When Dann Wonser was 49 years old – in 2006 – he had an X-ray to determine if he had broken ribs. That’s how he found out he had stage 4 lung cancer. Biomarker testing showed the EGFR and T790M mutations. During the past 18 years, Dann has had:
- An upper left lobectomy
- Chemo three separate times
- Radiation three separate times (hips once, spine twice)
- Three targeted therapies
- One angiogenesis inhibitor
- Three clinical trials
Dann credits his wife, Genevieve, and the support of his family and friends with keeping him steady during his treatment – and “beyond that, looking for the realistic positives in any situation, and having realistic expectations,” he said. “No treatment will last forever. So far, there have always been more options, whether clinical trials or standard treatments. I just need to stay healthy enough to get to the next treatment if this one stops working.”
“When I’m going through a hard time, even a simple one-line email or text can provide a big lift. One friend makes me soup or bread, even when I’m doing well and don’t have any special needs. Another friend sent me daily text messages of support for over a year, and then sent cards to me every couple of weeks for about that long, again not always when I was in great need. Just knowing that people are there for me and that they care makes all of the difficult times much easier to cope with.”
Dann’s history with lung cancer has given him valuable insight, and his blog (DannWonser.com) is an avenue for sharing his experiences and advice for others on this journey. He also has written a book, Second Wind: Thriving With Cancer.
Here’s what he would tell those who are newly diagnosed:
Have hope. Cancer treatment is exploding right now. It’s just incredible how fast things are changing – for the better.
Finding out is the hardest part. The first days, weeks, or even months are overwhelming for everyone. You will get past this – we all do. Just remember that what you are going through right now is harder than everything else you will go through. Everything else combined. The reason? You don’t have any tools to deal with it yet. That will change.
Let people in. My life is much richer and more full of love now than it ever was. That only came from sharing my trials and vulnerabilities. I have no doubt that I am alive today because of the love of, and for, family and friends. Rarely people vanished because they couldn’t cope with my cancer, and I can understand this. Much more often, people surprised me with their outpouring of caring and love. Take the risk. Still, it’s easier if you…
Plan how you are going to share your diagnosis with others. I found that by emailing people I cared about before talking with them about it, it saved me from endlessly re-living those first moments after being diagnosed, after the cancer had grown, or spread, or didn’t shrink when I had high hopes. This gave friends and family time to compose themselves before they talked with me, and because of that, the conversations went much better. This way I could also set the tone that I hoped that they would reflect back to me. It works.
Throw the statistics out the window. If you’ve been diagnosed for longer than 12 hours, you have probably already done an internet search and tried to calculate your survival odds and/or your new life expectancy. Finding statistics that match your specific situation is nearly impossible. For example, the average age of diagnosis for lung cancer is 71. I was 49. Do you think treatment outcomes will be the same? General health, the genetic profile of your cancer, environmental factors, location/size/number of tumors etc. – there are too many variables to make the stats make any sense for an individual. Beyond that, your attitude and actions make a difference.
More importantly, whatever statistics you find are probably hopelessly out of date. New treatments are coming online too fast for the statistics to keep up.
A diagnosis is not a prognosis. I attended a conference last year with 150 lung cancer survivors. Most of us attending have, or had, Stage IV lung cancer, and a dozen have been alive for at least five years. If that’s not enough, I am your living example. I was first diagnosed in 2006. One woman I know has had five different cancers, and is still alive 25 years later. The same diagnosis yields different results for different people.
Do your homework. Your survival chances are directly related to the quality of the treatment providers you work with. Is your oncologist a specialist in your specific type of cancer? As a general rule, the more people that your doctor and your treatment center have treated that have the same type of cancer as yours, the higher their success rate. Experience makes a difference. Who are the recognized experts in your type of cancer that are within a radius that you are willing to travel?
Get molecular testing. The most promising breakthroughs in cancer treatment are at the molecular level. This includes both targeted genetic treatments and immunotherapy. If your oncologist doesn’t think you need it, consider the possibility that your oncologist is out of step with the latest research. You may want a second opinion.
Re-think clinical trials. “Clinical trials” used to be considered the last gasp desperation approach to treatment. The reality is that, for lung cancer and many other types of cancer, this is where you will find the most promising, cutting-edge medicine, with the best results, and with the least side effects.
Exercise, sleep, and diet all make a difference. They impact your mood and your ability to cope. More importantly, you will recover from medication, radiation, and surgery better and faster if you are in the best shape you can be. Take care of yourself. Exercise, sleep, and diet. In that order. One man’s opinion.
Attitude matters. Treasure the moment. Live in gratitude for what you have right now. Choose hope. These things not only improve your quality of life, they also improve your chances of living a longer life.
Love yourself. Treat yourself like you matter. Because you do. This may be your last chance to act like it.
Choose your own path. I’ve laid out the way I see it. You may see it differently. Find your own vision of the future, and own it.