Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile

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Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Breast cancer patient Sharon was diagnosed with triple-negative invasive lobular carcinoma after she found a lump after working out. Watch as she shares her breast cancer journey through two stages along with treatment – and what she learned and experienced with clinical trials and her advice to other patients. In Sharon’s words, “I do think that patients should be given all of their options upfront. I don’t think that clinical trials should be the last resort.”

See More from Patient-to-Patient Diverse Breast Cancer Clinical Trial Profiles

Transcript:

Sharon: 

I found a lump after I had been working out. I kind of blew it off, I thought it was a muscle strain. I kind of went about two to three weeks just icing it. I asked my mom a couple of questions like, “Hey, have you ever had this type of pain?” She’s not an avid exercise individual, so she had no clue what I was talking about. It had become unbearable. My right breast, it became swollen. It was extremely swollen, red, very, very firm, and I knew that I needed to go into the doctor to see what was happening. So I visited my PCP, from there, I was told to get a mammogram, it was authorized. After that, I needed to have the tissue sampled to determine what the problem was. So, I received the phone call at work, and it was very disturbing, very distraught, I had found out that I was triple-negative breast cancer stage III at the time. From there, I immediately went into chemotherapy that included 16 sessions of chemotherapy followed by a right mastectomy. I opted for reconstruction. At the time of reconstruction, we went in and decided that we would do an expander, and that lasted about six weeks. Then I developed a staph infection, so the expander needed to be removed, so that was before I had a chance to receive my post-mastectomy scans. 

 So there was a large time frame which I was not having chemotherapy, and I had not received my scans. I was diagnosed in May of 2020 with stage IV. The cancer had metastasized to my liver, spine, and bones. Then the new care plan was to be placed back on chemotherapy, a different regimen, something a little bit stronger, since triple-negative is one of the strongest types of breast cancer.  

I felt like I did not have any additional options. I had tried what my oncologist deemed to be the most effective chemotherapy at the time. I was doing research in terms of holistic healing, different I guess, vitamins, fruits and vegetables, or changing my eating habits, removing sugar. So all of the life hacks that you kind of Google yourself which is something people should not do, so I tried that approach. And my oncologist said, “We might need to look into clinical trials.” It was definitely something that I did not hear throughout the initial process, which was kind of a bummer that that information wasn’t provided. I definitely think that my decision-making process would have been a little different had I known about them. So, we had tried all of the chemo therapies that we could, all the targeted therapies, and I am triple-negative, so none of my receptors allowed me to do the oral chemo or any of the hormone therapy. So I couldn’t do that. And so the option they tried for chemotherapy that was being tested was given, was provided, and I did a little bit of research on my own. I asked around in different support groups that I attend to see if anyone had heard of this trial drug. And from there, I decided that since the other options were not going to work with the type of cancer that I had then the clinical trial might have been the next best option. 

 I just recently celebrated one full year of living with stage IV… And I guess that’s a big to-do, because the scary stats online, they say that once your cancer has metastasized, you typically have 12 to 18 months of life expectancy. So, I’m passing that mark, I’m doing well. I am currently on a new chemotherapy regimen, and I have chemotherapy two to three times a month with a couple of breaks in between. I’m definitely a breast cancer advocate. I like to share my story to encourage others. I know it can be very overwhelming to kind of live with this disease every day, along with the anxieties that come with it. 

I was not familiar with clinical trials, I have had three oncologists, and I did not hear about them until my third oncologist, which is very scary. I do think that patients should be given all of their options up front. I don’t think that clinical trials should be the last resort. I think that patients should have…kind of be empowered to make the decision as for them, and the option for clinical trials should be shared. They should be a part of the care plan if the patient decides that it’s the best thing for them. I decided that it was best for me because there were not many…there were limited options available for me. And I think that had I been given the information earlier, I would have done some additional research to see what other people have been doing and are doing in terms of research, especially as it relates to clinical trials. One of the questions that I asked during the initial process was, “Were there other women of color on this particular trial, and have they seen success?” And unfortunately, I was the first person in my area on the clinical trial that was a person of color, so I had not known about them previously.  

It was beneficial for me to be a part of the trial. The trial was not a success for me, but I did read research where the trial drug actually worked for others. 

I would advise for patients to ask doctors for the information and do additional research on their own, it’s okay to seek guidance. It is also okay for patients to search for support groups, ask within the support groups if these clinical trials have been done in other areas. If the clinical trial has seen success, if there are women of color on those clinical trials, it is important to know as much as you can about the drug. Patients should ask, “What are the side effects? What is the efficacy of the drug? How is the data from the drug used? Is your information going to remain anonymous?” There are a number of reasons patients should advocate for themselves as well as doing their own research, although your nurse practitioner or oncologist may go through the documentation with you, that it’s a lot to process at the time, you should ask for time to review the documents with your family or whoever helps you make decisions, I would also advise patients not to feel pressure to sign the waiver or the information packet the same day. Definitely take some time to read it, do your own research, ask other people who have been on the trial or ask other patients who have been in your shoes previously. I spoke with a number of women who hadn’t completed the clinical trial that I completed, but they had worked on clinical trials in the past.  

They shared with me the side effects that they experienced as well as some of the remedies that they use to counteract those side effects. They also share with me their experience with their oncologist or with their care team. So I had a very, very helpful care team. They walked through the release waiver with me. I also spent some time with my family, spent some time with my religious leader, as well as some of my breast cancer buddies, is what I like to call them, to make sure that I was making decisions for me, opposed to being pressured to sign on the same day that you received the release. And then lastly, I would just say really meditate and ask yourself, “Is this something that needs to be done, or is this something that needs to be added to my care plan to make sure that I have the best quality of life?” 

I would just like to let everyone know that clinical trials are not approved drugs, but with the help of other women of color who have been left out previously, we can… Or we can ensure that other women of color who are battling cancer and have a better chance. So I joined a clinical trial to make sure that I can help someone who will experience the same exact situation, and hopefully there will be additional drugs created or approved within the next 10 years to help someone else. Being stage IV is more than a notion, but I’m excited that I’m a part of history. So that clinical trial that I participated in did not work for me, but the information that was gathered would hopefully help them improve the drug. 

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile

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Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Triple-negative breast cancer patient Stacy was diagnosed by a breast cancer surgeon she works with. Watch as she shares her journey through diagnosis, her decision to join a clinical trial, her experience with treatment, and her current feelings about clinical trials.

See More from Patient-to-Patient Diverse Breast Cancer Clinical Trial Profiles

Transcript:

Stacy:

I was diagnosed by a medical provider that I work for, she’s a breast surgeon, and once I was diagnosed, because I’m in the environment of breast surgeons and breast multi-discipline providers, my care was probably handled a little differently. So, I was referred to an oncologist who then introduced me to the clinical, the breast clinical trial that was available. I actually didn’t have a lot of questions except for will it help others? And he said it would, it’s for triple-negative diagnosed patients. The trial is an additional drug that helps with the triple-negative, and it has been provided by the FDA. So, because of that, I was willing to do it. My only pushback was that the treatment was every week compared to it being every two weeks or three weeks. The first phase…for me was…I had no problems with it. Actually, after treatment, I was up for 48 hours, which allowed me to do a lot of things – house work, part-time job, working remotely, it just afforded me things that I would not be able to do for being tired.

I always have had my screens, and I’ve had diagnostic mammograms and they always came back normal, so negative. And this particular time, I had Dr. Hampton to just look at it, it just felt like a cyst. I wasn’t really concerned with it. So Dr. Hampton did look at it, we thought initially that it was a cyst and not infected, but two weeks later that what felt soft then became very hard and round, oval-shaped. I was just…in two weeks, it was already hard. So I said, okay, so I had her to look at it again, and from there she said, You need to have this worked up.” And then from there, I went and had another diagnostic mammogram, and the next day I was scheduled for a biopsy by the top radiologist. And he said, “Stacy, I think that you need to have an MRI.”

Right, and so I had an MRI, had a CAT scan, all that was done within two weeks, and they tell me that I had cancer. Dr. Hampton…this is kind of funny because the staff scheduled my appointment, as I am the manager of the breast center. They scheduled my appointment. I met with her, and she let me know that I was triple-negative and that it would require chemo as well as radiation and surgery. The following week, I was scheduled for chemo.

Once I spoke with the oncologist, he said he employed me to look up the trial, and it would be beneficial to others. I initially was not that excited about the trial, I reached out to others who were triple-negative here in our office to ask and what they thought about it. One of the patients/friend, she already knew of the trials, she gave me three different trials that were going on right now. And one of them happened to be the one that he suggested that I should participate in, and she just basically said we would be helping…that I will be helping others to participate in it. So I thought about it for about two or three days, and then I decided to participate in it. Now initially, I wasn’t so keen on it, but after hearing about helping others and that it was mostly, I was told that it was almost like a miracle, medicine that helped triple-negative. And I decided to do it.

During my trial, the lump that I felt once I started on a trial treatment in three weeks, the lump was gone. And each week it wasn’t completely, but it reduced itself in three weeks. And as I continue with the treatment, we couldn’t feel it. I had my provider that I was seeing, the oncologist, and each week it was almost like it was gone, it was totally amazing because prior to that, it probably…it felt like the size of maybe a large, grape, but it just in three weeks, it was totally a big difference. So, I know that the trial is good. It has to be because in three weeks or something that I’m thinking probably grew in six weeks, whereas I was able to feel it, I couldn’t feel it anymore, and that three to four, it was gone.

So prior to being diagnosed, there were a multitude of things that I did not know. Working for a breast surgeon, where we see those patients and then becoming one of those diagnosed patients are totally two different things. What I thought I knew, it became apparent that I didn’t know, and there were things like the metallic taste that you have in your mouth, you can no longer use metals, anything, utensils…you have to use plasticware. The neuropathy that you feel in your hands, it’s hard to pick up anything that’s metal, the feeling just kind of goes through your hand, that means keys, that’s a door knob, you just have to kind of suck it up and do what you have to. The tiredness, but they don’t let you know that you’ll feel exhausted. That’s totally different from tired. So once you’re diagnosed, you have to see a multitude of providers, specialists, you have imaging that’s done, and the team that I have had done most of that for me, so I have a great support team.

Life today is, I have my up and down days, for the most part, my days are good. Once I have my treatment, my first phase went so well, I wasn’t tired. I was still doing things that I normally do with the exception that I had gained a lot of weight. So my second trial started about four weeks ago, and it hit me very hard, I was so exhausted, I have never in my life been that exhausted, that…taking two steps, and I felt like I had ran a marathon. With me being so independent and knowing or wanting to be around my team, I forced myself to come into work, and the second trial also brought on bone pain, muscle pain, headaches, and again, I was just totally exhausted from it.

What you have experienced or endured at the time, during a clinical trial and expressing it, it can only help the next person. But, in essence, I think the clinical trial is not in that only to help someone else, but it’s also to help you…I think the knowledge of just knowing that you’re a part of something that could be enhanced or approved or just help you with your health is a plus. So, working with a breast surgeon and working with multi-discipline providers that’s on the team, oncology radiology, technologist, and seeing the impact that it has on patients, I wanted to participate in the trial because again, I knew that it would help people. So just being a part of that environment definitely impacted my decision in participating in the trial. With the scientific studies that they have out there with the trial, it can only make the research for us better.  

Will Telemedicine Be an Equalizer for Patients Experiencing Bias?

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Will Telemedicine Be an Equalizer for Patients Experiencing Bias? from Patient Empowerment Network on Vimeo.

Some breast cancer patients may experience in-person bias during visits. Expert Dr. Regina Hampton from Luminis Health Doctors Community Hospital explains her perspective on situations when telemedicine can provide benefit to the patient experience.  

See More from the Breast Cancer TelemEDucation Resource Center

Related Resource:

Transcript:

Dr. Regina Hampton:

Yeah, I think it takes away that, that in-person bias that that providers may have, you can kind of put on whatever you want and put on your face, and then I think that gives some providers just a different view of who that person is without looking at them in-person. And creating that judgment that we all do, we all do it, and that’s just a part of human nature. But I think it’s great for those patients who…I have a lot of patients who are caregivers where they’re caring for their elderly patient, and they can’t leave that patient alone. Well, they can continue to do their doctor’s visit provided they don’t need a physical exam and be able to keep that. It may be helpful for that patient who is stuck at home, it allows them that access. So I think it does help to decrease the barriers, especially for patients who may live in a rural area, who may not be able to travel back and forth to the big city to see their doctor, and being able to jump on a telemedicine visit to be able to get their concerns heard, and then they can figure out if they need an in-person visit, so I think it’s just going to open up the world. 

I think it will give those patients more access, and hopefully it will help to just break down some of these barriers that we see as we move forward. 

Is Telemedicine an Advantage for Low-Risk Breast Cancer Patients?

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Is Telemedicine an Advantage for Low-Risk Breast Cancer Patients? from Patient Empowerment Network on Vimeo.

 For low-risk breast cancer patients, is telemedicine an advantage? Expert Dr. Regina Hampton from Luminis Health Doctors Community Hospital shares her views on when telemedicine makes sense for low-risk patients and the benefits she’s seen for patients’ quality of life.

See More from the Breast Cancer TelemEDucation Resource Center

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Transcript:

Dr. Regina Hampton:

I think it helps to eliminate a lot of those in-person visits, which then means they can enjoy life. We want them to enjoy life after surviving their breast cancer diagnosis and treatment. So maybe they’re doing their televisit while they’re on vacation or while they’re out of the state, visiting with relatives. So it really allows them to be able to stay in tune and in touch with their healthcare providers, stay on top of their visits, but allow them the flexibility to continue to live life. I often tell patients, “Look, after we’ve treated you, we don’t want you in our offices all the time. We want you out there living life.” And if we can make that easier by doing a quick tele visit, especially if there’s not something serious going on, then I think that’s a great advantage. And I think as we move deeper and deeper into the telemedicine world, I think patients are going to appreciate that, and they’re going to actually demand it and say, “Well, you know, I’m doing fine, I just need you to look at my mammogram and us to have a quick discussion while on a cruise or while I’m on the beach in Hawaii enjoying some time with my family.” So, I think it’s opened up a new world, and it’s just going to get better and more easy, and I think patients are going to shift their brains to say, “You know, if I don’t have to be in an office somewhere, I’d rather be on a video or a phone visit.

Which Breast Cancer Patients Benefit Most From Telemedicine Visits?

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Which Breast Cancer Patients Benefit Most From Telemedicine Visits? from Patient Empowerment Network on Vimeo.

Dr. Regina Hampton  from Luminis Health Doctors Community Hospital provides her perspective on care situations when patients can benefit the most from telemedicine – and when in-person visits can provide an advantage.

See More from the Breast Cancer TelemEDucation Resource Center

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Transcript:

Dr. Regina Hampton:

So, I think when we look at new patients, newly diagnosed, I think an in-person visit is certainly advantageous, I think people certainly want to meet their doctor in-person, what I found personally is after that initial visit, then we’ll convert the rest of the visits by telemedicine. As the patient is willing, if they want to come in, I’m happy to have them come in, where I think it’s really beneficial is in survivorship after the patient has gone through treatment, and she may still be following with her medical oncologist, because she’s on hormonal therapy. Or she may be on some form of chemotherapy, and maybe she wants for me to be able to take a look at her mammogram. Well, I can still do that because I can remotely access those films, and then we could do that television, and if she’s not expressing any concerns, then we can do that as a television, so this helps, especially for those patients in survivorship where they’re not going to three and four different doctors on a regular basis. They’re going to that one doctor, they’re getting that in-person visit, and then some of the other providers are part of the team can maybe move theirs to telemedicine visits, so again, I think it helps to keep patients with that connection to some of those without again, having the burden of taking time off of work, having to arrange childcare, they can do those other visits by telemedicine. And that’s something new that we weren’t doing pre-COVID, patients were having to come into the office and see every single provider for every six months for the first two to three years after their diagnosis, so I think that really has made it more convenient for the patients, and it’s really allowed us to really streamline our operations on the provider side, which then allows us to be able to serve more patients.  

What Opportunities Does Telemedicine Present for Breast Cancer Patients?

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What Opportunities Does Telemedicine Present For Breast Cancer Patients? from Patient Empowerment Network on Vimeo.

Does telemedicine present certain advantages for breast cancer patients? Expert Dr. Regina Hampton from Luminis Health Doctors Community Hospital shares benefits that she’s seen in the breast cancer community and her perspective about the future of telemedicine. 

See More from the Breast Cancer TelemEDucation Resource Center

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Transcript:

Dr. Regina Hampton:

I think telemedicine has been great for the breast cancer community. I found in my personal practice, I do quite a number of visits and conversations prior to starting the first treatment. So, what’s nice is because we know the patient may be seeing several different providers, I do my initial visit and then the subsequent visits leading up to, say, surgery, we do by telemedicine. And what’s great about that is it allows us to dial in another support person, you can usually dial in at least two or three more people who can be a part of the conversation and hear the discussion, it also allows the patient to really…if they’re working full-time to be able to save that time, because maybe there’s another provider that they have to go see or they have to get their pre-op work-up. So it really just provides more access. And then if they just have a simple question, they don’t have to make a whole visit, take off half of their day and travel. We can either jump on the phone or jump on a quick video call, so I think it really has just opened up for not only the patients, but also the providers, and just given more access to care and really allows, I think us as providers to really meet people where they are. I’ve had people who’ve traveled or they had to go take care of a sick loved one, and we could jump on a call to do our office visit, and they could still do the things that they needed to do that may have come up unexpectedly. So, I think telemedicine is here to stay, and I think it’s only going to grow and grow and really provide more patients with access to providers. 

NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients

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NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients from Patient Empowerment Network on Vimeo.

Is the COVID-19 vaccine recommended for people living with cancer? Dr. Erin Roesch shares recommendations from the National Comprehensive Cancer Network (NCCN) for those undergoing cancer treatment, including guidance on mask wearing and advice for family members.

Dr. Erin Roesch is a breast medical oncologist at the Cleveland Clinic. Learn more about Dr. Roesch here.

Transcript:

Katherine: 

Many cancer patients have questions about the COVID vaccine. Is it safe? Do we need to continue wearing masks? Here to address these questions is cancer expert, Dr. Erin Roesch. Dr. Roesch, would you introduce yourself?

Dr. Roesch: 

Hello. And thank you for inviting me to participate in this very important conversation. My name is Erin Roesch. I am a breast medical oncologist at Cleveland Clinic.

Katherine: 

Excellent. Thank you so much for joining us today. I’d like to run through a list of concerns that cancer patients have about vaccines in general and the COVID vaccine specifically.

So, let’s start with a basic question. Should people get vaccinated if they have cancer?

Dr. Roesch: 

Yes. All individuals diagnosed with cancer should get the COVID-19 vaccine as recommended by the National Comprehensive Cancer Network or NCCN.

An immunocompromised state makes many people with cancer at higher risk of serious COVID-19 illness. Those who are vaccinated are less likely to become sick with COVID-19. And, also, vaccinated people who do get COVID-19 are much less likely to become seriously ill.

I would also mention that those living in the same household as a person diagnosed with cancer and caregivers or other close contacts should also get vaccinated.

Katherine: 

Another common question is whether people with cancer should wait for any reason to get the COVID-19 vaccine.

Dr. Roesch: 

Most people with cancer should get the vaccine as soon as they can with a few exceptions according to NCCN.

People in the process of receiving stem cell transplant or cellular therapy should wait at least three months after they finish treatment to get vaccinated.

Those diagnosed with certain forms of leukemia should also wait a few weeks after receiving treatment to allow their immune system to recover so the vaccine can be effective.

It’s not been clearly defined exactly how chemotherapy affects responses to COVID-19 vaccines. But some data suggests that immune responses may not be as robust. However, it is still recommended that those receiving chemotherapy and also immunotherapy and radiation should get vaccinated whenever they can.

Katherine:

I think a lot of people are concerned too about whether one vaccine is better than another. What would you say to them?

Dr. Roesch:

And that is a common question that I often get in my clinic. And I advise my patients to receive or take whatever vaccine they are offered.

We don’t really have any studies or data at this point suggesting one being better than another in cancer patients.

Katherine: 

Some people are wondering if the vaccine can give a person COVID-19. How would you address that?

Dr. Roesch: 

I would say that as none of the currently available vaccines are made with a live virus, the vaccine itself can’t give a person COVID-19. By getting vaccinated, actually, those who are immunocompromised are really helping society to prevent the spread of COVID-19. Immunocompromised people who get COVID-19 may be more likely to infect others due to prolonged shedding of the virus after infection.

Katherine:

What about side effects? Are the vaccine’s side effects worse for people with cancer?

Dr. Roesch:  

No. Side effects do not appear to be worse for those diagnosed with cancer. Results to date suggest that the vaccine’s side effects in people with and without cancer are really no different.

These side effects, as we have seen, may include arm soreness, rash, fatigue, chills, fever, headache, for example.

Katherine: 

And, finally, can cancer patients stop wearing a mask after they’ve been vaccinated?

Dr. Roesch:

Cancer patients should continue to wear a mask post-vaccination. Many people with cancer may have a harder time actually fighting infections and may not respond as well to vaccines. So, people diagnosed with cancer and their close contacts should get vaccinated and then continue to follow precautions, which include wearing masks, social distancing, hand hygiene.

Katherine:

Is there a certain length of time that people need to continue wearing a mask after being vaccinated?

Dr. Roesch:  

At this time, I would recommend patients continue to follow the CDC guidelines that are currently in place. And at this point, I don’t think we have a projected end time for that yet.

Katherine:    

Is there anything else you’d like to share with cancer patients who may be concerned about vaccinations?

Dr. Roesch:    

I would encourage those diagnosed with cancer to not only themselves get vaccinated but to also really voice and stress the importance of vaccination to those that surround them, including, again, members of their household, close contacts, and even beyond their inner circle.

I would also advise people to try and avoid letting the concern of possible side effects related to the shot deter them from getting it. The symptoms of COVID-19 can be much worse and potentially serious for some compared with the relatively minor side effects that we’ve seen with the vaccine itself.

I also would mention I’ve had personal patients that have expressed concern about functioning of their immune system while receiving chemotherapy and how this might affect their response to the vaccine. I do emphasize to them that even though responses might not be as strong as they may be in the absence of active treatment, I feel like the potential benefits of the vaccine still outweigh the risks in my mind.

Katherine:   

Thanks so much for joining us today, Dr. Roesch.

Dr. Roesch:

Thank you for having me.

What You Need to Know Before Choosing a Cancer Treatment

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What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.

If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.

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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 

This program is supported by Blueprint Medicines, and through generous donations from people like you.

What Factors Help Guide Metastatic Breast Cancer Treatment Decisions?

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What Factors Help Guide Metastatic Breast Cancer Treatment Decisions? from Patient Empowerment Network on Vimeo.

What treatment is best for your metastatic breast cancer? Dr. Halle Moore of Cleveland Clinic reviews important considerations when choosing a therapy, including the role of molecular testing.

Dr. Halle Moore is Director of Medical Breast Oncology at the Cleveland Clinic. Learn more about Dr. Moore, here.

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Transcript

Dr. Halle Moore:

For patients with advanced breast cancer, some of the major factors that affect our treatment decisions are first the receptor results. This includes the ER and PR, which are the hormone receptors, as well as HER2. These receptors really guide the initial treatment options.

In addition, the patient’s overall health status is an important factor in treatment decisions. And then the prior treatment history, what the patient has previously received, either in an earlier stage of disease or previously for their advanced cancer.

Molecular testing for metastatic breast has gone from something that was primarily used only in the research setting to something that is now quite valuable in making treatment decisions every day in the clinic.

The results of molecular testing may indicate whether our patients are eligible to receive certain treatments, such as immunotherapy or certain targeted cancer treatments. We also have an increasing number of clinical trials that are testing treatments targeted to the molecular drivers of an individual’s cancer.

I would say one of the most interesting new approaches in the treatment of metastatic breast cancer is the use of antibody drug conjugates. These combine an antibody against a target that’s likely to be present on cancer cells more so than on normal cells in the body.

And, typically, a very potent chemotherapy drug is combined with the antibody. The antibody then allows for delivery of a high concentration of this chemotherapy drug preferentially to the cancer cells allowing for very effective treatment of the cancer while limiting toxicity from the treatment to the rest of the body.

COVID-19 Vaccination: What Do Breast Cancer Patients Need to Know?

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COVID-19 Vaccination: What Do Breast Cancer Patients Need to Know? from Patient Empowerment Network on Vimeo.

Is it safe to get the COVID-19 vaccine if you have breast cancer? Dr. Halle Moore of Cleveland Clinic provides valuable insight, including a discussion of side effects and the importance of staying up-to-date with visits and screenings.

Dr. Halle Moore is Director of Medical Breast Oncology at the Cleveland Clinic. Learn more about Dr. Moore, here.

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Transcript

Dr. Halle Moore:

For most adults with cancer or with a history of cancer, vaccination against COVID-19 with one of the newly approved vaccines is definitely recommended.

Common side effects after the COVID vaccinations are a sore arm, which is probably one of the most common side effects that we see. Fatigue and muscle aches can occur. Also, some patients will experience fever and chills, and that seems to be especially after the second dose of the vaccine. Rarely, severe allergic reactions can occur. And also, some people will experience enlargement of lymph nodes, typically in the underarm area or in the neck on the side of the vaccination.

This is particularly important for cancer patients to be aware of since enlarged lymph nodes could also be seen with cancer, and that might be alarming to some patients if they experience this side effect without knowing that that is a normal immune response to the vaccine.

In addition, cancer patients who are getting imaging, either a CAT scan or even a routine mammogram, if they get that imaging soon after the vaccine, the lymph nodes could be seen on imaging, and that might raise a concern as well. So, it’s important that patients let their provider know if they’ve had a recent vaccine and they’re getting any kind of imaging or mammogram.

So, breast cancer patients who are on chemotherapy or other treatments that could affect the immune system should definitely discuss with their oncology team the timing of vaccination with respect to their treatments.

This often needs to be individualized based on the planned duration of the cancer treatment as well as how much that treatment actually affects the immune system. In general, it is safe to get the vaccine during chemotherapy. It’s just that there may be a potential for reduced immune response during certain types of chemotherapy.

On the other hand, some chemotherapies are given more long term. And we don’t generally advise interrupting the chemotherapy for vaccination. So, oftentimes, we will recommend vaccination even in the setting of cancer treatment. Certainly, anti-estrogen treatments, hormonal treatments for breast cancer, or radiation treatment for the breast cancer should not alter either the safety or the effectiveness of these vaccines.

So, some of the ingredients in the various vaccinations that have led to these allergic reactions that we’ve heard about are also present in certain chemotherapy drugs. So, for people who have had a life-threatening reaction to chemotherapy, for instance, an anaphylactic reaction, it would be a good idea to discuss with your oncologist whether you should see an allergist prior to vaccination. This is something that we’re recommending for patients who’ve had severe allergic reactions to try to determine what component the reaction was to and whether vaccination with any of the individual vaccines might be safest.

Delaying care for non-COVID-related health concerns has been a major concern over the past year. It’s important for people to know that hospitals and medical clinics have numerous safety precautions in place. And we are really strongly encouraging everyone to continue to address all of their healthcare needs and to receive important treatments, particularly cancer treatments.

Metastatic BC Research: How Can You Advocate for the Latest Treatment?

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Metastatic BC Research: How Can You Advocate for the Latest Treatment? from Patient Empowerment Network on Vimeo.

What do metastatic breast cancer patients need to know about the latest research news? Dr. Megan Kruse shares highlights from the 2020 San Antonio Breast Cancer Symposium (SABCS), along with her advice for advocating for the right testing to help guide treatment options.

Dr. Megan Kruse is a Breast Medical Oncologist at the Cleveland Clinic. More about this expert here.

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Transcript:

Dr. Kruse:                   

At this year’s San Antonio Breast Cancer Symposium, there were a few interesting presentations about the treatment of first-line metastatic triple-negative breast cancer that I think patients should be aware of.

Two of the presentations centered around trials that were presented in the past. Those reporting, patients reported outcomes from the IMpassion 130 study, which looked at chemotherapy for metastatic triple-negative disease plus the immunotherapy atezolizumab. And then, there was also an update on the results from the KEYNOTE-355 study, which was a study again of chemotherapy for metastatic triple-negative patients in combination with pembrolizumab, a different immunotherapy. And both of these studies showed that there was benefit for women in certain sub-groups of triple-negative breast cancer when looking at addition of immunotherapy.

And so, what I’d like to draw patients’ attention to with these presentations is that you have to be aware of if you fall into one of these categories so you know if you’re a candidate for the particular type of immunotherapy that can be added to chemotherapy. There are two different ways to test for if a patient is a candidate for immunotherapy and they are both tests that can be done on biopsies of metastatic or cancer recurrent sites in the body.

They can also be sent off of original breast cancer tumors. And what we now know is that for patients who do not have markers that suggest immune activation or where the immune system would be responsive to immunotherapy the addition of that extra therapy really does not help to improve cancer control over chemotherapy alone. And I think that’s a really important topic because everyone is very interested in immunotherapy, but it does have side effects of its own and it can actually be lasting side effects in terms of inflammation in organs like the liver, the colon, and the lungs.

And then, the third presentation that I’d like to bring up is the IPATunity study, which looked at the addition of a targeted therapy called ipatasertib to, again, chemotherapy for the first treatment of metastatic triple-negative disease.

And so, this is getting into an area of targeted therapy for metastatic triple-negative disease. And again, only looks at patients that have a particular marker that suggests sensitivity to this drug. And those are certain genetic markers, predominately changes in a DNA marker called PIK3CA. In this study, we actually found that there was no benefit for the targeted therapy added to chemotherapy for patients that had that genetic mutation, which was different than what was seen in earlier studies of the same combination. So, I think there’s more work to be done and it’s probably too early to say that this targeted therapy will not be used in treatment of metastatic breast cancer.

But what all of these research studies show together is that metastatic triple-negative cancer is not really just one disease. It’s very clear that within that one name, there are multiple different patient types and tumor types that need to be cared for differently.

And so, again, I think the theme from these abstracts and these research presentations is that we have to look into the right therapy for the right patient at the right time, which largely involved DNA-based testing.

So, when patients are thinking about their treatment options and how to best help with their providers about what treatment options exist for them, I think it’s important to recognize the type of testing that may be advantageous in your cancer type.

And so, for all metastatic breast cancer patients, we really recommend that they’ve had genetic testing to look for DNA changes like BRCA mutations that will lead to treatment options. For metastatic triple-negative disease, it’s important to make sure that you’re providers are testing for PDL1, which would make you a candidate for immunotherapy. And then, the more we learn about clinical trials, the more we have options for patients that have had drug-based DNA or genome-based testing. So, that’s an important term for patients to become familiar with is genomic testing.

And I think when you bring that up with your providers, they’ll know what you’re talking about and they’ll know that what you’re potentially interested in is new targeted therapy for the cancer that may either come in combination with chemotherapy or as a standalone treatment option. If you don’t have those options that are available, and FDA approved basis for regular routine patient care, there is always the option of clinical trials.

And so, if that is something that you’re interested in, genomic testing will often open the way. So, I think as you’re writing notes when you’re talking to your providers, you might wanna jot down whether or not you’ve had genetic testing and whether or not you’ve had genomic testing in the past, as both of those things will help potentially address all of your treatment options.

I’ve very hopeful about the research that is going to lead to new developments for breast cancer treatment in the next few years.

I think what we’ve seen both at this San Antonio Breast Cancer Symposium as well as other conferences in the recent past has been a lot of focus on finding the right treatment for the right patient at the right time. And so, patients seem to be very interested in finding out this information. They often come to clinic armed with the most recent data, which allows their providers to have really informed discussions about what the best treatment might be. And to talk about if the new treatments are not great right now, what treatments might look like in the future.

I think the other thing that’s encouraging about the research that we’ve seen presented at this conference is that some of these trials are very, very large. For example, the RxPONDER trial was a trial of over 9,000 patients. And I really think that’s amazing to get that many patients interested in research that may not directly impact their patient care but will impact the care of others moving forward.

It’s just a sign that our breast cancer patients are empowered, and they want to make a difference in the scientific community as a whole.

 

How Can You Advocate for the Best Breast Cancer Care?

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How Can You Advocate for the Best Breast Cancer Care? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Julie Gralow explains how you can advocate for the best metastatic breast cancer care, through speaking up, utilizing care team members and taking key steps to achieving better care.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

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Transcript:

Katherine:                  

For patients who may be hesitant to speak out for themselves and advocate for their own care and treatment, what advice do you have?

Dr. Gralow:                

You have a whole team who’s behind you, and I’m the MD on the team, but I’ve got a nurse practitioner, and a nurse, and a scheduler, and a social worker, and a nutritionist, and a physical therapy team, and financial counselors. I’ve got a whole team who works with me. And so, a patient might be hesitant to speak up during the actual appointment with their physician. It’s a short amount of time. I would recommend come into it with written-down questions because things go fast. You don’t get a lot of time with your doctor.

Things go fast, but don’t come in with 25 questions, either. Pick your top few that you want to get taken care of this visit because if you come in with 25 or 30, you’re going to lose the answers to most of them. Maybe bring somebody with you who’s an advocate and a listener for you who could be taking notes, so you can process and you don’t have to write it down, or ask if you can record it. It’s really important if you’re newly diagnosed or maybe there’s a progression and you’re going on a new treatment. That’s okay too.

But, I would also say you have a whole team behind you, so sometimes, if you don’t have time or if you’re hesitant to speak up in your doctor’s visit, you can ask the nurse, or maybe you can ask the social worker for help, even. See if there’s support groups around.

Interestingly, we’ve got a peer-to-peer network where patients can request to talk to somebody else who’s matched to them by some tumor features, and their stage, and things like that. Maybe finding somebody else who’s gone through something similar, and somebody independent to talk to instead of relying on your family.

It can also be really helpful to talk to a therapist or a psychologist about your fears, and sometimes, you want to be strong for your family, strong for your children and all, but you need a safe space with somebody that you can just express your fears and your anger if that’s what’s going on, or your depression or anxiety to while you’re trying to hold a strong face for others in your family. So, I would encourage patients to look at who is the whole team and talk to the other members of the team as well, and sometimes, they can help advocate.

Also, find somebody who might be able to come to your appointments with you, somebody who will help you advocate or remind you – “Didn’t you want to ask this question?” – or be another set of ears that you can process it with afterwards.

Katherine:                  

Dr. Gralow, we’ve covered a lot of useful information today for patients. Thank you so much for joining us.

Dr. Gralow:                 

Thank you, Katherine.

Katherine:                  

And, thank you to all of our partners. To learn more about breast cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.

How Can Breast Cancer Genetic Testing Empower Women?

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How Can Breast Cancer Genetic Testing Empower Women? from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente explains how breast cancer genetic testing results can help women learn about their breast cancer risk and guide prognosis and treatment choices.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

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Transcript:

Dr. Valente:                

So, genetic testing in this day and age is really empowering to a lot of women. So, it allows women to take control of their health from the beginning. So, if somebody has a strong family history of breast cancer, and that woman doesn’t have breast cancer but wants to know if she’s at an increased genetic risk for developing breast cancer in her lifetime – Knowing that risk and if a gene is identified, that woman could undergo high-risk screening.

So, saying if she develops breast cancer, it would be caught early, and she can go into a high-risk program. Or she can elect to prophylactically – meaning before cancer – remove her breasts. That would be both of the breasts with a mastectomy – Again, with or without reconstruction. And so, that decreases the risk.

Nothing in life is 100%. But it essentially decreases the risk of getting breast cancer. Some of the genes, like the BRCA gene – that’s a very common gene – is a 60% to 80% lifetime risk of developing breast cancer. And so, that would take that lifetime risk down to about 5% risk of developing breast cancer. And so, that’s empowering for a lot of women. And so, some women do elect to have that procedure.

The other thing for genetic testing is that for women who are diagnosed with breast cancer, sometimes the triple-negative breast cancer – finding out whether or not they carry a BRCA gene. We know that certain genes in triple-negative breast cancer allow patients to have better treatment outcomes with certain chemotherapy. So, the medical oncologist may opt to add a specific chemotherapy based on whether or not that patient actually carries a genetic mutation.

What Should You Know About the Role of Surgery in Breast Cancer Treatment?

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What Should You Know About the Role of Surgery in Breast Cancer Treatment? from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente explains how surgery approaches, including mastectomy and lumpectomy, are used in treating breast cancer, and addresses common misconceptions about mastectomy.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

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Transcript:

Dr. Valente:            

So, breast cancer patients have the option to remove their whole breast, which is called a mastectomy. And if they pick that option, they could choose to have reconstruction or to essentially go flat. Yes, we have even done reconstruction in metastatic breast cancer patients. Metastatic breast cancer patients live for a really long time, so giving them reconstruction to make them feel whole and kind of put them back together after a mastectomy is definitely a good option.        

The other option is to just remove the cancer. So, if the patient has a small breast cancer, and it’s metastatic, we can just say – Hey, you don’t have to have the whole breast removed. So, we can do a lumpectomy, as well.

So, a lumpectomy is essentially a surgery that removes the cancer with a normal rim of tissue around it. We also call it a partial mastectomy, meaning you’re removing just part of the breast. Or it’s also called breast-conserving surgery. So, it’s any method that removes that cancer with a normal rim of healthy tissue around it but allows the woman to keep her breasts.

So, when it comes to surgical choices and a cancer coming back, some women think that if they pick the most advanced surgery, such as a mastectomy, it helps prevent cancer from going somewhere else in the body. And that’s actually not true. Removing both breasts, doesn’t make you live one day longer. At that point, a mastectomy or a lumpectomy is a choice.

And prognosis – meaning whether or not the cancer’s gonna show up somewhere in the body – is based really on two things – the stage at which the breast cancer presents itself and what type of breast cancer it is – meaning is the cancer outside of the lymph nodes? How large is it? And if it’s a triple negative or some other type of breast cancer? Those determine the higher likelihood that somebody could develop metastatic breast cancer later in their life, even though small, early-stage breast cancers, unfortunately, can also develop metastasis later on in life.

But women sometimes think that if they pick the most aggressive surgery, it’s helping prevent metastatic spread later on in life. And that’s actually not the choice.  Breast cancer surgery is the option that women choose to surgically remove their breast cancer. But again, choosing a mastectomy or a lumpectomy for an early-stage breast cancer is a choice of how they wanna remove the breast cancer. But it doesn’t improve the chances that they won’t have metastatic spread later on.

So, the role of surgery for metastatic breast cancer is mainly for what we call to remove the cancer or sometimes for local control. So, the number one treatment if somebody is diagnosed with metastatic breast cancer is systemic therapy. That might be chemotherapy or endocrine therapy. But it’s really to get the metastatic disease under control.

So, where does breast cancer usually go? Bones, liver, lungs, brain. So, surgery to remove the breast or the breast cancer in the breast doesn’t really take care of those problems. But a lot of times for metastatic cancer, the one reason would be for local control. So, if the cancer is causing issues in the breast – swelling, coming out of the skin – where it’s a wound issue, then we’ll remove that to get better control of the area in the breast.

The other reason is if somebody has metastatic cancer, and their cancer in the other area of their body is controlled with the therapy, then we say – Hey, chemo’s working, or the systemic therapy’s working. The only thing that seems to be left is the area in your breast. Then for a conversation with medical oncology, we say you don’t have to come off your medications. This is a good time to remove the breast cancer to control that problem.

Metastatic Breast Cancer Treatment and Research News

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Metastatic Breast Cancer Treatment and Research News from Patient Empowerment Network on Vimeo.

As metastatic breast cancer testing approaches continue to expand, new and promising treatments have emerged. Dr. Lisa Flaum shares information on recently approved treatment options and the role of genetic markers in accessing targeted therapy. 

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

There are a lot of new and promising treatments for metastatic breast cancer. So, the treatments in general and the novel treatments and studies really vary based on the subset of metastatic breast cancer. So, when we’re making our treatment decisions, a lot of it is defined by those markers. So, if someone has a tumor that is hormone receptor, estrogen and progesterone receptor positive, and HER2-negative, the mainstay of treatment is typically drugs that target estrogen and often partnering drugs that target estrogen with other more novel or newer treatments.

So, just in the last five plus years, there have been a number of new drugs and even new drug categories that we didn’t have previously. So, for that population of the estrogen receptor positive tumors, the biggest breakthrough over the last number of years has been a class of drugs called CDK4/6 inhibitors. So, that includes drugs like Ibrance, Kisqali, Verzenio. And they’ve emerged as a very important and effective and often a recommendation for our first-line treatment for these patients combined with anti-estrogen therapies that have vastly improved outcomes for patients. So, a much higher percentage of patients respond to these drugs, the duration of the responses has extended quite a bit. And importantly, patients tend to tolerate this drug class really, really well.

 So, for many patients starting out with that diagnosis, this type of drug class is going to be part of the discussion. Even in the last year, another drug category has emerged with approval of a new drug called alpelisib, which is something called at PI3 kinase inhibitor. So, again, back to defining the options based on the molecular profile of the tumor. So, this newer oral drug also partnered with anti-estrogen therapy, has been an important breakthrough for the treatment of patients who harbor this specific molecular abnormality. So, important to define whether that’s an option by some of these molecular testing.

There’s also newer drugs and studies of newer drugs that affect the estrogen receptor in different ways than some of our traditional medications.

And this is an ongoing area of significant research. So, that’s the estrogen receptor positive tumors.

For patients who have HER2-positive tumors, these are tumors that tend to be more aggressive, that tend to require more aggressive upfront treatment, which usually involves drugs that specifically target HER2. So, again, defining what’s driving the tumor and hopefully having drugs available that can target that specific abnormality. So, HER2 targeted drugs have evolved quite a bit over the last couple of decades.

Initially, we just had a drug called Herceptin and then a drug called Perjeta or pertuzumab was developed. Then more recently a drug called Kadcyla. And then even in just the last six to 10 months, two new drugs that target that HER2 protein. One of them is called tucatinib, the other one is called Enhertu. They’re not necessarily appropriate for the first line of treatment, but really sort of expands our toolbox in terms of how we treat these types of tumors. And these are developments that have occurred, for one of the drugs, just in the last six months, and the other within the last year. So, a lot of progress.

And then for the third subset of tumors, which are the triple-negative tumors, those are the ones that do not over-express estrogen, do not have estrogen or progesterone receptors, and don’t overexpressed HER2. This has been historically an area of unmet need. So, tumors where we can’t use anti-estrogen therapies, we can’t use HER2 targeted drugs. And so, the main stay has always been chemotherapy. And even for this subset, we’ve had progress.

So, one of the drug classes that’s been approved in the last couple years for triple-negative breast cancers is immunotherapy. So, immunotherapy has gotten a lot of press. It’s been really breakthrough treatment for a lot of different cancers, has lagged behind to some degree in breast cancer, but has become now one of the early treatment options for people with metastatic disease, specifically those that harbor a molecular marker, an immune marker, something called PD-L1. So, another example of the tumor’s biology dictating potentially one of the treatment options.

There have been other drugs that have been approved for triple-negative breast cancers in women who have BRCA mutation, so who have germline genetic predisposition to breast cancer. And that opens another array of treatment tools that have been approved in the last few years. And then more recently, just over the last six months, another drug that’s been approved for triple-negative breast cancer, which is a drug called sacituzumab, again, not first treatment, but something that defines potentially future lines of treatment. So, big picture, there has been a lot of progress that increasingly alters our treatment tools for patients and allows us to have sequential treatments that can be effective if their given treatment is no longer effective.