DEAR UNDER 50 SOMETHINGS AND THEIR DOCTORS – COLON:
ABOUT COLONS & THE 20 YEARS “TOO EARLY” SCREENING THAT SAVED MY LIFE
Yesterday I went for a follow up procedure to one I had last year.
Over the course of the last year, I’ve almost shared my experience numerous times via a facebook post. Each time, I stopped short because (a) it wasn’t a topic that is generally considered appropriate for public sharing, and (b) there was no way to make the story short. But, over this last year, I’ve read a lot and my reading included several stories of young adults who were not as fortunate as me. So, if only one person reads this and it saves their life, that’s good enough for me. If I didn’t share and someone I may have reached in sharing ended up with a terminal diagnosis that could have been prevented, I don’t think I could stand the “What if I had shared my story?” guilt…
So, can I be a little unladylike for a minute? Don’t worry, it’s nothing crass or crude, it’s just something that I wouldn’t necessarily call dinner table talk either…. If the discussion of colons that are not punctuation marks makes you uncomfortable, here’s your warning… BUT… I would urge you to continue reading. Your life might depend on it. Not only am I wanting to talk about colons, I also want to talk about another topic that makes people uncomfortable… Cancer. Colon Cancer to be exact. ABOUT HOW I NARROWLY AVOIDED COLON CANCER. PLEASE KEEP READING… If you’re like me you’ve already said, “Welp, that has nothing to do with me, so….I guess we’re done here.” and you click the “x” and off to the next thing you go. Don’t do that. PLEASE?!? What I have to share might save your life. That sounds so cliché and gimmicky, I know… I’m not being overly dramatic to keep you reading, promise. It’s long, I’m sorry. It’s my hope that telling the entire story could be helpful to someone like me who might otherwise brush something off.
DOCTORS, I HOPE YOU’LL READ TOO.
You have much to be proud of, you have spent much time in school and lots of money to learn what you know. My hat’s off to you. I have the utmost regard for that. However, some things you can’t learn in school. While you’re the professional and likely seeing a TON of patients on any given day, it is so very important that you give your patients your attention while seeing them. I have read article after article about “What Doctors Wish You Would Share” and other similar titles, yet when I have shared my concerns, it often feels they are brushed off and go largely unlistened to. I’m either the ideal patient or the most annoying, I’m not sure. I don’t come see you unless I really feel there is something wrong. While you’re nice and all, I HATE sitting and doing nothing for an hour and a half plus, waiting on you when there are plenty of other things I could be doing. Rest assured, I’m not sitting at home on WebMD searching for a reason for us to catch up again. I do like to think I’m relatively intuitive about my body and when it feels “off,” but to be sure, I’ll give it a little time to make sure it’s really “off” before making that dreaded hour plus appointment with your waiting room chair. I have ADHD (not joking, like I’m about as textbook an adult female case as you’ll find with a diagnosis and follow up diagnosis to be sure), and the thought of sitting idly with nothing to occupy my overly self-stimulating brain is on par with nails on a chalk board in my mind, both make me cringe – BIG. I’m pretty sure I let a broken bone (at least that’s what the bruising and continued pain in the top of my foot seemed to point to) go last year just because I didn’t want to deal with it. I’ll stop there, I think I’ve painted a somewhat clear picture to help with your diagnoses that I am NOT A HYPOCHONDRIAC. That said, I do pay attention to you and all of my doctors. I do do my own research and have learned not to be shy about asking questions – not to question you, I sincerely have a strong desire to fully understand and be as informed as possible. Sorry, for expending so many words, I know you’re busy and probably a little sleep deprived. My thoughts, though, are that overly thorough beats leaving important things to inference and assumption any day. And… I’m not nearly as good at short hand as you! All that to say: You’re intelligent. Paying attention to your patients can:
- Help you suss out who to lend credence to and who is looking for an RX or using the Google too much.
- Save your patient’s life by not missing something important that could lead to an early and treatable or curable diagnosis.
-I do sincerely hope you’ll continue reading, if for no other reason than I may be a good example or case study for something a little out of the ordinary and it might come in handy with a patient later on.-
Last spring I had been experiencing some intermittent, pretty uncomfortable tummy troubles for a few months. I finally began to feel uneasy about letting them go unchecked any further and scheduled my yearly a month early. When I say uncomfortable, I don’t mean I was really out of whack, it wasn’t some crazy, “OMG!!!” moment. It was just a few intermittently recurring things, including some uncomfortable bloating. I’ll be ladylike and spare the other details, but if you are curious about yourself, have any questions, and/or want to know more, please reach out, I’ll happily share.
When I spoke to my gyno, I expressed concern over these things. She assured me that sometimes the bacteria in our gut gets out of balance, that that’s probably what it was. While logically, I thought she may be right, I don’t know how to tell you I knew it wasn’t the right answer, but it didn’t feel like the right answer. I persisted. Same reassurance again. Still didn’t feel like the right answer. I persisted again. Finally my doctor relented and said she’d refer me to a GI doc. I thanked her and we went our separate ways. I got my labs back from my yearly (the standards), on that paper, I was healthy as a horse.
– “While logically, I thought she may be right, I don’t know how to tell you I knew it wasn’t the right answer, but it didn’t feel like the right answer.” –
Meanwhile I had gotten a call from the GI clinic and, you know how it goes when trying to get into any specialist, especially in a smaller city where they aren’t as abundant, the first available appointment was about a month out. I went to my appointment in April of last year and met my GI doctor for the first time. Apprehensive is an understatement when describing how I felt about this meeting. I mean, I’m going to talk to a stranger about things you don’t share with people you’ve just met, unless of course you are into social faux pas and not speaking to them again. As it got closer, I had to do that thing where I mentally psyched myself into not talking myself out of going and not cancelling.
When the doctor walked in, I cannot say enough about how comfortable I felt immediately. His “bedside manner” was off the charts. Speaking of charts, he’d clearly read mine. He was very personable and, as with anybody you meet in any southern town, we made the connections of people and hometown (I always say around here it’s more like 2 degrees of separation). He then referenced the infertility treatment mentioned in my chart, and shared his personal story about his and his wife’s struggle. Then we got down to the nitty gritty about why I was there. I described my symptoms, he listened intently and we had an intelligent discussion about the possibilities and he asked more questions to better understand the nuances of these symptoms. While I acknowledged that my symptoms weren’t necessarily indicative of anything horrible, something felt off. He didn’t brush me off. He didn’t suggest I go home and wait it out. We discussed the diagnostic options and he offered that out of prudence and caution, it may be a good idea to schedule several tests – a hydrogen breath test to check for a bacterial imbalance, a colonoscopy, and an endoscopy. I was on board. I’m not a wait it out person. I like to get to the bottom of things and get answers to avoid a possible worse outcome. I left the exam room and met with lady who scheduled procedures and scheduled all three.
“I described my symptoms, he listened intently and we had an intelligent discussion about the possibilities and he asked more questions to better understand the nuances of these symptoms. . . He didn’t brush me off. He didn’t suggest I go home and wait it out. We discussed the diagnostic options and he offered that out of prudence and caution, it may be a good idea to schedule several tests. . .”
First up was the easiest and least invasive, the hydrogen breath test. The results came back and there was indeed an imbalance in my gut. He prescribed a round of antibiotics and gave me some literature on how to help keep the balance in there. At this point, I started second guessing myself and the other two procedures. I thought, “Well, my gyno was right and I’ve just blown this thing out of proportion in my head. I should probably cancel the colonoscopy and endoscopy, my symptoms were probably from the imbalance.” Plus, the general rule and recommendation is that the first preventative colonoscopy doesn’t happen until age 50 and then in 10 year increments following. I was 31, 20 years too early according to that recommendation.
AGAIN, HERE’S WHERE I’M GRATEFUL – FOR WHAT HAD TO BE DIVINE INTERVENTION WHISPERING IN MY EAR, TELLING ME NOT TO CANCEL –
What could it hurt for me to go through with those just to be sure? Colonoscopy prep horror stories aside, I decided to keep my appointment. I got more justification for my decision, at least regarding the colonoscopy, when the pre-certification lady called from the GI clinic to tell me that my insurance would cover the colonoscopy with $0 out-of-pocket cost for me. (FYI, if you have insurance, this is considered a preventative diagnostic procedure and is usually covered 100% by a lot of insurers, even before any deductible or out-of-pocket max is met. I’m not telling you that is always the case, I don’t know your particular policy and cannot advise you on whether this would be the case for you. Check with your insurer to know for certain.) The endoscopy, however, was not covered at 100% and I would be out of pocket close to $1,000 for it. I like being thorough and certain about things, but I decided to hold off on the endoscopy and reschedule in the event something came of the colonoscopy.
My procedure was scheduled for Monday, May 16, 2016. The dreaded weekend before came around. When anyone mentions colonoscopy, everyone who has any idea what’s involved winces. If you’ve never had one, you think they’re wincing because “you’re about to have a scope inserted where?” Y’all, I’m here to tell you, you’re out cold for that.
You won’t have nary a recollection of it, nor will you even know anything has been inserted after you wake up. Other than anxiety about anesthesia, and that awful video of the rare and extreme worst case scenarios they make you watch just before going back, the actual procedure is the least traumatic part of this ordeal. I PROMISE. The part that’s shrouded in mystery because nobody talks about it (reference the social faux pas and running people off thing above…) is the prep for the procedure. Your gut has to be clean as whistle so that the view of any potential problems is not obstructed. To accomplish this they give you a huge jug of what I like to call “Satan’s Tears of Laughter” to flush out any potential obstructions. It’s the misery inducer, tastes so bad that you have to gag it down, and it’s also got a slight saltiness about it… It’s the party starter. To avoid making this post even longer, I’ll write more about the prep and details on my experience with the procedure in another post. Long story short, I followed the prep instructions to a “t”, did the fasting, drank the cocktail of the demons, and got my colon sparkly clean.
Monday morning came and I was grateful to have the first appointment of the day. I was ready to get the dreaded unknown behind me and I was HUNGRY! At that point cold cereal sounded like a fine culinary delicacy. I signed my life away and they called me back to the procedure prep/recovery room. I watched that lovely video I referenced above, they inserted the IV ports for fluids and anesthesia, and shortly I was on the gurney ride back to the procedure room. After a short convo with the doc, in the IV went the Propofol and almost immediately I was out. I knew nothing until I was coming around and being wheeled back out to the recovery room and hear “two polyps… something, something… biopsy.” In my groggy brain, I though oh, they must be talking about another patient. But… what if it was me they were talking about? And a groggy brain usually just says what’s on its mind, so I managed to somewhat coherently mutter, “Wait, are you talking about me? Two polyps? Biopsy? Am I okay?” The nurse just responded that the doctor would be in to talk to me in just a few minutes.
“I was ready to get the dreaded unknown behind mE and I was HUNGRY! At that point cold cereal sounded like a fine culinary delicacy. “
Needless to say, I wasn’t so groggy anymore. Now I was just thinking, “OMG! Biopsy?!? Am I okay?” My mind raced until the doctor came in. My mother was there with me and she and I both remember the look on his face. His eyes were big in an expression that said, “This is not what I was expecting…” He told me he’d found and removed two polyps, one small and not terribly concerning, the other was ugly and very large, 18 mm, and was very concerning. We’d have to wait on the biopsy to confirm, but it was likely precancerous and if so, I’d have been dealing with full-blown colon cancer within the next year or so. (After the biopsy, it was determined, I was one small stage away from cancer.) If I wasn’t totally sober and out of my groggy stupor before, I was now. My mind was off to the races again. I remember him saying that he was really not expecting to find anything, that he honestly thought it would just be an exercise of abundance of caution. And I remember him looking at my mom saying, “She’s so young.” Then looking at me and saying, “You’re so young.” and reiterating his surprise at what he found. Then we all collectively agreed on how glad we were that he had suggested the screening and that I had agreed to it.
I know at this point my long story may have you yawning and not as tuned in as when you started, so maybe the impact of the last paragraph got lost in the shuffle, I’ll repeat the important part:
Remember what I said above? The recommended age for the first colon screening is 50. According to the medical guidelines, I wasn’t supposed to have a colonoscopy for another 20 YEARS! I’D HAVE POTENTIALLY BEEN DEAD LONG BEFORE THAT. That’s not overly hyped dramatics, it’s reality.
Blissful ignorance isn’t comforting to me. I like to have as much information as possible, to know all of the possibilities, good or bad. Given that, after being told colon cancer was sitting just around the bend for me, I set about reading that afternoon. My first question when I re-collected my thoughts was whether it was genetic/hereditary. Should my mom and dad be concerned? I have two little sisters, should I urge them to get screened? OR… Was it my diet, was there something I was doing to aid these mutant cells? It is genetic, as confirmed by my doctor yesterday when I asked again. He told me if I was asking whether or not I was doing something that was causing it, I was not. He said it’s genetic, just like blue eyes or brown eyes. Needless to say, that day I informed my parents of this and urged my middle sister who was approaching 30 to consult her doctor about getting screened. Yesterday my doctor told me that if I had any younger siblings or children, that they should be screened 10 years before the age of my first screening. My youngest sister just turned 20 a couple of days ago. That means she also needs to be aware and to get screened in the next year.
“It is genetic, as confirmed by my doctor yesterday when I asked again. He told me if I was asking whether or not I was doing something that was causing it, I was not. He said it’s genetic, just like blue eyes or brown eyes.”
Another question I had was how common it was to find a precancerous polyp in someone my age or close to it. In reading several credible sources, including findings of medical studies, it is increasingly common, increasingly to an extent that concern was expressed in these accounts by physicians about the recommended screening age. My next question was: WHY, THEN, IS THIS NOT WIDELY-SHARED, PUBLIC KNOWLEDGE?
I shudder to think, y’all. It’s a very scary prospect that makes me nauseous when I think about the reality of what could have been.
Yesterday my doctor confirmed again that the big ugly polyp was in fact an Adenocarcinoma, the fancy term for “a cancerous tumor that forms in the mucus-secreting glands throughout the body.”
In case you are wondering, I did schedule the endoscopy after the colonoscopy findings. Much less intense prep for this one! I had it done on June 15 of last year. Other than a hiatal hernia, there wasn’t much to report after that one, THANK GOODNESS!!!
Because of the BUP (big ugly polyp), my doctor told me to schedule a follow-up colonoscopy in one year instead of the usual ten year gap between screenings with healthy results. Yesterday’s screening was my one year follow up. You can bet I was far more anxious this time about what the results might be. They were much less scary. I did have one polyp, but it was very small, only 3 mm. I had hoped there wouldn’t be anything, but I’ll take one little 3 mm polyp over another BUP any day! Given the results of this most recent screening, I was advised to come back in 3 years for another.
While a 3 year gap in screenings makes me a little nervous, I will admit, a 3 year reprieve from the prep weekend is a little bit exciting!
Over this last year I have read several accounts of people close to my age who didn’t catch theirs before it was cancer. At least one of whom is no longer here. That just drives the scary reality home even more. They didn’t do anything to cause it. They probably weren’t neglectful of their health. They just didn’t know it was a very real possibility at their age. Because colon cancer grows quietly inside of your body, it can potentially be very advanced before the symptoms become very concerning and fall far enough outside of the realm of normal, “suck it up, buttercup” discomfort to seek medical help.
I share all of this in hopes that it is seen by others under 50 who may be dismissing seemingly benign symptoms because they think it’s not possible or likely that it’s anything serious. I tried to be somewhat light-hearted where I could in my account, but I share it for a very serious, literally life or death, reason.