When I was 22 I was diagnosed with early stage cervical cancer. I had two surgical procedures and years of close follow ups, but I went on with my life and never spoke about it with anyone…I mean I was 22…my friends didn’t want to talk or hear about anything like that.

When I was 29, my seemingly healthy, never sick dad lost his voice. The weird thing was he didn’t have a sore throat and he didn’t feel sick. Just a little back pain. A trip to his GP, an ENT and eventually a pulmonologist lead to an extensive stage diagnosis of lung cancer with metastasis to the liver. The two tumors in his left lung had paralyzed his vocal cord which is why he lost his voice.

At that time, not knowing anything about lung cancer, I thought…well he can do what I did. We caught it early as soon as he had a symptom! So he can have surgery…maybe at the worst chemotherapy, but he’ll be ok, just like I was.

What I didn’t know at that time that there was no early detection for lung cancer, my dad wasn’t a candidate for surgery and chemotherapy and radiation would be palliative at best. I was his caregiver for 11 months and 21 days.

12 years ago my family received very little compassion and there was no support for people affected by lung cancer in my area and really very little support nationally. So we set out to change that. I co-created the first ever online lung cancer support community for people affected by lung cancer. Today we have over 400,000 posts and it is a proud service of LUNGevity Foundation. (www.LUNGevity.org)

LUNGevity also offers incredible online resources—so that no matter where you are in the world, whether or not your hospital offers an in person lung cancer support group, all you have to do is log in or call us and you’ll never go thru your lung cancer journey alone.

I’ve been on staff with LUNGevity since 2010 and I’m the VP of Support and Survivorship Programs.

I want people to know that lung cancer is the deadliest cancer killer. It kills more people than breast, prostate, colon, pancreatic cancer COMBINED. There is still no early detection test. By the time there are symptoms the cancer is usually in stage 4. Treatment options are limited because of the lack of funding for research and the survival rates are very low.

About 435 people die from lung cancer each and every day. That's like a jumbo jet crashing to the ground---every single day.

I want people to know that anyone, regardless of age, gender or even smoking history can get lung cancer. If you breathe, you can get lung cancer too- even if you've never smoked a cigarette. And for those that did smoke- they deserve treatments and a chance to live too.

It's time to stop the stigma and join together to fight lung cancer. It's time to fund research so that we can find early detection and targeted therapies and support people and help them live with this disease until it can be stopped....

It's time to talk about lung cancer, share lung cancer stories and spread HOPE, so that others can survive.

I write about lung cancer, advocacy, life, end of life, health issues and philanthropy.

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://www.lungevity.org/support-survivorship/asking-right-questions

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

In the business world, when a partnership ends there's a lot of fan fare.  Someone closes their doors for good, one company gets bought by another, or people go their separate ways.  There are usually contracts and letters of dissolution or maybe a partnership was only for an agreed upon project or length of time.

Today my partnership ended with EmpowHER Blogger Network.  THEY came to me late in 2010 to ask me to blog for them.  At that time I let them know that I was writing for LUNGevity and my active site "An Advocates Perspective" and they were ok with that.  In fact, they encouraged me to content share and post about what we were doing at LUNGevity and what was happening in the lung cancer world.  They wanted me to blog about current lung cancer topics or trending issues, and I did.  Each and every time I referred back to LUNGevity.

I'll admit I haven't blogged since the summer for their site.  My career has me travelling very often and the fall is incredibly crazy for lung cancer organizations- most of our events and many regional HOPE Summits were happening from May until November.

Today I decided to ante up and upload 3 new blogs to the EmpowHER site.  Afterwards I posted them to all my social media platforms and asked our supporters to share.  Less than an hour later my 3 latest blogs were deleted.  Here is what they said

You can go here http://www.empowher.com/users/iamkatiebrown and see my previous blogs and how ALL of them since 2011 refer to LUNGevity.  


I take it this partnership has abruptly ended.  Wow.  
Bloggers beware.

Thanksgiving is my favorite holiday.  There are no expectations of gift giving or receiving.  It’s simply a time to reflect and give thanks for the blessings that each of us have. It’s a true holiday of the heart.


I’m thankful for my family, our friends and the life we share.  I’m thankful for the silly little dog laying near me while I type this and that we get to gather for a feast on Thanksgiving Day. 

The holiday season can also be a time of grief for some people.  I notice the loss of my loved ones more deeply during holidays and special dates. There’s a bittersweet sense of what was and what never can be again.  The two people I miss the most are my mom and dad.

My mom was my best friend and supported me in my advocacy efforts and mission to support people impacted by lung cancer.  My dad was my biggest fan and losing him to lung cancer 12 years ago was devastating to our family.  Those losses changed the course of my life and career.

What we all can be thankful for is that for someone diagnosed with lung cancer today, there is much hope.  There are more treatment options than ever before.  The pace of the research is accelerating and yielding promise.  Clinical trials, targeted therapies and immunotherapies are extending lives.  Our work at LUNGevity is creating a world with more survivors, more information, education, resources, and support for those impacted by this disease. 

As another holiday passes without those loved ones around my table, I can be thankful that I could turn my losses into something positive and continue to honor their lives daily.

I keep those of you close in my heart who are experiencing grief, pain or sickness this holiday season.

I’ve started new traditions with my little family and my large extended LUNGevity family of survivors, caregivers and supporters inspire me every day.

Please know that we are here to help support and inspire you too.

I’m wishing you and yours a blessed Thanksgiving.  Best hopes and wellness for the New Year.

Being a young adult without parents is hard, but it isn’t rare, and unfortunately losing a parent to lung cancer isn’t uncommon. Statistic s shows that one in two men and one in three women will have cancer in their lifetimes, and one in 14 of us will be diagnosed with lung cancer. That’s just unacceptable to me and it’s time for our nation to care.

I was daddy’s little girl. I wasn’t done with him. I needed his advice and guidance and presence in my life. I feel robbed and I miss him every day.

When he was first diagnosed with lung cancer, I had hope.

Before I learned about the disease I had hoped that it was caught early and that there would be successful treatment options. I had hoped this was something our family would survive. I had hoped he would live to be a gray-haired grandfather and enjoy retirement. He didn’t make it. He died a year before his 65th birthday.

In the eight years since he’s been gone there have been no improvements in his type of lung cancer and very limited progress made in other types of lung cancer. Although lung cancer is the deadliest cancer killer, there is still no early detection test for the disease and very little funding compared to other cancers. The 5 year survival rate is less than 15%.

When I think about my dad, I wonder what we would be doing, what he would think of my kids, his grandchildren; the grandson who would now be taller than he was. A granddaughter he didn’t know about, who was born four months after his death, and is now 7 years old! I wonder how different our lives would be had lung cancer not entered it. I wonder what it would have been like if he had a fighting chance against lung cancer?

Although my hope waned during my dad’s lung cancer journey, I never lost it, even after I lost my dad. Hope lingered and grew little by little with each survivor I encountered. With each connection I made to another patient and another caregiver, some hope would grow.

Eventually targeted therapies and drugs like Iressa and Tarceva came onto the pipeline- and someone with a specific type of lung cancer who would have been in the 85% statistic would now not only LIVE with lung cancer, but achieve full remission! That fuelled my hope!

I’ve been a lung cancer patient advocate for 8 years now and we still have a long way to go in terms of funding, treatments and compassion for those diagnosed with this disease. There is still no early detection test; it’s still the #1 cancer killer and claims about 435 lives every single day.

But as another holiday passes without my father, I actually have more hope than ever this year because of LUNGevity. www.lungevity.org

LUNGevity is the leading private funder for lung cancer research and has propelled support and advocacy for patients and their families to a whole new level.

They have the largest lung cancer support network and grassroots network and a lung cancer summit specifically to honor lung cancer survivors.

LUNGevity is creating HOPE.

It is my hope that one day no one loses a parent prematurely to a disease as devastating as lung cancer.

It is my hope that people diagnosed with lung cancer will have a fighting chance.

I will be spending this holiday thinking about my dad and about how much I miss him in our lives. I’ll be reflecting on how his lung cancer journey sparked compassion and a life’s mission within me and how his life and death have inspired so many others.

Thank you for everything,  dad.
I miss you like crazy!  I still have HOPE!

Throughout my 12 year career as a lung cancer patient advocate, I’ve had many people ask me questions about advocacy, how to get started and how they can make a difference in the fight against lung cancer with LUNGevity Foundation.

I’ve consolidated those questions into 5 key points so that others who may be interested in taking that next step will have some idea of what to expect.

1. Why Advocate?

Do you know what an advocate is? Chances are you’ve been an advocate in some form the moment you or your loved one was diagnosed with lung cancer. But here’s the definition of an advocate; (n) a supporter or defender (v) to champion a cause and to stand up for what you believe in.

A lung cancer advocate will support themselves or their loved one thru the cancer journey, advocate for treatment options and medical care, educate the public about the disease, its stigma and lack of funding for research and can work towards changing the landscape of their local communities.

Some people think you need to storm the hill and change policy or have a million dollar campaign to be considered an advocate, but that is simply not the case. You can be an advocate just by using your voice, speaking up during those
times when other’s cannot, writing a letter to the editor, posting your thoughts in a blog or tweeting a 140 character message.

2. Learn About Lung Cancer.

Before you can effectively communicate anything, you’ve got to know the facts.
Who can get lung cancer? (Anyone can get lung cancer regardless of age, gender and smoking history)
What is the 5 yr survival rate? (16%)
How does it rank in terms of federal research funding? (Less than 5% of the NCI
budget goes towards lung cancer research)

3. Learn About LUNGevity.

You need to know what LUNGevity does, what programs and services we provide, how to access them and what our research contribution is. Our website www.LUNGevity.org is a great place to learn about all of those things. In short summary we are the largest private funder of lung cancer research, offer the largest online support network with resources, education and access to experts,and we have the largest grassroots advocacy network.

4. Learn About the Ways You Can Help.

The advocate needs to decide what they are championing for. Is it better medical treatment for themselves or their loved one, seeking emotional support or education for patients and family, changing the stigma, championing for survivors, creating ways to raise awareness about the disease, creating ways to initiate changes in your local community or on a national level?
Decide what it is you want to do- then do it!

Some advocates distribute brochures to hospitals and support groups. Some advocates write articles, blogs or communicate with the media to spotlight lung cancer stories. Some advocates support others, act as a support mentor, provide information, be at rallies and health fairs, and work to change legislation. Other advocates like to host community events, fundraising events and raise awareness though social media campaigns.

There are various ways in which you can be an advocate. You don’t have to have previous experience; you just need to
have the passion and the dedication.

At LUNGevity we can help you, by providing ways in which you can make a difference, giving you ideas and access to information, webinars, training tools and notice of advocacy opportunities that become available. We can also help by referring you to resources and other organizations that can help you accomplish your advocacy goal outside of our mission.

5. Start NOW.

You are an advocate the minute you decide to support, defend or champion for yourself, your loved one, and/or lung
cancer. People with no experience, aside from their personal experiences with lung cancer, CAN make a difference immediately in their own lives and in the lives of others.
Start now.
Don’t wait.
Those affected by lung cancer need you to advocate for them, and those that are no longer with us need you to be their voices.

If you are interested in learning more about advocacy thru LUNGevity’s LinkUP advocacy initiative, visit our website at
www.LUNGevity.org