Archive for the ‘Advocates Perspective’ Category

It’s what we do next that matters

January 3rd, 2013 - by G. Alan Rader

My name is Alan Rader. I live in the country about 15 miles northwest of Harrisburg, Pennsylvania. I was diagnosed with stage 3 lung cancer at the age of 59. Like many survivors I’ve come to know, I was misdiagnosed for a few months before the pieces were put together. The results of a CT scan showed a mass at the peak of my right lung. The primary care dr. set up an appointment for me to see a surgeon who could see me in a month. I have to say that I wasn’t surprised about possibly having lung cancer. I was emotionally numb about it. I went to work the next day, I had to finish a job I was doing. All I knew about lung cancer was that it would kill me. I lost an aunt to lung cancer and it happened fast. I lost my father in law to lung cancer and happened slowly and painfully.

We weren’t about to wait a month to see a surgeon and lose even more time. My wife Susan spent part of that day researching what we could do now. She found Cancer Treatment Centers of Americas’ website during her search and called the 800 number. She talked to a guy who said they could see us on Monday. They recognized our sense of urgency.  That got our attention and we went to Philadelphia to see what they could do. It turned out to be a great decision.

My cancer was inoperable; it had worked its way into my spine and a rib. They called it stage 4 because it invaded a vertebral body. Others called it stage 3 because it was one tumor. I went through 30 radiation treatments and 20 chemotherapy sessions. A month after the treatments were complete they did another PET/CT to see where we were. Surgery was still out of the question, the proximity to the spinal cord made it too dangerous. I probably would be paralyzed. Cyberknife and 6 more chemo sessions finished it off. January 2010 it was NED and has been to this day.

During treatment I really had no significant painful side effects. I had no nausea. I did get fatigued and I did get dehydrated and I lost all my hair, the usual things I was told to expect. The doctors and nurses all did a great job, they seemed to have all the bases covered and made me extremely confident about the care I was getting. They did offer physical therapy and I strongly recommend doing that during treatment. It kept me in good shape; I learned breathing techniques and the importance of maintaining strength. They also offered acupuncture which they did often and sometimes during my chemo sessions. The only real challenge I have since is dealing with a severely damaged ulnar nerve. I am right handed so I’ve had to learn to live with that small inconvenience. The cancer had eaten almost 43% of the T1 vertibra.  I learned so much about lung cancer through all of this, things I never would have known.

I was a smoker but I had quit almost 5 years prior to my diagnosis. The industry I was part of also wasn’t conducive to great health either. I saw many of the guys I worked with pass on not long after their retirement from one lung disease or another. That’s why my diagnosis wasn’t a shock to me. What got me through the initial part of it was remembering that it’s what I do next that matters. The other stuff is history. During Lawrence Taylors’ acceptance speech at the pro football hall of fame, he said that a champion is determined by not how many times he’s knocked down, but how many times he gets back  up. I heard that many years before I got cancer, but I drew inspiration from it. I also was inspired by Jimmy Valvano’s speech at the ESPY awards long before I was diagnosed. It is available on YouTube or Google it, it’s a must-see speech.

People I meet sometimes start out with the smoking question. I’m not disturbed by it at all.  I understand the stigma associated with lung cancer and its connection to tobacco use. I use it as an opportunity to educate that person about the fact that almost 60% of new cases are nonsmokers and people who quit many years ago. Sometimes they are interested and sometimes I feel like I’m talking to the wall. Like I said before, it’s what we do next that matters. I do wish that everyone understood how many people are lost to lung cancer and how underfunded the research is. Perhaps it takes a loved one being diagnosed to raise awareness.  The fact is that 1 in 14 people will be diagnosed with lung cancer.  That is one reason I work to inform people about this disease, to increase funding for research and treatment.

Cancer Treatment Center of America has kept me involved in survivorship programs. I sometimes meet with new patients at the Philadelphia hospital. I’ve been part of their Patient Advisory Council. We are a group of survivors from their different hospitals. We meet in those cities, tour the hospital, talk to patients there and find ways to make the patient experience as good as it can be. We have made a difference and examples can be found all over the place. It is a hard job as everything is covered very well already. Our group has visited 3 of the hospitals with 2 to go. This torch will be handed over to a new group and the task will continue.

They asked me to be in one of their commercials which I did gladly. It is airing all over the country and has achieved results. I have met people in Philadelphia who told me they saw it and made the call. That’s what we did and I’m a survivor. They do really great things there and I’m proud to be a part of their efforts in the fight against cancer. I also take part in a program called the Patient to Patient Network. A new patient is offered an opportunity to speak with a survivor who has “been there, done that”. It’s very rewarding when I find out that someone I spoke with, sometimes for hours, made a decision to come to CTCA and is doing well. I’ve talked with well over a hundred cancer patients and look forward to seeing them in Philadelphia when our paths cross. These things keep me focused; I want all cancer patients to have good results. They do try to forward lung cancer patients to lung cancer survivors but we do speak with patients with other types from time to time. We aren’t giving medical advice or solutions, we’re trying to help them understand the treatment model and how their initial visit will happen. It helps ease their anxiety about traveling and those things. It has been very rewarding.

I read a full page ad about LUNGevity in the spring issue of Cancer Fighters Thrive magazine one day in the spring of 2011.  I checked out the website and joined immediately. The support group has been wonderful there. I posted my news now and then and I’m sure I ruffled a few feathers from time to time. I did get responses from survivors who had the same type of tumor that I did. Donna from the Minneapolis area was the first to answer and Kasey from very near my home came along too.  Donna was a 14 year survivor and Kasey, 7 years. They both gave me so much hope and inspiration. I found out that the type of cancer we share is less than 3% of all lung cancer types. I’ve never met in person another case like ours. I have talked to some newly diagnosed people with it and I always tell them about these 2 ladies. (No, I don’t use your names).

Last May, I had a chance to attend the Hope Summit in Washington D.C. There were almost 50 lung cancer survivors in one room. It was a very powerful thing. We were from every corner of the country and I don’t think any 2 of us were treated at the same place. There is great care all over this country and this was one happy group. We listened to speakers, shared stories, meals, laughter and even some tears. “That’s a full day.” We have lost a few of these wonderful people since then and we all know that this is the nature of the beast. I know these souls are still with us and the legacy they left will live forever in the hearts of those touched by them.

Sometimes I think getting cancer was the best thing that ever happened to me.  The people I’ve met have inspired me beyond imagination. I’ve met runners, cyclists, swimmers, “gymmers”, hikers, writers, workers, and we’re all  husbands, wives, fathers, mothers, sisters, brothers, advocates and many more all with this commonality. I’ve learned what things in life are important and the things that don’t matter at all. I wonder if these thoughts would be at the front of my brain if I didn’t get cancer. I know I’d still be working, I loved my little business. I wasn’t through, I had projects unfinished and more to do. It was as if the rug got pulled out from under me. I got back up, got in a fight and so far, I’m winning it. I might get knocked down again, I understand that, and I will get back up again.

My wish is that everyone everywhere would pay attention to what their body is telling them. Persistent coughing, pains that won’t go away, anything that seems out of the ordinary, go talk to your doctor. Go to as many as it takes until you are satisfied with the answers. Don’t worry about hurting doctors feelings by going elsewhere for another opinion. Don’t panic if it is a cancer diagnosis. Find out exactly what type it is before reading the entire internet. Ignore the statistics, we are people not numbers. Don’t be afraid to travel to a reputable treatment facility where ever it might be. Make sure you are fully confident in the team you select. A huge weight will be lifted from you with that faith. If you are in an occupation that puts you at a higher risk, demand tests for early detection. Lung cancer is usually advanced by the time of diagnosis. Listen to your body. Get it checked.

At first, I assumed that lung cancer was a death sentence. I quickly learned that it didn’t have to be. I was offered hope and I was inspired by the many survivors I met along the way. Hope, inspiration, faith, a positive outlook, family, friends and oh yeah, never underestimate the power of prayer. You can do it!

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Nurse Navigator Tammy Allred

December 6th, 2012 - by admin

Tammy Allred knew the moment she began working with oncology patients that she had found her calling.  The North Carolina native, originally from Chapel Hill, has been working in oncology for 29 years and loving it. Her official title is Sarcoma and Thoracic Oncology Nurse Navigator.  She is one of two lung cancer nurse navigators at the UNC Cancer Center and she is the first person a patient sees.

Allred works to provide educational materials to help patients understand their disease.  She supports and educates them during their treatments and helps them avoid all obstacles that they may face during their treatments.  She facilitates their appointments and maintains contact to make sure they don’t get lost in the care continuum.  She also makes referrals they may need to obtain medications and makes sure their insurance needs are met.  If patients are not insured or have special needs, she makes sure they are referred appropriately to get the help they need.

We asked Allred what recommendations she would give to someone who’s just been diagnosed with lung cancer. Her reply: “Do NOT Google anything about lung cancer! There is too much inaccurate information out there.  Go to a medical oncologist who is experienced in lung cancer.  Get a second opinion if you do not feel comfortable with what you are hearing.  Do not listen to old wives tales or compare your lung cancer to other types of cancers.  All cancers are not treated the same.  All cancers have different outcomes.  To sum it up, be a self-advocate. Lung cancer has changed so much over the past several years and continues to change in a positive manner.  There IS hope.”

There are also many misconceptions when it comes to lung cancer.  We asked Allred what she thought the biggest misconceptions the public may have about lung cancer.

“The biggest misconceptions are that lung cancer is a smoker’s disease and that there is no hope if you are diagnosed.  It IS NOT A SMOKERS DISEASE.  Lung cancer can happen to anyone with lungs.  And there IS hope.  Things are changing every day to improve the quality of life for people with lung cancer and treatments are getting better. No one deserves lung cancer and patients should not be blamed or feel guilt for having lung cancer.”

Allred has worked in different aspects of nursing from the med/surg floor, giving chemotherapy, hospice, clinical trials, and now with lung cancer patients.  She says she’s finally doing what she loves, combining all her experience in all these areas and navigating patients thru all the phases of their lung cancer experience.

She’s been working with the North Carolina LC Partnership for the past 5 years and loves doing outreach and education and raising awareness about lung cancer and correcting the misconceptions and stigmas about the disease.  She also mentors new navigators and shows them how to find resources that will help their patients.

One thing is clear to us: Tammy Allred puts her patients first.  She recently was nominated for Best Lung Cancer Healthcare Provider for the month of November on Facebook and won.  LUNGevity is glad to honor and recognize her passion and dedication and care of those affected by lung cancer.

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Jill Feldman

The Critical Battleground Community ~ Young Voices

November 19th, 2012 - by Jill Feldman

Leading up to the election and for a few days after I was obsessed with the absurd amount of time, energy and money spent on the presidential election. I just kept thinking, all that campaigning and now what? What if 1/4 of those resources were spent on raising awareness or money for lung cancer research? Do 1/4 of Americans even know that November is Lung Cancer Awareness month?

 Like most Americans, I followed the election the night of November 6th as different states were colored red or blue. I was particularly interested in the battleground states and the significance of winning those states for each candidate. It was also interesting how much emphasis was put on the importance of people getting to the polls and voting, especially for certain groups. The young voters, the future of our country, played a key role in the election.

Lung cancer isn’t much different. The opposing candidates are Lung Cancer and Life, and there are various ‘battleground’ communities in this campaign including, government, general public, medical professionals, patients, and caregivers. Young voices also play a critical role in this campaign.

  • The government has already shown us that lung cancer is not a priority, therefore, Lung Cancer wins that community.
  • Lung Cancer wins the general public because just like those who choose not to vote, the majority of society, for various reasons, chooses not to take a stand against lung cancer.
  • The medical community is split because there are still many medical professionals that perpetuate stigma and/or believe the disease represents nihilism.
  • Life clearly wins the patient and caregiver community, although there are still patients and caregivers that feel shame or are too sick to advocate for themselves, their disease and change.

That leaves the young voices — the critical battleground community that could compel others to rethink lung cancer. This is a community that can incite change by caring about the WHAT (what are we going to do) not the HOW or WHY (how or why someone gets lung cancer).

There is an insightful group of teenagers in the young voices community who have chosen to vote Life and lead that campaign. Deerfield High School, in Chicago’s northern suburbs, organizes School Chest each year, a three-week-long charity drive that unites students, teachers and residents behind an organization with a cause they believe in and connections in the community. LUNGevity Foundation was chosen as the 2012 beneficiary.

I can’t put into words the respect and admiration I have for these students. They recognize the impact and reality of lung cancer. They understand that we need to get past the blame game, and they know that anyone can get lung cancer. These teenagers are proud to stand up to lung cancer, and they do so with determination and conviction. They vote Life!

As a lung cancer patient and Deerfield mom of four, I am touched and completely awed by the students of Deerfield High School. They will help give lung cancer a much needed voice, and theirs will be loud. There won’t be a stigma to erase if this community understands the REAL story. They will make a difference — and that gives me so much hope for the future – for Life!

You can watch these amazing teenagers in action, and donate to their tireless efforts, by visiting www.lungevity.org/schoolchest & www.facebook.com/schoolchest2012lungevity.

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Dr. Jack West

A mistake I’ll never make again

February 10th, 2012 - by Dr. Jack West

   I usually write from the perspective of a lung cancer expert, but for one day and one post, I’d like to step out and speak from a patient advocate perspective.

   Though I spend a lot of time producing online content for patients and caregivers, really to enable patients to know enough to participate actively in their own care, I have confidence in what I know in caring for my patients and in the skills of the colleagues that I happen to work with. Probably because of that, I have had the confidence that other physicians know what they’re doing and will do a good enough job that I myself have often played the role of the historical “good patient” or “good caregiver” — in other words, I’ve assumed that any referrals were to a very good person and that they would do a great job.  Unfortunately, I was reminded in the course of my wife’s medical care that not playing an active role can come back to haunt you, which is something I want to always remind myself of when the time comes that we need medical care and the stakes are very high.  So a bit of background:

   A few years ago, I and my family were having a nice reunion with some of my medical school friends on the east coast, when one who works as an endocrinologist noted that my wife had a visible thyroid nodule (she never quite leaves work, I guess).  After the appropriate workup, it was found to be a thyroid cancer, which is certainly always of some concern but is extremely curable.  She went through the typical channels and saw an ENT surgeon who was supposed to have a lot of experience in doing thyroid surgeries, and I didn’t try to second guess her referrals and didn’t reach out to colleagues to find an expert.  Unfortunately, her surgery was complicated by the loss of not only her thyroid but also her parathyroid function, and the latter is a real pain.  She went from being healthy, energetic, and on no medications to less energetic (though fortunately easier for me to keep up with, I suppose) and on multiple pills throughout the day, requiring doctor visits, and with some real uncertainty about the potential ramifications over what we hope will be decades of follow-up.  And we’ve only heard from friends and colleagues who know more about thyroid surgery that while this complication is known to possibly occur, it almost never does.  And the folks I now talk who care for thyroid cancer patients in my community don’t seem to object to the musing that this particular surgeon might not have been the best one for the job, even if they try to be diplomatic about that.

(more…)

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Katie Brown

Talking About Lung Cancer

January 10th, 2012 - by Katie Brown

Hearing that you or your loved one has lung cancer can be shocking and overwhelming.

There are many emotional stages that you and your loved ones experience even before a treatment plan is made and a communication plan is needed.  One way to help adjust is to be sure you, your family and your medical team have good communication and a solid understanding of each other.  By learning communication tips and tools, you’ll be able to advocate for the care you desire and the support system around you will be able to clearly understand your needs and wishes.

You’ll need to speak clearly and openly with your medical team.  To make sure you hear your doctor and understand what he is saying, ask questions and verify his answers to you.  Make sure your doctor hears and understands your needs and concerns as well. Speak up, bring two lists outlining the concerns that you want addressed during your office visit.  Keep one list for you and give the other list to your doctor.  Make notes on your list and encourage your doctor to make notes on his list.

Make a plan with your medical team on your diagnosis, the immediate next steps, your treatment options, your exact treatment plan, and what to do when there are side effects. You also need a plan on how and who you will communicate your needs, concerns and wishes to.

If possible bring someone with you to your doctor’s appointments.  People hear things differently, which is why it is important to write things down, verify what you are hearing, audio record the visit, and/or bring another set of ears to hear what is being relayed to you.  Getting in plain writing a detailed description of your office visit and treatment plan would be ideal but it isn’t always probable or possible, so using one or more of these tools to get a clear understanding of your office visit and expectations will help keep you more at ease as you move forward in your treatment.

You also need to speak clearly with those around you to make sure your needs are addressed.  Your family, friends, employers and coworkers want to help you.  But they can’t help unless you let them know what it is you need.  This can be a challenge for some people who have difficulty asking for help.  To help those who have a difficult time asking for help, there are tools like Caring Bridge pages, Meal Train and other websites that allow you to list your needs and things in your everyday life that you may need assistance with.  You provide the website to your friends and family and they take it upon themselves to sign up for specific chores and to help with specific needs, like providing meals, yard work, transportation to and from treatments, and even a night out or much needed break for the caregivers.

Nurse navigators and social workers may also be available to help you communicate your needs and find the resources to help you during this journey with lung cancer.  There are also services that help with legal and financial needs as well.

For a listing of resources that can help you talk about lung cancer, please visit http://events.lungevity.org/cg/resources.html

What tips or advice would you give someone on the importance of communicating and talking about lung cancer?

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