Facing the Fear of Recurrence

When I was diagnosed with breast cancer in 1986, no one talked about fear of recurrence and how devastating it can be in our lives.

I didn’t really even understand that my cancer could come back in another organ until well into chemotherapy. Despite what many people think, breasts are not a vital organ and their loss, while devastating, is not going to kill you. Not so if the cancer moves from the breast to the liver, lungs, brain or bones, the most common sites for breast cancer recurrence.

I thought that if I lived through chemotherapy, cancer would be behind me; I would never have to deal with it again. I could continue raising my amazing daughter and stepchildren and get on with my life as a college professor, writer and speaker.

It wasn’t until a phone call in in February 1987 that I truly understood that cancer could be diagnosed when it was already in a vital organ or that it could come back in a vital organ.

Like many women diagnosed at the time, I was doing the “nothing keeps a good woman down” routine. You know the type.

“Sure,” she says, “I can still host Thanksgiving for 30. I’ll just vomit between courses.”

I still had one chemo to go and was trying to coordinate a huge fundraising event at my church.

I called the woman who led the girl scout group that met at the church about coordinating space to be sure we could accommodate their needs.

She said she needed to check her calendar, and we would need to talk again. She yawned and apologized by saying she was in chemotherapy.

“I am too,” I told her.

After a moment of stunned silence, we compared notes. How many chemo appointments did she have left, and how she was doing, etc? Then I asked her how she had found her cancer. She said that on New Year’s Eve she sneezed, and the pain in her back was so bad she couldn’t stand up.

“Your back?” I asked.

She said that her cancer was already metastatic to her spine when they found it, meaning it had already moved to another organ from the breast.

Back then it also meant she did not have long to live because there were none of the current drugs that have given women with recurrence 6, 8 even 10 years with good quality of life.

She said the doctor told her that when she sneezed she probably cracked one of the vertebrae where the cancer had settled.

She also knew she was dying; I could hear it in her voice.

Our daughters were the same age.

I don’t remember the rest of the conversation, but I do know that by the next morning my back was in spasms. I was in real pain.

OK. I am not an idiot. Intellectually, I knew that this had to do with my conversation, but intellect had nothing to do with it. I was in real pain.

By day two I could barely move. I called my oncology nurse, Becky and told her my back was really hurting me (leaving out, of course, the conversation), and that I needed a bone scan.

She ordered it, and when I went to learn the results, I was sure it was to confirm I was dying. Instead she told me I was fine, and why, she asked, did I need the scan again.

The pain ended at that moment. No one can convince me that this wasn’t a case of mind over body. It also took me weeks to understand what had happened. FEAR.

This was my first, but far from my last, panic attack. As I continued to have them, I learned that there were certain things that set them off. Today those are spoken of as triggers.

And now that the survivors have prompted research around fear of recurrence, it is known that we all have triggers that set off the fear. These can be dates, an unusual ache or pain, the diagnosis of a celebrity, a certain anniversary such as Christmas or a birthday—and all of a sudden the cancer is back. We begin what they ca in the psycooncology field as ruminating. This is like a record (for those of you who remember them) getting stuck on one track and repeating over and over.

Breaking the cycle takes something strong to move the attention away.

So fear of recurrence has two parts, the trigger and the reaction, and dealing with it means recognizing the triggers and then finding a way to stop them. If the panic starts it is then a matter of finding a way to stop it before you are debilitated.

I had one gentleman tell me that he had his first panic attack watching a television show hosted by one of the strong outdoorsman types. The host was a former Marine and looked invincible, the man told me. Then one week when he tuned in, he learned the host, his ideal of the “man,” had died of prostate cancer.

“I had been diagnosed two years before,” he told me. “And I never thought it could kill me until that moment. I couldn’t sleep that night and then spent hours researching him.”

Time took care of that issue he said, but he finds that now he is much more aware of his potential mortality.

If you have a trigger that is date driven recognize you need to reassure yourself when approaching the date. For me that means going in to see my doctor, having bloodwork and knowing all is well.

Christmas was a trigger for me. I love the holidays and saw the future as many holidays. I always planned a blood work for early December to get through Christmas fear free. Until I figured this out, I was often depressed at Christmas as I worried that it would be the last with my child. I also became what I call a crazy Christmas mother, who overbought gifts that were very age inappropriate. For example, the complete works of Shakespeare for a 3-year-old, is a little over the top.

Once you have cancer, you can no longer have the usual aches and pains of aging. It’s all about cancer.

If you just decide to power through your panic attacks, remember that it takes significant energy to keep the fear in the recesses of your mind.

My friend Leann hated to go to sleep because she knew she would have “the dream”: the figure all in black on the black horse that was chasing her across a meadow as she tried to make it to the woods in the distance.

She never made it fast enough, and, as he overtook her, she would wake in fear.

I asked her if she had ever turned to face him. She said no.

Then she did. She called to tell me that when she finally stopped running and turned to face him, he went away and never came back.

The most powerful tool against fear of recurrence is to face it and talk about it and to take its power away.

Do stress reduction recommended by researcher Barbara Anderson, PhD.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661422/

Acknowledge your fear. Find a support group where you can talk about it with those who understand.

We have worn out friends and family and the most meaningless words we hear are, “It will be fine. You are going to be all right.” And my favorite, “Don’t worry.”

To begin the process of facing the fear ask yourself what you are afraid of. Most people are not afraid of dying, they are afraid of pain or imposing on family or leaving a child or leaving before their life’s work is done.

Identify what you are afraid of and begin to deal with it.

I was terrified of leaving my daughter who was only a year old when I was diagnosed. I had waited until I was 36 to have her and she was the light of my life.

After finally seeing that it was getting to raise her that I was most afraid of, I decided that I would put friends in charge of her upbringing should I die. She had a good, involved dad but she needed women in her life.

So, I identified the women who I knew I could ask these sacred questions and not be told that I was being silly, everything was fine. Sueann, a Methodist minister, I asked to care for Kirtley’s spiritual needs; Terry, a Montessori teacher, I asked to be sure Kirtley was happy and in the right school.

My oldest friend Diana was Kirtley’s godmother, and her I asked to teach Kirtley how to cook and knit and encourage her creativity. And finally Diane, who had two girls of her own, I asked to be her stylist. She was always sure her girls had the latest fashion and I wanted that for Kirtley. I wanted her to fit in.

When I finished, I felt like a huge weight had been lifted off my shoulders and, amazingly enough, I was ready to die.

Well I didn’t die, and Kirtley is now almost 30. We are best friends, and I know she is glad I stayed around.

And the fear, it finally left for good at about 10 years post-treatment. Time does heal most wounds.