Patient Videos

Carol's Story

What has your experience been with lung cancer?
Carol is a tribal elder from the Mille Lacs Band of the Ojibwe First Nation and a lung cancer survivor. Carol describes her lung cancer diagnosis and treatment journey, which involved a lung resection (surgery in which a section of her lower left lobe was removed) followed by chemotherapy. Carol’s lung cancer is currently in remission.
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What do people in your Native American community think about lung cancer clinical trials?
Lung cancer survivor, Carol, talks about the level of awareness of lung cancer and lung cancer clinical trials in her Native American community. Living in a rural area, she considers that her community has not had the opportunity or exposure to learn about lung cancer clinical trial availability, eligibility criteria, and reasons to join a clinical trial.
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As a Native American, would you consider taking part in a lung cancer clinical trial? What advice do you have for others?
Lung cancer survivor and tribal elder, Carol, describes her experiences with clinical trials. She strongly supports research and education and would consider taking part in a lung cancer clinical trial. Carol mentions her concerns about clinical trials from the past and how she had a fear of ingesting medications as part of a research study. However, based on her current situation where she is in remission from lung cancer, she would be willing to try new medications that have the potential to help her live longer and stay healthy.
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What are some of the barriers that limit clinical trial participation among Native Americans?
Carol is a tribal elder from the Mille Lacs Band of the Ojibwe Nation and a lung cancer survivor. She discusses some of the barriers that impact lung cancer clinical trial participation among Native American communities, including long travel times, transportation difficulties, and health services access issues. Other challenges she discusses are the many doctors that need to be seen before getting to a lung cancer specialist, and mistrust of clinical trials due to negative historical and present-day experiences. Carol recommends Native American patients consult with experts and elders in their communities and decide for themselves how they want to approach the matters of traditional medicine and western medicine, to decide if they should be kept separate or can "walk hand-in-hand".
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Curt's Story

What has been the biggest challenge for you with your lung cancer?
Curt found the biggest challenge with his lung cancer has been all the treatments he went through. He had chemotherapy, then a pneumonectomy where they removed his right lung, and then radiation therapy. He was fortunate because he tolerated most of the treatments quite well, however taking away his right lung has been a challenge. Ultimately the biggest challenge was the fear he encountered with his Stage IIB lung cancer. Luckily the tumor was contained in one area of the lung and his treatments worked. Adapting to one lung after 6-7 years has been difficult, however he feels very fortunate.
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What was the one thing you would have liked your Doctor to explain better about your lung cancer?
Curt felt his doctors and care givers did a wonderful job, however they did not explain much to him about what kind of cell type of lung cancer he had. It would have given him a more comprehensive overview of what kind of cancer cells he had, and that would have helped him better understand what kind of treatments were most likely to work.
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What advice do you have for other patients on their journey with lung cancer?
Curt wants other lung cancer patients to be as positive as possible, even though it may not be easy. He says it is very important to talk to friends and family about what you are going through and be honest with those around you. Don’t remove yourself. Pulling back from friends and family is not the way to go.
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How did your friends and family react to your diagnosis of lung cancer?
Curt’s friends and family were very shocked at first, in some ways he feels they were more afraid than he was. Although the fear is a big factor for anyone with lung cancer. Part of what he would recommend to others is to talk about it enough so that your friends and family can feel more comfortable and don’t suffer in silence.
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What do you feel has been your unique challenge or situation when it comes to lung cancer?
Curt’s unique challenge was his recovery from the surgery (removal of his right lung). Over time adapting to the loss of one lung was difficult. The right lung can account for 55% of pulmonary capacity. He went to physical therapy and spent a lot of time in recovery. When he climbs a hill or climbs some steps at a ball game, it’s a challenge. However, he takes it slower than he used to and tries to keep going. It’s still frustrating but he remains positive.
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Julie's Story

What has been the biggest challenge for you with your lung cancer?
Julie’s biggest challenge with her stage 4 lung cancer has been the mental challenge of the fear of the unknown and what’s coming next. In particular, she is afraid about what’s going to happen with her children and how they will cope (she has two young children). Julie tries to stay in the present as much as possible and tries to focus on how she is currently feeling, instead of looking at someday when things could turn for the worse.
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What was the one thing you would have liked your Doctor to explain better about your lung cancer?
Julie felt that the biopsy process could have been better explained to her. She did not realize that the biopsy would involve some genetic testing to see what type of genetic modifications might be in the cancer cells, which would relate to the treatment options available to her.
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What advice do you have for other patients on their journey with lung cancer?
Julie wants other lung cancer patients to educate themselves and also connect with other lung cancer patients, to learn from them or be inspired by them. She says it’s important for lung cancer patients to advocate for themselves in their own personal journey.
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How did your friends and family react to your diagnosis of lung cancer?
Julie’s friends and family were all shocked when they found out she had lung cancer, just as she was. She had not known that lung cancer was even a risk or possibility for her. She thought lung cancer was just for smokers. Her brothers were smokers and they were shocked too, because Julie never smoked.
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What do you feel has been your unique challenge or situation when it comes to lung cancer?
Julie says being a parent of two boys (aged 9 and 11) with her stage 4 lung cancer has been extremely difficult. Knowing how to navigate with them, and balancing hope with reality has been very challenging. Currently Julie is disease free, but it’s been hard for all of them. She has had her boys in counseling to make sure they have the skills to cope with this challenge. She hopes that they learn compassion and how to help others.
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Why did you decide to join a lung cancer clinical trial?
Julie introduces herself as a Stage 4 lung cancer patient who has been living with lung cancer for six years. Due to concerns that her current line of treatment might stop working, Julie decided to enroll in a clinical trial. She recalls proactively researching several clinical trial options and that she became eligible to participate in one of them. She explains that www.ClinicalTrials.gov and contacting other lung cancer patients who have participated in past studies are great resources for finding a clinical trial. By finding clinical trials that matched her specific lung cancer mutation, Julie shared her interest to participate in a trial with her oncologist to get an opinion about whether the specific clinical trial could be an option for her.
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What was the clinical trial enrollment process like for you?
Julie shares her experiences with trying to enroll in a couple clinical trials – one in which she did not meet the eligibility criteria and one in which she was accepted to participate in. In both cases, she was in contact with a trial coordinator who reviewed the details of the trial with her, explained eligibility criteria, the potential side effects from the trial medication, the type of monitoring involved, and provided her with informed consent. From her experience and depending on the study, the enrollment process ranged from being lengthy to fairly quick.
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What was your overall experience in the lung cancer clinical trial?
Julie shares that she benefited overall from her clinical trial experience. She was regularly cared for by a very supportive team of nurses and clinical trial organizers, who closely monitored how her body was responding to the medications while tracking for any side effects. Julie describes how there were drawbacks in that she was very nervous during her first infusion of treatment, coupled with a very intense first week of tests, treatments, and periods of monitoring. Another drawback for her was the frequency of scans during follow-up sessions. Despite this, Julie tells the great news that her body had a complete response to the trial medication after participating in the clinical trial for almost a year. Although Julie was eventually recommended to leave the clinical trial due to other complications, her clinical trial experience provided her with a year of very good health, and she experienced a positive response to treatment. The drug that was being tested has since been approved by the FDA. Julie feels she was able to impactfully and positively contribute to the clinical study – the findings and results of which will be able to benefit other lung cancer patients in years to come.
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What advice do you have for other people about participating in clinical trials for lung cancer?
Julie wants other patients with lung cancer to know that clinical trials have the potential to offer another option other than the medications which are already FDA-approved. Lung cancer clinical trial participation has so much potential which could impact a person’s life in a very significant way, as well as help others in the future. She understands that there may be fear and anxiety about enrolling in a clinical trial and recommends talking about these concerns with an oncologist to help participants to know that they will receive exceptional care and oversight. Julie shares that she is doing very well on her current line of treatment, and as a backup, is already researching into other clinical trial options. Julie encourages other patients with lung cancer to proactively look ahead and not to wait for a later stage of disease to occur.
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How did you use ClinicalTrials.gov to find a lung cancer clinical trial?
Julie describes how she used www.ClinicalTrials.gov as an important resource for research on clinical trials. Knowing her specific lung cancer mutations ahead of time allowed her to narrow down the search of available and eligible trials to those that matched her specific types of mutation. Julie mentions that in her case, a large list of trials were available which made it challenging. To narrow the list down further, she focused on trials by location in her area of the country, as well as eligibility criteria. Following completion of her research, Julie says she next shared her information with her oncologist. After discussing past experiences, possible side effects, and the potential for success or failure, together they reached a decision about which clinical trials to apply for.
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Katherine's Story

What has been the biggest challenge for you with your lung cancer?
The most challenging thing for Katherine has been slowing down. She has always been an active person, she likes sports and she likes to work out. She likes golfing. She has four kids and she was working full time. It’s been a struggle mentally because a lot of her activity has come to a halt. Katherine says she has to remind herself to slow down.
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What was the one thing you would have liked your Doctor to explain better about your lung cancer?
Katherine’s experience was that her lung cancer diagnosis was devastating. There was a lot of information coming at her very quickly which was difficult to process. She wishes her first doctor had educated her more and given her more information. She is with a different doctor now and he gives her a lot of education and time to process information along the way.
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What advice do you have for other patients on their journey with lung cancer?
Katherine wants other lung cancer patients to get a second or third opinion. She also wants other patients to take the time to understand what their treatment options are, and try to educate themselves. She also recommends staying physically active, and connecting to social supports because there is a lot of help available.
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How did your friends and family react when you told them about your lung cancer?
Katherine’s friends and family were devastated and shocked as she was. They did not know what it meant, because no-one in her family has gone through this before. They have all been very supportive. They have helped her stay positive.
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What do you feel has been your unique challenge or situation when it comes to lung cancer?
Despite being a non-smoker, Katherine was diagnosed with stage 4 lung cancer. She didn’t fit the criteria that people think goes along with lung cancer. A lot of people assume that lung cancer is caused by smoking; however there are many non-smokers who get lung cancer. She wants people to know that factors other than smoking can play a role in getting lung cancer.
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Mark's Story

What has been the biggest challenge for you with your lung cancer?
Mark’s experience with lung cancer is that every day is grueling and it can take a lot out of him. Some days he has energy, and some days he doesn’t. But he is determined to work with his doctors and stick to his treatment journey. Mark says he is hopeful for the future and tries to keep a positive outlook.
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What was the one thing you would have liked your Doctor to explain better about your lung cancer?
Mark wishes that his doctors would have been more kind in their delivery of the diagnosis to him. They just told him flat out that he had lung cancer, and he feels the information could have been more gently put to him. It was hard news for him to hear.
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What advice do you have for other patients on their journey with lung cancer?
Mark’s advice for other lung cancer patients is that they have to sustain and work with their doctors to stick to their lung cancer treatment journey.
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How did your friends and family react when you told them about your lung cancer?
Mark has been very private about his lung cancer diagnosis. He did not want to burden his family and friends with the news of his diagnosis. He wanted to go through it on his own and he still feels there is hope ahead for him.
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What do you feel has been your unique challenge or situation when it comes to lung cancer?
Mark says he tries not to think about his lung cancer so much because he does not want it to overwhelm him. He tries not to dwell on it. His strategy is to keep himself busy with cooking, playing his musical instruments, and other various activities.
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Mr. Satterfield's Story

How was your lung cancer diagnosed and how did you find out about your clinical trial?
Mr. Satterfield describes his early lung cancer symptoms which were excessive coughing and inability to sleep. He went to see the doctor and underwent a chest x-ray. On receiving an x-ray, which revealed a spot on his right lung, his doctor told him he had lung cancer. Mr. Satterfield felt that his faith in God helped him deal with this news. He started chemotherapy in December 2013, but unfortunately experienced side effects of dehydration and was unable to keep food and fluids down for about 2 weeks. He was admitted to hospital until he was able to keep food and fluids down. On returning home he continued to receive radiation therapy and chemotherapy. Mr. Satterfield was later referred to the University of Minnesota to oncologist Dr. Manish Patel, who informed him about participating in a clinical trial.
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What was the clinical trial enrollment process like for you?
Mr. Satterfield recalls the informed consent form which he signed. He found it a fairly smooth process, although there was a requirement to send some tissue samples to the clinical trial organizers. There was a delay of about 3 weeks before the trial could begin. Based on his tissue samples and his patient history, he was eligible to join the clinical trial. He followed the trial steps with regular treatments and monitoring. By May 2017, the doctor told him there were no more signs of the cancer in his body.
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What was your overall experience in the lung cancer clinical trial?
Mr. Satterfield has no regrets in joining the clinical trial. He is glad he made the decision to come to a Center of Excellence at the University of Minnesota. He was unafraid and just knew that he was going to look for another opinion. His wife, children, and pastor all gave him strength not to be afraid. Despite the potential for side effects, Mr. Satterfield’s message to others thinking about being in a clinical trial is not to be afraid and to not let fear set in.
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What advice do you have for other people about participating in clinical trials?
Mr. Satterfield agrees that the knowledge learned from clinical trials can help all patients, including those in the African American and Black community. His key message to others thinking about participating in a clinical trial is to not be afraid and to not let fear dominate you. After finding a doctor he could place trust in, Mr. Satterfield believes taking part in a clinical trial saved his life.
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Sharon’s Story

What led you to have lung cancer screening?
Sharon talks about what led her to have a lung cancer screening test. She found out about the procedure from speaking with her doctor. While she did know of two people in her community who had undergone screening, it was not initially on the top of her mind as a tool that could aid in screening for potential lung cancer.
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Do you have advice for others who wish to quit smoking?
Sharon shares her overall experience and advice for those who wish to quit smoking. She admits that quitting can be very difficult. In her journey to quit smoking, she has found nicotine patches very helpful, along with recreational activities such as crocheting and walking in the outdoors.
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What was it like having the low-dose CT scan?
Sharon describes the experience of what it was like to have a low-dose CT scan. She explains that the procedure was quick and painless. She also mentions that the process was simple since there was no fasting or preparation needed.
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What advice do you have for your community about lung cancer screening?
Sharon shares advice for others in her community who may be interested in getting screened for lung cancer. She encourages others to talk with their doctors about lung cancer screening because it’s simple, painless, and can help save lives.
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Tricia's Story

What has been the biggest challenge for you with your lung cancer?
Accepting the diagnosis was Tricia’s greatest initial challenge. Finding out at the young age of 26 was very difficult. In Tricia’s case, she was first diagnosed with a lung abscess and scheduled for a lobectomy. It was only after the surgery that the doctors told her she had lung cancer. Tricia also found it depressing and disheartening to learn about the statistics for lung cancer. The uncertainty of what her outcome may or may not be is very challenging to her.
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What was the one thing you would have liked your Doctor to explain better about your lung cancer?
Tricia remembers that everything happened so fast at the time of her diagnosis, and there was not a lot of time to absorb what was happening. She did not receive a lot of information at the time because the immediate response was to treat her lung cancer very aggressively and she trusted her doctor in doing so. She was diagnosed with non small cell (squamous cell) lung cancer and she had to do a lot of research on her own about her condition.
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What advice do you have for other patients on their journey with lung cancer?
Tricia’s advice for other lung cancer patients is for them to focus on what’s best for them, and to take good care of themselves. They should be aware that this experience can be a roller coaster ride, and to expect lots of challenges. In her case, she is 11 years out from her first diagnosis, and she feels she has learned a lot. She recommends that other lung cancer patients do lots of self-care and try to keep enjoying life with family and friends.
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How did your friends and family react when you told them about your lung cancer?
Tricia’s friends and family were sad, worried and fearful when they heard about her lung cancer diagnosis. She feels very fortunate that her friends and family have been so supportive of her. At her first diagnosis she was very private and didn’t share her diagnosis with a broader set of people. But after connecting with A Breath of Hope Lung Foundation and after her second diagnosis, Tricia has become more comfortable talking about it and has a wide support network. Now, Tricia shares her experiences in order to advocate for lung cancer awareness and more research funding.
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What do you feel has been your unique challenge or situation when it comes to lung cancer?
Tricia’s early age of diagnosis (26 years) is something she feels has been very unique about her situation. All the research she had read about on lung cancer was for a much older demographic. The other patients were so much older than her and she did not feel she could relate to them, so she felt isolated in her diagnosis. Tricia has had lung cancer scanning every 4 months for 11 years. She’s still learning to cope with it and to navigate as best she can.
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