Talking to your doctor

After diagnosis I can remember having so many questions I didn’t even know where to begin. Everything was overwhelming and I felt lost. I had no idea where to start and there was little to help me understand my diagnosis. I was advised to not look online for information, but if I did, look to reliable scientific sites. Even then, I had so much I didn’t understand. I learned quickly that asking questions and understanding what was going on in my body was helpful in coping with my diagnosis. If I didn’t ask, I wouldn’t get any answers or information beyond what I was told. So I began requesting my results and highlighting anything I didn’t understand. I would then bring that to the attention to my doctor or nurse and ask them to explain it to me. Often it would be jargon or a question in relation to what came next, or something related to treatment.

I can’t pinpoint the exact questions I had just after diagnosis because I had so many that I didn’t know what I didn’t know. I do wish there had been a resource or a list of questions for patients in my position, because I had questions about everything. During the first few months after diagnosis, I made a point of recording my appointments using a small voice recorder. This was handy as it allowed me to listen to my conversations again, or go back to something that had been discussed during the appointment that I may have missed. In the periods between appointments, I would make notes on questions or concerns I had. This often occurred after I received scan results. Usually results used medical terminology or ideas that I didn’t understand, so I would highlight the area of concern and use Post-its to remind me of the questions I had pertaining to that issue or term.

Many patients are hesitant to ask questions during appointments, perhaps it’s because they don’t know what to ask or are intimidated in asking. I would argue that both are hurdles that can be overcome. The only way we can ever really comprehend what we are going through, is by understanding. The first step in understanding is asking questions, and lots of them. What makes a good question, one might ask? To that I’d answer, anything that is important or has meaning to the person asking. The following is not a comprehensive list, but is a good start towards understanding your diagnosis and treatment.

Some examples to think about asking are:

• Was my cancer confirmed by tissue diagnosis (that is, from a tissue biopsy) or cytology diagnosis (that is, from fluid samples or samples obtained by brushing or washing)?
• What is the stage of my lung cancer? Where in my body is the cancer located?
• Do I need any more tests before making a treatment plan?
• What symptoms should I expect with this type of cancer? What can I do to manage them?
• What should I do if my symptoms get worse or if I develop new symptoms?
• Is this type of cancer hereditary? Is my family at risk?
• Has a sample of my tumour been sent for molecular testing? Am I a candidate for targeted therapy?
• What mutations were found in my biopsy sample? What are my treatment options?
• What is the goal of this treatment?
• What drugs will I receive and how do they work?
• Is there anything I should do to prepare for treatment?
• Is there anything I can do, such as changing my diet, exercising, or managing stress, to help cope during treatment?
• How long will this treatment last and how often will I receive it?
• What side effects might occur?
• What can I do to prevent or cope with side effects?
• Are any of the side effects permanent?
• Who can I contact if I develop any side effects?
• Are there drugs to help with side effects?
• Am I eligible to participate in any clinical trials?

Visits to the doctor don’t have to be stressful. They often are, but going in prepared can alleviate some of that stress. A few of the things I did to help me before an appointment was to prepare my list of questions and concerns, changes in medications, behaviours, or any symptoms I may have had; and finally bring my recorder or note pad in with me so that I could capture what was said in the appointment. If appointments are too overwhelming to go on your own, bringing a trusted friend or relative can be of great support. They can offer you morale, but on the more practical side, they can ask questions you may not have thought of, or take notes for you. Two heads are always better than one.

Anne Marie passed away in October 2021. Since her diagnosis in 2009, Anne Marie was a dedicated advocate for those living with lung cancer, and for young adults with cancer.

Many have found inspiration in Anne Marie’s story, and her input to the Younity patient support programme has undoubtedly impacted the lives of countless individuals living with lung cancer. We are extremely grateful to Anne Marie for her contributions to this programme and to the lung cancer community more widely.