Advocate for Yourself

When we are diagnosed with lung cancer, it is almost always a shock. Whether it is caught early or late (the usual case), it is like a fist in the stomach to us - and everyone who loves us. It is important to put on your boxing gloves as soon as you can possibly recover from the shock and start fighting for yourself.

This was made all the more important to me just the other day. I was approached by someone in an online community who wanted to know about the treatment I receive. I have been in a clinical trial for nivolumab or Opdivo, an immunotherapy, for over two years now. Word is getting out about immunotherapy and the hope it offers many of us with late stage lung cancer.

This woman was 61, the mother of a seven-year-old and a six-year-old German shepherd. She had Stage IV lung cancer. She was given one infusion of chemotherapy, which made her very, very sick. Her oncologist told her she was not a candidate for chemo so she needed to just go home, get her affairs in order, and prepare to die.

When I met her online, she had rehomed her dog and was taking her daughter to relatives to live during that week. She had completely followed her doctor's advice. She was simply preparing to die. It broke my heart. And, it made me angry.

Why would an oncologist give up so easily on a patient? And, more to the point, why would a patient give up that quickly?

So, how does a lung cancer survivor best advocate for themselves? Here are some ways that I have personally advocated for myself. Maybe some of them will help you, as well.

• Never take no, or inaction (a form of "no"), as the final answer. Keep fighting. Your life is most important to YOU! Don't give up. If one doctor tells you to give up, find another. Until you take your last breath, 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.

• You know your body best. If something doesn't seem right, make sure your doctor knows. And takes it seriously.

• My oncologist, somewhat jokingly, tells people that he works for me. But, in the end, that's the truth. He does. If, at any moment I decide he is not doing an adequate job for me, I can fire him. I have no contract with him. I do not have to continue trusting my life to him if he loses my faith. The same is true for you in your relationship with your doctor(s). If you do not trust them with your life, because they indeed hold your life in their hands, fire them. Find one 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, Free to Breathe,
  the National Institutes of Health (NIH), etc. Make sure that you can differentiate between someone's opinion and vetted study results. There are lots of people out there who espouse quick cancer cures, but I personally am going to trust my life to clinical trials and to doctors who have invested a great deal of time and money in learning how to treat my cancer. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor is right on top of what the latest treatments are.

• Join support communities (in-person or online or both). It means a lot to spend some time with others who "have been there, done that." Most of us realize that the general public simply does not understand what it is like to be diagnosed with cancer. I think being diagnosed with lung cancer, the most stigmatized of all cancers, makes the misunderstanding by others even greater.

• One organization I have associated with 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 some 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. I walked my two dogs every day during chemo. Sometimes, I could only manage a couple of blocks, but we got out and walked. 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.

• Start a binder or a file where you keep important test results and CD's of all of your scans. Make lists of questions you have for your doctor so you don't forget when you get into his or her office. It sometimes also helps to take along a friend of family member to doctor visits. Two sets of ears are nearly always better than just one, especially if you receive some shocking news during the appointment.

It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The stigma that associates 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 smoke or smoked, lung cancer is a formidable foe. And, no one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Don't be ashamed.

And remember, there is hope. Always, there is HOPE!!