Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and cancer survivor Randy Broad discuss the emotional side of cancer and how symptom and comfort management should be apart of your treatment from the beginning.
Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss the importance of communicating with your healthcare team. They agree in having a life planning conversation while you’re healthy is one of the best things you can do.
Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.
Caregiver 1: Female caring for Male with NSC Lung Cancer
My husband’s last scan was terrible. Everything that had once been invisible on previous scans had grown dramatically, and there are new nodes and tumors. He will get a port for Christmas, and start 2 new types of chemo by Jan. 1.
This is difficult to deal with for everyone. It was like we were able to live in a form of denial for quite some time. Not anymore….
He was diagnosed with stage IV non-small cell lung cancer a little over 2 years ago. He will start on a Carboplatin/Taxol combination. He will have a port installed just after Christmas, and begin the New Year with his 1st round of 6 cycles. So far, he hasn’t had radiation because it everywhere, so they have been trying to get it under control systemically.
I am so blessed to have a husband who, despite all he is going through, still tries to make life as easy for me as possible. I am so thankful for a wonderful family.
Patient 1: Female (USA) Lung Cancer
I have been thinking of making a journal about my health issues and here it is. This is great. I had cancer surgery almost 15 years ago and I have been cancer free and relatively healthy ever since. This last Oct. my illusion came to an abrupt halt. My lung specialist said I had a mass in my left lung and it needed to come out. Ah you said what??? He sent me to a Thoracic Surgeon and he was ready to sign me up for the next opening. I felt my stomach turn and I said I needed to see my Primary Care physician. I saw her a week later and told her I wanted to wait and see. She agreed and told me about a blood test that would screen for cancer. I had the test and it says I don’t have any Cancer in my system. I decided to get another opinion this time at UCSF. This is where I had my Lung Cancer surgery done in 1996. I am waiting for my appointment. It is in the middle of Jan. I don’t understand how well respected and learned doctors can do this. I have had two Dr. and a blood screening say they were wrong (and I’ll eat my hat if they’re right) but they insist the mass is cancer. I hope everyone gets second and third and fourth opinions. Well we shall wait and see. Thanks for the opportunity to say my peace.
My Cancer fears were gone once I had my surgery in 1996. I really never gave it another though. I did have yearly CT scans and they were consistently the same. I was well aware of the scar tissue present but I was a smoker. I was a hairdresser, used a lot of chemicals that are labeled dangerous. And I was a sun goddess and a swimmer and lifeguard. Again not very good conditions if you want to be cancer free. For any cancer!
I returned home from UCSF with the same old story. Let’s watch and wait. I will get another CT scan in 6 months and just go from there. Other than that I sure enjoyed being in San Francisco. I really love that town. I am feeling good and I will be doing life as usual for now. I started doing square dancing once a week and I will rejoin the gym. I hope everybody is feeling well and continues to have happy thoughts for their new year. 🙂
Well, I have missed the last two weeks of SD. I keep running a fever and feeling sort of sickish. I don’t want to be a rabbit out of the cage and push myself. I’m not in a race. I will rejoin the gym ASAP. I still haven’t heard from my doctor as to what she thinks is the next plan. I’m not too sure I will keep her as my primary Dr. She is way to controlling and this freaks me out. She works for me. I think more doctors need to remember they are working for their patients and any decisions need to be mutually agreed upon and that they are not the ultimate authority. I feel like she wants me to do everything her way and that I’m not her… Oh well, I did my will today and that went well.
Patient 2: Male (Malaysia)
Diagnosed with Stage 4 Non-Small Cell Lung Cancer, hv chemo treatment with Carboplatin + Taxol (6 cycles)2008 ; Tarceva (21/2 months)2008/2009 ; Cisplatin + Alimta (3 cycles) 2009; Alimta only (3 cycles) 2009 ; Alimta only (2 cycles) 2010.
Have experience Lung collapse and drain out fluid from lung in 2010.
Treatment not manage to reduce the quantity and size of tumor, but, manage to have it under control with no major changes for the total quantity and size since diagnose until now.
I proceed with chemo and this round I decide to use back the same drug that I use last year, Gemzar and Navelbine.
All went well after chemo I feel good and suddenly, situation changed and I started vomiting for 3 days, thereafter I felt very tired and I started to loss balance while walking. So, decided to proceed to hospital on. With blood test report, doctor ask me to admit hospital, as my Sodium is very low, it’s the cause of tired and dizzy, then my hemoglobin is low too, so, cannot proceed for chemo.
After all the paper work, I admitted and taking two bags of blood transfusion, then, follow by dripping of sodium water. On second and third day, they took my blood again, too bad, both show that no improvement on my sodium level, but, lucky that hemoglobin n RBW is getting so much better.
After 4 nights in hospital, I requested doctor to allow me discharge, no doubts I am not recover from short of sodium, but, I feel so much better. Finally doctor agreed and discharge me with sodium tablet.
Since back home, I feel good and I have regain my appetite, I really eat and enjoy.
Life goes on – I don’t think of I will ever rest from Chemo treatment for 5 1/2 months. Beside of the back pain disturb me, some breathless at times, basically, I have no complaints.
I have delay my CT scan since April this year and finally got it done two days ago, and yesterday meet up with doctor to discuss about the result of scan. Overall, not much changes to my brain and bone, consider stable. But, compare with previous scan, tumor in lung show some 30% progression. Doctor advise me to proceed for Chemo by next week to get situation under control. Tentatively scheduled for early next week. Anyway, there are things for me to consider and I pray to Lord to guide me and show me the way for the treatment. My main concern is back pain that disturb me almost every night with the pain moving from one to another place at my back. Life now is with daily pain killer and because of the continue taking pain killer, I often feel tired / weak.
Spoke to doctor about getting opinion from Orthopedics to have some idea is the pain due to my spine, but, doctor told me that it is not necessary.
Well, I will arrange appointment with doctor in another hospital and have fix it on coming Monday, hopefully can have some solution. Life goes on, but, no more normal for the last couple of weeks and I hope that Lord will take away all the pain and restore my body with strength and energy.
No worry be Happy. Believe and have Faith.
As 2015 comes to an end, we would like to take a moment to highlight a few of our most popular posts and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor, Tori Tomalia, Cindy Chmielewski, Dr. Michael Thompson, Edward Leigh, and Deana Hendrickson. Your efforts to Patient Empowerment Network are greatly appreciated.
PEN would also like to thank our sponsor AstraZeneca and our partner LUNGevity for their support in creating these posts.
Most Popular Posts of 2015
Virtual patient communities offer support and information to cancer patients.
Tori Tomalia, a lung cancer patient explains the stigma of lung cancer, and that it doesn’t happen to only those who smoke.
When applied to clinical trials, wearable technology is a potentially powerful research tool to gather clinical data in real-time and provides remote patient monitoring.
Clinical research is changing. No longer the sole preserve of clinicians and researchers, the Internet and new digital technologies are reinventing the way in which patients take part in the clinical trials process.
Carol Preston talks to myeloma patient Cindy Chmielewski about her role in advocating for clinical trials. Cindy explains how her cancer journey took her to self-advocacy and advocating for others in her community through social media.
Dr. Michael Thompson discusses with Carol Preston the reasons behind some patients apprehensiveness towards clinical trials.
What can you do in support of Lung Cancer Awareness Month
LVNG With is a community for people living with a lung cancer diagnosis. These people share their story and help inspire others like them.
Edward Leigh, Founder and Director of The Center for Healthcare Communication, shares his tips for creating a “medical résumé” to ensure great healthcare experiences.
In the Empowering Lung Cancer Patients Town Meeting, Deana Hendrickson talks about how important it is to connect with other patients and advocates online.
Also, be sure to check out
[toggle title=”Clinical Trial Toolkit” state=”closed”]
The Clinical Trial Toolkit is a resource to help you find clinical trials and financial assistance. You can view our Patients Helping Patients Blog for various aspects and perspectives of clinical trials. Also, don’t miss our Videos of patients, caregivers, and healthcare professionals!
Tamara Lobban-Jones, Patient Power Producer and Lung Cancer Community Manager, and Lisa Goldman, a stage 4 non-small cell adenocarcinoma patient discuss why cancer patients need to be their own advocate.
They discuss the need for doctors and patients to communicate in new ways that respect the balance between a doctor’s expertise and patients’ own thoughts and knowledge. With the ever increasing developments in cancer research, it has become harder for oncologists to understand everything about each specialized form of a certain cancer. As Lisa points out, all that patients need to know about is their own cancer, so they can dedicate more time and energy into researching than a doctor may be able to. Being an active participant in your cancer journey is the best way to feel confident in your decision making.
November is Lung Cancer Awareness Month, and although lung cancer is the leading cause of cancer death in the world, the disease has long been stigmatized, leading to a sense of isolation for people already struggling with the considerable upheaval of a lung cancer diagnosis. Many living with this disease have said that connecting with others who also have a lung cancer diagnosis can inspire them to learn to “live with lung cancer.”
LVNG With Program
Through a new program called LVNG With (pronounced “Living With”), AstraZeneca, with the partnership of three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer Foundation, Free to Breathe, and Lung Cancer Alliance), are activating a community of people living with lung cancer and their loved ones, to share their experiences and inspire one another. More than 100 people with lung cancer and their loved ones contributed to the development of LVNG With by sharing personal stories about their emotional journeys with lung cancer and their everyday lives.
Richard, who was diagnosed with lung cancer in 2004, conveys a sentiment that we’ve heard from countless people who are living with lung cancer and who contributed insight to this program: “I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope.”
Initial elements of the LVNG With program include a web site (www.LVNG.com), printed quarterly newspapers and live events, all intended to activate and connect those within this underserved community. We intend to add social media elements, such as Facebook and Instagram, to continue to activate a community of people living with lung cancer and their loved ones. These channels will serve as another forum to share personal stories, posts, and images, and to invite people to post their own.
Following are excerpts from the personal stories you can find on at www.LVNG.com.
Dann, who was diagnosed with lung cancer in 2006, shared the following on Emotions:
“It’s important to do things that you feel give you some control. It feels totally out of control to be given this diagnosis, but there are things that are within your control.
“Exercise is one of those. It’s a mood elevator. It also is helpful to do all of the things that you can do to influence your treatment. Choosing which treatment provider that you have, choosing who you are going to involve in treatment.
“I’ve found that on the one or two occasions when I went to appointments by myself, it was much more stressful. So having other people share the experience with you is important.
“I feel a lot more deeply and I have a lot more awareness of my feelings. My gratitude for everything around me has grown exponentially. Stopping to smell the flowers is not just one of those clichés. I stop and smell the flowers, I stop to appreciate a couple of words that my secretary said when I walked by or that the sun is out today.
“There is so much more that I appreciate.”
“My relationships have changed, especially with my children. They saw a crack in Mom that was unexpected. I’m more fragile now than I was before. I was always the tough one, the disciplinarian. I had no health issues at all. The diagnosis came out of the blue for all of us.
“Our grandkids live a bit further away and we used to not see them as often, but now we won’t miss out on anything. There was a birthday party for our granddaughter and because her brother came down with a fever everyone else decided to stay out of the ‘sick house.’ We showed up anyway. I wanted to be there for every birthday party she wants me to attend.”
If you know someone who is facing a lung cancer diagnosis or may wish to participate in a live event in 2016, please share LVNG.org as a resource. We plan to add new stories to the LVNG With web site on a regular basis. If you wish to contribute a story, sign up to keep in touch.
John McCarthy is VP, Global Commercial Excellence, AstraZeneca
Deana Hendrickson talks about how important it is to connect with other patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains:
Meg Maley, RN, BSN, hosts a panel discussion around the topic of supportive care for lung cancer patients. Dr. Eric Roeland, Assistant Clinical Professor of Medicine at UC San Diego, Niki Koesel, MSN, ANP, ACHPN, FPCN, Director of Palliative Care, Carolinas Healthcare System, Levine Cancer Institute, and Randy Broad, a 7-year lung cancer patient, join in the discussion.
The participants discuss supportive vs. palliative care, explaining that palliative care is actually an additional layer of support for patients and families. Discussing palliative care at the time of diagnosis will help the patient learn about all options and will lead to the best quality of life for cancer patients.
The Conversation then turns to the healing vs. curing debate. Niki and Randy both agree that healing is individual and depends greatly on the patient’s situation and perspective.
The panel then discusses the patient experience during treatment for lung cancer, and the challenges involved. Discernible challenges for patients going through treatment, especially chemotherapy, are the fear of hair loss and the onset of nausea.
Niki then talks about cachexia: what it is, and how it can be treated. She further explains how cachexia can be a heavy burden for patients and caregivers, and references several treatment options such as medications, energy conservation therapy, and cognitive behavioral therapy.
The Conversation concludes with all participants agreeing on the importance of communication and shared decision-making with the medical team.
Watch and listen as these esteemed participants discuss topical issues in Supportive Care for Lung Cancer Patients.
When I was diagnosed with lung cancer, it was a shock. It was like a fist to the stomach- and it turned my life and my loved ones lives- upside down.
My world changed immediately and drastically. But I had to learn quickly not to let fear, shock, anger or distress keep me from advocating for myself.
I learned very quickly that you have to be your own champion.
So, how does a lung cancer survivor best advocate for themselves?
- Never take no, or inaction (a form of “no”), as the final answer. Keep fighting. Your life is the most important to YOU! Don’t give up. If one doctor tells you to give up, find another. Keep fighting.
- Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?
- Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients. Other hospitals also deliver excellent services, but if you are uncomfortable with the treatment you are receiving, keep looking for a facility in which you have confidence.
- You know your body best. If something doesn’t seem right, make sure your doctor knows. And takes it seriously.
- Keep in mind that your oncologist works for you. If, at any moment you decide he is not doing an adequate job for you, fire him. You do not have to continue trusting your life to him if he loses your faith. Your medical team holds your life in their hands. Find the ones you trust completely.
- Conduct your own research. Look at respected sites, such as LUNGevity, American Association for Cancer Research, Bonnie Addario Lung Cancer Foundation, American Cancer Society, American Lung Association, the National Institutes of Health (NIH), etc. Make sure that you can differentiate between opinion and vetted study results. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor knows what all of the latest treatments are.
- Start a binder or a file where you keep important test results and copies of your scans. List questions for your doctor so you don’t forget when you get into his or her office.
- Take along a friend or family member to doctor visits. Two sets of ears are better than just one, especially if you receive some shocking news during the appointment.
- Join support communities (in-person or online or both). It helps to spend time with others who “have been there, done that.”
- One of the best organizations that I have associated with since my diagnosis is LUNGevity. It is dedicated to funding research for lung cancer and to providing HOPE to all lung cancer survivors. If you want to spend time with others who have lung cancer and exude HOPE, get involved with LUNGevity!
- Spend time spreading the truth among your friends and acquaintances! Unlike what the general public, and unfortunately, even many doctors, believe, lung cancer doesn’t just happen to smokers. It doesn’t matter if you smoke or don’t, are white or black, male or female, young or old, skinny or fat. Lung cancer happens to people with lungs.
- Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. Smile, even if you don’t feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn’t have to consume your every thinking moment. And, it shouldn’t.
It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The misconceptions and stigma that are associated with lung cancer can make people look down on you or discount the importance of your disease and your fight.
Keep your head up. Whether or not you have a smoking history, everyone deserves quality treatment and compassion. No one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Set aside any feelings of shame or guilt or if you never smoked, the question “why me”. Become a champion for yourself. And remember, there is hope.
My story is a story of hope.
Yours can be too!
During a recent town meeting for lung cancer patients, families and caregivers, Katie Brown, Certified Patient Navigator and Vice President of Support and Survivorship Programs at LUNGevity, explains how LUNGevity can help patients gain the knowledge and support they need to participate in meaningful and productive discussions with their medical team. An informed patient is a confident and empowered patient. Knowledge leads to confidence and shared decision-making.
LUNGevity and other patient advocacy organizations offer patients information about their disease, clinical trials and treatment options. Patients will have the opportunity to connect with other patients that have the same disease condition and share stories about their diagnosis, treatment and how they cope with their illness. They can then take comments and questions back to their medical team for discussion.
In the video below, Dr. Malcolm DeCamp, Chief of Thoracic Surgery, Robert H. Lurie Comprehensive Cancer Center of Northwestern University explains that it is crucial that patients communicate physical and emotional changes to their medical team. The patient plays a major role in their plan of care and they need to provide constant updates and information to their team so that they can get the best care they deserve.
Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer
In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.
How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.
If you think I’m exaggerating, take a look at the numbers:
- Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
- Lung cancer is the second leading cause of all deaths in the US.
- The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
- 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
- Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
- Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.
Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.
Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.
November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.
And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….
People who aren’t directly impacted by lung cancer may not know that November is Lung Cancer Awareness Month.
What exactly does that mean and what can people do during November to raise awareness about lung cancer?
Lung Cancer Awareness Month (LCAM) is a national movement originally created by lung cancer organizations, survivors and advocates to dispel the stigmas associated with having lung cancer and to raise awareness of the disparities in lung cancer research during the month of November. This is done in most part by making the general public aware of the lung cancer survival rates and lack of funding for research, and putting a face to the disease.
Most people don’t know that 1 in 15 people will be diagnosed with lung cancer and that over 60% of people who are diagnosed are never smokers or people who quit smoking decades ago. It’s the deadliest cancer killer, killing twice as many women as breast cancer and three times as many men as prostate cancer.
As VP of Support and Survivorship for LUNGevity, I support and get to know a lot of lung cancer fighters. I have supported a patient as young as 16 with stage 4 lung cancer. It can happen to anyone with lungs. LCAM is about sharing the facts about the disease and need for funding, informing the public and talking to media,; it’s about offering resources to patients and providers and highlighting advocacy opportunities to change the public’s perception and outcomes for patients.
LCAM It’s not about smoking cessation or tobacco control. Some people mistake LCAM for an opportunity to talk about the hazards of tobacco and promote smoking cessation. That’s something that we should encourage people to do all year long. But that’s not lung cancer awareness. That would be lung cancer prevention, and only then it would pertain to just 10% of smokers.
Join LUNGevity, survivors and advocates across the nation as we unite to shine a spotlight on lung cancer this month.
Here are some ways you can help make a difference this month:
- Tell someone that November is lung cancer awareness month.
- Take a picture with a fact sign or your LUNGevity ‘Bandy’ wristband and let’s make it viral.
- Share the facts about this disease and let people know that if they breathe, they can get lung cancer too.
- Distribute materials in and around your area to hospitals and support organizations
- Share our articles, blogs and videos over social media.
- Let people know about LUNGevity’s comprehensive lung cancer 101 website
- Let people impacted my lung cancer know about LUNGevity programs and services
- Participate in Twitter Chats
- Create a new event or volunteer or participate in events in your area
- Volunteer to be a buddy for a patient or caregiver
- Become a volunteer Social Media Ambassador
Let’s raise awareness this November in honor of the 435 people who die of lung cancer each and every day and the 220,000 people in America who are living with it.
(Editor’s note: Randy Broad is a 7 year lung cancer patient, avid lung cancer patient advocate, and Secretary of the Patient Empowerment Network Board of Directors. He is a former international business executive and author of the book, It’s an Extraordinary Life – Don’t Miss It.)
At 52 years of age, Randy Broad was diagnosed with non-small cell lung cancer. There was no history of lung cancer in his family. He had no idea of what the disease was. He was recommended to an oncologist, but realized pretty quickly that this oncologist was not for him. Randy did some research and, as he says, ‘got really lucky’ and found Dr. Renato Martins at Seattle Cancer Care Alliance. Randy knew right away that Dr. Martins was the right doctor for him.
Dr. Martins enrolled Randy in a clinical trial, telling him that a trial was ‘tomorrow’s drug today’. That’s all that Randy needed to hear. Eight years later, Randy is living well and telling his story to countless other lung cancer patients world-wide.
In honor of Lung Cancer Awareness Month, I interviewed Randy to ask him about how he is living and coping with the history of a lung cancer diagnosis. Below are his thoughts.
Joan: How did you deal with the initial diagnosis of lung cancer?
Randy: All I could think about was my kids. That they would grow up without a dad. As soon as I was diagnosed, I had to text my kids and tell them that I loved them. I had to figure out what it was all about and what really mattered to me. I went to the local oncologist and was told that I had 2 years to live. I thought, how does he know? How can he say that without even knowing me? I just knew that I had to shop for another doctor. This is a life and death decision. Then I stumbled upon Dr. Martins at Seattle Cancer Care Alliance and I knew that he was the doctor for me. He advised me to enroll in a clinical trial and I trusted him and did just that.
Joan: Knowing what you know now, what would you have done differently?
Randy: Back then, some of the resources weren’t available like they are now. I didn’t really know how to search for a good doctor. Now I really think that the best way to find a doctor is through a pharmaceutical representative. They know all the doctors at all the hospitals. They know which doctor is doing what research and who is most knowledgeable about drugs and clinical trials.
Joan: What would you tell a newly diagnosed lung cancer patient?
Randy: Take someone with you to every doctors appointment. Take notes, talk it over with someone else, because really, you will only take in about half of what the doctor says. You really need someone there with you. Get a good doctor that you can relate to – a specialist for your condition. And even if you really like your doctor, get a second if not a third opinion.
Joan: How do you stay healthy today physically and mentally, knowing that you have survived a serious illness?
Randy: You have to live your life. Do what you love. Focus on what matters and not on what doesn’t. Assess what you want out of the rest of your life. A cancer diagnosis puts life into perspective. Take time to enjoy. Personally, I started writing. First I wrote a blog and got my thoughts down every day. This was cathartic for me and really helped me. It also helped me keep in touch with family and friends who were interested in how I was doing. A blog was a way to communicate my story to all of them. Then I started writing a little more philosophically and my blog turned into a book! Writing this book was a great experience. I wrote favorite stories about my life so that my children could read them and know about my past experiences.
As far as exercise goes, I did yoga and meditated during the time I was getting chemo. Now, I ride my bike and walk. I only really have half a lung that works, so stairs are difficult for me. I have always eaten well. I like to cook and eat healthy. People used to send me information about diet plans. I’d receive about a diet a day: melon diet, this diet, that diet. What I do is I eat in moderation. If I want to eat a steak, I eat it. I enjoy it. I really try and live each day and enjoy what I have.
Joan: Any last thought as a 7 year lung cancer survivor?
Randy: As lung cancer patients, we don’t think about the destination, but live life in moments. When lung cancer patients share their stories, you will hear, ‘I just want to see my daughter get married’, or ‘I just want to see my grandson take his first step.’ I have seen my daughter go through high school, graduate from college, fall in love and now she lives with her boyfriend and they just got a dog together. My life is now measured by milestones that I will always remember.
“The greater the obstacle, the more glory in overcoming it” Moliere
A cancer diagnosis is an overwhelming, life-changing, disruptive event in the life of anyone. When a patient goes to meet their doctor, they are usually stressed, anxious and afraid. Therefore, it is helpful and advisable for them to have a family member with them to take notes, record the conversation, ask questions and basically monitor the appointment and keep track of what transpired. The patient can then talk over the appointment touch points with the family member after the fact.
Also, the family member can either confirm or elaborate on the discussion with the doctor. It is often difficult for the patient to remember events or details when asked questions about side-effects, coping with their illness, day-to-day regimen and mental attitude. A family member can help provide these details and can add validity.
It is helpful to prepare for a doctor appointment by making a list of questions to ask and a list of events or topics to talk about. A family member can help with this and even record the conversation if that is necessary.
Make the very most of your doctor appointments by asking a family member to accompany you!
Watch the following video as Dr. Malcolm DeCamp of the Robert H. Lurie Comprehensive Cancer Center explains why bringing a family member to a doctor appointment is a great idea.
At a press interview with Dr. David Stewart, Head, Division of Medical Oncology, University of Ottawa, Dr Stewart laments the extreme inefficiency of the clinical trial process. Patients are dying while government is regulating. The clinical trial process is too long, too costly and too inefficient. Watch this video from The World Conference on Lung Cancer that recently took place in Denver, Colorado:
Please check back soon as we work to build more resources.