Lung Cancer Survivorship: What’s Your Plan?

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By Jennifer King, PhD, LCA Director of Science and Research

Much of the first day of the Cancer Survivorship Symposium that I attended this month was dedicated to talking about Survivorship Care Plans.  An early peek at the results of our Needs Assessment Survey (take it today, if you haven’t yet!) suggests that not very many lung cancer patients have these plans after they complete treatment.  This is a problem. As pointed out at the meeting, often it is not even possession of the plan that makes a difference in your care, it is the conversations that go into the creation of the plan.

Cancer survivorship can be viewed as its own complex, “chronic disease”.  If you have been treated for cancer, you not only have to be monitored for recurrences, you may also be at a higher risk for second cancers, heart problems, fertility issues, emotional problems and more.  However, similar to the way cancer treatment is now becoming more personalized and precise, the care of survivors should also be risk-based and individualized.

For example, certain chemotherapies can make you more likely to have late-onset heart problems but others may lead to tingling and numbness in the feet and hands.  Shortness of breath is much more common after lung cancer than other cancer types.  Doctors should understand YOUR history, not that of “cancer survivors” in general, to be able to best monitor you moving forward.  This is the top section of most Survivorship Care Plans – describing your exact diagnosis (type of cancer, stage, etc.) and what specific treatments you had.

The next part of the Survivorship Care Plan focuses on how you should be monitored – and how you shouldn’t. This is important for so many reasons. First, many cancer patients feel disconnected from their care teams once treatment ends. Your oncologist may be focusing more on patients actively undergoing treatment and at some point may want to transition you back to a primary care physician (PCP). The PCP may be reluctant because they may not be well-versed in what is needed for your particular follow-up.   The Institute of Medicine, in an important report in 2005, called this phenomenon “Lost In Transition”.

A Survivorship Care Plan can spell out when and how you should be screened for recurrences and for possible side-effects that are relevant to you. It can specify which specialists you should visit and how often. This can give you (and your PCP) more understanding and clarity on how you move forward and who you see for what purpose.  This may also give you more emotional peace of mind and can save you time and money. One case example at the meeting showed a patient being followed for too many possible things, some of which she was not at a high-risk for, resulting in unnecessary time, loss of work, and added expense.

Ideally, these plans will be filled out and discussed jointly by you and your treatment team.  Hopefully, your treatment team will suggest using one, but if not, here are some templates that you can bring to your doctor for discussion and development of a plan: My Care Plan by Journey Forward, the survivorship plans on Cancer.Net or the LIVESTRONG Care Plan.

The ultimate goal is to plan for the right amount of follow-up care based on YOUR disease and treatment history and enough medical care to ensure you are followed according to known evidence-based guidelines, but not too much that it will negatively impact your quality of life.

On a side note, I would encourage you to talk to your support network (loved ones, friends) about the plan too. Many cancer patients feel like they have a team with them when undergoing treatment. Then, once treatment is over, those people declare victory and go back to their normal lives and don’t realize the challenges of living beyond cancer. Helping your network understand that your path forward may continue to present emotional and/or physical challenges can improve your support as you move into the next phase.

I learned so much at the meeting — but even better was the educating that we did. In a community largely dominated by research on breast cancer, my LCA colleague and I explained to many people that the tide of lung cancer is changing. With coverage of lung cancer screening plus six new drug approvals in 2015, NOW is the time to start understanding lung cancer survivorship because it’s about to start increasing.  We were pleased to find that when we talked to survivorship researchers, they agreed.

 

Above and Beyond: Creating a Community Lifeline

Lori received LCA's Support Group Facilitator Award in 2011

Lori received LCA’s Support Group Award in 2011

By Lori Robinson

My name is Lori. I am not a lung cancer survivor.  I have been running a monthly lung cancer support group in Central Florida for the past six years.

When I decided to start the group, I was working for a pharmaceutical company and noticed the essential need for in-person support for those impacted by lung cancer. It didn’t take much to realize how significantly this community was overlooked.

I saw that patients wanted a safe place to share their fears, experience comfort, peace and hope in the presence of others who share in the journey. On top of dealing with cancer, lung cancer patients also experience a stigma attached to the disease, a shame that is difficult to escape. Lung cancer is an equal opportunity disease; it does not discriminate.  Today, the pendulum is swinging and folks are realizing this.

Our monthly support meetings consist of between 25-35 patients and caregivers. It is hard to believe that when we started six years ago, we didn’t see our first member for three months. Starting a support group takes time, patience and determination. You must create an awareness in the community and they will come.

This group has been and continues to be, a very important place for many.  We had a member who was having such a difficult time he told me the group literally saved his life.  Every month someone will say how much this group means to them.  Of course, there are tears, but we laugh, learn, grow and become so much better, together.

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Lori and her support group in Central Florida

Although we always have a support component to our group, you can’t keep doing the same thing every month. To spice things up, we try and incorporate new and interesting activities and programs, like relaxation techniques and art therapy. We also bring in guest speakers to discuss diet/nutrition, psychosocial elements of the disease, medical/radiation oncology and thoracic surgery.  We are always getting a pulse from members because needs are constantly changing.  Our group is successful because we are open and flexible with topics and the desires of the group.

Working with lung cancer patients has taught me that the human spirit is far more powerful than I ever imagined and absolutely anything is possible if you believe in your dream.  I believe in people and what we are able to achieve together.

If you would like to find a support group near your or are interested in starting your own, we can help! The Lung Cancer Alliance National Lung Cancer Support Group Network  consists of 90+ lung cancer-specific support groups across the country. They will help you get started, provide you with free services and tools to grow and maintain your group.

A Tale of Twin Sisters

“My sister and I, you will recollect, were twins, and you know how subtle are the links which bind two souls which are so closely allied.”  – Arthur Conan Doyle, The Adventure of the Speckled Band

Noreen (right) and her twin sister, Maureen (left) at a wine and painting class a few months post-surgery.

Noreen (right) and her twin sister, Maureen (left) at a wine and painting class a few months post-surgery.

When I was diagnosed with lung cancer, my first thought was my twin sister. Could this be genetic? Might she have the same diagnosis?

I was incredibly fortunate to have found my lung cancer at stage 1 simply by addressing my smoking history with my doctor at an annual check-up. I had smoked for 30 years and fit the high risk criteria, so I was not surprised when my CT scan results came back showing there was something in my lung.

I had surgery two months later to remove the nodule and was in and out of the hospital in a few days, thanks to my lungs strengthening over the past year since I had quit smoking. After several years of breathing troubles and COPD flare-ups as well as missing Christmas with my family and having to leave my daughter’s wedding early, I decided I’d had enough.

While I was dealing with my lung cancer diagnosis and treatment, my sister, Maureen, was still a heavy smoker. Our mother smoked 3-4 packs a day and we both took on the habit at an early age. Like me, she was at high-risk and I urged her to get a scan. If there was something there, we’d deal with it, together. Unlike me, she was nervous to go through with it, but eventually she came around.

To her dismay, the results came back showing two spots, but it was unclear if they were actually cancer. The medical team opted to do surgery, rather than a biopsy which her lungs were too weak to tolerate.

I am pleased to report that my sister’s spots were old infections in her lungs. We both took great comfort in knowing it was not cancer. She is still trying to kick her smoking habit and I know she will eventually, but that hasn’t stopped her resolve to help me in my journey. She recognizes that she’s at risk and is glad she made the choice to get screened.

I had my first six month check-up since my surgery in November and the CT scan results were clean! Since my surgery, my husband and I have started to walk in the park every day to strengthen my breathing and stamina. Christmas was spent with my family, including my sister, and I never once had trouble breathing or any other health issue.

I feel so lucky to have found my cancer early. To find out if you are at risk for lung cancer and may need a CT scan, visit www.atriskforlungcancer.org.* For further questions call 1-800-298-2436 or email support@lungcanceralliance.org.

*Questions are based on current “high risk” criteria for lung cancer. Talk to your doctor about a CT scan if you do not fit the high risk criteria, but are concerned you may have lung cancer.

5 Tools To Help You Achieve Your Health Goals!

Stick with your health goals this year!

Stick with your health goals this year!

The start of the year brings hope, optimism, new goals and resolutions. Despite our renewed outlook, after a few months, or even weeks, it can be easy to lose sight of these goals. Luckily there are tools out there to help us stay on track. We have put together a list of the top online health tools to help you achieve your goals and take control of your health this year!

LOSE WEIGHT
Lose It is designed to help you lose weight in a healthy, sustainable way. You can create recipes, scan barcodes and search for menu items at local restaurants to keep track of your calorie intake; plus it tracks how many steps you take!
GET IT: Search “Lose It” in your App store or visit loseit.com

GET CONNECTED
LCA Unite is an interactive mobile app created just for the lung cancer community. LCA Unite connects you with others in your shoes through chat rooms; helps you keep track of your appointments and easily share updates with your loved ones; and helps you track your side effects from treatments and find events and support near you.
GET IT: Search “LCA Unite” in your App store

GET FIT
A FitBit helps you stay motivated and improve your health by tracking your activity, exercise, food, weight and sleep. An alternative and less expensive option is the Health app on your iPhone, which is customizable and helps track your steps, activities and fitness level.
GET IT: FitBits can be purchased at fitbit.com or search for the “Health” app on the home screen of your iPhone

FIND PIECE OF MIND
If you are a former or current smoker, take this simple online test at www.atriskforlungcancer.org to find out if a CT scan is recommended for you. Most people who get scanned will not  have lung cancer, so find out today and put your mind at ease.  (Note: the test is based on current “high risk” criteria for lung cancer. Talk to your doctor about a CT scan if you do not fit the high risk criteria, but are concerned you may have lung cancer.)
GET IT: Visit atriskforlungcancer.org

QUIT SMOKING
Smokefree.gov helps you quit smoking for good with the help of a supportive community. The website gives you the tools to create a plan, receive help via text message and phone and stay on track. It is never too late to quit!
GET IT: Visit Smokefree.gov
Tell us what tools do you use to keep up with your health goals? Don’t forget to update us on your progress!

 

 

 

Your Voice Matters

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By Jennifer King, LCA Director of Science and Research

Usually that’s election messaging, but today I’m coming at it from a different angle. I get way more excited about science than I do about politics.

You may be surprised to learn that we are being asked constantly, “What do the patients value [or want, or need, or think about XYZ]?” We talk to patients every day and have a fairly good idea of this, but we really want to know more too.

I typically start with, “Well, the lung cancer patient population is extremely diverse and has a very diverse set of needs.”  While I believe this is true, I want to hear it from you.  Because of this, we have launched a Lung Cancer Community Needs Assessment Survey.  Please take it today.

You are our community, we do everything we do for YOU. We should know as much as we possibly can about who you are, what you have experienced, what you want, what you value and most importantly, what you need.  This will make us better.  It will help shape our program offerings and make us better able to serve you and tell others how to serve you.

Here is one example. I am tasked with expanding our research programs.  Given the new drugs on the market and the new availability of screening, I expect to see a higher number of lung cancer survivors in the coming years.  So I have made survivorship research one of our priority areas.  Therefore, I want to know about everything that all of you who are survivors are facing right now so I can make sure we are embarking on the right research studies to make life better for you and those to come.

But it doesn’t stop there. Do you know the expression, “can’t see the forest for the trees”? Patients are not always the best ones to know how they are doing.  A loved one of mine had cancer treatment awhile back.  While it was caught early and he is completely fine, he still (years later) naps a lot.  Really a lot. If we’re all sitting around on couches, he’ll be asleep. And he never used to nap.  I’m pretty sure that if he goes to the doctor, he says “I’m doing great.”  But his wife knows. And I know. Chronic fatigue is clearly a long-term side effect for him.

So our survey is open not only to patients and survivors, but to caregivers, family members, friends, anyone who has had someone in their life touched by lung cancer.  Those people might not know all the answers and may choose “I don’t know” a lot. But that’s ok. We will still learn from it.  And we will probably learn more than we would just from the patients/survivors themselves.

If you’re reading this, it’s likely that you have somehow been touched by lung cancer. So, please, take 15 minutes (20 if you write a lot) and share your voice.  It matters to us.

And thank you to all those who have completed it!

 

It’s About the People

 

“I am in the lowest survival rate and I am going to BEAT THIS!!! BRING IT ON LUNG CANCER. I AM TAKING YOU DOWN.” _Tami

“I am in the lowest survival rate and I am going to BEAT THIS!!! BRING IT ON LUNG CANCER. I AM TAKING YOU DOWN.”    – Tami

By Tami Budd, lung cancer survivor

My name is Tami and I am a 54 year old stage IV lung cancer survivor. 2 years ago Monday (Dec 6, 2013) I knew nothing about lung cancer, including the fact that almost 20% of the 157,499 people that die of lung cancer each year have never smoked.

I went to my doctor with a sore muscle on my right side. I had an x-ray, which resulted in a questionable spot. That was followed by a CT scan, showing that the spot was actually stage IV non-operable, metastatic non-small cell lung cancer. I was completely taken by surprise by the news. I am considered a non-smoker and before this thought you had to smoke to get lung cancer. My doctor told me, if I had not found it I would have been dead in a year. WOW!

When I was diagnosed a friend said “It’s not a death sentence, it’s now a condition you just have to deal with, like cholesterol or arthritis.” For some wonderful reason that just put things in perspective. Rather than feel sorry for myself, I chose to take action.

What could I do to help others? To help myself? I am so fortunate to have found Lung Cancer Alliance, who has served as a guide, support and inspiration for me along my journey. I know that the money I raise for them is going directly into helping those touched by the disease via research, advocacy and support programs. Lung Cancer Alliance is like a family; it is not just about the money for them, it is about the people.

Tami and her nephew at a walk she organized to raise funds for lung cancer.

Tami and her nephew at a walk she organized to raise funds for lung cancer.

This year, I hosted a tennis tournament, raising over $4,000 and joined the Lung Love Walk Houston planning committee to help raise awareness and funds (we raised over $90,000!) for this important cause. I was so surprised at the outpouring concern my friends and family had.

I wake up every morning knowing I get another day of life to live. While I have the opportunity, I want to do everything in my power to help cure this terrible disease so that future generations don’t have to deal with it. I am grateful to Lung Cancer Alliance for giving me the opportunity to do just that!

This December, every dollar you give will be matched to make a direct impact for those in need. Your generous donation will help those touched by lung cancer, like me.  Give today!

A Message from Lung Cancer Caucus Co-Chair, Congressman LoBiondo

Representative Frank LoBiondo (NJ)

Representative Frank LoBiondo (NJ)

By Representative Frank LoBiondo (NJ)

As many of us know too well, lung cancer remains the leading cause of cancer death for both men and women in the United States. And, like countless Americans and many of you, my family has been directly affected by this devastating disease. My wife Tina lost both her parents to lung cancer.

Tina’s parents are only one of countless stories of lives that could have been changed with more advanced lung cancer detection and treatments. Nearly 160,000 Americans will die this year due to lung cancer; an estimated 3,900 from New Jersey alone. Even as lung cancer remains one of America’s biggest killers, lung cancer research is the least funded of the major cancers. Likewise, survival rates for lung cancer have tragically-lagged compared to those for other cancers.

I, along with Lois Capps and Rick Nolan, recently launched the bipartisan Congressional Lung Cancer Caucus to help educate and inform our colleagues on issues specifically related to eliminating stigmas, improving survivorship, furthering research and ensuring equitable access to preventative screenings, treatments, diagnostics and testing. Along with the Lung Cancer Alliance, we are pushing for greater general awareness and additional federal funding for lung cancer research, ensuring it receives the support and resources it demands.

For each of us, the fight against lung cancer is personal. Together, we believe a coordinated and comprehensive effort must be pursued to reduce the mortality rate of lung cancer. Researchers have achieved great successes in many areas, raising the hopes of countless families in the process. With adequate federal and private support, there is no reason to believe that progress can’t also be made on lung cancer. Together, we can help change the lives of those individuals and their families battling lung cancer for the better.

 

 

20 Things We Are Thankful For

Lung Cancer Alliance staff.

The staff at Lung Cancer Alliance

As we near the end of our 20th year in our fight against lung cancer and enter the holiday season, we reflect on the top 20 reasons to be thankful.

1. SURVIVORS!: You inspire us every day to keep up the fight! We won’t give up, because you won’t give up! We admire and honor your courage and energy.

2. HEALTH CARE PROFESSIONALS: Those nurses, doctors and support staff who have dedicated their careers to saving lives.

3. OUR BOARD OF DIRECTORS: They guide us and support all of the staff as we work to make real change for lung cancer.

4. OUR DONORS: Simply put, we could not do what we do without your generous support!

5. SCREENING: Low dose CT screening for those at high risk will shift survival rates and has the potential to save thousands of lives a year.

6. NEW TREATMENTS: Immunotherpies, targeted therapies, advances in radiation treatments. These all increase survival for so many patients!

7. SHINE A LIGHT ORGANIZERS: It isn’t easy putting on an event every year, but hundreds of volunteers step up in November to do just that!

8. SUPPORT VOLUNTEERS: Our support programs would not exist without those touched by lung cancer stepping up to help others.

9. POLITICAL ADVOCATES: $102M in federal research funding and a Lung Cancer Caucus have everything to do with people reaching out to Congress.

10. CAREGIVERS and LOVED ONES: We know that so many survivors depend on the selfless actions and care of friends and family that make up their support system.

11. OUR LUNG CANCER COLLEAGUES: We can’t do this alone and there are other lung cancer specific foundations making a difference as well.

12. SCREENING CENTERS OF EXCELLENCE: Close to 400 centers have stepped up to make sure those at risk get responsible, life-saving screening.

13. OUR POLICY PARTNERS: Here in DC and throughout the country, other organizations have taken up the cause right alongside of us.

14. SPONSORS: We are so grateful for our corporate and local sponsors who support our screening, advocacy and patient education efforts along with our 200+ events each year.

15. SUPPORT GROUP FACILITATORS: These individuals are out in the community bringing those diagnosed together to provide information, compassion and hope.

16. STAFF: We are so proud of our dynamic and dedicated staff that has worked together to make Lung Cancer Alliance the highest rated and most effective lung cancer charity in the nation.

17. OUR COMMUNITY: On Facebook, Twitter and through our Mobile App.

18. LUNG LOVE RUN/WALK VOLUNTEERS: In Philadelphia, Portland, Houston and beyond, our volunteers put together fun, meaningful and energizing run/walks for thousands of people.

19. THE CONGRESSIONAL LUNG CANCER CAUCUS: This is historic and provides a platform for education in Congress like never before on lung cancer issues.

20. THE MEDIA: More and more, there are stories highlighting lung cancer survivors and sharing the true face of the disease to change public perceptions and break the stigma.

Let us know what you are thankful for this holiday season or say thank you with a gift in honor of someone you love.

 

A Message for LCAM from Congressman Nolan

Representative Rick Nolan (MN)

Representative Rick Nolan (MN)

By Representative Rick Nolan (MN)

Every year, we lose tens of thousands of lives to lung cancer – the world’s most lethal cancer. The simple truth is despite this disease’s impact on smokers, non-smokers and veterans alike, blame and stigma have unfortunately put lung cancer on the back burner when it comes to dedicating resources to prevention, treatment and a cure.

Lung cancer is a terrible disease that has affected so many families, including my own. Anyone with lungs can get lung cancer. When my youngest daughter, Katherine Bensen, was diagnosed with stage IV non-small cell lung cancer (NSCLC), I decided to spearhead the effort to create the Congressional Lung Cancer Caucus, which is dedicated to eliminating the stigma, reducing mortality, improving survivorship, furthering research and ensuring equitable access to preventive screening, treatments, diagnostics and testing.

Regardless of people’s personal, medical or military history, patients are often left alone to navigate an all-too-often unsympathetic healthcare industry. That’s why we are so grateful for the collaborative coalition now provided by the Lung Cancer Alliance and the newly formed Congressional Lung Cancer Caucus. Patients fighting for their lives must have more support – especially when they face so many challenges in their care. The Lung Cancer Alliance provides invaluable services to aid fighting cancer. Under their care, individuals and advocates can receive the information and support they need.

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Rep. Nolan and his daughter, Katherine

We are proud to join the Lung Cancer Alliance in making lung cancer research a priority, which is why we are working to increase research funding and reduce stigma through our establishment of the Congressional Lung Cancer Caucus — finally taking a much needed step forward after decades of stagnation. Our bipartisan caucus will raise the profile of lung cancer and serve as a clearinghouse of information to aid members of Congress in their understanding of lung cancer and how to fight it.

The Congress is making progress in funding for lung cancer research. In July, the House passed the 21st Century Cures Act – which I cosponsored and strongly supported – which will dedicate millions more a year to lung cancer research as part of the National Cancer Institute’s $5.4 billion annual cancer research package and expedite the new drug treatment approval process.

But unlike other cancers, until recently, survival rates of lung cancer haven’t improved since the ‘70s – largely because the stigma still associated with the disease has stunted research.  Lung cancer kills more people than colon, breast and prostate cancers combined. Yet government officials often fail to realize the unnecessary suffering of both veterans and civilians caused by the lack of funding. Veterans serving in the armed forces from World War II through the Gulf War were exposed to lung cancer causing substances like asbestos and Agent Orange. As a result, veterans are much more likely to have lung cancer and to die from it.

As a nation, we have a duty to all Americans afflicted with lung cancer. It’s about time we dedicate the appropriate resources to prevention, treatment and a cure for this terrible disease. Please join us in fulfilling that obligation by raising awareness, advancing research and supporting the Congressional Lung Cancer Caucus.

You can help the Lung Cancer Caucus grow! Click here to ask your Member of Congress to join today!

 

Advice from a Marine’s Daughter

Reilly, her dad, mom and siblings.

The Ebbs family at the beach.

By Reilly Marie Ebbs

For the last 17 months I have watched my dad fight lung cancer. My dad is a 49 year old United States Marine Corps veteran who has never smoked a day in his life.  He served in the Gulf war for four years and while in Kuwait for nine months was covered in the fumes from the burning oil fields.  His doctors conclude this is where he got his cancer.

After months of coughing he was diagnosed with stage IV non-small cell adenocarcinoma with barely two years to live. Fortunately, he has responded well to chemotherapy treatments, giving us hope that his prognosis will deter the two year expiration date.

I have always admired my dad for his immense strength, not only in the Marines but also at home with his family. He has always been our rock and continues in that role even in the face of something as overwhelming and unnerving as lung cancer.

My sister and brother were only seven and nine years old when my dad was diagnosed. After a very long and emotional night of processing this realization as a family, my siblings went to school where they were exposed to their classmate’s experiences and ideas of cancer. They came home terrified. Despite what the world was telling them, my parents always tucked them in at night, ensuring them everything will be okay.

I wish I could say that we have been spending more time together as a family since my dad’s diagnosis. The reality is that life goes on even with a terminal illness casting a shadow over our lives. It is not like the movies, where we can drop everything and spend tons of time together.  There are mounting medical bills, long chemo appointments and the dreaded side effects.  It’s the sad reality of this disease; it consumes health and precious time.

My advice to others in my situation would be to make memories.  It sounds cliché, but it’s been my family’s motto from the beginning.  Because in the end all we will have left are our memories.  Never take a moment for granted. When you feel weak, lean on your support system for strength. Sometimes I have a good day and can lift my siblings up, while other days I need them to support me.

While the rest of us have our moments, not once in these months have I seen my dad fear anything. I believe this strength and stability comes from his time as a Marine, always maintaining his courage and perseverance when faced with unimaginable situations. Now met with a different type of war, his valor carries our whole family and inspires us to push on.  Together we will get through this battle.

Learn more about veterans and their risk for lung cancer here.