A recent diagnosis of a malignant tumor sent me on a lengthy journey that I had no desire to be on. It came out of the blue when I was involved, as all of us are, in much more important things in my life. Many people, including Oliver Sacks, Robin Roberts (Everybody’s Got Something), Paul Kalanithi (When Breath Becomes Air) and Randy Pausch (The Last Lecture) have written about their experiences in dealing with a cancer diagnosis. I decided to share the lessons I learned with the hope that it may help others feel a sense of connection as they chart their own passages through our complicated and at times, tortuous, medical system. Hopefully this advice will be helpful. Here’s what I’d like to share:
Having friends and family to help you through this is invaluable. I already knew the incomparable value of a group of close friends and family members as a support circle, but the diagnosis brought the idea home in a big way. I’m so grateful to have their support. Having said that, you must learn to ignore negative feelings towards those who don’t apparently step up to the plate in your time of need. It’s not that they don’t care about you, but they may be worried about upsetting you by not saying the right thing when talking with you. For those of you who worry not knowing what to say when a loved one is diagnosed with cancer, all you need say is that you’re sorry to hear the news and ask if you can be of any help. Give a hug, help wipe a tear, bring over a cooked meal, or just be there to listen. And if you offer to help, please follow through on your offer. Be sensitive to the fact that some people may want to be treated exactly the same as they were before the diagnosis. This doesn’t mean they’re in denial; it’s just their preference as to how they’re going to cope with the situation. Do your best to honor their wishes.
Get a second opinion. This should be done for several reasons. It won’t happen often, but a small subset of people who are told they have cancer actually don’t. Doctors are human, and they make mistakes. That’s actually not the primary reason to get a second opinion. Picking the right treatment is not always a straightforward process, and different doctors will have different opinions on which treatment is best. Prostate cancer is a good example. Some (especially surgeons) will push for immediate biopsies and then prostate removal surgery; others will take a watch-and-wait approach, as these are often very slow-growing tumors. Beyond that, you have to decide just what you are willing to put up with. Will you relocate to a distant city to participate in a clinical trial? Are the potential side effects something you are willing to endure? Your doctor will throw lots of numbers at you: the percentage of patients who survive five years, or who are left incontinent after surgery. These are important to consider. But at the end of the day, know this: your cancer is unique, and there is simply no way to tell what will happen. Certainty is a word that simply doesn’t apply to most things in life, cancer included. This actually provides a strong basis for hoping for a good outcome and accentuating the positive things in your life.
You need to be on the same wavelength as your doctor. This is another reason for seeing several doctors. Your treatment is all about communication and trust. If you’re not connecting through both of these channels, give serious consideration to changing doctors. At the end of the day, it’s unlikely that you are going to know as much as your doctor about what might be the best treatment for you. That isn’t to say that you shouldn’t ask loads of questions or to push back when you feel your either not getting a straight answer or not understanding all of the implications associated with the issue. Your treatment plan should be a partnership, and you should be included in any and all discussions. These include those where you might decide to forego treatment when you feel it is interfering with your quality of life.
Electronic health records are NOT the way you want to receive the results of scans or biopsies. Few things are more frightening than getting an email alert telling you that the results of your scan/biopsy have now been posted to your electronic health record. Access to that document is but a mouse-click away, but think twice before you hit the view button. In theory, no upsetting information is supposed to be shared that way, but even reading through a relatively benign report without having a doctor to “translate” it for you can be emotionally difficult. Lengthy waits for appointments contribute greatly to a patient’s anxiety level as do delays in getting biopsy results. I had a biopsy at mid-day on a Wednesday, and I was told that I would get the results by Friday. But when I received no call, I contacted the doctor’s office to find out what was going on. I learned that I would now need to wait until Monday to get the results. The doctor inferred that the delay likely meant I had one of two types of cancer, but on Monday I learned I had the second type.
Bad news delivered badly is an awful combination. It takes a special skill to convey bad news in the best way possible, but virtually no effort is required to do this poorly. Unfortunately, many doctors lack the training or empathy to do it the right way. Read the stories in this New York Times article to see just how bad this experience can be, especially the readers comments at the end. Hopefully your experience will be better than theirs. The mental toll on a person receiving a cancer diagnosis can be as traumatic, if not more so, than the physical treatments that one endures.
Know that everyone responds to a cancer diagnosis differently. There is no right or wrong way to react to the diagnosis. You may feel pressured to be a cancer hero, one of those folks who transforms themselves into an iron man competitor and lives on kale and protein shakes. Don’t feel the least bit guilty if this is not the path you take. I didn’t take the news well. Some (well-meaning but misinformed) folks may even ask you what the “gift” was that cancer gave you. This undoubtedly occurs in some cases, but many folks are simply doing all they can to endure their treatments. I haven’t done an extensive survey, but I can assure you that many cancer patients feel that this “gift” was one they wish was not left on their doorstep. They have no eye-opening insights to share with you. Don’t ask to hear these; they will volunteer them if they have something they want to share.
Focus on the positive. Admittedly, this is something I struggle with. When I got my cancer diagnosis, I realized I was the same age as my mother when she was diagnosed with cancer. In her case, she was dead and buried less than 90 days later. This thought weighed heavily on my mind as I was awaiting the results of my biopsy and scans. One of the better books that was recommended to me at the time was Man’s Search for Meaning, by concentration camp survivor Viktor E. Frankl. His take-home message is that while we are often powerless to change the circumstances of our lives, how we react to these situations is always within our control.
Look for ways to turn a lemon into lemonade if you can. Do this by seeking out any positives that you can find, even if you need to look mighty hard. In my case, it was weight loss—I lost 17 pounds before my cancer surgery while worrying, plus another 13 pounds afterwards as I was healing. I decided I needed to re-establish control over my body (I’m not ceding this to the tumor), so I lost another 18 pounds after that to prove to myself that I was still in charge. I was also reminded that there is great joy to be derived from the simple things, like being able to eat solid food again. As with many things in life, it’s the little things that matter.
Embrace the empathy. Even though I had a good outcome (at least so far), I feel tremendous empathy for those that did not have such positive results. Looking up cancer survival stats can be disheartening. It may be difficult to actually come up with the relevant numbers for patients who have been in exactly the same boat (staging, molecular markers) that you find yourself in. Published outcomes could be significantly better than yours or significantly worse. Consider yourself fortunate at any hints that you are not in the worst possible group.
Having good health insurance was a godsend. How the poor, the uninsured or the underinsured cope financially with a cancer diagnosis is truly a frightening thought. Medical bills are the leading cause of bankruptcy in the United States, and cancer patients will rack up some substantial bills. If you want to read about just how badly disadvantaged the poor are when it comes to receiving healthcare, check out How We Do Harm: A Doctor Breaks Rank About Being Sick in America by Otis Webb Brawley (he is Executive Vice President of the American Cancer Society) and Paul Goldberg. If the Republicans succeed in repealing the Affordable Care Act without having a serious and viable replacement, then people will certainly die. This is why we all need to speak up and have our voices heard!
Customer service matters in cancer treatments as it does in everything else (and maybe more so). The poor customer service that we experience across a variety of settings in our lives frustrates many of us. When you’re sick with cancer, having to deal with these issues in a medical setting is unbelievably upsetting. I’ll share just one example. There was an elderly couple sitting patiently in that same waiting room with me when I went for my initial appointment with a cancer surgeon. It was clear that they did not speak English, and they were waiting for an interpreter to meet with them and their doctor. They had clearly been waiting for quite some time, and I heard the frustration in her voice as the receptionist made call after call trying to find out what had happened to the interpreter and when that person might show up. Ninety minutes later, when I left my appointment, the couple was still sitting quietly and waiting.
Share your story. By sharing my story, I heard back from friends and acquaintances with many similar tales. It reinforced our connections, even if we’re all members of a club that none of us wish to belong to. I came to realize I already knew a lot of cancer survivors. Michael, Mary Anne, Larry, Don, Hal, Tom, Jim, Linda, Brent, Brian, Steve, Lee and others were still going strong after being diagnosed with a variety of tumors, including Hodgkin lymphoma, breast cancer, Ewing’s sarcoma, multiple myeloma, larynx cancer, bladder tumors, melanoma, tongue cancer, B-cell lymphoma and prostate cancer. I saw how these survivors focused on getting on with their lives as best they can, even with cancer’s shadow hovering over them. Knowing that all of these folks had survived their diagnoses gave me great hope that my treatment would also be successful. I thank each an every one of them for taking the time to share their narratives with me. I’d also like to thank my doctors, the nurses, and all of the other people who treated me with kindness and compassion at a time when I really needed it.
Taking stock in life's lessons,