Women Patient Stories Archives

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

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. 

Multiple Myeloma: Thomas’s Clinical Trial Profile

Multiple Myeloma: Thomas’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

 At the age of 34, Thomas was diagnosed with multiple myeloma. After multiple treatments, including an autologous stem cell transplant, Thomas shares why it’s critical to increase participation in clinical trials so we can understand why multiple myeloma poses a greater risk to certain populations. In Thomas’ own words, “Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma.”

2021-08-17_thomasIllustration_v2 (1)

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Thomas: 

My name is Thomas, and this is my multiple myeloma story. At age 34, I was healthy and enjoying life. I went to the gym daily, and when I wasn’t working out, I was shooting hoops with my friends.  

During a workout, I suddenly felt excruciating pain in my left shoulder. My family physician declared I had bursitis, but I was so young and in such good physical shape, I knew by instinct that the diagnosis was wrong. I made an appointment with a sports medicine doctor, who ran CT and MRI scans of my upper body. The result wasn’t good. I was diagnosed with multiple myeloma, a cancerous tumor of plasma cells in my left scapula.  

Because the myeloma was localized to my shoulder, my oncologist recommended 6 weeks of radiation therapy. 10 months after the treatment, the agonizing pain returned, but this time in my lower back. The pain was so intense, I remember lying on the floor, unable to move. My myeloma has spread to my lower backbone and right ribs. This time, I received an autologous stem cell transplant, but after 2 months, I relapsed again.  

Still determined, I agreed to participate in a clinical trial to receive an allogeneic stem cell transplant using human leukocyte antigen (HLA)-matched donor cells from my brother Earnest. This time, I lived cancer-free for two years before relapsing. To keep the cancer from progressing, I joined another clinical trial to receive a second allogeneic transplant using my brother’s donor cells. This aggressive treatment also included an intensive conditioning regimen of high-dose chemotherapy plus total-body irradiation. Although the therapeutic effects were serious and kept me hospitalized for 127 days, the transplant was successful and pushed back my cancer for another two years.  

Since then, my cancer has relapsed multiple times, but I refuse to accept defeat. Although my cancer is unlikely to be curable, my current treatment has been successful at keeping the myeloma from advancing. I’m hopeful that I can live a long life while treating it as a chronic disease.  I want to share my story as a Black person with multiple myeloma to raise awareness of this rare cancer. African Americans are twice as likely to develop multiple myeloma compared to whites, and are also more likely to be diagnosed at a younger age1.  

It’s critical we increase the participation of Black people in clinical trials so we can understand why multiple myeloma poses a greater risk for Black people, and get closer to a cure.  Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma. 

Multiple Myeloma: Danielle’s Clinical Trial Profile

Multiple Myeloma: Danielle’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Danielle was a very active person – and even went on vacation – right before receiving her diagnosis. Her myeloma journey unfolded with her myeloma symptoms, diagnosis, treatment, and participation in a life-altering clinical trial. “I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure.” 

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Danielle:

Hello, everyone. My name is Danielle.

My myeloma story began in 2011. I was experiencing pain in my hip and my back area, and it was the pain that would come and go.  I was also very lethargic in 2011 and couldn’t understand why I was so extremely tired, so I thought the pain in my hip and back area was due to sciatic nerve, and I just didn’t do anything about it, ignored the pain. My husband and I went on our first trip without our sons in October of 2011, and two days before the trip, I developed this really bad nasty pain in my hip and leg area, which actually altered my walk, but I had no idea what the heck was going on, and so I was so frustrated that I… As soon as we got home, I went to see an orthopedic doctor because at that time I was working out like five times a week, so I thought maybe I pulled something, a pinched nerve or something. So I went to see him, he took X-rays, I believe it was an MRI, couldn’t be sure, but when I went back to get my test results, he sat me down and said, “Mrs. Spann, there’s a mass here in your fibula, and I’m going to recommend you to an orthopedic oncologist.” So, that was the very beginning of my diagnosis, initial diagnosis. Of course, I was in denial because I’m like, I knew what an oncologist was, but he must not be talking to the right person, but I went ahead and I met with the orthopedic oncologist. He ran a bunch of tests and mentioned to me that I had myeloma, which is concentrated in one area, which was my fibula, and then he recommended that I have my fibula removed on my right leg. Two days before surgery was scheduled, I received a phone call from his office, saying, “Mrs. Stann, you have lytic lesions all throughout your skeletal structure, and we’re recommending that you go see a bone marrow transplant oncologist.” So now it’s becoming real. The diagnosis is what it was, and I just wanted to know how I could basically fight this. I’m the type of person where you tell me one thing and let’s try to find a solution, so I met with the bone marrow transplant specialist, the oncologist, and then we formulated a plan, and that plan was for me to go on my first study trial. And so that was my introduction into my having multiple myeloma.

I made the decision to participate in a trial, because I trusted my doctor. He had the expertise to understand where my myeloma was, the counts, how aggressive it was, and he recommended that I go on the study trial. He also told me that if the study trial was not going to work for me, or if it wasn’t helping me, that he was going to take me off the study trial. So, I was on the study trial from like January to March…to the end of March, and he sat me down and said that it was not working, my numbers weren’t really moving, and that he was taking me off the study trial. And he took me off the study trial, there were some other treatments that were involved, and then I had two stem cell transplants. After the transplant in 2012, I went ahead and started another treatment regimen, and I was on that for several years, which worked well. My numbers were coming down, but then unfortunately they started going back up, so he mentioned that I should go on another study trial.  I weighed the odds, and I knew that he would not lead me down the wrong path. So, I went ahead and I participated in the study trial that I’m still on today, and I’ve been on it for about three, four years.

I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure. And so that’s what I wanted to help in some form or fashion, and when I first was diagnosed going to the Winship Cancer Center twice a week, there was a quote that was posted in the cancer center, and that quote was by Dr. Martin Luther King Jr., the quote read, “Life’s most important and persistent question is, ‘What have we done to help others?’” And I would go into the center and I’m like, “Yeah, what have I done to help others?” And me participating in the study trial, I felt like I’m helping others indirectly, and it wasn’t always just about myself, it was, “Okay, yes, the study trial gives the data, and it’s helping me, but it’s also helping that next person as well.”

So, I always look at my life as before diagnosis and after, and my after does not look like my before, I can’t do the same things, I can’t do the same things that I used to do. And one of those things is going to the mall and being in there like 10 hours, that’s so remedial, but it just goes to show like I cannot exert myself the same type of energy that I could before diagnosis. And again, that’s my new normal.  I stay positive with everything in life, things happen, but you just have to do what you can to make it better, no matter what it is.

I am happy and proud and so grateful and thankful to mention that as of January 2021, my myeloma is 0% detectable, which means there’s no presence of multiple myeloma in my blood, in my urine, nor in my bone marrow. And so I’m still on a study trial, and I have two different chemo meds that I have to take, and I just act accordingly if I know that one of the chemo meds that I have to take twice a week gives me an upset stomach. I just accordingly in finding different ways to push through it. It is what it is, and my motto when I was having my bone marrow transplants was, “This too shall pass.” And so no matter what I’m going through in life, no matter how down I get. This moment will pass. And so tomorrow, you’ll look back on today and say, “You know what, I did it, I made it.” And you’ll do that for the next day, until you realize that you’re just constantly defeating that previous day, and you’re moving forward.

So, I’ve heard the terminology of a clinical trial, never really paid attention to it because I never had to…I had an idea what the clinical trial was. But once it really came home to me, I realized that, in my words, the clinical trial is collecting the data necessary, they’re going to give you the trial medication, because they’re looking to get this, this medicine approved to put on the market. These medications would not get approved by the FDA, acetaminophen (Tylenol) at one point had to go have a study trial and then get approved by the FDA and then can be distributed to the masses. And so it’s the same with these other drugs. We need individuals to participate positively, knowing that if this is not helping me right now, it will help someone in five years, in two years, in 20 years. The advice that I would give is to trust your doctor, your doctor would not recommend a study trial if he felt that there was a medication that’s already on the market that would help you better. If the study trial you’re on is keeping you with your family, and at the same time is…the scientist, the researchers they’re gathering all this data, it could come to be an actual medication in three, five, seven years. And so just think of it as something that you’re helping society…and your fellow…and your fellow man.  

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

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.  

What Are Common Barriers Breast Cancer Patients Seeking Care Face?

What Are Common Barriers Breast Cancer Patients Seeking Care Face? from Patient Empowerment Network on Vimeo.

What are some barriers breast cancer patients face in their access to care? Host Dr. Nicole Rochester asks Dr. Regina Hampton to share her perspective on obstacles that prevent optimal breast cancer care and how we can help get more patients on their path to empowerment.

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Transcript:

Dr. Nicole Rochester: 

So my first question for you, Dr. Hampton is, what are the common barriers, breast cancer patients and their families face when seeking care, what are the issues that our patients and families are facing?  

Dr. Regina Hampton: 

I think one of the big issues is having access to a breast center, so a multidisciplinary breast center, and so they tend to be in sort of in larger cities, sort of downtown, and many minority communities in these days can’t afford to live downtown. So they’re living on the outskirts, so they may…while they may have great doctors there, many times those doctors may not be up on the latest and the greatest, they may not have access to clinical trials, and so that really truly is a barrier in that sometimes our minority patients may get sub-optimal care. 

Dr. Nicole Rochester: 

That’s very concerning. I’m glad that you brought that up, that we’re not disparaging the doctors that practice in those settings, but what you said is really important that they may not have access to some of those up-to-date clinical trials and things that we may see at academic centers, so thank you for bringing that to our attention. 

What Key Questions Should Newly Diagnosed Breast Cancer Patients Ask Providers?

What Key Questions Should Newly Diagnosed Breast Cancer Patients Ask Providers? from Patient Empowerment Network on Vimeo.

What key questions should breast cancer patients who are newly diagnosed ask their care providers? Dr. Regina Hampton explains vital points to learn about your specific breast cancer to ensure thorough exploration of treatment options and the best care for you. 

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Transcript:

Dr. Nicole Rochester: 

As a breast surgeon, can you share with us what are some key questions that patients with breast cancer should be asking their team at the beginning of their diagnosis? 

Dr. Regina Hampton: 

I think it’s important to understand the type of cancer that you have, is it non-invasive, is it invasive, it’s important to know the characteristics of the tumor, is this a hormone-driven tumor, is in a non-hormone-driven tumor or triple-negative tumor? And then to ask in each step, with each discipline with surgery, finding out what are the pros and cons of a lumpectomy versus a mastectomy, when you get to the medical oncologist, finding out the pros and cons of chemotherapy versus hormone therapy, or doing both. How is that delivered? How is this going to affect my daily life? Can I still work if I’m getting chemotherapy? What happens when I get radiation? And what are the options? So, I think it’s just really important to, I’d say, go online and find a list of questions or a lot of great organizations out there that have pointed questions that you should ask each step of the way, many times the navigators will give you booklets and things to read that, have questions. And I think don’t be afraid to turn one visit into two or even three visits to make sure that you’re understanding the options. 

I‘m always troubled when I see patients who maybe years ago might have had some options, but they just rushed through and decided maybe to do mastectomy and they say, “You know what, had I really just stopped and thought about it, I might have made a different decision.” So, I think it’s very important, and I feel as the provider, the provider really should know how to read the room and really be able to pick up on the fact that, “You know what, she’s just not here today, and so…I’m going to stop talking. I’m going to send her away, let her digest this, and we’re going to come on back so we can have another conversation.” And I think as providers, we have to not be afraid, and I know it’s hard because time is tied. And we’re trying to see as many patients, but it’s really important to understand that every patient may need something a little bit different, and really trying to hone in on that, I think is really important as a provider, and making sure that you’re heard because a lot of times I think women of color, men of color as well, are not really heard by the doctor, and many of the doctors come in with their own biases and think, “Oh well, she’s young, she’s automatically going to want a mastectomy,” or “She’s old, we’re going to go ahead with a mastectomy,” well, it’s a matter of really listening to the patient and seeing how you can meet in the middle, and if the patient has to get a treatment that they’re not really keen on getting, but you know it’s the right thing to do. 

Dr. Regina Hampton: 

Again, it’s just having that conversation and dialogue so that they understand your reasoning. 

Dr. Nicole Rochester: 

Thank you. So, Dr. Hampton, it is evident during this interview, and, of course, I also know you personally and professionally, and you have certainly built a reputation of being a compassionate provider. Clearly, you are very committed to communicating with your patients, but the reality is not all of our colleagues are like Dr. Hampton. And so, I’m thinking about something you said about really kind of pushing back, so to speak, sometimes we have to push back in a polite way with our health care providers, and you mentioned maybe the woman is being faced or the man with treatment recommendations and maybe they have some concerns about that, and I know that not every patient feels comfortable disagreeing with their doctor or even engaging in a dialogue where they want to actually have more conversation. So many people, even in 2021, adopt a paternalistic relationship with their doctor where the doctor says, do this, and then they do it. And so, is there any advice that you can give our listeners our watchers, for when they’re in that situation with their breast surgeon or their oncologist, and they’re just not feeling comfortable, they don’t feel like all of the treatment options are being presented, are there any tips that you can provide for that? 

Dr. Regina Hampton: 

And in those cases, it’s important to go and get a second opinion, it doesn’t mean that you’re saying that that doctor is not a great doctor, you just may want to hear the information. It could be the same information, just presented it in a different way. All of us kind of explain things a little bit differently, and so I think getting a second opinion is important, and if your first doctor is offended that you’re getting a second opinion, you should fire that doctor. I tell my patients like, this is not my journey, this is not about me, this is really about you. Where do you want to go? We will help you get there, we’ll help you get the appointment, because I think it’s important for patients to have that information, so feel empowered and realize you can ask questions of the doctor, we’ve changed medicine and that…it’s a patient-centered approach. It’s not me. The doctor, I know all it’s…you may come in with a new study, let’s talk about it, and if you don’t have a doctor who’s open to hearing that information, then that might not be the doctor for you. 

Dr. Nicole Rochester: 

Yes, we have to have that type of relationship with our patients where we’re making joint decisions where the patient and their family members are truly brought in as members of the healthcare team. 

What Questions Should Patients Ask About Breast Density and Mammograms?

What Questions Should Patients Ask About Breast Density and Mammograms? from Patient Empowerment Network on Vimeo.

How can breast cancer patients take action to improve their quality of care? Respected breast cancer expert Dr. Regina Hampton shares advice and insights on breast imaging and some situations when additional imaging may be necessary. Learn about what questions to ask related to breast density and mammograms. 

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What Key Questions Should Newly Diagnosed Breast Cancer Patients Ask Providers?


Transcript:

Dr. Nicole Rochester: 

If we start to talk about treatment access, I want to focus on access to quality treatment, in addition to the geographical barriers, we know that sometimes patients have limited access to quality breast cancer care due to their own gaps in knowledge, and studies show that patients who are knowledgeable and engaged in their healthcare received better care. So can you speak to what we have learned specifically if we talk about breast density and the various ways that patients should ask questions to their health care providers, those with dense breast tissue, what are some of the questions that they should be asking, and what should patients with increased breast density know?  

Dr. Regina Hampton: 

One of the things I like to start out with letting people know is that breast density is not anything bad. It’s just normal breast tissue. And when we’re younger and our breasts are a little more perky and sitting up, we tend to have more density in the breast, which is great, because you’re perky and high, but mammograms are not the best when you have dense breast tissue. As we start to get more seasoned and the breasts start to go south, that’s actually when mammograms get better, so it’s really important for patients to look at their report and see what they’re saying about breast density, many times they will recommend that a woman come in for additional imaging, it could be an ultrasound, it could be additional mammograms, so it’s really important that women tune into that, and if they don’t understand, to be able to call the facility and ask questions. And I think the big thing is not to be afraid if they ask you to come back in, what I tell people is, “You know what? That just means somebody is looking at your mammogram, and it doesn’t mean that there’s anything bad, it means somebody was looking and saying, ‘We might need to look a little deeper and just make sure there’s not anything going on,’” so trying to eliminate that fear when they see that word, density.  

And if you get a normal mammogram, but you are feeling something abnormal, you need to ask some more questions and ask for more tests. 

What Steps Can Breast Cancer Patients Take To Be More Proactive?

What Steps Can Breast Cancer Patients Take To Be More Proactive? from Patient Empowerment Network on Vimeo.

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Transcript:

Dr. Nicole Rochester: 

Are there some other practices or key steps that patients can take so that they have a proactive approach in their healthcare and that they can feel more confident in voicing some of these concerns when they’re communicating with their healthcare team? 

Dr. Regina Hampton: 

I think it’s important to have a support person. And that could be a family member, it could be a neighbor, it could be your best friend. Doesn’t always have to be family, sometimes it’s better to have somebody who’s not family, because sometimes a family, they get you know they get emotionally involved and we get that, but I think it’s important to have another pair of ears because especially when you get a new diagnosis, you’re not going to hear everything, and I know patients. The second somebody says, cancer, breast cancer, pancreatic cancer, they just shut down. That’s it. They’re not going to hear. You could tell them, I have a million dollars for you, they’re not hearing you, they’re not going to follow the directions to go get that million dollars because they just have shut down, and even at that second visit, they still are just sort of…I call it the whomp, whomp, whomp. They see my mouth moving, but they’re not really hearing the words, but if they have another support person who can be there to record the conversation, who can take notes, even in the era of telemedicine, somebody can dial in to listen. I’ve been doing family meetings and people have been on the West Coast, or somebody couldn’t get off the work, but there was somebody there who could hear that information, I think that’s so important, and especially as we get more seasoned, Mom and Dad, sometimes they are a little in denial on the information that they can take in, but so important to be there in some form, and with telemedicine, it makes it quite easy to get another pair of ears in the room. 

Absolutely, you are speaking my language, Dr. Hampton, I’m telling you, because the other thing that I always recommend is for patients to have a buddy, and like you said, that may be a family member, it may be a best friend, it may be someone in your church, but I think the studies  say that something somewhere around 30 percent to 40 percent is all that we retain when we go to the doctor’s office, and so like you said, especially if you’re getting bad news, a lot of that information goes out of your brain, and so it’s so important to have a back-up person and that person can sit and take notes, and sometimes they can even remind you of some of the questions that you may have had or some of your concerns, I really, really appreciate you bringing that up.  

 I think it’s also important to take a deep breath, I find people get a cancer diagnosis and they want to just rush through everything. Well, in most cases, cancer doesn’t spread that fast, but there are a lot of decisions to make, and you really should take that time to hear all the options, may need to get a second or third opinion so that you really can make good decisions, you can’t make good decisions if you’re fearful, just can’t do it.  

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Transcript:

Dr. Nicole Rochester: 

Something that I see in my field is that most patients and family members are operating from obviously a non-medical viewpoint, and sometimes they just don’t even know what questions to ask, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of the treatment options that are available? 

Dr. Regina Hampton: 

So I think the good thing about many breast centers is that they do have what are called navigators, who really sit and hand-hold the patient through the process, and they sit and do one-on-one counseling, they try to find resources to help the patient get through treatment, they hold support groups, they really are a wealth of information and a nice go-between between the patient and the physician or the provider. So trying to find a comprehensive breast center where they have a whole program that’s dedicated to patient-centered care, I think is important. It’s also important that patients be empowered to go online, you can find what questions do I ask? Print it out and bring it to your appointment and ask those questions, and it may take a couple of visits to get those questions answered, but I think it’s important to get the questions answered. If you’re with a provider who is feeling like they don’t have time to answer or they’re blowing you off when you’re answering those questions, guess what? You can fire your doctor and go find another doctor and I don’t think we do that enough. 

I get on my patients and say, “You know what, you all scrutinize when you go buy shoes, when you go buy that cute dress, when you go buy that new car, but we should scrutinize our providers because they’re taking care of our most precious commodity, and that is our body.” 

Dr. Nicole Rochester: 

That is absolutely true. I have fired a couple of doctors in my day, and I recommended that some of my family members fired their doctors as well, so I really appreciate that coming from you, Dr. Hampton. And you touched on a little bit on what I’m going to ask next, and not really staying on this advocacy piece, we’ve talked about the importance of patients feeling empowered, and you shared a really good tip which I love, which is writing your questions down, it’s something that I frequently recommend to my clients and my friends and family members.  

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Transcript:

Dr. Nicole Rochester: 

Dr. Hampton, you mentioned that you in practice have seen differences in the way that your white patients handle their breast cancer diagnosis compared to your Black patients, and I was wondering if you’d be willing to expand on that just a little bit, what are some of those differences that you’ve seen between those two groups? 

Dr. Regina Hampton: 

So, I noticed that in the white women that I’ve diagnosed, that they just seem to take the diagnosis and are ready to jump on board, ready to move forward with treatment and figuring out what needs to be done. And I’ve found with my African American women, it just, it takes a little bit longer explaining, trying to get them to understand the how, the why, what we’re getting ready to do, and even with that explanation, there’s still some hesitancy. And so, I’m curious to know what is that and why is that? And really hear from the patient’s perspective.   

Dr. Nicole Rochester: 

That’s really interesting because, of course, right now in the midst of the pandemic, that just mirrors what we’re seeing with COVID-19 vaccination, and I wonder if what you’re seeing with your African American patients with breast cancer has to do with mistrust, and what we talked about just related to some of the history regarding the treatment of people of color by the health care system and racism and bias, do you think that there’s a level of mistrust of the healthcare system that may be playing into some of that reluctance that you’re seeing? 

Dr. Regina Hampton: 

Absolutely, absolutely, yes. And I’d just be curious to just hear from that patient perspective, I think a lot of those things, as we saw in the pandemic, we carry those things even though so much has changed from back in the day. So, it’s going to be interesting to hear that from the patient perspective and then to be able to hopefully share that information, and I think it could translate, as you were mentioning in to other areas of health, and see if we could then take that to a broader audience and try and make a difference in these disparities. 

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Transcript:

Dr. Nicole Rochester:

You alluded to the different care sometimes that patients of color receive. So I want to shift and talk about racial and ethnic inequities, and unfortunately, we know that with every other illness, unfortunately similarly with breast cancer, there’s a long history of women, particularly in BIPOC communities receiving disparate care, a lot of times they are not offered some of these treatment options, maybe they don’t have access to some of the breast cancer centers, so can you just share some information about some of the disparities that we see, in breast cancer? And then I’m curious to know how you specifically address them being a Black woman breast surgeon 

Dr. Regina Hampton: 

So, one of the things to know is that as African American women, we tend to get breast cancer at younger ages, and not a lot of physicians know and can recognize that, so it is very important that when a young African American woman has a breast complaint that that’s taken seriously and worked up to make sure that we’re not missing a breast cancer. So, I think it’s important again to have those conversations talking about family history, because we don’t talk about family history, in our families. I’ve had a patient just come in and say, Yeah, well, grandma had a breast missing, no no nobody said cancer, well they probably should’ve said cancer, so we’ve gotta have those health conversations in our family, so I think it’s important for patients to really be their advocate because many times these young women are dismissed and thought, “Oh, you’re too young,” and I’ve even been kind of fooled myself by some of the young women, so knowing that younger women get breast cancer at younger ages, if you think something is going on, you need to really take that seriously. And then I think it’s also talking about the options, we do tend to get a more aggressive form of breast cancer, but the treatments have changed, and while chemotherapy may be indicated for many patients, it’s not for all patients, and so really taking that time to understand what all the options are, “Well, why are you recommending chemotherapy? What’s going to be the benefit for me? What’s the survival benefit for me? What are the side effects? How this going to affect my sex life? How is this going to affect me and my relationship with my children, with work?” 

So really just asking all of those important questions, I think it’s also important to ask for what you want. I don’t think we speak up enough, there was actually a study that I was looking out that shows that we don’t get offered reconstruction as often as our white counterparts. The disparity is about 24 percent, and that’s really huge. That’s important. So, we really need to ask those questions and to know, well, maybe I can’t get reconstruction at this juncture, but can I get it in the future, there’s a federal law that covers all of those for all breast cancer patients, no matter what color you are, so again, it’s just asking those questions. Sometimes taking somebody and having somebody else ask the questions can be helpful. 

Dr. Nicole Rochester: 

Yeah, making somebody else the bad guy, so to speak. Absolutely, any time I have a conversation about health disparities and health and inequities, honestly, I get a little angry inside because for you to share that statistic that we’re not as often offered reconstructive surgery, that is a huge part of our identity as women. Our appearance, our self-esteem, and I just want to point out for our viewers that unfortunately, as Dr. Hampton has stated. A lot of times, these disparities are sometimes due to lack of knowledge, so Dr. Hampton mentioned that Black women tend to get breast cancer at a younger age, and you need to know that if you’re seeing a breast surgeon or even an internist or oncologist who is not a person of color or who is not up-to-date on that information, they may not know those statistics, but unfortunately, there also is this bias that you’ve talked about as well, and we know that we all have bias, we are exposed regularly to negative images, negative stereotypes of African Americans, Latino, Native Americans, and doctors are not immune to that bias and we carry those biases into the exam room, and so for people of color with breast cancer, it is particularly important that you follow these recommendations that Dr. Hampton has mentioned, and I just love that really all of them center around advocacy and speaking up for yourself and standing up for yourself. Are there any other things, Dr. Hampton in closing that you can think of specifically for patients of color, things that they can do to really protect themselves from these inequities that exist in breast cancer care. 

 Dr. Regina Hampton: 

I think we have to really start at the beginning and being more proactive about our screening, making sure that we’re getting those mammograms, making sure that when we get a mammogram, we’re asking for the best mammogram if there’s new 3D technology, making sure that you get that so that we can find things at an earlier stage, and I think also we have to call it kind of throw out all the myths. We got to let them go people, we got to let them go. And I know there have been some challenges and we have had some historical issues, I think Dr. Rochester and I both agree and acknowledge that, but at some point, we have to move forward and be more proactive and really knock down some of those barriers and not let some of those old things that happen hold us back from the new technologies that are available. So, I think the good thing, we’re in a day and age where most early-stage cancers are not a death sentence and we find them early, we can treat them early, and I think we have to just talk in our community, I’m always amazed that many Black women still don’t share their stories. 

So, you have women who are in the same circle and don’t realize that the person two seats down went through breast cancer, and you all still go to coffee, and she didn’t share her story. And now you’re facing breast cancer, you’re thinking, “Wow, I’m just alone.” And so, I think we have to really share that, not only in our families, but we’ve got to share it with our sisters, because you never know who you’re going to be helping through that journey. I find it interesting that there’s really a difference between how African American women take a breast cancer diagnosis and white women take a breast cancer diagnosis, and we’re getting ready to really look at this, and I’m really excited about it because I really want to know what is it and why is there such a difference? But I think we have to not hide, we have to really share our stories, and sharing your story is going to help somebody else. 

Dr. Nicole Rochester: 

Absolutely, I think part of the hiding and even what you mentioned about the family history not being shared as part of this kind of myth that we have to be strong or that Black women are invincible and that we can’t be vulnerable. And you’re absolutely right, we need to talk about this in our circles, we need to talk about it with our daughters or nieces, all of our family members, so that we’re all educated and empowered.  

Dr. Regina Hampton: 

It’s funny you mentioned that because that’s one of the first things I tell patients to do. I say, “Look, you’ve got to let other people take over, because we’ve got work to do, and kids have got to eat peanut butter and jelly, they’ve just got to eat some peanut butter and jelly, they’ll be all right, but you’ve got to put yourself first.” And I think if we put ourselves first, put our screenings first, we’re good about getting our kids, getting them to their health appointments, we as women have got to get ourselves to our health appointments and put ourselves first, so that we can be there for our families. 

Dr. Nicole Rochester: 

You just reminded me of something we as women, are really good at taking care of our kids and our spouses and other members of our family, but then we do that at the expense of ourselves, and I can say when I used to practice as a pediatrician, we were trained to address postpartum moms, and people realize early on that, hey, okay, they may not have their postpartum visit for six weeks, but they’re taking that baby to the pediatrician in two or three days, and so we would talk with the postpartum moms about screening them for depression and things of that nature, but I never thought about…you literally just gave me this idea that maybe pediatricians should also be checking in with our patients’ moms and asking them about their screening, I don’t know if they would be offended by that, but it truly takes a village, and so maybe we need to be encouraging the parents of our patients and making sure that they’re getting their regular screenings and their health maintenance as well, because you’re right, we will look out for the babies, and we will put ourselves on that back burner every single time. 

How Can I Get the Best Breast Cancer Care No Matter Where I Live?

How Can I Get the Best Breast Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can all breast cancer patients get the best treatment no matter where they live? Watch as experts Dr. Nicole Rochester and Dr. Regina Hampton discuss the importance of being comfortable with your own care. Learn about how to find a comprehensive breast center dedicated to patient-centered care and staying in the know regarding your treatment options.

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Transcript:

Nicole Rochester: 

Hello and welcome. My name is Dr. Nicole Rochester, I’m a pediatrician, health advocate and speaker, and the host for today’s Patient Empowerment Network program. Today we’re gonna be talking about how breast cancer patients can truly get the best care no matter where they live. And what does getting the best breast cancer care no matter where you live actually mean? The answer revolves around awareness, gaining access and connecting to resources at the right time, we are so happy that you have tuned in as we dig deep to understand what the barriers are, get expert advice on how to overcome them and gain clarity on your path to empowerment. Please remember, this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on what the best options may be for you. It is my honor and privilege to be joined by Dr. Regina Hampton, Medical Director of the Breast Center at Luminous Health Doctors Community Hospital. 

Dr. Hampton has dedicated her life to helping women fight breast cancer. Thank you for joining us, Dr. Hampton.  

Dr. Regina Hampton: 

Thank you for having me. Looking forward to a great conversation. 

Dr. Nicole Rochester: 

So we’re gonna start by discussing some of the barriers to breast cancer care. Now we know that some barriers to care include things like geographic, distance to services, financial hardships, access to transportation, and more. So my first question for you, Dr. Hampton is, what are the common barriers breast cancer patients and their families face when seeking care, what are the issues that our patients and families are facing? So 

Dr. Regina Hampton: 

I think one of the big issues is having access to a breast center, so a multidisciplinary breast center, and so they tend to be in sort of in larger cities, sort of downtown, and many minority communities in these days can’t afford to live downtown, so they’re living on the outskirts, so they may… While they may have great doctors there, many times those doctors may not be up on the latest and the greatest, they may not have access to clinical trials, and so that really truly is a barrier in that sometimes our minority patients may get sub-optimal care. 

Dr. Nicole Rochester: 

That’s very concerning. I’m glad that you brought that up, that we’re not disparaging the doctors that practice in those settings, but what you said is really important that they may not have access to some of those up-to-date clinical trials and things that we may see an academic centers, so thank you for bringing that to our attention. If we start to talk about treatment access, I want to focus on access to quality treatment, and you just kind of alluded to that, in addition to the geographical barriers, we know that sometimes patients have limited access to quality breast cancer care due to their own gaps in knowledge and studies show that patients who are knowledgeable and engaged in their healthcare received better care, so can you speak to what we have learned specifically if we talk about breast density and the various ways that patients should ask questions to their health care providers, those with dense breast tissue, what are some of the questions that they should be asking and what should patients with increased breast density know?  

Dr. Regina Hampton: 

One of the things I like to start out with letting people know is that breast density is not anything bad. It’s just normal breast tissue and when we’re younger and our breasts are a little more perky and sitting up, we tend to have more density in the breast, which is great, ’cause you’re perky and high, but mammograms are not the best when you have dense breast tissue. As we start to get more seasoned and the breast start to go south, that’s actually when mammograms get better, so it’s really important for patients to look at their report and see what they’re saying about breast density, many times they will recommend that a woman come in for additional imaging, it could be an ultrasound, it could be additional mammograms, so it’s really important that women tune into that, and if they don’t understand, to be able to call the facility and ask questions. And I think the big thing is not to be afraid if they ask you to come back in, what I tell people is, You know what? That just means somebody is looking at your mammogram, and it doesn’t mean that there’s anything bad, it means somebody was looking and saying, We might need to look a little deeper and just make sure there’s not anything going on, so trying to eliminate that fear when they see that word, density. 

And if you get a normal mammogram, but you are feeling something abnormal, you need to ask some more questions and ask for more tests. 

Dr. Nicole Rochester:

Thank you. That’s extremely important. Something that I see in my field is that most patients and family members are operating from obviously a non-medical viewpoint, and sometimes they just don’t even know what questions to ask, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of the treatment options that are available? 

Dr. Regina Hampton:

So I think the good thing about many breast centers is that they do have what are called navigators, who really sit and hand-hold the patient through the process, and they sit and do one-on-one counseling, they try to find resources to help the patient get through treatment, they hold support groups, they really are a wealth of information and a nice go between between the patient and the physician or the provider. So trying to find a comprehensive breast center where they have a whole program that’s dedicated to patient-centered care, I think is important. It’s also important that patients be empowered to go online, you can find what questions do I ask? Print it out and bring it to your appointment and ask those questions, and it may take a couple of visits to get those questions answered, but I think it’s important to get the questions answered. If you’re with a provider who is feeling like they don’t have time to answer or they’re blowing you off when you’re answering those questions, guess what? You can fire your doctor and go find another doctor and I don’t think we do that enough.  

I get on my patients and say, You know what, you all scrutinize when you go buy shoes, when you go buy that cute dress, when you go buy that new car, but we should scrutinize our providers ’cause they’re taking care of our most precious commodity, and that is our body. 

Dr. Nicole Rochester: 

That is absolutely true. I have fired a couple of doctors in my day, and I recommended that some of my family members fired their doctors as well, so I really appreciate that coming from you, Dr. Hampton. And you touched on a little bit on what I’m gonna ask next, and not really staying on this advocacy piece, we’ve talked about the importance of patients feeling empowered, and you shared a really good tip which I love, which is writing your questions down, it’s something that I frequently recommend to my clients and my friends and family members. Are there some other practices or key steps that patients can take so that they have a proactive approach in their healthcare and that they can feel more confident in voicing some of these concerns when they’re communicating with their healthcare team.  

Dr. Regina Hampton: 

I think it’s important to have a support person. And that could be a family member, it could be a neighbor, it could be your best friend. Doesn’t always have to be family, sometimes it’s better to have somebody who’s not family, ’cause sometimes a family, they get you know they get emotionally involved and we get that, but I think it’s important to have another pair of ears because especially when you get a new diagnosis, you’re not gonna hear everything, and I know patients. The second somebody says, cancer, breast cancer, pancreatic cancer, they just shut down. That’s it. They’re not gonna hear. You could tell them, I have a million dollars for you, they’re not hearing you, they’re not gonna follow the directions to go get that million dollars ’cause they just have shut down, and even at that second visit, they still are just sort of… I call it the whomp, whomp, whomp. They see my mouth moving, but they’re not really hearing the words, but if they have another support person who can be there to record the conversation, who can take notes, even in the era of telemedicine, somebody can dial in to listen. I’ve been doing family meetings and people have been on the West Coast, or somebody couldn’t get off the work, but there was somebody there who could hear that information, I think that’s so important, and especially as we get more seasoned, Mom and Dad, sometimes they are a little in denial on the information that they can take in, but so important to be there in some form, and with telemedicine, it makes it quite easy to get another pair of ears in the room. 

Absolutely, you are speaking my language, Dr. Hampton, I’m telling you, ’cause the other thing that I always recommend is for patients to have a buddy, and like you said, that may be a family member, it may be a best friend, it may be someone in your church, but I think the study say that something somewhere around 30% to 40% is all that we retain when we go to the doctor’s office, and so like you said, especially if you’re getting bad news, a lot of that information goes out of your brain, and so it’s so important to have a back-up person and that person can sit and take notes, and sometimes they can even remind you of some of the questions that you may have had or some of your concerns, I really, really appreciate you bringing that up. 

So, I’m sorry, if I may just add another thing, I think it’s also important to take a deep breath, I find people get a cancer diagnosis and they wanna just rush through everything. Well, in most cases, cancer doesn’t spread that fast, but there are a lot of decisions to make, and you really should take that time to hear all the options, may need to get a second or third opinion so that you really can make good decisions, you can’t make good decisions if you’re fearful, just can’t do it. 

Dr. Nicole Rochester: 

That is so true. Oh, I’m just loving this conversation. Thank you. That is so very important. So we know that all the barriers that we’ve talked about so far can impact or limit treatment options, and sometimes that can lead to additional complications, so we talked about patients should ask questions, and I wholeheartedly support that. As a breast surgeon, can you share with us what are some key questions that patients with breast cancer should be asking their team at the beginning of their diagnosis? 

Dr. Regina Hampton: 

I think it’s important to understand the type of cancer that you have, is it non-invasive, is it invasive, it’s important to know the characteristics of the tumor, is this a hormone-driven tumor, is in a non-hormone-driven tumor or triple negative tumor? And then to ask in each step, with each discipline with surgery, finding out what are the pros and cons of a lumpectomy versus a mastectomy, when you get to the medical oncologist, finding out the pros and cons of chemotherapy versus hormone therapy, or doing both. How is that delivered? How is this gonna affect my daily life? Can I still work if I’m getting chemotherapy? What happens when I get radiation? And what are the options? So I think it’s just really important to, I’d say, go online and find a list of questions or a lot of great organizations out there that have pointed questions that you should ask each step of the way, many times the navigators will give you booklets and things to read that, have questions. And I think don’t be afraid to turn one visit into two or even three visits to make sure that you’re understanding the options. 

I’m always troubled when I see patients who maybe years ago might have had some options, but they just rushed through and decided maybe to do mastectomy and they say, You know what, had I really just stopped and thought about it, I might have made a different decision. So I think it’s very important, and I feel as the provider, the provider really should know how to read the room and really be able to pick up on the fact that you know what, she’s just not here today, and so… I’m gonna stop talking. I’m gonna send her away, let her digest this and we’re gonna come on back so we can have another conversation, and I think as providers, we have to not be afraid, and I know it’s hard ’cause time is tied. And we’re trying to see as many patients, but it’s really important to understand that every patient may need something a little bit different, and really trying to hone in on that, I think is really important as a provider, and making sure that you’re heard because a lot of times I think women of color, men of color as well, are not really heard by the doctor, and many of the doctors come in with their own biases and think, Oh well, she’s young, she’s automatically gonna want a mastectomy or she’s old, we’re gonna go ahead with a mastectomy, well, it’s a matter of really listening to the patient and seeing how you can meet in the middle, and if the patient has to get a treatment that they’re not really keen on getting, but you know it’s the right thing to do. 

Again, it’s just having that conversation and dialogue so that they understand your reasoning. 

Dr. Nicole Rochester: 

Thank you. So, Dr. Hampton, it is evident during this interview, and of course, I also know you personally and professionally, and you have certainly built a reputation of being a compassionate provider, clearly you are very committed to communicating with your patients, but the reality is not all of our colleagues are like Dr. Hampton. And so I’m thinking about something you said about really kind of pushing back, so to speak, sometimes we have to push back in a polite way with our health care providers, and you mentioned maybe the woman is being faced or the man with treatment recommendations and maybe they have some concerns about that, and I know that not every patient feels comfortable disagreeing with their doctor or even engaging in a dialogue where they wanna actually have more conversation. So many people, even in 2021, adopt a paternalistic relationship with their doctor where the doctor says, do this, and then they do it. And so is there any advice that you can give our listeners our watchers, for when they’re in that situation with their breast surgeon or their oncologist, and they’re just not feeling comfortable, they don’t feel like all of the treatment options are being presented, are there any tips that you can provide for that? 

Dr. Regina Hampton: 

And in those cases, it’s important to go and get a second opinion, it doesn’t mean that you’re saying that that doctor is not a great doctor, you just may wanna hear the information. It could be the same information, just presented it in a different way. All of us kind of explain things a little bit differently, and so I think getting a second opinion is important, and if your first doctor is offended that you’re getting a second opinion, you should fire that doctor. I tell my patients like, this is not my journey, this is not about me, this is really about you. Where do you wanna go? We will help you get there, we’ll help you get the appointment, ’cause I think it’s important for patients to have that information, so feel empowered and realize you can ask questions of the doctor, we’ve changed medicine and that… It’s a patient-centered approach. It’s not me. The doctor, I know all it’s… you may come in with a new study, let’s talk about it, and if you don’t have a doctor who’s open to hearing that information, then that might not be the doctor for you. 

Dr. Nicole Rochester: 

Absolutely love that, absolutely love that. Yes, we have to have that type of relationship with our patients where we’re making joint decisions where the patient and their family members are truly brought in as members of the healthcare team. I really, really appreciate that. I wanna shift to… You mentioned this as well, you alluded to the different care sometimes that patients of color receive, so I wanna shift and talk about racial and ethnic inequities, and unfortunately, we know that with every other illness, unfortunately similarly with breast cancer, there’s a long history of women, particularly in BIPOC communities receiving disparate care, a lot of times they are not offered some of these treatment options, maybe they don’t have access to some of the breast cancer centers that you alluded to the beginning, so can you just share some information about some of the disparities that we see, in breast cancer? And then I’m curious to know how you specifically address them being a black woman breast surgeon 

Dr. Regina Hampton: 

So one of the things to know is that as African-American women, we tend to get breast cancer at younger ages, and not a lot of physicians know and can recognize that, so it is very important that when a young African-American woman has a breast complaint that that’s taken seriously and worked up to make sure that we’re not missing a breast cancer. So I think it’s important again to have those conversations talking about family history, ’cause we don’t talk about family history, in our families. I’ve had a patient just come in and say, Yeah, well, grandma had a breast missing, no no nobody said cancer, well they probably should’ve said cancer, so we’ve gotta have those health conversations in our family, so I think it’s important for patients to really be their advocate because many times these young women are dismissed and thought, Oh, you’re too young, and I’ve even been kind of fooled myself by some of the young women, so knowing that younger women get breast cancer at younger ages, if you think something is going on, you need to really take that seriously. And then I think it’s also talking about the options, we do tend to get a more aggressive form of breast cancer, but the treatments have changed, and while chemotherapy may be indicated for many patients, it’s not for all patients, and so really taking that time to understand what all the options are, well, why are you recommending chemotherapy, what’s gonna be the benefit for me, what’s the survival benefit for me, what are the side effects, how this going to affect my sex life, how is this going to affect me and my relationship with my children, with work?  

So really just asking all of those important questions, I think it’s also important to ask for what you want. I don’t think we speak up enough, there was actually a study that I was looking out that show that we don’t get offered reconstruction as often as our white counterparts. The disparity is about 24% and that’s really huge. That’s important. So we really need to ask those questions and to know, well, maybe I can’t get reconstruction at this juncture, but can I get it in the future, there’s a federal law that covers all of those for all breast cancer patients, no matter what color you are, so again, it’s just asking those questions. Sometimes taking somebody and having somebody else ask the questions can be helpful. 

Dr. Nicole Rochester: 

Yeah, making somebody else the bad guys, so to speak. Absolutely, any time I have a conversation about health disparities and health and equities, honestly, I get a little angry inside because for you to share that statistic that we’re not as often offered reconstructive surgery, that is a huge part of our identity as women. Our appearance, our self-esteem, and I just wanna point out for our viewers that unfortunately, as Dr. Hampton has stated. A lot of times, these disparities are sometimes due to lack of knowledge, so Dr. Hampton mentioned that black women tend to get breast cancer at a younger age, and you need to know that if you’re seeing a breast surgeon or even an internist or oncologist who is not a person of color or who is not up-to-date on that information, they may not know those statistics, but unfortunately, there also is this bias that you’ve talked about as well, and we know that we all have bias, we are exposed regularly to negative images, negative stereotypes of African-Americans, Latino, Native Americans, and doctors are not immune to that bias and we carry those biases into the exam room, and so for people of color with breast cancer, it is particularly important that you follow these recommendations that Dr. Hampton has mentioned, and I just love that really all of them center around advocacy and speaking up for yourself and standing up for yourself. Are there any other things, Dr. Hampton in closing that you can think of specifically for patients of color, things that they can do to really protect themselves from these inequities that exist in breast cancer care. 

Dr. Regina Hampton: 

I think we have to really start at the beginning and being more proactive about our screening, making sure that we’re getting those mammograms, making sure that when we get a mammogram, we’re asking for the best mammogram if  there’s new 3D technology, making sure that you get that so that we can find things at an earlier stage, and I think also we have to call it kinda throw out all the myths. We go to let them go people, we got to let them go. And I know there have been some challenges and we have had some historical issues, I think Dr. Rochester and I both agree and acknowledge that, but at some point we have to move forward and be more proactive and really knock down some of those barriers and not let some of those old things that happen hold us back from the new technologies that are available. So I think the good thing, we’re in a day and age where most early stage cancers are not a death sentence and we find them early, we can treat them early, and I think we have to just talk in our community, I’m always amazed that many black women still don’t share their stories. 

So you have women who are in the same circle and don’t realize that the person two seats down went through breast cancer and you all still go to coffee and she didn’t share her story, and now you’re facing breast cancer, you’re thinking, Wow, I’m just alone. And so I think we have to really share that, not only in our families, but we’ve got to share it with our sisters, because you never know who you’re gonna be helping through that journey. I find it interesting that there’s really a difference between how African-American women take a breast cancer diagnosis and white women take a breast cancer diagnosis, and we’re getting ready to really look at this, and I’m really excited about it ’cause I really wanna know what is it and why is there such a difference? But I think we have to not hide, we have to really share our stories and sharing your story is gonna help somebody else. 

Dr. Nicole Rochester: 

Absolutely, I think part of the hiding and even what you mentioned about the family history not being shared as part of this kind of myth that we have to be strong or that black women are invincible and that you we can’t be vulnerable. And you’re absolutely right, we need to talk about this in our circles, we need to talk about it with our daughters or nieces, all of our family members, so that we’re all educated and empowered.  

Dr. Regina Hampton: 

It’s funny you mentioned that ’cause that’s one of the first things I tell patients to do. I say, Look, you got to let other people take over, ’cause we got work to do, and kids got to eat peanut butter and jelly, they just got to eat some peanut butter and jelly, they’ll be all right, but you’ve got to put yourself first, and I think if we put ourselves first, put our screenings first, we’re good about getting our kids, getting them to their health appointments, we as women have got to get ourselves to our health appointments and put ourselves first, so that we can be there for our families.  

Dr. Nicole Rochester: 

You just reminded me of something we as women, are really good at taking care of our kids and our spouses and other members of our family, but then we do that at the expense of ourselves, and I can say when I used to practice as a pediatrician, we were trained to address postpartum moms, and people realize early on that, Hey, okay, they may not have their postpartum visit for six weeks, but they’re taking that baby to the pediatrician in two or three days, and so we would talk with the postpartum moms about screening them for depression and things of that nature, but I never thought about… You literally just gave me this idea that maybe pediatricians should also be checking in with our patients, moms and asking them about their screening, I don’t know if they would be offended by that, but it truly takes a village, and so maybe we need to be encouraging the parents of our patients and making sure that they’re getting their regular screenings and their health maintenance as well, because you’re right, we will look out for the babies and we will put ourselves on that back burner every single time. 

Dr. Hampton, you mentioned that you in practice have seen differences in the way that your white patients handle their breast cancer diagnosis compared to your black patients, and I was working… If you’d be willing to expand on that just a little bit, what are some of those differences that you’ve seen between those two groups? 

So I noticed that in the white women that I’ve diagnosed, that they just seem to take the diagnosis and are ready to jump on board, ready to move forward with treatment and figuring out what needs to be done. And I’ve found with my African-American women, it just, it takes a little bit longer explaining, trying to get them to understand the how, the why, what we’re getting ready to do, and even with that explanation, there’s still some hesitancy. And so I’m curious to know what is that and why is that? And really hear from the patient’s perspective.  

That’s really interesting because of course, right now in the midst of the pandemic, that just mirrors what we’re seeing with COVID-19 vaccination, and I wonder if what you’re seeing with your African-American patients with breast cancer has to do with mistrust, and what we talked about just related to some of the history regarding the treatment of people of color by the health care system and racism and bias, do you think that there’s a level of mistrust of the healthcare system that may be playing into some of that reluctance that you’re seeing? 

Dr. Regina Hampton: 

Absolutely, absolutely, yes. And I’d just be curious to just hear from that patient perspective, I think a lot of those things, as we saw in the pandemic, we carry those things even though so much has changed from back in the day. So it’s gonna be interesting to hear that from the patient perspective and then to be able to hopefully share that information, and I think it could translate, as you were mentioning in to other areas of health, and see if we could then take that to a broader audience and try and make a difference in these disparities.  

Dr. Nicole Rochester: 

That is awesome. Well, this has been an amazing conversation, Dr. Hampton, just to summarize, what you and I have talked about, you talked about the importance of really advocating for yourself, which as a professional health advocate, that just has me bouncing up and down in my seat, but you’ve talked about the importance of being educated and knowledgeable and looking for the information, you mentioned that there are some good resources on the internet where we can actually find questions that we should ask when we go to see our doctor after a breast cancer diagnosis, you’ve talked the importance of making sure that it’s a team effort and that if we are seeing a position who is not centering our concerns and our needs, if we don’t feel like we’re being heard, if we feel like we’re being dismissed or rushed, that we can and should consider either getting a second opinion and or firing that doctor. And getting another doctor all together, which I fully support, we’ve talked about bringing in a buddy, whether that’s your family member, your best friend, your neighbor, someone at your church, but someone that you trust and who can really sit there with you at those medical appointments and be your eyes and ears, we talked about the fact that patients with the new diagnosis of cancer, of course, are overwhelmed, they’re not hearing a lot of the information, so having that buddy to be able to ask questions on your behalf, to be able to take notes on your behalf is extremely important. 

And we also talked about some of the disparities and that unfortunately, women of color, men of color with breast cancer sometimes don’t receive the same care that they maybe do to access issues, but it also may be due to bias among the providers that are treating us or lack of knowledge about the differences and how breast cancer presents in people of color, and again, the importance having that knowledge, the importance of being educated and being empowered to speak up and to ask questions, so I just appreciate all of this advice, I’m sure that those of you watching have gotten so many pearls from Dr. Hampton, so we want to thank you again for tuning in to the Patient Empowerment Network program. Again, I’m Dr. Nicole Rochester, thank you so much for joining us, Dr. Hampton, it was a pleasure, thank you for having this conversation with me today.  

Dr. Regina Hampton: 

Thank you. 

Tools for Living with Cancer and COVID-19

Tools for Living with Cancer and COVID-19 from Patient Empowerment Network on Vimeo

Breast Cancer Network Manager Mary Leer highlights the importance of a previous interview with Dr. Shaji Kumar focused on COVID-19 and cancer. In the original interview, Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns, vaccine concerns are also addressed and key factors are given for cancer patients, survivors, and care partners.  

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Transcript:

Mary Leer:

Hello, my name is Mary Leer, and I am the Patient Empowerment Network’s [PEN’s] Network Manager for the Breast Cancer Network.  

 As PEN’s Breast Cancer Network Manager, I was proud to sit down with noted Mayo Clinic expert, Dr. Shaji Kumar. The interview helped me think deeply about my own experience as a cancer survivor and how it relates to my experience living through the pandemic that is still around us all. As cancer patients, we’ve had to live with multiple uncertainties and make decisions that can quite literally and figuratively be painful. We’ve had to make decisions about cancer treatment with our medical team, and we’ve had to deal with the fact that it is in our own best interest to at times take a path that we do not want to take in the name of healing ourselves and living a healthier life. We have learned to live with options and making choices with outcomes that are not certain, our experience and roles as survivors and as caregivers can make it hard sometimes difficult to understand the decisions of others who are hesitant or resistant to getting a vaccine. So I listened and learned from Dr. Kumar discussion about the importance of getting vaccinated to reach a significant percentage of our population. He shows compassion for those whose fear of the pandemic has led them to a decision to turn away from getting vaccinated, perhaps out of fear, distrust of medicine and anger about government impinging on personal rights, or perhaps, of course, their own personal health journey, please implore others to listen to the interviews Jeff and I did with Dr. Kumar. 

Dr. Kumar gave us very clear advice.  He answers many of the questions about COVID-19 that cancer patients, and our community have been asking and frankly worrying about. As you listen to the interviews on PEN’s website, you will hear his voice of reason, make it clear how critical it is for cancer patients, indeed all of us to get vaccinated for the sake of our own and for others’ health. As he states there are uncertainties about aspects of vaccination, such as the strength and length of one’s individual protective immune response, but the bottom line is that cancer patients especially need to be vaccinated to protect their health, even if one is well post-treatment. If still in cancer treatment or if one has had the COVID-19 illness, he told us to discuss the optimum time to get vaccinated with your medical team. He truly gave a clear message that there is solid evidence for the efficacy, safety of approved covid vaccines. Listen carefully and share Dr. Kumar’s interview responses with your cancer community and with your family. His answers address lingering questions my family and I had about COVID and cancer, the bottom line, these interviews with Dr. Kumar are once again, a way of giving us the tools to compassionately help ourselves and others through this COVID-19 health crisis. 

How Has Cancer Research Evolved in Light of the COVID-19 Pandemic?

How Has Cancer Research Evolved in Light of the COVID-19 Pandemic? from Patient Empowerment Network on Vimeo

What have been some benefits for cancer research during the COVID-19 pandemic? Expert. Dr. Shaji Kumar describes some of the clinical trial changes that have been born from the pandemic to improve access to care and to decrease the risk of infection for cancer patients.

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Transcript:

Mary Leer:

Are there any noticeable trends born out of the pandemic that will be or could be a benefit to the future of cancer care or research?

Dr. Shaji Kumar:

That’s a very important question, and I think we always learn from adversity, and I think this is going to be no different. I think, especially when the pandemic hit back in the spring of last year, we all had to think fast on our feet to figure out how best to continue to tell about the best care for the cancer patients without compromising the care in any way. And we knew that bringing the patients back into the clinic at the same rate we did before the pandemic would expose them to significant risk for infection, so how do we continue with treatment? There have been very different things people have tried…one of them is to try and get the medications to patients at home. If they are on IV medications, they can be changed to something that’s comparable that can be given by mouth. We already did that for some patients. For some patients who used to come to the clinic very often, so we figure out is there a way for them to get some of those testing done in a clinic much closer to home, so they can avoid the travel, they can avoid being in a bigger city, they can avoid being in a bigger institution, again, reducing the risk of exposure, and then you look at those numbers and then decide on the next course of treatment. We converted many of the clinic visits to video visits. Nothing is as good as having the patient right in front of you, but this is the best we could do under the circumstances.

And I think that helped. So I think the clinical trials was a big problem because in many of those trials were done in a very rigid fashion with very little variability allowed within the protocols. And everybody loosened from the clinical trial sponsors, the pharmaceutical companies, the institutional review board, the investigators to try and build flexibility into those clinical trial structures to allow patients to continue to be on those trials, So what does that mean for the future? I think the video visits are here to stay, I think we will continue to utilize that and bring patients back to the clinic only when it’s absolutely needed. I think the clinical trials will have in-built flexibility so that patients can enroll on clinical trials remotely, they can potentially be given some of those medications at home, maybe it would be something where we would check into the patients on a regular basis to make sure things are proceeding in the right way. I think there are increasingly technologies that will allow the patients to communicate in real time with the care team and also provide many of the data that we need through iPads or iPhones, Apple watches, whatever we end up using.

So that is that I think that technology will rapidly take off in the next few years. So I think a lot of the care of the patients with cancer in general, and particularly cancer patients, is going to look very different five years from now, because of all these things that we have always thought of and we thought, “Yeah it will take time to implement, it’s difficult.” Now we figure it out in a year. We can do a lot of those things.

Jeff Bushnell:

What’s the final takeaway for the average cancer patient and caregiver, how to get through this? What’s your bottom line for us all?

Dr. Shaji Kumar:

Your cancer treatment comes first, let’s not compromise on it, let us do it as safe as we can by observing all the instructions in terms of social distancing, masking, avoiding gatherings, getting vaccinated, and make sure you keep connected with your care team. You don’t have to be in the clinic to do that. There’s a variety of different tools, I think every hospital has options to either through their medical records to message their care team, or set up video visits and so forth.

So we want to be in a state where it was before the pandemic in terms of your communications, but use the technology, so we can decrease the risk of exposure without compromising the quality of care.

Should Cancer Patients Get COVID-19 Vaccines If They’ve Tested Positive for Antibodies or the Virus?

Should Cancer Patients Get COVID-19 Vaccines If They’ve Tested Positive for Antibodies or the Virus? from Patient Empowerment Network on Vimeo

What are the recommendations for cancer patients on COVID-19 vaccines if they’ve tested positive for COVID-19 antibodies or the virus? Expert Dr. Shaji Kumar shares current vaccine recommendations for cancer patients.

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Transcript:

Mary Leer:

Here’s a question many cancer patients are unclear about if antibodies are present or if I have tested positive before, “Should I still get the vaccine?”

Dr. Shaji Kumar:

I know the recommendation right now is to go ahead and get the vaccine, partly because we don’t know the natural immunity from the infection, how long does it last. So it seems like the antibodies can start to wane off the infection. And again, we don’t have a lot of data on it, but it looks 3 to 6 months, it might start waning at least to the level that they can detect. Now, whether that is sufficient or even the undetectable levels is protective against a future infection, we don’t know. There have been some reports of people getting a second infection even though they have been infected before again, scattered reports, we don’t know how widespread that phenomenon is going to be, so given all these, I think the current recommendation would be to go ahead and get vaccinated. We generally tell people to wait for two to three months after the infection to go ahead with the vaccination.

Jeff Bushnell:

Is the idea of pre-screening, especially for cancer patients, maybe who may be at risk to see whether they have antibodies be an effective thing to decide which vaccine they should get? What are your thoughts on that?

Dr. Shaji Kumar:

You look at the Moderna and the Pfizer trials, and they said, now over 90 percent effective. Look at the AstraZeneca trials, you know, it’s like they recorded 70 to 80, 85 percent, and the J&J about 80 to 90 percent effective. Do these numbers mean much? It’s really hard to know, I think, partly because they have been tested in, again, different countries, different times, as the virus was continually changing its characteristics. So one could argue that maybe the vaccines that were tested later on when this will be some of the mutants were already there might be more effective, but we don’t know.

I think at the end of the day, 80 versus 90 is not something we would decide a vaccine on. The fact that, yes, if something was only 10 percent effective versus 90 percent, it’s a probably different story. So based on the numbers we have seen, I would say whatever you can get to first, if you don’t want to get jabbed twice, maybe you go with something that goes, it’s only one dose, but that may be the only distinguishing factor here, but nevertheless, I think we have to just get the vaccination, the first vaccine that we can get our hands on.