Consider This

Be Proactive Before you Need to or are Forced to Make Critical Decisions

Once you've received your initial Treatment, Surgery or are in the "Watch and Wait" status you have some homework to do. You and your Cancer Team will become sleuths in investigating and pursuing what is the most effective treatment approach for your specific cancer.  Every step takes time and a number of hurdles need to be overcome as you progress. 

I learned the hard way thinking that I could wait until or if my cancer came back. Because I delayed, I was not able to identify my cancer mutation until after going through several treatment cycles including some very toxic and difficult combination chemotherapy regimens.  After I  had my ROS1 mutation identified, I was placed on an oral targeted therapy. The quality of my life vastly improved as my cancer was more effectively treated and the side effects of treatment were significantly reduced.

​My personal philosophy is, the more you know about your specific disease, the better informed your decisions, now and in the future.

Ask for Support, You Can't Do it All Yourself

Take A Friend to your Doctor Appointments

SO many contributor patients stressed the following: ​Ask someone to attend all of your appointments with you, especially early on and have them either take notes or record your discussions. You will not remember what your doctor said. 

Before your appointment, write down your questions as they arise, it will help you remember and stay focused on what you want to learn about your condition and disease. Use the example questions listed in the various “Ask Your Doctor” sections to help formulate what you want to ask.

Medical Insurance

You have some homework to do as going through the disease analysis and treatment definition  will take time and you may have to wrangle with your insurance and medical “systems.” You'll learn what is covered and which medical institutions are "In" or "Outside" of your Network. For example, ask how  “Second Opinions” outside of your network are covered 

MediCare

Find out if you might qualify for Medicare, (based upon disease and its extent) and start the qualifying process. It takes approximately 18 months as a general rule and you may have to step through COBRA etc for medical coverage during your waiting period. We found Medicare to be a very good health care offering as it is flexible as to who you can see, self refer and where you can receive treatment even if it's outside a healthcare provider system such as Kaiser or Sutter.

Time is critical, even early on in your diagnosis, as you'll want to be prepared in case you have to make treatment decisions quickly. Being an informed consumer and an advocate for yourself is critical as you want to be prepared BEFORE a decision needs to be made.

New Treatment Options for your Cancer

Cancer research is a dynamic environment as there are new advances all of the time. What wasn't available a year ago may now be an option for you. Be open to participating in Clinical trials (ie Phase II and III) as you may have access to the more  promising treatment options, and possibly with less side effects than the currently approved regimens. 

Make sure the trials are held through a reputable medical system and the amount of patients being enrolled is fairly robust. Discuss with your Oncologist as they are most likely aware of what might be promising options at this stage in your treatment. Second opinions are also very helpful at this decision stage in treatment.

Rely on Others to Help You Through this Research Process

Ask a reliable friend or family member to help do the research, phone calls, sending / requesting information, follow up, setting up second opinion consults, do the legwork for you as you can easily become overwhelmed. This is a very emotional time, cut yourself some slack. 

Consider that your spouse or loved one may be having a difficult time as well so a third party may give you both a bit of a break from such activities. Someone can help you work through these steps, take actions and continue making progress while you focus on caring for your health.

Consider Contacting a Lung Cancer Advocacy Organization

We  recommend lung cancer patients seek out lung cancer advocacy organizations which could  help guide them through this tumultuous process. See a few suggested organizations on the Resources page.