Talking about Cancer is like learning a new language; first you try and grasp an everyday word like “staging” and realize that the wording of this play is not really fun. Each Act on this stage reveals statistical predictions of life: the bigger the roman numeral, the greater letter of the alphabet, and the larger number tagged on the end indicate the seriousness of your disease “progression.” It means, statistically, how long you might live, or not. These statistics are the guidelines for the treatment to follow, your unique protocol in cancer speak.
Every oncologist I met agreed to answer questions, but did I know the right questions to ask? I know that oncologists and researchers have an interest in cancer, they just sometimes speak or write a different language, one we need to decipher. Imagine hearing:
“Opportunistic salpingectomy as a strategy for epithelial ovarian cancer prevention.” The first time I heard it roll off a doctor’s tongue I had to find a place to read it to see if it made any more sense. I laughed aloud at my lack of understanding at the time, but now I can translate for the lay person: “Whenever a patient gets a chance, if you are having surgery and opened up anyway, allow a surgeon to take out your fallopian tubes to prevent some types of cancer.” Long and a bit wordy, but that’s what women talk like when sitting around the coffee table. Not like doctors, not like medical professionals, but like friends.
Words always bring meaning
The emotional jolt of first hearing the word Cancer makes it seem like a big word, a concrete word– a word that, like birth, death, and marriage, has a before and after period. My favourite vacation before I got married, what time I went to bed before they were born, how many hours I worked before I had cancer. A concrete point in time that memories pivot around.
Thinking about it, cancer, as a word, doesn’t really tell you what disease you have. On a basic level, cancer means that cells are going crazy and multiplying, but what I didn’t know is how many types of cancer exist. Not just one for every place in the body that cancer can start from, but many different cancers from the same place. I didn’t know that cancers come in types and variations and additional rarities. Saying cancer is just the beginning of the detective work doctors do to figure out what is happening in your body. It’s the first word of many more to come. And when we are staged and imaged, and analyzed, well, we realize how complicated cancer really is and how this one word gives us chance to learn more, communicate more and discuss it more.
Sometimes the words that come out of the doctors’ mouths sound partly like sentences. I will nod my head as though I really understand the whole sentence when in reality, only a few words stand out– like cancer. I don’t do that anymore; I listen harder and try to understand, and I ask more questions.
At my last consultation, an oncologist carefully explained the next few months and the low threshold that might change the direction we were following. “Please define low threshold and let me write it down.” That is what I do now, define words that mean something different to different people. Threshold, to me, is a subjective term and I need to define it so that I am on the same page as the oncologist. I think doctors are good with that… mine was.
The single word “cancer” initiated a constant dialogue. A dialogue between the doctors and the patient, between the patient and their families and friends. With the doctors, it became a conversation of options, hope, and learning. After taking in the oncologist’s words and making them their own, patients become a step closer to making their cancer, their treatment, and their decisions their own again.
Talking and learning about cancer helps remove the ambiguity that was built around it upon the initial diagnosis. Of course, there are still many uncertainties that accompany the cancer journey, but knowledge allows patients to engage in conversations with their providers and play an active role in their treatment. Learning about your cancer, your options, and what you want can help you work with your doctors to regain control over your health.
Speaking about the power of knowledge, the GCI is proud to share that we will be launching the GCI Knowledge Translation Blog in 2023! This blog will feature articles on gynecologic cancer and health, which will all be written by GCI trainees and patient partners. It is truly an exciting time for the GCI as we attempt to expand the reach of gynecologic cancer education through informative articles written for the general public. Stay tuned for more on the launch of the GCI blog!