“Cancer is not a straight line. It’s up and down.”

—Elizabeth Edwards

When an initial treatment proves insufficient

Cancer treatments fail. It’s that simple. Though patients enter treatment with great hope, that hope may be dashed when either further evidence of disease or proof of recurrence is discovered. Sometimes the failure is apparent immediately, as was the case with my wife, Lori’s, lumpectomy. Other times the disease reappears months, years, even decades later. Evaluation of the effectiveness of your cancer treatment depends upon the modality used.

 Hitting the reset button

If your initial treatment failed to cure your cancer, than you have reached another critical signpost along your journey: The need to modify your treatment plan to include new modalities of care. It’s a bit like hitting the reset button and starting the game over. This can be a particularly difficult time for many patients because the preferred treatment option has proven unsuccessful, often triggering new waves of anxiety and doubt.

 The “middle stage” of cancer

Many patients enter a midpoint in their journey with cancer. It is what author and ovarian cancer survivor Susan Gubar defines as the “middle stage.” Writing in a June 5, 2014 article in the New York Times, Gubar stated:

“For some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it—unless you are first hit by the proverbial bus—but not now, not necessarily soon.”

The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.

Still, quite a few patients with some types of leukemia or lymphoma, prostate or ovarian cancer live for years. While in the 1970s, 10 percent of women with metastatic breast cancer survived five or more years, today up to 40 percent do. Chronic disease may lack the drama of diagnosis and early treatment; even friends can get bored by mounting details. Its evolution does not conform to the feel-good stories of recovery that most of us want to read. But neither does it adhere to the frightfully degenerative plot of quickly advancing tumors.[ii]

 Allowing for disappointment while not relinquishing hope

When you hit these milestones, it is time to be kind to yourself: a time to express your disappointment without relinquishing your hope. You will be traversing a new path on your journey, but first, you must understand how the additional knowledge acquired to date about your condition impacts your staging, prognosis, and recommended treatment options. Your physician should provide this information, as well as recommended modifications to the treatment plan.

Now’s the time to take out your compass and reassess the direction you are headed. It is essential that you go through an appropriate level of due diligence with your doctor regarding the next phase(s) of treatment. Just as you inquired about efficacy, side effects, treatment duration, and other factors prior to your first course of treatment, you need to repeat the process again now. Three very important questions to consider are:

1. what are the goals of this treatment;
2. what is the likelihood it will be successful; and
3. what short-term and long-term effects may the treatment have on my quality of life? Only once you’ve completed this process can you truly provide your physician with informed consent to proceed.

 Due diligence déjà vu

Just as you asked many questions about your initial treatment, so, too, must you feel fully informed about the next steps in your journey. In addition to understanding the fundamental nature of the recommended treatment, you may also wish to ask your physicians the following questions:

• Why might this treatment be effective when others have failed?
• Are there other options for treatment that we should discuss?
• What are the side effects or after-effects of treatment that I may experience?
• Who will perform this treatment, and what are his or her qualifications for doing so?
• Will my insurance cover the cost of this treatment?
• Where I can learn more about this treatment before agreeing to it?

It may be helpful to then take a few days, do your own research, talk with your caregiver, and then come to the most informed decision possible. Regardless of the outcome, you will feel as though you entered this phase of treatment with a solid understanding of its probable outcome, side effects, and costs.

 The End of Active Treatment for Lori

Lori endured a second major surgery—bilateral mastectomies. The difficulty of the recovery was far more than Lori or I anticipated.

(IN LORI’S WORDS) Once I had a chance to digest the news about my initial pathology, I knew I needed more surgery—a mastectomy. I also knew that my type of cancer was also more likely to be present in the opposite breast and to evade early detection by imaging. So, I opted for bilateral mastectomies. It would take coordination between my breast surgeon and my reconstructive surgeon, which even under the most optimal circumstances can take several weeks. I decided to allow myself my hour of sadness, but then take that energy, become my own advocate, and push hard to get things done as soon as possible.

While waiting for my second surgery, I knew I needed to take care of my spiritual, psychological, and physical needs. I packed much of our house to get ready to move, took time to exercise, read my Bible, talk to friends. Mother’s Day was during that time, and all I wanted was to see my sons, so my husband arranged for them to fly home from California and Wisconsin for the weekend. We talked, went to church, and even took in a baseball game. My surgery was scheduled for early the next week.

The day of surgery was also the day before our scheduled move. My sister Janet, a nurse at Duke University Medical Center, came the night of surgery to help with my care and allow John to be with the movers the next day. She stayed with me those first few days when I felt so physically helpless. She brought me “home” to our new house (and new beginning for me) where we were greeted by a chaotic setting of John supervising the movers. Her calming presence, encouragement, and hands-on care were invaluable. I will always be grateful she was there by my side. My brother Chris and his wife Gail took the second watch and stayed for several days, helping me as I struggled to gain strength, as well as helping John unpack our new house. They all dropped their jobs, families, and plans to come and help. Having my strong support system was a tremendous blessing, and I strongly believe it was a key to my recovery.

The final pathology report came out. I held my breath, said a prayer for strength, and waited on the other end of the phone while Dr. V. read me her findings. There had proved to be many spots of cancer creeping through my breast—that was the scary news. But this time there was excellent clearance around the tumor—the margins were negative! A genetic test done to predict my recurrence was also low—so I was not going to need chemotherapy. My risk could be reduced by taking a pill each day to block estrogen.

I knew I had found a silver lining—and a new beginning. Three weeks later I was back at work, now armed with a personal story to complement those of my patients. We would help one another on this journey.

[i] Elizabeth Edwards, BrainyQuote, http://www.brainyquote.com/quotes/authors/e/elizabeth_edwards.html

[ii] Gubar, “Living with Cancer.”