local oncology center has neuro-oncologists there. And so who I was recommending are people that actually look at lepto cases quite frequently.
And so they can actually weigh in and make decisions about what might be your next treatment. And it seemed like all the doctors that we saw had agreed that for you, chemotherapy was the best option because you hadn’t received chemotherapy, any hardcore chemo. Right?
Ever, right. So I think that was where everybody felt pretty strongly. We really need to get some chemotherapy into your system. And like you said, you actually have stable disease now. So I think it’s been successful. I mean, you know, with metastatic disease, we often like to hope for stability.
We’d like to see regression. But I think stability is also a win. So I was really happy to hear that when I saw all of your reports on social media about how –
Yeah, so I’m going to actually probably follow up with all of them and say, you know, I’ve been on it since, what June? Yeah. June. And just to see what they’re thinking. I mean, if it’s not broke, don’t fix it, right?
Yes. But yeah, that’s the great thing about a second opinion is that now you’re kind of in their system. They know who you are…
And you can reach out to all of them and say, hey, here’s what my next – here’s where I stand. And they can weigh in. Now I’m curious, did you have any pushback from your local oncologist about getting a second opinion?
They would never do that.
Well, you’re a very tough, stubborn person. They can’t say no to you. But I think a lot of people are afraid to get second opinions because they’re afraid of offending their current doctors. Would you have any advice for anybody in that situation?
Do it, I mean, you should do it anyway because you shouldn’t just let, I mean, I had a second opinion when I was initially diagnosed. One said a lumpectomy, once said a mastectomy. And when I got diagnosed stage four, I kept my opinion. I mean, I didn’t mean to say I kept my opinion. I didn’t get a second opinion, but this time I did.
Yeah. Yeah, I think when it’s your life and your health, you don’t want to mess around. You want to make sure you got other people weighing in. And people have different expertise. And I think it’s nice to have multiple eyes on your case. So I’m glad that it was good – at least it was a good experience for you. I’m glad for that.
I was hoping we could find you a clinical trial. Unfortunately, that is something that’s lacking for CNS disease in general. We just don’t have many. But I’m really glad that the chemotherapy is keeping you stable. I was very happy to hear that.
Advice – NOTE: This video is on the Advice Section of the Website
Do you have anything else that you wanted to say? Anything at all, if you have, you know, advice or anything hopeful that you want to offer patients living with brain mets? I think you’ve already given us a lot of inspiration.
Stay faithful. I mean, cause my faith was dwindling, you know, find something to motivate you. And that’s the one thing – you know, even if I’m out doing stuff, good things, you know, and when I post about them, just to get the response and everybody cheering you on, and that’s motivation for me, you know. Nobody knows my dark days, but that’s motivation for me. So I appreciate all those kind words and, you know, that push to keep it going.
Tema/Topic: Experiencia del Paciente/Patient Experience
Flori Hendron is an artist and designer who was originally diagnosed with breast cancer in 1996, and metastatic breast cancer (MBC) in 2007. Flori developed an art program at Cedars-Sinai Hospital through their Survivorship Program, Expressions of Hope & Healing©, as a safe space for cancer survivors to reflect on their journey and connect with healing through the art expression process. Flori’s personal goals are clear: to make clinical trials less restrictive for the MBC community, especially for people living with active brain metastasis and/or leptomeningeal disease.
So I was originally diagnosed in 1996 – in the olden days. I was 38 years old. Then I was diagnosed Stage 4 in April of 2007. And then I switched doctors at the end of the year. And I had been pushing for a brain scan on deaf ears. So in February of 2008, with my new doctor, I was restaged and they found a single brain met.
Gamma Knife Procedure
So I was treated for that brain met, with a gamma knife procedure with the halo. I still have little dents from where it was screwed in my head. And looking back, it was one of the easiest procedures, because it was successful. So I went in at 7, I was home in my bed at 11 in the morning. And then, quiet in the brain mets until May of 2019.
So I was very fortunate in 2008, that that single gamma worked, and worked so well. Meanwhile, I was put on all the anti-HER2 therapies during that time. So as they became available, I added them in. It was not a typical way to go, but I was at a time in my life where I was focused on quality – quality of life.
So I was very fortunate. And then really asymptomatic for a lot of years, except for side effects from treatments. And then in May of 2019, like April/May, I started having symptoms. And my symptoms were random numbness on my right side. My right groin was feeling numb, my right leg. And I didn’t know what was going on. I started thinking maybe I had shingles cause I was itchy – cause it was all nerve-triggered.
So I went and saw my oncologist, who, I mean, I was still under her care all these years and she sent me for brain MRI, cervical MRI, thoracic lumbar – so my whole spine. And what came back were more brain mets and a spinal cord met up high at C2. So in my spinal cord, I had a tumor, probably the reason for all the numbness.
Surviving Beyond the Statistics
Flori was diagnosed with brain metastasis in February 2008.
It was the first time I asked for my prognosis. So, I felt surprised cause I already had metastatic cancer and brain mets. So now I have leptomeningeal disease, central nervous system disease. And I felt like – and then my prognosis, which my oncologist was so reluctant to give, but I really said like, I just need to know what is going to happen to me.
So she gave me about six months. She said 3 to 12, probably 6. So I took that in – wasn’t easy. And my kids and I kind of went through it together – they’re grown kids. And basically I got my ducks in a row, so I gave away my purses and some of my best jewelry to my daughter, and got my affairs in order.
And in the meantime, I was looking for clinical trials. So my oncologist only had one trial to send me to, which was for HER2+ brain mets and leptomeningeal disease. And it was a trial at City of Hope and it required a shunt, or a port, in my head. So, my kids were still in town. We went together.
I met with the trial doctor, filled out all the forms. I did not want to do the trial. I did not want a shunt in my head. I felt I’d been through enough. But, now there were my kids with big brown eyes just wanting me to be alive. So, I signed the forms.
Then, about a week later, I was told I was not a candidate according to the trial gurus. So I can’t say that I was unhappy, but I was surprised. Because it was literally the only trial I could find where the criteria included active brain mets, active leptomeningeal, et cetera.
Hope of Clinical Trials
I really see a clinical trial as an opportunity. I don’t see it as last-ditch, which is why I’ve been on them, and I’ve been on one in the past. What we know, or what we call standard of care, like your regular chemos and stuff that’s FDA approved – that is always available to us. And those drugs will always be there waiting.
Clinical trials – they may not always be available. They close, they finish enrollment. And what’s so important about the opportunity of trying a phase one clinical, is you might actually benefit from the drug. And you never know when you’re going to be on a trial with a breakaway drug. So yes, not a lot is known, but you are not a guinea pig. They know a lot about how that drug behaves before they enroll patients.
So they don’t enroll patients and then everybody dies. They enroll patients to do gentle dose escalations to find our safe dose. So you’re really more a partner in cutting edge science. And the care you receive on a clinical trial can be superior to your normal care because there are eyes on you all the time.
So think about every drug you’ve ever taken, Tylenol, Advil – just anything – aspirin, cold medicines. Every single drug in the drug store began in a clinical trial.
Finding a Clinical Trial
So there’s a lot of ways to find a trial. I’ve always found them myself, but not cause I have a secret trick. It’s straightforward, there are websites. Our website has a search engine. You can read tons on social media – in Facebook groups, on Twitter. Reading reports that come out of the big cancer conferences, like ASCO or San Antonio, or any of the international conferences. Because when there is a promising trial that’s working – that word spreads. The drug companies, they put it out there because it looks good to their shareholders. And more importantly, patients. We tell patients. So the patient network is amazing.
The trial I found, the first one I was on, called ZW25, I actually heard of through an online friend who lived in Canada and her doctor knew of this trial because it was a Canadian company. And he was sending all of his HER2+ patients to enroll in the trial. So she told me about it. And during that time period, I had decided I wanted a fresh eyes consult on my case.
Which is not at all an insult to our doctors. My doctor was super excited about it for me. And I went up to Stanford and I saw Dr. Mark Pegram, who’s one of the HER2 gurus. He talked to me about my case and then also two trials that he really liked. One of them was a ZW25. One of them was DS-8201. He told me that I’d be lucky to get on either of them and I should apply for both.
ZW25, also known as zanidatamab, is not approved for breast cancer patients with brain metastasis, but it is currently being investigated in clinical trials in the US and China for patients with HER2+ breast cancer. Patients with treated and/or stable brain metastasis are eligible to participate.
Enhertu, also known as DS-8201 or trastuzumab deruxtecan, was approved by the U.S. FDA for the treatment of patients with metastatic HER2+ breast cancer who have received two or more prior anti-HER2-based regimens in the metastatic setting. Enhertu is currently being investigated in several clinical trials globally across all continents for patients with HER2+ breast cancer and patients treated and/or stable brain metastasis are eligible to participate. There are even Enhertu clinical trials that require patients to have either brain metastasis or leptomeningeal disease.
Self Advocating for a Clinical Trial
So fast forward to 2019 and I’m told by City of Hope I’m not a candidate for the one trial I could find. So I wound up, I mean, I spent hours online searching. And this drug DS-8201. I’d been following it for a long time. It’s also FDA approved now and you probably know it by Enhertu.
So Enhertu, I knew that they were having incredible results. And I also knew the oncologist who was running most of the trials at UCLA. I mean, I knew of her. I had seen her also for a second opinion, a few years prior.
So I shot her an email and I just said, I’m in dire straits, here’s my little brief update. Do you have anything I would qualify for? And she emailed me right back. “I’m leaving the country, I have a 7:00 AM appointment tomorrow morning open. Can you come in? We can discuss.”
So even though I’m not a morning person, I definitely got there. And she brought up this trial that they were just opening. DS-8201, also known as Enhertu, with nivolumab. So that’s an immunotherapy drug for PD-L1, PD1, which I’m not, but anyway. I was mostly wanting that DS drug. And reading the inclusions and exclusions, I definitely did not fit the mold, but she really advocated for me. She had me rescanned and restaged from head to toe and try to find a way and get permission and get exceptions to get me into that trial. She was so confident that they would take me and she was fighting so hard to include me that she had me wash out, and washing out means you stop all treatment and get ready for your new treatment.
So it’s important to know that you can always ask for exceptions. And asking, it doesn’t hurt. The worst they could say is no. So in my case, we asked and they said, okay. During this time of washout – in my opinion, I was washed out for too long. And I wound up having another brain met show up. So we had to put the brakes on all the forms, all the enrollment, everything – screeching halt. And again, ask permission to get treated because it said stable brain mets. Well, once you’re treated, you can’t really see if you’re stable for months. It just takes a long time for the radiation to settle down, to see if the met has died. And a lot of times, dying cells look the same as growing cells. So I was freaking out like, I can’t wait three months, I’m going to have more brain mets.
I mean, just sending polite emails. Every email, polite as can be. But every day – pressure on, pressure on, squeaky wheel. And finally, they agreed. They would rescan me 10 days post-treatment of the brain met. And the other exception I got, right off the bat, I said, because they are local to LA and my treating facility is local – right off the bat, I said, I will only do brain stuff with my brain surgeon.
I’ve had a relationship with him since 2008. Yes. He started off as 13, he’s now a grown man, but he is my guy. And it’s gotta be apples to apples – I can’t start going to another facility with other opinions. So they made that exception and they allowed me 10 days post-scanner, I mean, post-SBRT, targeted brain radiation, 10 days to get a scan, just to prove no new mets. So it was a bit of a gray zone. We couldn’t say for sure, the old met was killed, but we could say no new mets. And so she enrolled me. I started that trial the day after Christmas in 2019.
And how long did you remain on that trial?
That was probably one of the hardest therapies I’ve ever done. I never recovered every infusion. So it was a three-week protocol and I would have an infusion and it took the most from me, but it did the most for me. So it kept me not just stable, but it got rid of so much disease for almost one whole year.
I tried during that entire year, so many different things to manage, nausea was my big thing. So, I mean, every month we would try either a different drug, a different combination of drugs. And again, the nurse practitioner and their team, their clinical trial team – they worked so hard. They got a lot of exceptions, permission from the sponsor to try to help my quality of life, so I could remain in the trial.
The sponsor invests a lot. By the time they have scanned you and run all your labs, pulled any biopsies, they’re heavily, monetarily invested. And so they want you to be able to stay in their trial. So they are willing to, you know, if it means approving another anti-nausea medication, they’re usually willing to do stuff to accommodate to keep us alive and relatively well.
Advice – NOTE: This video is on the Advice Section of the Website
Go with the flow, but I think it’s important to show that you’re so dedicated to your own survival and wellbeing. And that, yes, I understand you have to collect data, you have to make categories and rules and so forth. I totally understand the scientific process, I respect it.
But, there’s a “Flori survival process” and there’s a patient survival process. And that includes being feisty and kind of having that backbone to stand up for yourself. I recommend it. I think that it has served me very, very well. And many times, maybe I’m a bit of a pain in the neck, but I’m still here 14 and a half years later. And some of that is because, yeah, I self-advocate and I push.
Lianne Kraemer was a Pediatric Speech Language Pathologist before her stage 2 breast cancer diagnosis at age 37. Despite receiving aggressive treatment, her cancer returned as stage IV MBC at age 39. Lianne’s initial metastatic diagnosis was that of brain metastases only. Her medical team has utilized systemic therapies and radiation to manage her disease. Lianne’s experience living with active and progressing brain metastases and participating in multiple clinical trials has made her passionate about increasing patient participation and access to clinical trials.
Clinical Trials Part 1
I was diagnosed with early stage breast cancer in January of 2014 and I got all the appropriate treatment, and then was finished with my care. In June of 2016, I had some tingling in the right side of my face. So that symptom prompted an MRI, which showed that I had brain metastasis.
My oncologist did scans of the rest of my body because generally we don’t see brain mets going straight to the brain as a first site of metastasis. And especially in hormone-receptor-positive, but in any subtype, it’s not generally seen that way. So we expected to find disease in the body, but we did not. We did a bone scan and a CT and there was no evidence of disease anywhere else outside of the brain.
At the time, like I said, it was June 2016, it was just brain mets. And it’s funny to say “just” cause, you know, it’s weird what becomes a good thing. And I was grateful that there was no disease anywhere else. At the time, I think it was about 12 brain mets and I went to meet with the oncologist to develop a treatment plan.
And initially we were going to do whole-brain radiation. That was kind of the standard back then with that many mets. Actually I like being able to say “back then” – it’s been long enough that things have changed a little bit. And that not necessarily do we look at whole-brain radiation as the first thing for that many mets. Sometimes it’s needed.
But I was in the middle of simulation with the radiation oncologist when his phone rang and it was actually – so it was in the building – and it was actually the oncologist calling me. And so I got on the phone in that room and she said, “after you’re finished with him, come back upstairs. I want to talk to you a little bit about a clinical trial.”
So we’re talking within days of my metastatic diagnosis, days of finding out I have brain mets, so very new in understanding anything about brain mets and metastatic disease and how it’s treated. And, you know, my doctor kind of said, you know, there’s a really good chance that whole-brain radiation will just wipe the slate clean in your brain. And I think that’s kind of what we all want with metastatic disease. We just want them all gone and we want them gone now.
So when I went back upstairs and talked to the medical oncologist, she started talking about a clinical trial that they had open. And I was really confused. I held all of the misconceptions that really exist around clinical trials. I thought clinical trials were something that, you know, was a last ditch effort. I thought, you know, why would I trade a known treatment that, you know, they’re telling me is possibly going to make it all go away. For what was a specific brain mets trial – it was actually for the drug Verzenio, abemaciclib was its name before its branding. And it was obviously a systemic drug.
And so I was a little confused by all of that. And it kind of seemed counterintuitive to me to risk letting the metastasis in my brain grow by entering a clinical trial rather than just doing the whole-brain radiation. It just didn’t make sense to me.
But I spent some time, after, you know, talking to her about it and learning more about clinical trials. And, you know, what I learned is that everything that we ever do, ever, whether it was in your early stage diagnosis or a drug that’s in-treatment that you use later on, or whole-brain radiation even has been studied in a clinical trial and that what they’re studying is what they hope to be a better treatment than currently exists. So you’re looking at possibly the advancement to the newest and best drug possible.
My oncologist also explained that there’s a limited timeframe with clinical trials and while whole-brain radiation will always be there, there are only allowed certain people in a clinical trial. And that this particular trial had three arms. It was for melanoma, lung cancer and brain mets. And the lung cancer and the melanoma arm had already filled. So nobody else could get on that trial. And so while the breast cancer arm was still open, it could close up if I chose not to do it. And then, I wouldn’t be able to get on that drug and if it turned out to be a good drug, I would have to wait, possibly a long time, to have access to it.
So that was another thing that really helped me understand how clinical trials are advantageous to use. I also spoke a lot to other doctors that I’m connected with and just gained better understanding. And so I did decide to go with that clinical trial, and it turned out to be, in the course of my five years of treatment, it has been the best treatment for me. Nothing else has compared, no other drug or treatment has compared to how well I did on that, and for how long I was on it.
So I really look at that as kind of bonus time, especially at the time – it’s now FDA-approved, obviously, but, you know, it took a long time for it to get FDA-approved after I had already gone on it for trial. So, it was really a turning point in my treatment. And I understood that it’s better to do trials in the beginning because you can – once you have a number of treatments, you become, what they call, heavily pretreated, and that you’re more likely to be able to participate in a trial and not be excluded because you’re heavily pretreated in the beginning.
So it was, you know, a really great thing for me. Back after that trial was completed, I was like, what’s the next trial? I now want to do another trial. So I became a very big fan of clinical trials.
Clinical Trials Part 2
So I was a huge fan of clinical trials after my first experience. And, you know, in that process of it, I really liked the clinical trial setting. You were watched and monitored very carefully, even more so, I was told, than – I didn’t have any experience outside of that because it was my first line of treatment, but there’s lots of people meeting with me and following me and calling me and making sure that I was doing okay. And you’re really closely monitored for anything that’s going on and they’re very attentive to your needs.
And so my second line of treatment was also a clinical trial. It was specifically for brain mets, as well. And I actually know that I got the very last slot on that trial. That was a pretty … after having done my first trial where the conversation with a clinical oncologist, at that time, was like, you can miss out on a trial because they can fill. And so, I knew what drug we would do if I didn’t get on the trial, because I did have to wait to find out if I was admitted. And so, you know, that drug wasn’t going anywhere. It was always gonna be there. And whether this drug worked for me or not, that I was going to use on this clinical trial, was a systemic treatment option. I knew, regardless of getting on, that the drug that was the second choice was going to be there.
I did get on the trial and got the last slot, which was pretty amazing. And that trial worked for me for close to eight months. The interesting thing about that clinical trial is that years later, I asked my oncologist how that trial worked out. You know, was it moving along and how people were doing on it. And she actually said that it didn’t do well. The drug did not show that it met its end points. And so it didn’t continue.
But it actually worked well for me. I mean, eight months is eight months, and that drug was never approved. Women don’t have access to that drug and, you know, whether or not somebody else would do well or not do well, it doesn’t matter so much if it worked well for me. You know, again, I look at that as bonus time that’s been added to my life. Because then after that trial was completed, we went on to the next drug, which was actually Xeloda.
So if I hadn’t done that drug I would have started Xeloda eight months sooner. And so it’s definitely something I look at from a standpoint, scientifically, it’s very interesting how I performed on it and that it gave me that extra time. And I just learned that clinical trials are so beneficial from a standpoint of how they help me, can help, may help you as a patient. But also what they do from a standpoint of research and understanding that the faster we enroll trials, and get people to do them, the faster that drug can come to market, because until that clinical trial is filled, which can take six months to two years or three years, that just delays that drug getting approved, if it does show that it has good efficacy in the brain, if that’s what we’re looking at.
So it’s really important to participate in trials. It’s kinda like giving back, in a way. I look at it like the drugs, like Xeloda, at one point, was somebody’s drug that they were looking at in a clinical trial and thinking, do I want to do this? And then it became a standard of care drug. And now Verzenio is a standard of care for brain mets. So it’s really interesting how it comes full circle.
I started my treatment for metastatic brain mets with one oncologist. She was fantastic in that she had gotten me on a clinical trial that really made a difference in my care. You know, right after my trial started, I needed some reassurance that I was moving in the right direction with it. And so I do have a background in being in healthcare, and recognize that all doctors have different areas that they like to focus on and specialties.
So I did some research and I found out who was doing the most in the brain mets space, both in taking care of patients and research. Her name kept reoccurring under current trials and past trials. And after feeling confident, I called up and got an appointment with her, and they were wonderful in fitting me in. I just needed somebody to confirm. You know, anybody who’s been diagnosed with brain mets, or metastatic disease in general, it’s terribly frightening. You’re dealing with your life and I think we all want to make sure that we’re getting the best care we possibly can. And so I just needed that confirmation that that clinical trial was the right direction. I knew that I could stop the clinical trial at any point if I wanted to.
So about a month after I started the clinical trial, I had a second opinion and really liked the physician. Her name is Dr. Nancy Lin, and really liked her a lot. And she confirmed that if she had been my treating oncologist, that that’s what she would have picked out for me as well. And that was really reassuring to hear her agree with the oncologist that I was seeing locally at the time. It gave me just the confidence I needed to continue on with that clinical trial. I was still within like six weeks of being diagnosed with metastatic disease. So everything is still very raw and new to me. So it was just really good to get that confirmation.
The plan at that time was that she would consult with my local oncologist and that they would touch base when needed. That absolutely took place and while we did that for a while, the one thing that I didn’t like about that situation is that I wasn’t included in those discussions, and it wasn’t because they purposely excluded me. It just was the way that it worked – the two doctors would chat and have a conversation about what was going on, and then the message was relayed to me.
And I was left with questions. You know, my oncologist didn’t specialize in brain mets. That’s not something that’s a negative. You don’t have to have a doctor that specializes in brain metastasis, but knowing that Dr. Lin was out there and, you know, I had additional questions that I wanted answered and didn’t really have access to her, I went back to her a second time. And at that point I decided just to switch my care to her.
So I could have kept it that she continued to consult with my local oncologist and that they worked as a team. But for me, I just, I needed more than that. So I did switch my care to her. And although I lived in one area – I lived in Chicago, actually at the time, I lived in St. Louis, I’ve kind of moved around a little bit, but I flew to see her for my scans and treatment in Boston. And was a lot – it is a lot of work. I still do it to this day. I’ve been doing it for nearly five years.
And that’s just what has worked for me. But it doesn’t mean you have to do that. You know, people use second opinions, like I said, to confirm that what they’re doing is what that oncologist would do because they have an expertise in it. And I think it’s a good sign when your oncologist is willing to work with somebody else. You know, the medical field, in general, is complex, no matter what disease you’re dealing with, and nobody has all the answers for everything. So the more input you get, in my opinion, the better.
So having, you know, a team approach where you’re having two oncologists bounce ideas off of each other, I think is a best case scenario. Especially with brain mets, it’s a really complicated area of the disease to treat. And to have somebody who, that’s their main focus, working with your oncologist, or if you choose that person being your oncologist – generally when you work with somebody who specializes in brain mets, like I do, they work in a team setting. So I’m seen by a medical oncologist, a radiation oncologist and her oncologist was later added when I needed that. And she knew that, Dr. Lin, knew to add that because of her experience with brain mets and that being her area of expertise. So that has worked out, in my needs, the best way it possibly can.
Advice to Patients (NOTE: This video is on the Advice Section of the website).
My one piece of advice to somebody who has been newly diagnosed with brain metastasis is, and I wish I had known this, is not to get too hung up on the statistics. It’s really easy to see those numbers and just let them swallow you whole. It can be so depressing. When I was diagnosed with brain mets in 2016, everything I read in research articles online said about 10 months to a year.
And so I immediately just kind of flew into this, like throwing things away and just really, it was terrible for me. And I know, I imagine most patients do that. You see this statistic and you picture yourself as that statistic. When I talked to my oncologist some more, it was more like two years, which still, you know, no matter what age you are, somebody telling you that your life expectancy is two years is devastating.
But there’s a couple of things to take into account with that. First of all, you are not a statistic. You’re not. So no matter what the statistics say, just remember that you are an individual person and that your body is going to react in a way that’s unique to yourself. Statistics are made up of averages of everybody, and there’s people that fall below that average, and people that fall above it. And you just never know how you’re gonna perform, or how the drugs are going to perform for you. I, kind of, initially was just so focused on that statistic that it swallowed me whole.
And then the longer that I went, and I kind of eased into things, I kind of functioned in two different lanes. I kind of describe it being in like two different lanes of traffic. And I focused on, okay, they’re saying two years and so I did the things that I needed to do – let’s say that was my life, that I would live two years. And I took care of those, you know, matters that you needed to take care of – I did a will and all that stuff. And it’s all very hard, but I did that stuff.
But then I lived in another lane, or another world, where I don’t want to say necessarily was hope or optimism, but just the possibility that wasn’t going to be my trajectory in life. And so I allowed myself to make plans and do things that were beyond the expectation of two years. Cause you just kind of have to work what’s best for you. But I can’t stress enough how important it is not to get stuck on those statistics that you see on paper, because you are not that.
And the other thing that you need to take into account for – and something that actually happened to me is that – the statistics, as they are at the moment you read them, are constantly changing. So when I looked at the statistics, they didn’t include a new drug that I went into clinical trial for and was later FDA-approved. And that impacted my life expectancy. And so don’t get hung up on what it says on that paper, because it’s not taking into account the new drugs that are constantly going into clinical trials, that are being FDA-approved.
And so the life expectancy you read, like, what I read online was 10 months, but what my doctor told me was two years. But here I am five years later. So I’m just telling you not to get hung up on those stats because it’s really easy to do and terrifying. And while you have to give those statistics some credibility, because they are there for a reason, don’t let yourself be defined by it.
Joan Mancuso has been living with metastatic breast cancer since 2007, having been originally diagnosed with early stage breast cancer in 2003. She was diagnosed with brain metastasis in 2008. For over a decade, Joan has been involved in many breast cancer projects. She has been a member of the planning committee for the Metastatic Breast Cancer Research Conference’s annual meeting as well as an advocate member of the Translational Breast Cancer Research Consortium with Abramson Cancer Center, University of Pennsylvania. Through SHARE Joan has been interviewed on talk radio to raise MBC awareness during Breast Cancer Awareness Month. She is currently an advocate member of ASCO and a member of their TAPUR Publications Group. Joan was recently invited by ASCO to assist in developing guidelines for biosimilars. She is a consumer reviewer for the Department of Defense Breast Cancer Research Program and has been an advocate on many scientific grant proposals at major cancer centers. Joan stepped down from employment in 2009. She was a special reports editor on a news desk for financial news.
Introduction & Background on Joan
My name is Joan Mancuso. I was diagnosed in 2003 with stage 2 HER2+ breast cancer. I was then diagnosed in 2007 with metastatic breast cancer, first to the lung, and then to the brain in 2008.
It however has been questionable as to whether my pathology has changed or not, and that can happen. And the question is now whether my pathology actually at some point changed to triple-negative breast cancer.
The metastasis was actually asymptomatic. I had already advanced to stage 4 breast cancer in 2007, after having been diagnosed with stage two in 2003. And after it had spread to my lung, I asked my oncologist whether or not it would be beneficial to have an annual brain MRI. And on the second MRI in 2008, the results showed roughly two and a half centimeter brain metastasis in my left frontal lobe.
Craniotomy & Radiation
After I was diagnosed with a brain metastasis, first of all, of course I was totally shocked. And I figured that this was going to be the end game now, since the breast cancer had spread to the brain. I saw two opinions and I had been a member of a website online and I knew about people getting brain metastases and many of them would have SRS, or stereotactic radiosurgery, which would be one shot to the tumor with radiation.
And when I went for the second opinion, they suggested that I actually have, or I would get more control, if I had a craniotomy followed by five targeted dosages of radiation. Or in this case, it was IMRT, or intensity-modulated radiation therapy, which would be when the radiation beam comes in, it really focuses on a target to minimize any radiation to the surrounding healthy tissue.
So the beam is modulated – the intensity of the beam is modulated. So needless to say, I was very upset. I wanted SRS and I couldn’t understand this. Most people were getting SRS. But they felt that I would have more control over having both the craniotomy followed by the targeted radiation. So that’s the decision I made in October 2008.
I had the craniotomy. It was very frightening. I felt that someone was going to be operating on my brain and we really don’t know what would happen afterwards, if I would come out of the anesthesia or even if I would come out of the anesthesia at all and what state I would be in. And as it turns out, it all worked out well. I was in the hospital for a few days. I was actually working full time at that time. And they wanted me to return to work in six weeks, but I actually went back to work in four weeks. However, I had to wait a little bit before they started the radiation to let the surgery continue to heal.
And so then what I was doing is – not really after work, but 4/4:30 in the afternoon, I was hopping on a bus and going 20 blocks from where I was working to the hospital that was going to give me the radiation. And I had to do that for five times.
It was a little bit problematic because the radiation oncologist, or that department, can change their mind in a heartbeat given recalibration of the machine or other patients and just their whole schedule. So I remember having to change my schedule a few times after I had told my manager that, you know, I was going to go this day, this day and this day. And that was kind of difficult.
But then I did the five shots of radiation and also that worked well. The radiation oncologist, he actually said that he gave me a prescription for steroids, but he said, I don’t really think that you’re going to need them. Another thing for my surgery was that I was not given anti-seizure medication, which the first opinion had recommended that I take an anti-seizure medication. But the place where I had the surgery said we don’t do that unless you’re already having seizure problems and, you know, you’re already on medication.
So, as I mentioned again, I was very frightened to have had, you know, the surgery and then afterwards, you know, they have to wait about a month or so before they start giving you additional brain MRIs to check out just exactly what’s going on in your brain and the tumor bed, because that’s actually what was radiated. The tumor was gone. And after a while it started to become enhanced again, and then it became questionable on the reports. The radiologist’s impression started to indicate that they couldn’t rule out regrow of the tumor. Of course, that’s very frightening because I was sort of – what does that mean?
And I was pressing that issue because the radiation oncologist felt like we’ll cross that bridge when we get there. But I don’t feel that way. I feel like I need plan A, B and C to determine just exactly what’s going on. And he suggests the area could actually be radiated again. Or maybe we could give you a whole brain radiation, which would be, of course, exactly what it is, radiating the whole brain, rather than just the part of it that had the brain metastasis.
But instead, I had by that time started to see both the radiologists and a radiation oncologist. The radiation oncologist recommended that I have a brain PET and it showed no activity. And so the oncologist, the neuro-oncologist, basically said that we can never say 100% with cancer, but we’re 99% sure that there’s nothing going on there. And that ended up being the case and I’ve never had another brain metastasis since then.
When I got home after the surgery I was home for the four weeks. And I remember I had 26 staples going from here, all the way down to here. And you can kind of see really a little bit, and I have this dent in my forehead here and also a dent in the side of my temple and that’s sort of a normal result of maybe having a frontal lobe craniotomy.
So I did have to go to have the staples out. And, of course, this area had been shaved. My hair had been shaved all the way down to this area. And I remember when I was actually in the hospital, my head was really wrapped up around. And it was very, very tight to kind of, I guess, hold back from maybe any swelling, but I’m not exactly sure. But I do know it had to be wrapped very tightly.
And so when I came home after about a week or so, I had to go in and I had to have the staples removed. There were 26 of them. And then, you know, the hair eventually grew back, but it has changed sort of the shape of my forehead, my hairline, up here. It’s no big deal. And you know, then I eventually went back to work. I didn’t take the steroids. There’s no pain involved. At least in my particular case. There’s no pain or discomfort that you might have from another surgery.
So when I was first diagnosed, for example, in 2007, with a single lung metastasis also found on screening, even though I was not stage 4. I had a VATS – video-assisted thoracic surgery, which is minimally invasive surgery. So of course there was a lot of discomfort there. So in comparison, there was no discomfort at all with the brain surgery, with the craniotomy.
Screening Post Surgery
After the surgery, I had, of course, follow ups to determine, you know, whether I would be developing anymore brain metastasis. And it started out initially as a brain MRI with contrast every three months. Then eventually went to four months. Then it went to maybe six months, nine months. And it went to a year. I was going just once a year. And I’ve been doing that for quite some time because I had the brain metastasis in 2008. And I would say it’s been at least seven or eight years. Everything has been, everything’s been okay.
Screening for Brain Metastasis
You know, I was screened for my brain metastasis. It turned out, of course, that it was asymptomatic. And when I was diagnosed with metastatic breast cancer in 2007, the brain metastasis was discovered in 2008 – about a year or so later. And, you know, there’s questions about whether it’s beneficial to screen patients who could potentially be at high risk or such as what I had, an asymptomatic tumor, to determine whether it’s worth screening.
And I’m very happy to know that a couple of years ago a study is now underway to use brain MRIs to screen for either high-risk stage 3, people with breast cancer, or those of us who were already diagnosed with stage 4 breast cancer, to determine whether it’s meaningful to actually screen in advance.
So of course there’s some primary and secondary end points of a trial, of a study, to determine whether it’s beneficial to do that. And I’m very happy that that trial got underway because I was originally diagnosed with HER2+ breast cancer. So I had a high probability of it – first of all, just spreading in general – and then also spreading to the brain.
I was very fortunate to have an oncologist who, when I had stage 2 and seven positive lymph nodes, was actually screening me every nine months, which again is not standard of care. And in 2007 they discovered a one centimeter lung metastasis in the apex, or the upper part of my left lung. And the question was not whether it was cancer, the question was whether it was primary lung cancer or secondary, or otherwise stage 4 breast cancer. And it was shown to be stage 4 breast cancer.
At that time, I was looking online about what people do even when they had lung cancer. And I came across, eventually, the term, Oligometastatic cancer. As in, being able to potentially treat limited metastatic spread with both systemic treatment and local procedures such as surgery or radiation or interventional radiology. Interventional radiology would be something like radiofrequency ablation, which is actually bleeding the tumor with the radio frequency waves, done by an individual radiologist, but it’s not radiation. Something else would be microwave ablation. And there’s no explanation necessary there.
So in a sense, there is this question about potentially screening upfront. So I was very lucky because unlike, potentially, maybe, liver metastasis, where blood work might show that there’s a problem – elevated liver enzymes, elevated bilirubin. There really isn’t anything for the lung. And oftentimes that’s why lung cancer is so deadly because by the time you have a symptom of coughing or, you know, a cold that won’t go away, or potentially what appears to be pneumonia, it’s almost too late. It’s spread too far for you to be having those types of symptoms. So I was extremely lucky.
And I actually did have video-assisted thoracic surgery, right from the get-go, to remove that, to take a wedge. It recurred in 2008 in the same area and I had radiofrequency ablation of the lung. It’s never occurred in the lung since then.
So, again, getting back to the standard of care for screening for brain metastasis is – this is an excellent trial to determine whether it is in fact meaningful to be screened because some of us have a higher probability of getting a brain metastasis – those of us with HER2+ breast cancer. And it probably is actually even somewhat a little bit higher for people who have triple-negative breast cancer. So it will be very good to see whether it’s meaningful to screen for that.
Hope for Patients
I just want to mention that I’m a very long-term survivor. I was diagnosed in 2007. I don’t know if you want to use this term survivor, metavivor. But you all understand what I mean. But I think it’s important to know two things. One is that it’s not the norm. The median lifespan for a person diagnosed today with metastatic breast cancer is actually only two and a half to three years. Plus, roughly three quarters of people diagnosed with metastatic breast cancer today do not survive more than five years.
So I think that it’s important to know that I am not the norm in this particular situation. But on the other side toward that, is that I did have a brain metastasis and I’ve never gotten another one and it ended up really not being the end game. So I think it gives us some hope. We’re all individuals in terms of our diagnoses and our subtypes and that, you know, we really don’t know what an outcome would be, but any one of us could have a good outcome.
The other thing is that a little bit over a year ago, it was advised that I actually go off of HERCEPTIN. I’ve been without any evidence of disease since 2008. And there is even a suggestion that maybe my pathology has changed. There is a 30% chance of that happening. And because the lung metastasis was triple-negative and the brain metastasis was triple-negative. And when I had – when my breast slide tumor had been re-evaluated early on in the game in another institution, it was shown to be borderline HER2, which was different from the initial diagnosis of HER2 3+. And so, it’s just been recommended that I go off of HERCEPTIN.
So for me, this has only been in the last year, so it’s kind of frightening to do this. I feel sort of like my security blanket is gone and that this is really going to be a new chapter for me about what’s going to happen in the future. We will know that there’s no evidence-based medicine to suggest that maybe the cancer won’t ever come back. It’s only anecdotal, potentially anecdotal evidence. So, I’m obviously, you know, concerned and I’m doing this with some trepidation, but I’m going to, I’ve decided to take that advice and I’ll just see how it goes.
Advice (NOTE: This is found on the Advice Section of the website).
When I got the diagnosis of a brain metastasis, I ended up getting two opinions and I really think that it’s worth doing that. As I mentioned, the first surgeon for the craniotomy said that they would use seizure medications, yet the second surgeon said that they would not use them if I wasn’t already on them.
Also, you might get, you know, two opinions that say the same. They might just recommend that you have, you know, the SRS or the one shot of radiation to the tumor. Or on the other hand, such as in my case, I was recommended to do the craniotomy and the other type, the IMRT or radiation. But I definitely think it’s worthwhile to get a second opinion, so that you can try to determine what you think would be the better way to go. And, you know, what your overall sense of comfort is with each doctor that you speak with. And so I was glad that I did that, got that second opinion, and I would clearly, I would clearly recommend it.
Julia was diagnosed with breast cancer in 2013 while pregnant with her son, and scans following his birth showed it had already metastasized to her brain, liver, and bones. After many setbacks, the cancer started responding to treatment, and Julia has made it her life’s mission to use her bonus time to make cancer research more patient-centered, innovative, and inclusive.
Introduction & Background on Julia
When my brain mets were found I was asymptomatic and there were three spots and they were treated with Gamma Knife. They were tiny. And my doctor said that we would treat them with this radiation, that it was very effective, that it was a treatment that was minimally invasive and that I would possibly, and hopefully, be able to continue my treatment for the cancer from the neck down. And if they ever popped up again, we would find them fast because we were always checking my brain.
So what happened with me was what happens with many people that have brain mets. And after you receive one treatment, you have a few scans and then the scan looks a little different. Does it look different because you radiated that area? Or does it look different because perhaps the cancer’s growing again? And then you do a couple more scans over the months leading up to – maybe it is growing too much and something does need to be done.
And I went through that a few times and did have two more radiations. So out of those three that I initially had, only one of them kept coming back. We treated it twice more and at that point it was probably going to be the last time that I could do radiation to that same spot. So the doctor started talking about possibly changing my systemic treatment, my chemotherapy.
And at that point I had done treatments that had made me very, very sick. I had had heart problems. I had ended up in the hospital, cardiac ICU. I had come very close to dying from the side effects of drugs that I had taken. So at that point I was on the drug that was actually not being too toxic to my heart and I was handling it quite well and it was effective against the cancer. So when they suggested possibly changing my systemic treatment, my first reaction was, “no, don’t take this drug away from me!” This has allowed me to live, to live my life.
I still have to go get infusions. I still have to go get scans. I still have side effects right after the infusion, but I’m not in the hospital in the intensive care unit. So don’t take this drug away from me. And I told my doctors, “do whatever you have to do to my brain.” Like, cut it open if you have to, but don’t take away my systemic treatment.
They said, well, that is an alternative. We could open your brain and remove what’s there. And if we do that, we’ll actually know exactly what it is. So that’s when we started exploring the idea of a craniotomy.
We were leaning towards a craniotomy. And I actually did meet with the surgeon at the hospital where I was being treated and I had excellent care. And I mentioned to my doctor that I would be willing to travel, if I had to, to go see the best neurosurgeon for my situation. And he said that he went to school in a particular place and he had this – I don’t know if he took his class, or if he just knew of him – but this was a world-renowned brain surgeon at Sloan Kettering. And I used to live in the Midwest and he said I can send him an email and say like, you may not remember me, I was in your class many years ago, but I have this patient and she’s willing to travel to New York and I think that you can help her.
And so he arranged that for me, and it did happen. I first traveled to New York to meet him. And I went to Sloan Kettering – this immense, very known cancer center, and entered the building. And those are memories that I still have. And walking up, or taking an elevator in a high rise up to this man’s office. And when I get there, he’s sitting in there and he’s older. Probably in his seventies – he’s retired since. So that was close to the last few patients, probably that he operated on.
And I entered his office, and it was a big office. Very messy, with books everywhere and a board and a big screen, a TV screen. And he said, well, have a seat. I did, with my mom, and then he pulled up my scans on that TV. It’s like a big image of my scans. And he used a pointer and was like, oh, this is where the spot is that we’re going to remove, and we’re gonna go in through here. And then I’m going to travel like with the – whatever the tool is that they use. And I said, well you’re going to go all the way there and you’re gonna come in through here – what happens like with all this brain stuff on the way?
And he looks at me and he’s like, you don’t need that. And I was like, okay. My brain mets had not really affected my balance or anything. Balance because in the cerebellum, that’s usually what they worry about. But, of course, with having them cut into my brain and remove parts of it, you wonder like, how are you going to wake up? What is going to be missing?
So I went back home. I prepared for – like, it took a couple months when I was able to travel there again. We scheduled the surgery, I went, I did pre-op and did everything that has to be done. Went in for the surgery and they did the surgery. I dunno – I think it lasted three to four hours. I don’t remember. My family probably remembers exactly.
But when I finished, they brought me to a post-op room and I woke up and, you know, they check like, can you talk, can you hear, can you move your arms and legs? And everything seemed fine. And I knew where I was. I remembered why I was there. And, yeah, apparently I didn’t need whatever he had to go through.
Recovery Time (Part 1)
So after having brain surgery they take you to the post-op room and I don’t know how long after you wake up. So I woke up. I think they did bring my family in to just say hi to me. And, before, I stayed there for a longer period just to recover in that room. And eventually was brought to a room in the hospital.
I don’t remember having pain. And I do remember them saying that there’s not too much pain with brain surgery. I was then brought to a room and I spent – I think I was supposed to spend at least a week in the hospital. And in the end, I spent maybe four days. I spent less than I had to. My recovery was excellent. I mean more than anything, it’s like, yucky. Like I don’t remember pain, I remember pressure. And the nurse would come and check and clean a little bit. But, you know, all the hair – well, they do shave the hair right around the spot. But I had more hair around it, so it gets pretty gross.
And you have staples. So I mean, I remember being grossed out by the pictures, or the images that people would show me, because I couldn’t actually see what it looked like. And I remember having pressure. So they would put pillows in a way where I could sleep comfortably. But I had excellent care. I still remember a male nurse that I had at that hospital. And they’re just so knowledgeable and so helpful. Every time you get up, they’re very worried that you would fall. You just had your brain operated on and that’s the part that helps with your balance.
But, you know, everything was fine. I mean, as any hospital stay, they worry about, are you having bowel movements? Are you peeing? And all of those things. And when your body is somewhat recovered and you’ve done those things they let you go home. And I did.
So I went home to my sister’s place in New York and I stayed there for a few more days. Maybe a couple of weeks. I remember they didn’t want me to get on a plane for, I don’t know, maybe it was like a month. I don’t remember exactly. But I ended up recovering so well. They removed the staples, they had all the things that they had to do after the surgery. And then they released me to travel back home way earlier than they expected.
Recovery Time (Part 2)
So after being sent home, my recovery was going very well. I was sent home from the hospital even earlier than we thought. After being sent home, you can’t do much. You have to really take it easy. And one of the hardest things was not washing your head. You can’t wash your head for a long time.
I think something like two weeks, well, maybe not that long. Maybe it’s like five days. It felt like an eternity because it starts getting harder and harder with like the yuckiness that’s coming from the actual scar and just being dirty and like – So the day that they tell you, okay, now you can wash your hair, you feel like your life has changed completely. Like, a hundred pounds are off your head and gross stuff that is around your scar and your hair. I had hair about this length at the time, and they shaved the area of the cut, but around it, you know, I still had more hair. And because my hair was long enough after – even right after this surgery, it was always hidden.
And right after, as I started recovering over the next few months, I eventually shaved the whole back, like the whole bottom part of my hair. Just because on one side it was shaved and I did that to the other side and I wore my hair like that for a few years, I think, with the bottom part shaved. Yeah, I don’t know when I stopped.
But, yeah, I feel fine and I can lay on that side or I can, you know, get my hair tied or anything like that. I can brush my hair. But it is more sensitive. And if I touch my head, really, like the shape of my skull is different on that side. Like there are some bumps that I don’t have on the other side. I mean, they literally have to drill through your skull. So if you think about the bone, they have to drill a hole, take off a lid, go in, do whatever they have to do. Get that lid, put it back in and staple it.
I had two main experiences with second opinions. The first one was when I lived in St. Louis. I had a doctor at a comprehensive cancer center that was a breast cancer expert. Very respected in the community. I really trusted him. And when we were talking about surgery and possibly doing a craniotomy, and I brought up to him that I would be willing to travel, really anywhere, but that my sister lived in New York, and that was a very convenient place for me to travel, if that was a place to find the right surgeon. He really guided me in finding the right people and reaching out to him, to the neurosurgeon at Sloan Kettering, who ended up doing the operation.
My second experience with second opinions, that really marked me around brain mets, was after my surgery, I would have my routine scans and scans were starting to, again, show an area that perhaps would be a recurrence or necrosis or a hole from what they removed in the surgery, I don’t know. And my doctor, he was really working hard and close with me, and we were following this and we were talking to radiologists and trying to understand what it was.
And as I was doing research, and at that point, I had been living with MBC for a few years, so I was a little more educated. I came across Dr. Nancy Lin. Mind you, this was 2015-16. So it was a long time ago. And her name already kept coming up as someone that really focuses on management of brain mets and had written a number of papers and there were presentations. Like her name would come up on agendas, big conferences.
And I told my doctor, I said, “Do you know her?” Like, do you know this doctor? I kind of want to go see her and I don’t know if he knew her or if he knew of her, but he definitely knew who she was and was supportive. And he said, absolutely, if you would like to speak with her and see what she recommends and you know, more smart people thinking about this very complicated problem is a great thing.
And so when I was able to get in with her and schedule a trip and meet with her. You know, they sent all my records. He sent her an email directly, really updating her on what the situation was from his perspective. And I think they had a few phone calls. And I just felt like the amount of knowledge would just grow. You know, it was like multiplying by each expert that looked at my case, and thought about it, and then bringing in people that were really at the forefront of the research for my particular case.
Julia (I) – Advice
As I think about what I went through and what I still go through and what other people I’ve met have gone through. The biggest thing that comes to mind is that every situation is unique. Every situation has to be discussed and has to take into consideration that specific patient, their life, what their life was like before cancer, how they want to live their life with cancer, how they are affected by their treatment.
Of course, the doctors will know specific characteristics of the tumor. All of those factors have to play a role in deciding what each person will do.
Julia (II) – Advice
I remember when I was newly diagnosed with metastatic breast cancer. I could find people here and there that were living with this disease, normally. There were differences in terms of subtypes and also age.
But it was very difficult to find information on brain mets. And, you know, there were websites that were outdated. There weren’t too many experts around the country and I had to go look for them myself. There wasn’t a central place where I could get information that was reliable and updated.
Julia (III) – Advice
So I think this website with information on breast cancer brain mets is a really wonderful and needed tool for people dealing with this diagnosis. I mean, I don’t think it’s right to compare diagnoses and say, what is the hardest? But brain mets is very, very unique and requires a lot of attention. So people need all the resources that they can get.
Terlisa Sheppard is a 4-time breast cancer survivor of 23 years. She was originally diagnosed in November 1998, with stage 3 HER2+, ER+, PR+, breast cancer at 31 years old, and while 8 ½ months pregnant. She has been living with stage IV metastatic breast cancer for 20 years and has metastases to her bones, lungs, liver, spine, abdomen, and brain.
My very first metastatic breast cancer diagnosis was in November of 2001. And at that point it had metastasized to my bones, lungs, and liver, which was traumatic in itself. And just, not even a year later, it metastasized, in 2002, it metastasized to my spine and abdomen. And in 2003, it decided to metastasize again, that time to the brain.
And that was, I remember it like it was yesterday, August of 2003, and they thought it was very important that they whisked me into surgery. Probably not even two weeks later on August 15th, 2003.
So before the brain metastasis, I had been on chemotherapy, I had surgery and then radiation after that. The thought was because my tumor was so aggressive with the pregnancy diet that I had started with my breast cancer diagnosis, it was done upfront to go ahead and try to shrink the tumor as much as possible.
And that did help. It went down sizably so we were able to have a very successful, at that time, surgery and radiation afterwards, before I was actually diagnosed with the brain metastasis in 2003.
Gamma Knife Radiation Treatment
I was diagnosed with my first brain metastasis in August of 2003. And at that point, I had stereotactic radiosurgery – we referred to it as SRS surgery – and to have radiation to go directly to the site of the tumor. And at that time I had like a two centimeter tumor.
And 18 years ago is when I went through one of the most traumatic experiences of my life. I had no idea going into this diagnosis, what all it entailed. I had no one to talk to about it. It was completely new to me, but I knew I had to do it. You know, at that point, I had already had all the previous metastasis from the breast cancer, so it was moving forward for me. And at that point, if you can imagine having this big steel frame screwed into your head. I literally had the toolbox that my nurse gave me, sitting in my lap as he got different tools, the screwdriver, and screwed this frame into my skull.
Of course, you know, I was medicated at the time, but I still felt a little tugging and I could see that toolbox in my lap. So, you know, your mind gets to wondering, what am I going through now? What’s next? But I knew, as I said, it had to be done moving forward with my diagnosis.
Symptoms Resulting From Original 2003 Radiation
So I really started having symptoms before going into the craniotomy. The symptoms – they were unbelievable actually. And me being, or trying to be, the strong person that I thought I was, I tried to just get through it, you know. But knowing that I wasn’t used to headaches on a daily basis, and I was beginning to have these headaches every day.
I would wake up in the mornings and it became so tough for me to even lift my head. It got to the point where I was literally just, you know, holding onto my head from the pillow, trying to get up out of the bed. And even with that, you know, then came the swelling. I had no idea until the MRI was done, but even before that, I had this feeling and ringing in my ears where it felt like I had been swimming underwater for days, and I hadn’t been swimming at all. I love the water, but I didn’t love it that much.
And after consulting with my medical team, my oncologist, I was pushed into the MRI immediately. And that’s where it showed up. You can literally see the swelling where the center of my brain should have been centered, but it was pushed so far to the other side that you knew immediately, even without a medical degree, you knew that something was going on.
And after finding out and sitting down and talking with all of my medical teams, I found out it was from the necrosis that had built up from the original 18 years ago, the original SRS surgery. And if you can imagine nine hours of laying on the table receiving that SRS surgery, then necrosis, you know, that pretty much would have been a symptom 18 years later.
My brain specialist, at the time, was going through all of these different scenarios with me – what was going on with my brain and the swelling. And sitting there, listening to him, I didn’t want to believe, or want to hear that “Terlisa, this could be cancerous, or it could be just necrosis from previous surgery.” So I literally went through this craniotomy surgery, not even knowing how I was going to come out on the other end.
For those of us who have gone through a metastatic diagnosis, you sort of cringe at even knowing what could come next. You know, will there be more chemotherapy? Will there be more surgery? You know, what are my daughters going to have to go through again? You know, they pretty much grew up through my diagnosis. They’re grown now and I’m very grateful, but just watching them growing up through this diagnosis, I had so much going through my mind at the time. And I knew I had to move forward and go through it.
So we had the craniotomy surgery on February 22nd, 2020. I’ll never forget that date. Here I am again, having a procedure for brain, and possibly brain metastasis. And I had no idea what would be.
Pathology Shows Necrosis
Going through this diagnosis – actually going through this diagnosis during a pandemic – was even another hurdle to climb for me. And believe it or not, I spent two days in the hospital. Not even a brain person who had brain surgery, a craniotomy – they could not find a bed for me. So I literally spent two days in ICU, just pretty much laying there during that time, and it was so tough.
So I was actually released to go home, not having the stability that I should have had before being released, but my options were very slim. But I was very grateful even after going through all of that, getting my pathology report. Can you truly believe it was no cancer? I was completely overjoyed.
You know, in my mind, having had all of those metastatic diagnoses, “Oh, I can deal with this. I can deal with the brain swelling.” You know, even the steroid weight gain. But, of course, yes, it was tough. And even moving forward, you know, February of next year would be a year. And of course, the steroid weight is lingering, but that’s very minute in my book. I’m still here. I’m still on this journey, I’m still pushing through and very grateful for any science that is helping me and others to get through this diagnosis. So, yay for the pathology report!
My overall diagnosis has been truly, you know, life-altering for me. But I can tell, and will tell, anybody else, I literally have been living in the moment. I can’t really explain how I got here 18 years later after my original diagnosis. And then this year, having to have a craniotomy because of that original diagnosis and necrosis, swelling of the brain. But I try to, and it’s very cliche, live in the moment, live my best life.
I consider myself completely blessed to be even here at this moment, and to see my daughters grow up. When I started this journey almost 23 years ago, from my original diagnosis, I was pregnant, and I had a daughter who had just turned two years old. They’re grown now. They’re 25 and almost 23 years old. I can’t not tell you how elated I am to just have witnessed that.
And yes, they have grown up through this diagnosis, but I saw them grow up. And they’re living well, considering all that they have gone through watching me go through this diagnosis. So live your best in every moment. You know, I don’t know when my time will expire going through all of this, but I will say that Terlisa lived all that she could for that particular moment.
Reilly Starr was diagnosed with MBC in January of 2019. In addition to more than 20 years of public relations and communications for major corporations and law firms, she also founded her own businesses that focused on empowering women and children.
Discovery of Metastatic Disease
In the middle of 2018, I had my first child. And it was a very easy pregnancy for me. However, following my pregnancy, I really started to go downhill and feel a lot of pain throughout my body. It was uncomfortable to sleep. I was, at night, moving from the couch to my bed, back to the couch and using pillows to prop myself in ways to feel comfortable. And yet I really found no comfort. I would say as a college athlete, I’ve gone through many injuries, and many surgeries and the pain that I experienced was pretty unbearable.
I tried to communicate this to my pediatrician who just sort of, you know, tried to comfort me by saying, this is what it’s like to be a mom for the first time. Which I tried to, you know, respect and understand and do my best to just try to dull the feelings and the pain that I was going through. But it was really, at the end, I knew in my gut, there was something not quite right.
And so after really pleading with my pediatrician, I was able to get my first mammogram and when I had that mammogram, I was in a lot of pain. It was really hard for me to even turn over, to let the nurse get a better image, or just, you know, even try to communicate what I was going through. It was just so immensely painful.
And sure enough, we found seven tumors in my breasts. And if anyone is watching this that’s gone through this process, you know that that’s a lot. And it was really an emergency situation that I was in to start the process of diagnosis.
The scans started, we scanned my breasts and then we realized that there was more to that. So I was obviously beyond the early stage. And it went from my spine. We started to notice that there were tumors and it went up to my neck. And that’s when, you know, it was pretty clear I was Stage IV and I was 39 years old at the time.
Coping with a New Diagnosis
Following almost a year of my first line of treatment, I was diligently getting scans done and x-rays and making sure that I was as much ahead of my cancer spread as possible. And, as you can imagine, when you’re stage IV de novo, you’re going through a lot of pain. It’s a lot of new pains. Occasionally it’s hard to decipher what is really an issue and what is a side effect and how to present just so many new, you know, feelings and experiences and moments that you don’t feel are normal, but should you report these, you know, problems? Are they problems?
Really, how do you manage such a new – it’s not even a diagnosis at this point – it’s a new phenomenon. It’s like you’re experiencing something that you’ve never gone through before in your life. And being someone that had, you know, a history of athletics and endless injuries that were typically within, you know, just pointing to where the pain was, or saying enough keywords that a doctor could easily remedy the situation.
But when it came to my newfound life of cancer, I quickly realized it’s extremely difficult to describe sometimes. Because sometimes the pain doesn’t happen every day. Sometimes a pain could happen just once and it was severe. And sometimes you just forget because the pains all start to mesh together. So when it comes to having a conversation with your doctor and really trying to create an accurate picture of what you’re experiencing, it’s extremely intimidating and it’s challenging and it’s trivial.
And so, you know, making sure that you’re conveying an accurate picture of what is happening to you is something that should be simple. And it’s so far from being simple that you find that you’re in a guessing game and you need, you know, someone to lead you. And so it’s great to talk to people, but when you’re in the midst of it, and you’re in the trenches of trying to figure out something quickly, it’s a very intimidating and oftentimes depressing experience.
When I was trying to decipher exactly what I was going through, it was very overwhelming and I, you know, could barely describe it to my family or my closest friends, because I couldn’t even understand what was going on. And quite frankly, it was so new to me. I didn’t know cancer. I didn’t have friends with cancer. I didn’t have, you know, many family members with cancer, or enough to just find guidance. So, you know, I tried my best and I think that I guessed enough in the right way that I was lucky to tackle new issues presented during my first year that I was able to find solutions to the problems.
And I think that you really have to stay on top of conversations with your team, at the hospital that you’ve committed to. If you need additional help, you need to make sure that you are reaching out and advocating for yourself. And that’s a huge step in the process – is learning how and when to advocate for yourself and to really capture that, you know, this is a problem and it needs a solution and being direct about that and having the type of support that can propel you in the right direction.
Diagnosis of Brain Metastasis
When I was initially diagnosed, most of my cancer was in my liver, and it spread to my spine. And so that was quite an undertaking in terms of treatment, and it wasn’t just chemo, it was radiation. So, of course, there was a lot of imaging to go through and to keep on top of.
What I didn’t expect, and I don’t think my team expected either, was that when we looked at the scan of my spine, we saw that there was a lot of need for radiation and controlling the cancer and the pain that was happening. But as we went up my spine, we started to see that my neck had some indication that there was activity happening. And I don’t think anyone on my team, and I love my team, I have full faith in my team, I respect them. I really don’t think anyone expected for there to be as much activity happening in my brain as there was.
In fact, I will never forget sitting in the waiting room with my mom, who is my number one fan, and she couldn’t even wrap her mind around how many lesions I had in my brain. And it was just – I remember it was a moment of reality, having to convey to my biggest fan, just how much treatment I would need, how much help I needed, to eradicate what was going on in my brain.
And I think at that point in time, I had such a rough first year, like most of us do. Just trying to mentally process what we’re going through. Physically learn how to manage our, you know, aches, and our pains, and our questions, and, you know, how do we communicate all of this to friends and family, to the doctor? It’s a real intimidating and daunting experience in our first year and throughout the entire experience of what breast cancer brings to us.
But I would say, when you’re learning the ropes, at first, it can be something that comes with error and questions and doubt. And I think it’s important to not only convey everything you’re experiencing, because at the end of the day, you don’t know if one thing can actually be a very strong indicator.
So don’t hesitate to communicate and to share your aches and pains and fears. And you know, if you felt something a week ago, but you don’t feel it today, you need to talk about what happened a week ago. Because these are signs that will lead to potential problems and you need to try to identify these problems as soon as you can.
Making Treatment Decisions
When I first learned that the cancer had spread to my brain, I was just knocked off my feet. I was overwhelmed. It was something I didn’t expect so quickly following my initial diagnosis. So it was a real moment of needing to educate myself and create as many options for myself. While I had so much vested and trust in my lead oncologist, I felt like this was the time that I needed to start to branch out and ask others. Because, after all, it’s my brain and my brain is the most important thing that I have.
And so I did talk to other oncologists and, you know, made sure that I was seeking out the best advice that I could possibly gain in this mission to make a determination as to next steps for myself. I can’t stress enough that it’s important not to be led into a decision without you being fully knowledgeable and able to feel confident in what’s being recommended to you. Because, you know, you need to understand what’s happening with your body and ask questions. And if you need to develop a team outside of your local team, make that happen for yourself because you’re fighting for your life and you’re fighting for all those that love you, so you need to really take the time to understand the problem and seek out as many solutions and then decide what the best solution is for you.
In my case, you know, I could have tried other drugs, and I did, and it didn’t work, unfortunately. So I did, finally, reluctantly, give into whole brain radiation. But actually we first focused on a part of my brain, on the cerebellum, because that’s where the most activity was. And unfortunately, you know, my radiation oncologist didn’t think it was good enough. We needed to do more and we did. But it was, you know – it was a combination of me understanding the steps we were taking and my radiation oncologist enabling me to make those steps and in a comfortable way, and not rushing into something second guessing it, regretting it.
It really needs to be a solid decision, not only for you, but for your team and your family. So, you know, you all feel confident that you did the right thing because it’s your brain. And you want to feel that you’re doing the best for yourself, and that, you know, it’s not a mistake that you regret down the road. Because we have precious time that we need to protect and we need to make sure that we’re doing the best for ourselves and loving ourselves by doing as much educating and talking with, you know, the experts as possible.
Making of the Mask
When you commit to whole-brain radiation, there are steps that you have to take ahead of time to prepare for the actual procedure. And in hindsight, it got easier with each time that I had to radiate. But you should mentally prepare yourself for, not only the fitting of a mask, that will not only be placed on the front of your face, but will be also on the back of your head.
And I would say that initially the heat that you’re going to feel from the mask taking shape to your face is going to be a little startling, but it’s never to a point that you are going to feel in danger. You’re just going to probably feel a little alarmed by the amount of heat that you’re experiencing while in a mask.
But I would say that that part is not as bad as when they clip you in and that’s to make sure that you’re not moving because it’s your brain. And you do want to make sure that you can save as much as your brain as possible from being incorrectly radiated because you do want to make sure that you’re pinpointing all of the lesions accurately. So by having your face, not only in the mask, but also pinned in a way that you can’t move is going to be the best for you ultimately. But it may be uncomfortable. If you find that you are claustrophobic or you’re going to have trouble with it, you can tell your doctor ahead of time. They can medicate you. I did not choose that just because I wanted to make sure that I was fully aware of what was going on.
It was a painless procedure. And the other thing to keep in mind is it took about a minute, which was great. It doesn’t take much time at all. It’s just the prep and being in a mask can be uncomfortable, mentally more than physically, because it’s over very quickly. And for me, I talk a lot if I’m nervous and I just made sure to talk to the nurses and, you know, they understand that this is nothing that, you know, you can scoff at. So they’re there for you and just talk to them. If you need to start over, start over. If you need to take a second, drink some water. Take care of yourself. They are there for you and you need to feel as comfortable as possible in this procedure.
Once you’re on the bed and you have your mask on, you can expect to be able to see above you what’s going to be doing the radiation. And the machine is going to whirl around, not only your entire face, but it’ll take probably four, sometimes five, different x-rays. So you need to be prepared for seeing an instrument kind of whirling around your face. And you’re not going to feel anything. It’s not heated, it’s not uncomfortable. It’s just taking pictures. And usually the staff will have stepped out at this point. So if you have any issues, you definitely will be able to click an alarm and they’ll come in immediately.
And I think, you know, what you always just need to keep in mind is that it’s going to be a quick procedure. And each time you have to go in – so usually it’s 10 times, occasionally if you have just a minimal amount of lesions, it could be half that amount of time. So ask ahead of time what to expect and that’ll help you prepare for the procedure.
So once you’re done with the procedure and they’ve captured the different angles that they need, the staff understands that you’re, you know, in a stressful situation, it’s uncomfortable – they will come in immediately. If you think that you are particularly, you know, stressed out, express that to them. Say, you know, I would kind of joke around and say, you know, clap my hands like I was a coach and say, let’s go team. We’re going to go fast. And they kind of find that, you know, it kind of breaks the ice a bit, but it also keeps them on their toes. Like I’m a person that is uncomfortable right now. I need this team to come right back into the room and take the mask off. Because they’re there for you and they understand, and they will try to make you feel as comfortable as possible.
Experience Post Radiation
Personally, my whole brain radiation experience was over the course of 10 treatments. And those 10 treatments happened over a weekend. So I had a break which I felt I just wanted to speed through it all. But the weekend does happen. The staff does have, you know, some time to enjoy on their own. So as much as you may want to go through all 10 days, you’re gonna have to take a slight break.
But following those 10 days, you’re probably gonna feel a little nervous about what to expect, when do the side effects start to, you know, come into play. And I personally felt the effects about a week later. I just had severe fatigue and so I slept a lot. And what’s interesting is that the sleep that we have known our entire lives, tends to help us and revive us and refresh us. But when you’re recovering from whole-brain radiation, you actually just continue to feel tired. And, you know, it’s perfectly normal to have that fatigue for about a month or so following the procedure. And that’s normal. Everyone’s different. That was my experience. And I think that a lot of people feel the effects for about a month afterwards. And then he started to normalize a bit.
However, you may experience a cognitive decline. And, you know, identifying that decline is kind of by happenstance. So it’s not like immediately you can’t remember, you know, your old neighborhood and the dogs or your teachers from, you know, your history of school. It’s more like short-term memory and you can’t remember if your husband just reminded you to take out the trash. That will completely slip your mind occasionally, and you just need to, in my opinion, train those that are close to you about your tendency to forget more and your short-term memory has been impacted. And that if you forget something, just kindly remind me. I don’t mean to frustrate you, but I am recovering from whole-brain radiation.
And you don’t even need to go into that. Just say, I just need a little reminder every now and then. And it’s better to do that ahead of time than frustrating yourself, frustrating those around you. And again, it’s just a matter of educating people, you know? It’s unfortunate that you and I have had to go through whole brain radiation, but we come out on the other side with a brain that is able to function better and hopefully for a long time. And it just is a matter of recovery.
And hopefully you do fully recover. And there’s – you’ll be taking medication to help with that recovery. And the interesting thing is that what they may prescribe to you, it should be very effective. So it’s just always taking each day by day and making sure that, you know, you have the support that you need.
Whole Brain Radiation Results
Following my whole brain radiation procedure, I was able to figure out and anticipate any type of forgetfulness I was having. Or just helping to train my family and friends on, you know, needing little reminders here and there. But what was most important was the followup with my radiation oncologist and figuring out my response to the procedure. And thankfully, I responded very well.
The 60-plus lesions were showing shrinkage, not all of them. But there was confidence that I was on the road to the right recovery. And so I was elated. It was such a daunting step in my cancer treatment. And yet it became one of the easier things to recover from.
So, you know, you just have to be patient with yourself and everyone else needs to be patient with you. Because our brain is the most important thing and even though following the treatment, you’re trying to make sure that you’re taking care of yourself in the best way possible, give yourself a chance to just relax. Because there are long term effects that you can experience. So just be easy on yourself and, you know, just be in touch with your memory, your response time, your needs. Creating a system for those around you to keep on top of your daily needs. And if you’re forgetful about something, it’s great to have someone there to help you and make sure that they understand what you need.