Women Patient Stories Archives

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

Part 1

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part I from Patient Empowerment Network on Vimeo.

In this part one of three, Lori Sackett shares the journey of her multiple myeloma. She explains some of the symptoms she was facing before diagnosis to having to advocate to receive next-generation sequencing testing.

Part 2

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part II from Patient Empowerment Network on Vimeo.

 In this segment of Lori’s story, Lori and her daughter discuss the importance of seeing a myeloma specialist, having a good support network, and the role her daughter played in Lori’s care.

Part 3

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part III from Patient Empowerment Network on Vimeo.

Lori and her daughter share their biggest takeaways and pieces of advice for other newly diagnosed myeloma patients and their care parters/advocates.

Myeloma patient, Lori’s advice:

  1. Insist on seeing a myeloma specialist
  2. Take care of yourself physically and emotionally
  3. Look for people/support and allow them to help you
  4. Live for now

Myeloma care partner and advocate, Carleigh’s advice:

  1. During every appointment have at least one note taker
  2. Ask for a hard copy or print out of everything
  3. Create a way to stay organized
  4. Keep a list of questions
  5. Have a mindset of persistence and perseverance, and to maintain hope

My Self-Advocacy Journey With Ultra High-Risk Multiple Myeloma

My Self Advocacy Journey with Ultra High-Risk Multiple Myeloma from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Lori shares her journey to diagnosis and treatment. Watch as she explains the varied symptoms that she experienced, the benefits of a second opinion and clinical trials, and her  advice to other patients.

Related Resources:

How to Thrive and Set Myeloma Treatment Goals

Expert Advice for Newly Diagnosed Myeloma Patients

Multiple Myeloma Danielle’s Clinical Trial Profile


Transcript:

Lori:

My name is Lori, I’m from Portland, Oregon. I was diagnosed at age 60 in June 2019 with ultra high-risk multiple myeloma. The road to my diagnosis was long and regrettably all too common.

I have always been very healthy and active. I believe my healthy history clouded my doctor’s ability to connect my symptoms to anything serious.

My journey started with chronic fatigue and needing extra sleep. Then came horrible headaches followed by shoulder and back pain, frequent infections that didn’t clear with antibiotics, and severe nose bleeds. 

In May 2019, I had my annual exam that included a blood draw. I later learned I was tested for diabetes and cholesterol but none of the basic blood panels that flag abnormal values. I went into my exam with my laundry list of issues, but was given a clean bill of health.

Four weeks after this exam I was traveling in Kenya on a safari.  I felt very sick during the trip, but I assumed I had picked up something on the long flight.  When I returned  home I could barely get out of bed. I collapsed in the middle of a dinner with some doctor friends who insisted I go to the ER where they held me overnight to perform additional testing. They discovered severe anemia and that my basic blood panels hadn’t been ordered for a number of years. I continued to think it was some odd African bug until the doctors arrived the next day to share the suspected diagnosis of multiple myeloma. I was in shock and very afraid.

I sought a second opinion and I was extremely fortunate to begin my treatment at Seattle Cancer Care Alliance. In July 2019, I was started on KRD induction therapy. Our journey was further rocked when our insurance declined coverage for carfilzomib, which was nearly $20,000 for two infusions each week. The insurer insisted I fail on the standard treatment before I could be approved.  I knew from reading how essential the first line of therapy is.  With Seattle Cancer Care Alliance’s help, I was finally approved due to my high-risk status. However, it took months to finally receive approval, and I had to take care of stressful, expensive bills while also completing my treatment.

Treatment was exhausting and required me to drive 3 hours each way each week from Portland to Seattle.  We needed to spend at least one night each week in a hotel. By October 2019, a bone marrow biopsy analysis showed no myeloma cells. I was reminded of the spotty nature of myeloma and the limits of biopsy testing, but I was extremely encouraged. 

At diagnosis, I was given a 20 percent chance of a 5-year survival. I am now 3 years post-diagnosis, and I am in remission.

Some of the things I have learned during my multiple myeloma journey are:

  • Ask your primary care doctor what tests have been ordered and request a comprehensive blood panel if you suspect something is wrong and not being adequately addressed.
  • Seek a second opinion at a cancer center that combines patient treatment and research. 
  • Clinical trials and new treatment combinations can be effective even for high-risk disease. 
  • Work with your doctors to get insurance approval for the protocols they recommend.
  • Empower yourself by learning about treatment options and new therapies.  
  • Be encouraged that there are so many positive advancements happening in multiple myeloma.

These actions are key to staying on your path to empowerment.

Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening

Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening from Patient Empowerment Network on Vimeo.

 Stage IV colon cancer patient Ashley received her diagnosis at age 33. Watch as she shares her story starting with a routine physical, surgery and treatments that she endured, and lessons learned during her cancer journey.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


Transcript:

My name is Ashley, and I’m from West Virginia but currently reside in Nebraska. In February 2021, I was diagnosed with stage IV colon cancer at the age of 33.

I decided I wanted to join the Air National Guard and had to complete a physical examination. After visiting a hematologist/oncologist for dangerously low iron and hemoglobin levels, I went in for a routine physical a few months later. The physician’s assistant found a mass in my stomach area, and they sent me for a CT scan. The next morning, my husband Josh got the call that I missed. The CT scan had shown three different masses – and was likely cancer.

I was dumbfounded, shocked, and then I felt the tears rolling down my face. My doctor informed me, “You need surgery immediately, since the tumors are getting close to completely closing up your colon.” I also had a tumor on my liver.

I had surgery to remove the tumor before it closed my colon, but the surgeon couldn’t get to the tumor on my liver. After surgery, they told me the three most important things to do while there that would get me home sooner were eating with no issues, walking, and having a bowel movement.

Finally after two surgeries where my liver, gallbladder, one-quarter of my colon, part of my small intestines, appendix, two large tumors, and a lymph node that turned into a tumor was removed, as well as 12 rounds of chemo.

I received news in March 2022 that my cancer is back but will not be as aggressive as it was before. I am taking things one step at a time and one day at a time, trying to stay optimistic at each step.

When someone gets cancer – the “journey” is never over. The fear NEVER goes away. Even when you are declared to have no evidence of disease, there is a possibility cancer can come back. And if it does come back, the chance of fighting and winning again gets slimmer.

If you know someone that has cancer – be kind – just because they don’t look sick, doesn’t mean they aren’t having challenges. Just because their numbers and scans are good doesn’t mean they are in the clear for the rest of their life. Always, always – BE KIND!

Some of the things I have learned during my colon cancer journey are:

  • Get your colon cancer screenings on time. Or if you’re too young like me, listen closely to what your body tells you and get annual physicals.
  • Say yes to those who want to help by bringing food, checking in, or donating. We are amazed by the support we’ve received from friends, family, and complete strangers.
  • Fighting the cancer fight is much easier knowing how many people are on our side and how much love there is for us out there.
  • Advocate for yourself! Do research on your specific type of cancer and mutations. If you feel you are being told something that just doesn’t seem right, question it – push the bar until you can’t anymore! There are so many options out there when it comes to cancer and survival, you just need to find the right person that will take care of you!

These actions are key to staying on your path to empowerment.

Advice From a Young-Onset Colorectal Cancer Patient

Advice From a Young-Onset Colorectal Cancer Patient from Patient Empowerment Network on Vimeo.

Colorectal cancer patient Jessica was surprised but not shocked even after a diagnosis under the age of 40. Watch as she shares her journey from symptoms, diagnosis, her advice to others, and coping methods she’s found helpful for navigating her experience as a patient.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


Transcript

My name is Jessica, and I’m from Chicago, Illinois. Even though my doctors thought I was too young, I was diagnosed with colorectal cancer at age 39.

I’d been experiencing occasional rectal bleeding for about a year when I was finally referred for a colonoscopy.

While my doctors were convinced that I was too young for colorectal cancer, I was still worried because my grandmother died of the disease.

My doctor asked me to go in to get my colonoscopy results. My parents knew what that meant, so we went together. When the GI gave me the results, stage III rectal cancer, I felt so scared. I called my best friend, and I couldn’t even speak. We just cried together.

After I received my diagnosis, my doctor told me it’s very curable. I had a 2-inch mass in my rear. I had a CT scan to confirm the cancer had not spread followed by an MRI. And that’s when the whirlwind began.

I returned to a craft I hadn’t used much in recent years. To sort my thoughts, to update my friends and family, to document the most important year of my life, I started writing again. Beginning a blog was at once a coping mechanism for me and the best way I knew how to share this breathtaking news with friends and family I’d collected from across the country and over decades — and still conserve energy I would need to fight this fight.

Five years later, and I’m thriving.

I want to raise awareness about the rising incidence of colorectal cancer in the under-40 crowd because I was symptomatic and ignored before I was diagnosed. I know that not everyone is as lucky as me, especially young people who are often diagnosed at an even more advanced stage.

Some of the things I have learned during my colorectal cancer journey are:

  • Watch out for signs your body gives you
  • Don’t take “no” for an answer even if doctors think you’re too young for colorectal cancer.
  • Cases of young-onset colorectal cancer are increasing, and that’s why funding colorectal cancer research is so important.
  • Find something to do to help you cope. If you’re unsure whether it’s a healthy activity, ask your doctor or care team member who you trust.

These actions are key to staying on your path to empowerment.

MPN Patient Profile: Robyn Rourick Part 2

Read the first part of Robyn’s MPN journey here…

Picking up after 26 years of watchful monitoring of her myeloproliferative neoplasm (MPN), scientist Robyn Rourick was then referred for an allogeneic stem cell transplant by her MPN specialist, Dr. Gotlib. The transplant team started working through the matching process for a bone marrow transplant donor, which often begins with close biological relatives. Although Robyn’s only sibling wasn’t a transplant match, a person considered a near perfect transplant match for Robyn was found.

At that point in her journey, the possibility of entering a Phase II clinical trial called ORCA-1 was presented by Robyn’s transplant doctor. She discovered that the ORCA-1 treatment had the potential to completely eliminate graft-versus-host disease (GVHD). The clinical trial made sense to her. In Robyn’s trained scientific mind, she agreed that the trial was founded on sound scientific rationale with the potential for clear benefit and signed up for it. She researched other things like whether the transplant team could look at biomarkers to guard against graft-versus-host disease, but she decided to take the clinical trial path as her best option.

As for her feelings about the stem cell transplant, Robyn felt there was likely going to be a positive outcome for her due to the ORCA-1 clinical trial. Her knowledge about the trial really brought her a lot of comfort and put her at ease for the time she’d be around her family post-transplant. Robyn was lucky because her doctor was actually the primary investigator on the study. When he presented the transplant study as an option, that’s when she started to do more searching to find what patient advocacy groups were out there.

Looking back on her MPN journey, Robyn wishes that physicians would provide their patients with more patient advocacy resources, such as those available through organizations like Patient Empowerment Network (PEN). She feels fortunate that she discovered PEN through another patient advocacy website, and she firmly believes in PEN’s mission of empowering patients to gain knowledge to advocate on their own behalf. “I had the realization that in the clinical trial I was in, I was only the sixth patient, and the technology was stellar in terms of what we’re trying to do in terms of cell therapy. I just felt like patients need to know about the treatment advancements, and PEN is an excellent resource for learning about treatment and support options that I wanted to share my knowledge and patient experience with.” 

Robyn was fortunate to have a team of physicians in whose knowledge and treatment recommendations she could trust. She’s  tremendously grateful, because she knows it’s not always the case, and so offers this advice for others, “Make sure that you’re comfortable with your physicians. And if not, then move on. Don’t be afraid to reach out and to make other connections to other doctors, even across the globe. You shouldn’t hesitate to request a conference call with another provider to see if they’re aligned with your diagnosis and your watchful waiting or treatment recommendations. Patients must have the utmost confidence going through their cancer journey.”

As for the scientists who handled her sample in the ORCA-1 trial, Robyn was able to meet the scientists and saw the analytical data of her sample. She was highly impressed with the protocols that they used with the samples. Robyn was just the sixth myelofibrosis patient to join the trial. To have spent her life working on medicines for patients and then to be on the receiving end of this cutting-edge treatment for transplants made her feel very privileged. 

In her life post-transplant, Robyn has continued periodic blood work for routine monitoring and has been doing well. Two years following her transplant, Robyn’s myelofibrosis is in remission, and she has no evidence of fibrosis in her bone marrow. Her test numbers have been progressing nicely, and she hasn’t needed any additional treatment since undergoing the transplant. “I don’t have a single regret. I haven’t had a pimple, an itch, a scratch, absolutely nothing. My life has resumed exactly how it was before the transplant.”

In reflecting on her patient experience, Robyn offers this additional advice to other cancer patients, “Take a deep breath and give it some time to play out. The moment that I heard the word cancer and the risks with rapid progression, I had myself dead and buried. In my mind, what I needed to plan for was death. Prepare my family. Get everything in order. And to me, that was going to be the ultimate outcome. But then as things unfolded, I had conversations, did a little bit of research, and found out I did have some options. Things weren’t so negative in terms of progression and mortality. Don’t jump to the most negative outcome possible.”

MPN Patient Profile: Robyn Rourick Part 1

Though Robyn Rourick is a scientist by training and works for a biotechnology company, she took a mind-body approach to her myeloproliferative neoplasm (MPN) journey. The time that passed between Robyn’s initial MPN diagnosis and when she finally needed treatment was incredibly – and nearly shockingly – long. She was diagnosed with essential thrombocythemia (ET) 26 years after elevated platelets were shown on a routine blood test. After she saw a hematologist, they performed a bone marrow biopsy and concluded she didn’t have myelofibrosis and received the ET diagnosis. Robyn recalls of the time of her diagnosis, “I didn’t know about myeloproliferative disorders. Not many people did at the time. Nobody mentioned that I could potentially have an MPN.” 

Robyn’s blood levels were monitored over the years, and her platelets started to decrease. Though she didn’t realize at the time, her platelets were decreasing because her bone marrow was becoming more fibrotic. She was also tested for the early gene mutations (JAK2) that were discovered as more MPN research occurred but tested negative . She later switched to another hematologist who was very tuned into the gene connections. He looked at Robyn’s medical data comprehensively and was extremely attentive to any minor changes. As her blastocytes began shifting, he urged her to go see MPN specialist Dr. Gotlib. Dr. Gotlib did further analyses and classified her as having myelofibrosis, noting that when she was diagnosed with ET that her original healthcare team also couldn’t have  ruled out pre-fibrotic myelofibrosis at that time. Fortunately, Dr. Gotlib stated if he had diagnosed her with her original blood test 26 years prior, he would have recommended to simply watch and wait while monitoring Robyn’s blood levels on a regular basis. 

Although Robyn felt healthy and had no symptoms besides an enlarged spleen, as Dr. Gotlib dug deeper into her genetic profile, he found a unique mutation that suggested she was at risk for an escalation into acute myeloid leukemia mutation. He recommended Robyn for an immediate allogeneic stem cell transplant for her MPN treatment.    

Robyn then learned that graft-versus-host disease (GVHD) was a major concern for the transplant process, which can be debilitating. So she began to seek patient advocacy resources to inform her MPN journey. “I felt desperate and wanted to meet people who had myelofibrosis who successfully came through transplant. I didn’t want to just talk to a transplant person with a different disease.” Robyn went through some patient connection programs – including Be the Match, Caring Connections Program, and Patient Power – and was able to meet a few people and became quite close with one patient. 

She learned that even though transplant will cure your disease, doctors don’t always elaborate with patients on the potential for a compromised lifestyle due to  graft-versus-host disease. Sometimes patients will come through transplant in worse condition than before the treatment. Robyn had major fears about going through transplant and being able to work and do her extracurricular activities post-transplant. “I felt like I was going to be a letdown for my family and colleagues and didn’t tell my work until I was preparing to go out on leave, which in retrospect was silly.” After telling her manager, Robyn was given complete support, and realized she could have avoided carrying so much anxiety.

“For me, self-education and advocacy are important to enable yourself to have conversations about what’s possible in terms of your treatment. You don’t have to develop an in-depth understanding, but enough to have the ability to be conversational. If you’re proposed a certain pathway, it’s good to know enough to ask why. And if you’ve done some research on your own, then you can ask why not an alternate treatment approach. I think it’s really important to have some knowledge, because it builds your confidence to be able to move forward with what’s being proposed.” 

“Give it time, allow yourself to digest the information, have conversations about it, and develop your own understanding. At first, I was very closed about my diagnosis. I told my immediate family, and I told one very close friend who had gone through autologous transplant. The more that I began to talk about it and the more that I included people in the story, the easier my journey became.” Robyn also saw a cancer therapist who made some really good points to her. “She told me that ‘we’re all going to die of something, but most of us don’t know what that really looks like.’” In Robyn’s case, she had the opportunity to learn more about her disease, guide it, and direct her journey. And that opened up a whole new perspective.

The cancer therapist walked Robyn through some exercises: “What is it you’re afraid of? What do you have control over? Allowing yourself to gain control over some things will build your confidence that you can do this.” Robyn also encourages other patients to engage their network of friends and family and realize that it’s okay to depend on people. It’s not your fault that you have this diagnosis. Getting over the apprehension of telling people about your diagnosis and embracing help from others are key pieces of advice.

Robyn views patient empowerment as essential to the patient journey. She discovered Patient Empowerment Network (PEN) through another patient advocacy website and felt it brought her MPN patient experience full circle in terms of learning what’s available. “As I’m learning more about PEN, I’m just dazzled by the different forums they have to enable knowledge transfer, support systems, and advocacy.” 

Read the second part of Robyn’s MPN journey here…

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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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.

What steps can breast cancer patients take to be more proactive in their care? When is it appropriate to voice concerns? Dr. Regina Hampton offers advice for patients and loved ones how to work towards achieving optimal care.

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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.  

How Can Breast Cancer Patients Connect to Patient-Centered Care?

How Can Breast Cancer Patients Connect to Patient-Centered Care? from Patient Empowerment Network on Vimeo.

What actions can breast cancer patients take to connect to patient-centered care? Dr. Regina Hampton shares insights about breast cancer resources that aid in supporting whole care of the patient.

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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.