Why We Need to Talk About What We Don’t Talk About
Being diagnosed with rectal cancer comes with that societal aversion to not talk about “private parts”. It makes people uncomfortable. It’s like when you’re first learning to talk and you find out saying poop makes all the adults squirm and giggle so you say it over and over trying to illicit a response, typically a laugh. It’s funny, it’s awkward, it’s like a forbidden word. Poop… butt… farts… why do they all seem so childish? I even squirm just typing them out right now.
The issue is that this carries on into adulthood and when we have issues in those most private secret never-to-be-talked-about places it’s extremely hard to bring them up. I bled out of my ass and where my very first thought was “I should tell someone about this” it was quickly followed by “well maybe not, maybe this is fine it just happened once”. Go to a doctor and tell them something about my butt? What am I, some sort of pervert? But that’s ridiculous! That is absolutely absurd. I had a medical emergency going on and I was hesitant to bring it up because I feel awkward talking about my body? How tragic.
Here’s another sad fact: some doctors are also awkward and embarrassed and uncomfortable talking about private parts. So what does this lead to? More shame and uncomfortable feelings about your own body!! It’s madness. Let me tell you a story. I have an incredible colorectal surgeon, he’s probably in his 50’s, very sweet man. When I met him the first time I asked him if I got cancer because I never spit my gum out after chewing it, always swallowed it, down the hatch. He took one moment, said “no” Turned to my mom and said “She’s funny. Aren’t daughters great?” Ok, so a very sweet man and also a highly respected surgeon, right? Well when it came time for someone, presumably him, to tell me I’d likely need a full hysterectomy because it appeared my tumor grew into my uterus do you know what happened? My gastroenterologist, a woman, told me. Walked into the room and said, “I know we talked about maybe forgoing radiation on the pelvis to try to preserve your ability to carry children but actually we need to do radiation. Also, they want to take your uterus.” It felt like a bomb went off, ears ringing, completely dazed, the whole 9. But back to the point, SHE told me because HE didn’t feel comfortable. I would find out later from my gynecologic surgeon that my colorectal surgeon cannot and will not talk about the vagina or anything female reproductive system oriented because it makes him squirm. And that it did. Anytime I brought up something around that he would immediately defer to his nurse or tell me he’d talk to my gynecologic surgeon.
What implications does this have apart from making patients and doctors uncomfortable? Data. When I went to the cancer center at the Mayo clinic I found a booklet on cancer statistics and naturally went to rectal cancer where I saw a little note. The note said the data could be inaccurate due to the “sensitive nature of the topic: Some individuals might be hesitant to discuss rectal health issues, impacting data collection”. Some doctor’s just call it colon cancer. Or people share that they have colon cancer instead of what they really are diagnosed with. The issue here is they are completely different cancers with different treatment plans! Think about it, you have FEET of colon, you have roughly 5-6 inches of rectum. If you have a tumor in your colon the treatment plan is to start with surgery to resect that area of the colon and then chemotherapy and/or radiation might come afterward. If you have rectal cancer you start with chemotherapy and maybe radiation, and THEN you resect the tumor. Another important piece to note, your rectum, if you’re a woman, sits pretty damn close to your vagina and uterus. Data about that specifically would have been very helpful for me throughout my treatment. What are the chances that after chemo and radiation to my pelvis that I’ll be able to carry a child? Who knows!! There isn’t research. And it feels like and seems as though there isn’t research because it’s awkward! It’s a faux pas!
So what I propose is this: there needs to be trainings with medical staff on the importance of being able to ask these tough questions and convey uncomfortable truths to patients while maintaining professionalism. Maybe there could be something added to health classes in schools about how to talk to medical professionals about their bodies and try to break the stigma. Work can be done on both sides, but something needs to be done for the betterment of society.