I have your results...
"I have your results."
There's nothing elegant about collecting a FIT (Fecal Immunochemical Test) sample. You poop on a piece of paper and jab a plastic stick into it, then screw the stick back into the little plastic container that held the stick in the first place. You then keep the poop/stick/container combination in your fridge until you can take it into your local lab. In my case I handed it to a young woman who I'm pretty sure not only went to school with my son but came to his tenth birthday party and has therefore been in my house.
But I digress.
My point is, the test isn't elegant. It's not even particularly accurate. False positive tests - where the test is above threshold but no colon cancer is present - happen often. Fairly simple and benign processes like hemorrhoids can trigger a positive result. That doesn't mean that the test is bad, just that it might be oversensitive. Think about it this way, it's likely better to refer more cases that aren't cancer for further screening than to miss some that are, right?
So... yeah. My FIT was positive. Just. I had a value of 50, right on the threshold for referral to the colonoscopy screening program. It was literally the lowest value possible that was considered positive - but it was positive. It was up from my last value of 25 taken two years earlier, but fluctuating values really aren't that uncommon with this sort of test.
"There's no need to worry," my GP told me. She was right, of course - worrying would serve no purpose. Whatever the cause of the positive result, it was either healed now or still active and had been existing in that state before I knew about the result. Then she followed up with a slightly bigger statement. "I would still like to refer you for a follow-up colonoscopy".
"Sure," I said. I'm a healthcare professional; in fact, I work on a surgical ward where patients with colon and colorectal cancer are commonly under my care. I know the value of screening, and I know that it is far better to treat colon and colorectal cancers early. Plus, being very familiar with that world, I am not scared of getting a colonoscopy.
"It's not a high priority. You should hear from the colonoscopy screening program in 3-4 weeks and probably won't be in for a scope for a few months."
She told me not to worry and I didn't worry. I knew that the likelihood of the positive FIT being the result of anything serious was small. I also knew that this is how screening programs work - look for problems early - before they become big problems - and look through a metaphorical haystack of perfectly healthy individuals in order to protect the person who might otherwise find the occasional needle. Early detection leads to early treatment which leads to positive outcomes. I went on with my life and honestly didn't even think about the pending referral to the colonoscopy screening program until they called almost exactly three months later.
"We have an opening on December seventeenth. Can you make it?"
"Sure," I said. Again, no big deal.
One of the advantages to working on my ward is that I know almost all of the gastroenterologists who would be performing my colonoscopy. I was pleased when I was told who would be doing mine - he is not only an excellent gastroenterologist, he's also very respectful and patient. His patients love him, so I felt that I would be in good hands. I don't want to share the actual names of any of my medical team so I will use aliases for the professionals providing my care; in that spirit, let's call my gastroenterologist Dr. Adam Smith. Dr. Smith would be looking at the inside of my colon from appendix to rectum and I was fine with that.
I attended the education session for my colonoscopy even though I have counselled patients on how to prepare for one. I listened carefully and went right after to buy my Colyte bowel prep. I adhered to the dietary restrictions - no foods with seeds, no nuts, and relatively low residual food like rice and chicken - for the week prior to my procedure. The day before my procedure I ate no solid food and adhered to a strict clear liquid diet (but no red jelly or drinks!!), then the afternoon before my procedure I started drinking half of the Colyte I had already bought. The morning of my procedure I drank the other half and was ready to be scoped.
My gastroenterologist - Dr. Smith - came into the endoscopy suite and introduced himself very professionally. He did a bit of a double-take when he saw my name and looked at my face, but my being there was so out of context for him that he didn't recognize me. I reminded him that we work on the same ward and that we've spoken a few times about patients and then he recognized me, apologizing for not doing so immediately. That's the kind of person he is - respectful and considerate. But context is important and he had no reason to suspect that I would be one of his patients. I took absolutely no offence. Besides, my butt was about to be centre stage for both him and the group of nurses in the suite; it was no time for hurt feelings.
Dr. Smith showed me everything he was doing during my colonoscopy. I had two small (under 1 mm) textbook polyps at the far end of my colon and a mid-sized one (about 11 mm) past the colorectal junction, technically at the second rectal valve. The location of the larger polyp made removal difficult but Dr. Smith did an excellent job changing his approach. He lifted the polyp from the mucosa (lining) of my rectum and took it off with the colonoscope's snare just like he had with the two small polyps at the other end of my colon. "They all look benign, but we will send them for pathology anyway," he told me. I already knew that every polyp removed would be sent for pathology, but it was reassuring that they looked benign to him. "The results will take about 2-3 weeks."
My colonoscopy was done on December 17th. With the inevitable slowdown of things around the Christmas break he cautioned that it might be more like mid-January before we saw any results.
"No worries," I said. After all, the polyps were benign right?
My GP left a voice message for me on our landline on January 3rd, seventeen days after my colonoscopy. She was professional and articulate and the delivery of her message was even. "I just looked at your pathology results. I'd like you to book a telephone consult with me so we can discuss them. I've also referred you to a surgeon so don't be alarmed if they call to set up an appointment."
Ignorance really is bliss.
This message might not have meant much to someone who doesn't work in the field I do, but I had a pretty strong index of suspicion that the surgeon wasn't going to call me in to their office just to confirm that everything was fine. The kicker here is that I was working a late shift at the hospital the day my Gp called and didn't get home until well after her office was closed. I went online to book a phone consult - my GP is in a very progressive group practice - and the earliest I could speak to her was the following Tuesday. I anticipated that my results were abnormal, otherwise why the need to talk to me?
The surgeon's office called the next morning before lunch.
"Dr. Samuels would like to see you as soon as possible. Can you come in on January 17th?"
"Sure," I said.
I find myself saying sure a lot about these things lately.
The period between January 3rd - when my GP left me the message - and January 8th when I could talk to her was hard. Like, really hard. I always try not to imagine catastrophe, but in my mind I knew that the news was bad and it was really hard not to make it into a calamity without information. I did my best to put it out of my mind for 120 hours until my GP called, promptly at the time I had booked.
"Hi John. You've probably already guessed this, but your results aren't good. The two small polyps in your cecum were benign, but the larger one from your rectum wasn't. The pathology report shows that you have malignant colorectal cancer."
Nobody in the history of ever has wanted to be told they have cancer. Oddly, for me the news came as a relief. At least I knew what to call it.
My GP was amazing and apologized for not being able to give me more information earlier. Ideally she had wanted to bring me in and tell me face-to-face but she just couldn't make that happen. She knows that I am a health professional - hence her use of more medical terminology than she uses with most patients - so she figured I would put two and two together. "Do you have any questions?" she asked.
"Sure." See? Sure again. "What type is it? I know it's early, but is there anything about staging?"
Staging is important to determine not just prognosis - how long I might live and most importantly with what quality of life - but also what treatment I might have to undergo. Stage I cancer is generally easily treated with very minor procedures and stage IV is often untreatable.
"I'm sorry, I just don't know. It's a T1 adenocarcinoma but aside from that it's outside my area of expertise," she told me.
I like this about my GP. She is amazing, but nobody knows everything and she is very comfortable admitting when she doesn't know something. She's not an oncologist so I didn't expect her to be an expert on tumour typing. I also knew that staging would probably not be possible without more diagnostics to look for metastases or cancer cells in the lymph nodes around the tumour.
But I had to ask.
Things started to happen quickly after that. On January 14th I got a message from my gastroenterologist's office asking me to come in to talk with him. I called back when they opened on the 15th and hise MOA had me come in at 4:00PM the same day, after he saw his last patient. Dr. Smith is much more expert in this area and told me a lot more about my results. Aside from being a T1 cancer (which is malignant and can metastasize), given the location of mine and the fact that it was detected before I developed symptoms, it is considered to be virtually 100% curable in my case.
That was good news - the first good news that I had received in 2019.
"You're in for a rough three months, but after that you will be cancer-free," he said. "I'm going to order a CT for staging right away and refer you to a surgeon."
"I'm already seeing Dr. Samuels," I tell him. He knows my surgeon even better than I do; they have shared responsibilities on a number of patients over the years.. "Tomorrow afternoon."
"Oh. Good. Really good, actually. Samuels is the best for colorectal cancer. I'll get that CT organized quickly. A week, ten days tops. Do you have any questions?"
I have a million questions, but they are all rhetorical.
"No. Thanks. But can I call your office if I think of any?"
"Absolutely. My assistant will get the question to me and I will call you back ASAP."
I already knew this. I've communicated with Dr. Smith a number of times about patients and he has always responded quickly and thoroughly. I went to my surgeon's office in the afternoon the next day for my appointment.
I arrived at Dr. Samuels' office fifteen minutes early. He was running a little late, but twenty minutes after I arrive his assistant took me into an exam room. "Take off all clothes below your waist except your socks. Dr. Samuels will want to examine you," she told me.
"Sure," I say. It's like a mantra by now. And while a tiny voice in my head wondered what exam he would do in his office that had not already been done or ordered, I was all in for whatever was required to get through this. Dr. Mark Samuels entered the exam room about ten slightly awkward half-naked minutes later.
"John. Wow... I didn't expect to see you in my office," he said, looking up from the chart in his hands.
"Me either, Dr. Samuels," I respond. Professional courtesy. I call all MDs doctor unless they specifically tell me to call them by their first name, and so far Dr. Samuels had not done so at the hospital.
"Please. Call me Mark. Now, I take it you already know your results?"
"A bit," I said. "T1 adenocarcinoma, right?"
"Yeah. Right. How much do you know about this type of cancer?" he asked.
His demeanor was collegial. He looked me in the eye as an equal, wanting to know what I knew as much as he wanted to tell me what he knows about my cancer. I told him what I know based on the patients I have cared for - many of whom were operated on by Mark - and that I knew it is highly curable based on the National Institutes of Health website.
"Right. That's all correct. Now, T1 adenocarcinoma spreads three ways," he explained. "Along nerves, through the lymphatic system, and through the blood. The good news is that there was no nervous tissue found in your tumour and no obvious lymphatic tissue either. Of course, virtually all tissues are drained by the lymphatic system so the only way we can be sure is to take sentinel nodes during surgery and send them for pathology."
I knew that as well. It's always ominous when a patient's sentinel nodes come back positive for cancer cells because the lymphatic system is everywhere. Once cancer is there, it could spread to almost any site in the body.
He continued. "The other bit of good news is that this is definitely not an MMR type so there is no genetic link to worry about. That said, do you have kids?"
"Yep. Two, both in their twenties."
"Right. Well, as you probably know first degree relatives have a higher rate of colorectal cancer so they should be screened starting age 40. Your siblings should also make sure they keep up with screening."
"Sure," I say to him.
It's like breathing.
I haven't told my sisters about my diagnosis yet; I didn't want to tell them anything and possibly scare them until I knew more clearly and then things started rolling downhill really fast.
"Now - the bad news. There is large vascular involvement and from the pathology it looks like the blood vessels were pretty well invaded by the cancer. I'm not really concerned about metastases given the size of the tumour but we'll need to get a CT scan to rule them out anyway."
"Sure. Adam Smith already ordered one for me," I told him.
"Good. Good. When is it?"
"I don't know. He just ordered it yesterday and I haven't heard back yet."
"Okay. Well, we should try to get everything done by next week. I also want a pelvic MRI and I will need to do a flexible sigmoidoscopy as well. Now, let's talk surgical approach..."
But surgery is a topic for another chapter in my journey. Before I get to that I want to tell you about the next step after getting my results...
There's nothing elegant about collecting a FIT (Fecal Immunochemical Test) sample. You poop on a piece of paper and jab a plastic stick into it, then screw the stick back into the little plastic container that held the stick in the first place. You then keep the poop/stick/container combination in your fridge until you can take it into your local lab. In my case I handed it to a young woman who I'm pretty sure not only went to school with my son but came to his tenth birthday party and has therefore been in my house.
But I digress.
My point is, the test isn't elegant. It's not even particularly accurate. False positive tests - where the test is above threshold but no colon cancer is present - happen often. Fairly simple and benign processes like hemorrhoids can trigger a positive result. That doesn't mean that the test is bad, just that it might be oversensitive. Think about it this way, it's likely better to refer more cases that aren't cancer for further screening than to miss some that are, right?
So... yeah. My FIT was positive. Just. I had a value of 50, right on the threshold for referral to the colonoscopy screening program. It was literally the lowest value possible that was considered positive - but it was positive. It was up from my last value of 25 taken two years earlier, but fluctuating values really aren't that uncommon with this sort of test.
"There's no need to worry," my GP told me. She was right, of course - worrying would serve no purpose. Whatever the cause of the positive result, it was either healed now or still active and had been existing in that state before I knew about the result. Then she followed up with a slightly bigger statement. "I would still like to refer you for a follow-up colonoscopy".
"Sure," I said. I'm a healthcare professional; in fact, I work on a surgical ward where patients with colon and colorectal cancer are commonly under my care. I know the value of screening, and I know that it is far better to treat colon and colorectal cancers early. Plus, being very familiar with that world, I am not scared of getting a colonoscopy.
"It's not a high priority. You should hear from the colonoscopy screening program in 3-4 weeks and probably won't be in for a scope for a few months."
She told me not to worry and I didn't worry. I knew that the likelihood of the positive FIT being the result of anything serious was small. I also knew that this is how screening programs work - look for problems early - before they become big problems - and look through a metaphorical haystack of perfectly healthy individuals in order to protect the person who might otherwise find the occasional needle. Early detection leads to early treatment which leads to positive outcomes. I went on with my life and honestly didn't even think about the pending referral to the colonoscopy screening program until they called almost exactly three months later.
"We have an opening on December seventeenth. Can you make it?"
"Sure," I said. Again, no big deal.
One of the advantages to working on my ward is that I know almost all of the gastroenterologists who would be performing my colonoscopy. I was pleased when I was told who would be doing mine - he is not only an excellent gastroenterologist, he's also very respectful and patient. His patients love him, so I felt that I would be in good hands. I don't want to share the actual names of any of my medical team so I will use aliases for the professionals providing my care; in that spirit, let's call my gastroenterologist Dr. Adam Smith. Dr. Smith would be looking at the inside of my colon from appendix to rectum and I was fine with that.
I attended the education session for my colonoscopy even though I have counselled patients on how to prepare for one. I listened carefully and went right after to buy my Colyte bowel prep. I adhered to the dietary restrictions - no foods with seeds, no nuts, and relatively low residual food like rice and chicken - for the week prior to my procedure. The day before my procedure I ate no solid food and adhered to a strict clear liquid diet (but no red jelly or drinks!!), then the afternoon before my procedure I started drinking half of the Colyte I had already bought. The morning of my procedure I drank the other half and was ready to be scoped.
My gastroenterologist - Dr. Smith - came into the endoscopy suite and introduced himself very professionally. He did a bit of a double-take when he saw my name and looked at my face, but my being there was so out of context for him that he didn't recognize me. I reminded him that we work on the same ward and that we've spoken a few times about patients and then he recognized me, apologizing for not doing so immediately. That's the kind of person he is - respectful and considerate. But context is important and he had no reason to suspect that I would be one of his patients. I took absolutely no offence. Besides, my butt was about to be centre stage for both him and the group of nurses in the suite; it was no time for hurt feelings.
Dr. Smith showed me everything he was doing during my colonoscopy. I had two small (under 1 mm) textbook polyps at the far end of my colon and a mid-sized one (about 11 mm) past the colorectal junction, technically at the second rectal valve. The location of the larger polyp made removal difficult but Dr. Smith did an excellent job changing his approach. He lifted the polyp from the mucosa (lining) of my rectum and took it off with the colonoscope's snare just like he had with the two small polyps at the other end of my colon. "They all look benign, but we will send them for pathology anyway," he told me. I already knew that every polyp removed would be sent for pathology, but it was reassuring that they looked benign to him. "The results will take about 2-3 weeks."
My colonoscopy was done on December 17th. With the inevitable slowdown of things around the Christmas break he cautioned that it might be more like mid-January before we saw any results.
"No worries," I said. After all, the polyps were benign right?
My GP left a voice message for me on our landline on January 3rd, seventeen days after my colonoscopy. She was professional and articulate and the delivery of her message was even. "I just looked at your pathology results. I'd like you to book a telephone consult with me so we can discuss them. I've also referred you to a surgeon so don't be alarmed if they call to set up an appointment."
Ignorance really is bliss.
This message might not have meant much to someone who doesn't work in the field I do, but I had a pretty strong index of suspicion that the surgeon wasn't going to call me in to their office just to confirm that everything was fine. The kicker here is that I was working a late shift at the hospital the day my Gp called and didn't get home until well after her office was closed. I went online to book a phone consult - my GP is in a very progressive group practice - and the earliest I could speak to her was the following Tuesday. I anticipated that my results were abnormal, otherwise why the need to talk to me?
The surgeon's office called the next morning before lunch.
"Dr. Samuels would like to see you as soon as possible. Can you come in on January 17th?"
"Sure," I said.
I find myself saying sure a lot about these things lately.
The period between January 3rd - when my GP left me the message - and January 8th when I could talk to her was hard. Like, really hard. I always try not to imagine catastrophe, but in my mind I knew that the news was bad and it was really hard not to make it into a calamity without information. I did my best to put it out of my mind for 120 hours until my GP called, promptly at the time I had booked.
"Hi John. You've probably already guessed this, but your results aren't good. The two small polyps in your cecum were benign, but the larger one from your rectum wasn't. The pathology report shows that you have malignant colorectal cancer."
Nobody in the history of ever has wanted to be told they have cancer. Oddly, for me the news came as a relief. At least I knew what to call it.
My GP was amazing and apologized for not being able to give me more information earlier. Ideally she had wanted to bring me in and tell me face-to-face but she just couldn't make that happen. She knows that I am a health professional - hence her use of more medical terminology than she uses with most patients - so she figured I would put two and two together. "Do you have any questions?" she asked.
"Sure." See? Sure again. "What type is it? I know it's early, but is there anything about staging?"
Staging is important to determine not just prognosis - how long I might live and most importantly with what quality of life - but also what treatment I might have to undergo. Stage I cancer is generally easily treated with very minor procedures and stage IV is often untreatable.
"I'm sorry, I just don't know. It's a T1 adenocarcinoma but aside from that it's outside my area of expertise," she told me.
I like this about my GP. She is amazing, but nobody knows everything and she is very comfortable admitting when she doesn't know something. She's not an oncologist so I didn't expect her to be an expert on tumour typing. I also knew that staging would probably not be possible without more diagnostics to look for metastases or cancer cells in the lymph nodes around the tumour.
But I had to ask.
Things started to happen quickly after that. On January 14th I got a message from my gastroenterologist's office asking me to come in to talk with him. I called back when they opened on the 15th and hise MOA had me come in at 4:00PM the same day, after he saw his last patient. Dr. Smith is much more expert in this area and told me a lot more about my results. Aside from being a T1 cancer (which is malignant and can metastasize), given the location of mine and the fact that it was detected before I developed symptoms, it is considered to be virtually 100% curable in my case.
That was good news - the first good news that I had received in 2019.
"You're in for a rough three months, but after that you will be cancer-free," he said. "I'm going to order a CT for staging right away and refer you to a surgeon."
"I'm already seeing Dr. Samuels," I tell him. He knows my surgeon even better than I do; they have shared responsibilities on a number of patients over the years.. "Tomorrow afternoon."
"Oh. Good. Really good, actually. Samuels is the best for colorectal cancer. I'll get that CT organized quickly. A week, ten days tops. Do you have any questions?"
I have a million questions, but they are all rhetorical.
"No. Thanks. But can I call your office if I think of any?"
"Absolutely. My assistant will get the question to me and I will call you back ASAP."
I already knew this. I've communicated with Dr. Smith a number of times about patients and he has always responded quickly and thoroughly. I went to my surgeon's office in the afternoon the next day for my appointment.
I arrived at Dr. Samuels' office fifteen minutes early. He was running a little late, but twenty minutes after I arrive his assistant took me into an exam room. "Take off all clothes below your waist except your socks. Dr. Samuels will want to examine you," she told me.
"Sure," I say. It's like a mantra by now. And while a tiny voice in my head wondered what exam he would do in his office that had not already been done or ordered, I was all in for whatever was required to get through this. Dr. Mark Samuels entered the exam room about ten slightly awkward half-naked minutes later.
"John. Wow... I didn't expect to see you in my office," he said, looking up from the chart in his hands.
"Me either, Dr. Samuels," I respond. Professional courtesy. I call all MDs doctor unless they specifically tell me to call them by their first name, and so far Dr. Samuels had not done so at the hospital.
"Please. Call me Mark. Now, I take it you already know your results?"
"A bit," I said. "T1 adenocarcinoma, right?"
"Yeah. Right. How much do you know about this type of cancer?" he asked.
His demeanor was collegial. He looked me in the eye as an equal, wanting to know what I knew as much as he wanted to tell me what he knows about my cancer. I told him what I know based on the patients I have cared for - many of whom were operated on by Mark - and that I knew it is highly curable based on the National Institutes of Health website.
"Right. That's all correct. Now, T1 adenocarcinoma spreads three ways," he explained. "Along nerves, through the lymphatic system, and through the blood. The good news is that there was no nervous tissue found in your tumour and no obvious lymphatic tissue either. Of course, virtually all tissues are drained by the lymphatic system so the only way we can be sure is to take sentinel nodes during surgery and send them for pathology."
I knew that as well. It's always ominous when a patient's sentinel nodes come back positive for cancer cells because the lymphatic system is everywhere. Once cancer is there, it could spread to almost any site in the body.
He continued. "The other bit of good news is that this is definitely not an MMR type so there is no genetic link to worry about. That said, do you have kids?"
"Yep. Two, both in their twenties."
"Right. Well, as you probably know first degree relatives have a higher rate of colorectal cancer so they should be screened starting age 40. Your siblings should also make sure they keep up with screening."
"Sure," I say to him.
It's like breathing.
I haven't told my sisters about my diagnosis yet; I didn't want to tell them anything and possibly scare them until I knew more clearly and then things started rolling downhill really fast.
"Now - the bad news. There is large vascular involvement and from the pathology it looks like the blood vessels were pretty well invaded by the cancer. I'm not really concerned about metastases given the size of the tumour but we'll need to get a CT scan to rule them out anyway."
"Sure. Adam Smith already ordered one for me," I told him.
"Good. Good. When is it?"
"I don't know. He just ordered it yesterday and I haven't heard back yet."
"Okay. Well, we should try to get everything done by next week. I also want a pelvic MRI and I will need to do a flexible sigmoidoscopy as well. Now, let's talk surgical approach..."
But surgery is a topic for another chapter in my journey. Before I get to that I want to tell you about the next step after getting my results...
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