Cancer treatment may seem to involve a mysterious, unfathomable foreign language, but there are ways to improve those lines of communication.
Kelly Irvin is a multi-published novelist and former newspaper reporter who worked in public relations for more than 20 years. She retired from her day job in 2016 after being diagnosed with primary lateral sclerosis, a degenerative motor neuron disease, and stage 4 ovarian cancer. She spends her days writing and loving her family.
In today’s fast-paced society, communication is the name of the game. When it comes to cancer treatment, it seems as if the playbook is written in Greek and the coach speaks in foreign acronyms through a mouthful of marbles. I have a degree in journalism, worked 10 years as a newspaper reporter, worked 20 years in public relations and I write novels now. Yet, communicating with my cancer health care team remains an ongoing challenge.
After recently joining a closed Facebook group for women with ovarian cancer, I realized communication is a challenge for many of us fighting the disease. This group is a wonderful place of no-judgement, open communication and support. I’m often surprised by some of the questions posed. I think “Holy moly why didn’t the doctor answer that question?” Then I realize that often patients don’t get a chance to ask the question or didn’t understand the answer, or didn’t think to ask it until it was too late (which is what happens to me frequently).
I’m blessed to have a doctor who starts the appointment by asking how things have been during the last week. If I say OK, she says, that’s not going to fly. What’s up? I tell her about the mouth sores, and the bloody nose and the constipation like a plague upon my land. She has a tight schedule, but I know if I ask a question, she’ll stop and take the time to listen and answer. Not everyone is so fortunate. I know from my FB group that some doctors have their hands on the doorknob before the patient has a chance to open her mouth. My advice: ask anyway.
Ask what the side effects will be. Ask what the long-term effects of the treatment may be. Be educated about your disease so you can be your advocate.
I write my questions down before my appointments and keep my journal handy so I’ll remember what they are (chemo brain) and to write the down the answers. It didn’t occur to me when my scan results came back with a recurrence, this time in my lymph nodes, to ask about surgery or radiation instead of chemo. I was too stunned. But my husband asked me and my daughter asked me. Turns out another shorter round of chemo was my best option to get to NED again.
Which brings me to my next point.
Learn the lingo, especially the acronyms. NED, PFS, PET scans. CT scans. MRIs. CBCs. WBC. CA 125. There are hundreds of them. Doctors assume we know what they are and what the difference is. Most of us don’t. And then there are the terms, metastatic, benign, carcinoma, staging, ports, adjuvant, neoadjuvant chemotherapy. It’s a foreign language you’re trying to learn in the middle of one of the worst days and months of your life.
A basic manual for understanding cancer and its treatment, along with term definitions, is available at http://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-terms-cancer-basics
. There are others, but this is a good place to start when you’re overwhelmed with information that your brain can’t begin to absorb.
Sometimes I think I’ve communicated until I realize I still don’t have all the information. I’m sure the physician’s assistant I saw while my doctor was on vacation thought we’d communicated well too. She told me if I got a headache while my blood pressure was high to be “sure to let them know.” If I had swelling around my ankles and feet, “to let them know.” Over the weekend, I noticed some swelling. So, then my question became, did this rise to the level of calling the on-call doctor? Or could it wait until Monday? And how did one contact the on-call doctor? I’d never done it.
I ended up waiting. At my next appointment, the PA explained that the swelling could likely wait until Monday. A headache should not. Calling the answering service at the same number I used for the clinic would get me in touch with the on-call doctor, she explained.
After more than a year with this cancer care center, I didn’t know that.
One thing I have learned in this time is that folks with cancer are greatly invested in learning everything they can. Some become instant “experts,” and feel led to share their expertise with other patients. In waiting rooms and the infusion room. Early in my treatment, I was amazed and horrified to watch such an exchange with a terrified elderly couple and a young woman who quizzed them about the elderly woman’s disease and the treatment she was about to receive. The young woman assured her it would be very painful. And she should consider getting her treatments in Houston. This center didn’t know how to treat this particular cancer. She also strongly recommended they adopt a natural diet, eliminating all processed foods. By the time the couple went in for the consult, they were even more traumatized than when they first arrived.
I wanted to stand up and demand of this woman: Where did you get your medical degree? I didn’t. Don’t let well-meaning folks who think your experience and disease is a carbon copy of theirs frighten you or sway you into not following your doctor’s advice. Be educated, be open-minded, but be smart.
Not long after this scene, a well-intentioned woman I’d never met before approached me in the infusion room to tell me I was using the wrong cane. I should get the kind with the three prongs on the bottom. Never mind that my physical therapist specifically told me not to do that. Then the kindly woman asked me if I’d eliminated sugar from my diet because “you know sugar feeds the cancer.” I explained to her my first treatment at the center, my glucose was low and my doctor told me to “eat a cookie.” That shut her up.
I know all the arguments pro and con about sugar so I refuse to engage in the argument. I’ve educated myself, I’ve communicated my concerns, and I’ve listened to my doctor’s advice. And yes, I ate the cookie. Fight the urge to become a self-proclaimed expert on your disease. Everyone’s journey is slightly different—maybe a lot different. You don’t know. Don’t assume you do.
Two-way communication is the name of the game. Getting good information can help calm your worries, your stress, and make the unknown future seem less frightening. We can all use that.