How did you first discover or got diagnosed with colorectal cancer ?

[Jolene]

Hi everyone,

I'm curious as to how everyone first discovered or got diagnosed with colorectal cancer ? I have always thought symptoms only present itself when it's T3 and above or when you are above 50, but I see that quite a number of members got diagnosed at T2 or even T1 and a number of you are also under 50 like myself.

I thought it might be important to discuss how everyone first discover your situation or got diagnosed, what were the symptoms that led you to do a check-up. It could be useful for everyone to help those close to us to spot any of such symptoms moving forward as I believed the specific symptoms varies with everyone. My mum who had colon cancer did not have any physical symptoms except for exhaustion.

Were there any intangible symptoms present that in hindsight should have rang alarm bells ? Those who got diagnosed at T1 or T2 - were there already symptoms for you ?

I'll go first...

I'm 39 and discovered blood in my stool out of the blue during a work trip. Bouts of alternating mild constipation and mild diarrhoea followed which was actually still very manageable. I just assumed I had food poisoning and not once did it cross my mind that I would have colorectal cancer seeing as I'm under 50. The blood in the stool continued for about a week and I quickly went to a General practitioner. He suspected hemorrhoids, looked up my anus but found nothing. He next suspected a small anal fissure and gave me some cream to apply. After applying the cream continuously everyday for about 1.5 weeks, there was still no improvements. Blood continued to be visible in my stool. There was zero pain. Returned to him and he sent me straight to specialist for a colonoscopy.

The first specialist took my situation lightly and assumed it was nothing major and that it's probably internal hemorrhoids instead of external. He even asked if I used the mobile phone a lot while sitting on the toilet bowl as that can cause hemorrhoids ! I guess because of my age, everyone seems to be quite chill about the situation. He had me arranged for a colonoscopy but it wasn't until like weeks before he had a slot for me.

I didn't feel comfortable and decided to seek a second specialist. He poked up the anus and immediately ordered a colonoscopy the next day, clearing all his other prior appointments deeming it as an urgent situation. An MRI + CT on the same day of the colonoscopy confirmed I was T3N1M0. Treatment plan was laid out on the 3rd day.

I am glad that I heeded my instinct and looked for a second specialist who took my situation seriously. Otherwise, it could have been much more dire than just T3,N1,M0 !

In hindsight, there was already other symptoms but it didn't warrant a visit to the GP as yet. I was always feeling quite bloated before my diagnosis but simply put it down to getting older and slower metabolism. I tried eating less and carefully but I still felt bloated (and hungry) all the time. My body just didn't feel right but again I put it down to work stress and modern life ! A few months before the diagnosis I actually discovered a huge patch of bright red blood on the toilet paper (without stool)! I was shocked but then brushed it off as probably early stage hemorrhoids and ignored it. Afterall, there was no pain and I thought I was way too young to warrant the urgency of having anything checked out.

[Pyro]

I was blocked down there, prune juice finally got things moving but split open the tumor in my rectum. It bled so much I went to the doctor and then the hospital to get a transfusion, in the hospital I got a CT where they discovered it. I was 38 and this type of cancer doesn’t run in the family, total shocker. Turns out it was stage 4, this was over 3 years ago and I’ve blocked most of it from my mind.

[sinewaves]

I noticed blood in my stool, and asked my PCP about it. He gave me a FIT test, which showed positive for blood. Because of my age (37), he said it was probably internal hemorrhoids and not to worry, especially since there's no known history of colorectal cancer in my family.

Waited another few weeks and still noticed blood, so asked next steps. He seemed uninterested and kept telling me to wait. I decided to schedule a colonoscopy anyway because it didn't get better, and I started having constipation. I'd call them "phantom poops" - where it felt like I had to go, but just a little of what I'd call a light dust came out.

GI doc also didn't seem worried, and scheduled the colonoscopy out about a month. Knew something was wrong when my wife and I were waiting a long time after the procedure since the doctor wanted to talk to us. Told us about the tumor, and gave us referrals to a CT scan and radiation oncologist. T3 N1 M0.

Finished week three of Xeloda and radiation now, hoping to have this all a bad memory in a few months.

[DarknessEmbraced]

Earlier in 2014 I had blood drip into the toilet from my rectum. It was scary but I thought it was just a hemorrhoid even though it took a while for the bleeding to stop. My family doctor brushed it off saying it was a hemorrhoid. In I believe August or September I was at my boyfriend's parent's place and suddenly became very bloated and experienced intense cramping. I went to the bathroom and it felt like there was to much stool to come out all at once. I was in there a long time and filled the toilet with stool. I was in a lot of pain, weak and shaky. I thought I had just been constipated. When I came home I had really bad diarrhea the next day. The following day I had much worse cramping and had rectal bleeding both on the toilet paper and mixed in with the stool. There was also a lot of mucus mixed in with the blood. I started not being able to eat much because I was in pain and having rectal bleeding all the time. I went to the ER after the pain became so bad that I was doubled over. I was constipated by that time and was only passing blood. The ER doctor wanted to do a occult stool test but I couldn't due to constipation. I told him my symptoms and he said that he would refer me to a GI for a colonoscopy. That they might find inflammatory bowel disease but because of my age(36) it was unlikely to be anything serious. I had to wait a week or so for a call back from the GI's office due to Thanksgiving(I'm in Canada)/ His receptionist apologized and booked me for a colonoscopy. After the colonoscopy my GI said he had found a lesion in my bowel and had taken many biopsies so I might have more bleeding. They also took my blood and he said he wanted me to have a chest/abdominal/pelvic CT scan. I had the CT scan and the following week I returned to his office. I wasn't prepared for the diagnosis of colon cancer and was in a daze. I was alone because my boyfriend was at work. The GI said my tumor was in the rectosigmoid junction and that he wasn't certain whether it was rectal or colon cancer. He told me the treatment was different for both. I was sent for a rectal MRI so he could better visualize the tumor. I went back to see him and he scheduled my surgery three days later on November 20th, 2014. My tumor was T3N0M0 stage 2a. I saw an oncologist because my pathology report said lymph vascular invasion undetermined. The oncologist didn't recommend chemo. I have been in remission since surgery.

[Maggie Nell]

For what it is worth, this is what past colon clubber Marc (lohidoc) wrote in
August 2011...

Well, yet another newly diagnosed victim.... I am a 56 year old male, physician actually, always been
healthy and like most doctors ignored my own symptoms for what may have been years! Diagnosed with stage 3c colon ca,
involving coecum and ascending colon. Had my surgery on July 25, 7 out of 23 nodes positive, complete resection
with clear margins, tumour grade poorly differentiated to undifferentiated, no evidence of distant spread
according to CT, normal CEA levels.

Just so as you're not too harsh on yourself as layperson non-medico and think you shoulda done better. Most people
get blindsided.

marcdu4.wordpress.com

[hilltrip87]

Hi! I’m one of the younger ones here too (31yo), and a registered nurse. This sounds crazy, but I actually had symptoms for years before my diagnosis. At 28 years old, when you have occasional diarrhea, you don’t automatically assume colon cancer.

My symptoms started out mild- occasional diarrhea here and there, but nothing more. The line of work I’ve always been involved in (intensive care, organ procurement, etc) makes for a stressful environment so if my stomach was upset, I always figured it was stress. Within the last year I really started noticing the loose stools more often. It was becoming rare for me to have a “normal” BM. I kept telling myself it was stress, or maybe the horrible things I was eating on night shift, or maybe I had a gluten or dairy intolerance. I swear, healthcare people are the worst patients lol. It wasn’t until about 6 months before my diagnosis that I started having HORRIBLE cramping when I’d go to the bathroom. At times the cramping was so bad I felt like I was going to pass out or die on the toilet. That impending sense of doom feeling. At this point it was starting to affect my every day life and I knew I needed to get checked out. A close friend of mine has IBS and I was explaining my symptoms to her and she was certain I probably had it as well.

Upon my initial visit w/ my GI, he recommended a colonoscopy before diagnosing me w/ IBS. I absolutely did not want to go through with it. I thought it was overkill for some IBS. After putting it off for a few weeks, I ended up going through with the colonoscopy (which was NOTHING compared to what I’ve been through now)! My GI doc found a MASSIVE polyp in my sigmoid colon. He gave me the choice when I woke up of having it removed endoscopically or having surgery (colectomy). I thought this was a no brainer- the least invasive way of course! But he assured me that if it did come back showing any cancer cells, then I would still have to go through with a partial colectomy. I was willing to take my risks. He didn’t perform any biopsies during my initial colonoscopy because he said that would have affected his ability to remove it endoscopically. I knew it was a risk having the EMR instead of surgery- bc the polyp was so big there was a chance it could’ve been cancer, but my doc was pretty confident it was benign and I was willing to do anything to avoid a colectomy at that point.

Long story long- after the polyp was removed, pathology came back showing a small amount of cancer cells. Because it couldn’t be determined where these cells were in relation to the polyp and colon lining, it was highly recommended I have a partial colectomy. After my colectomy, microscopic cancer cells were found in the lining of my colon and in one lymph node. StageIIIA colon cancer at 31 years old. I have since had a port placed and have begun Folfox- which sucksssss. But I keep telling myself that it could always be worse and they “think” they’ve gotten it all. PET and CEA levels are normal. The Folfox is to ensure no more microscopic cells are left behind (CEA was normal before my surgery too). Good luck to you all!! We got this!

[del]

The symptoms that led to me getting a colonoscopy were bright red blood and mucus on the toilet paper for several weeks. I saw three different doctors before I got a referral to a gastroenterologist, as they just dismissed it as hemorrhoids. I finally took a photo of the toilet paper and showed it to the doctor to get the referral.

[crikklekay]

My husband (41 at the time) had some mild cramping in the abdominal area but since he was healthy and that mild nonspecific pain could be "related to thousands of things" his doctor advised just waiting to see if it improved. It went away and we didn't think anything of it. Then right after Christmas 2017 he became constipated and experienced harsh cramping, things escalated quickly and within 72 hours we were in the ER as he couldn't keep a single thing down. The doctors were baffled, but when the gastroenterologist did a colonoscopy he was blocked by a mass in his sigmoid colon region. It was then a rush to get him on the docket for surgery because his colon was slowly constricting the blood vessels which was dangerous. They got the tumor out with good margins, and as you can tell by my sig we had a bumpy road to NED.

Up until then, my husband was healthy as a horse. He never gets sick, has perfect blood pressure and only mildly elevated cholesterol. No history in his family, no reason to think the cramping wasn't just mild IBS, no other symptoms until the blockage.

[Nohogirl]

As strange as it may sound my husband's only symptoms were night sweats and fever for 6-7 months before his diagnoses. We have been to different emergency rooms to different specialists ( pulmonologist, endocrinologist, urologist), they couldn't find anything wrong but, just in case they were treating him for first flu then bronchitis and lastly prostitis. Once he would start his antibiotics the fever would diminish but as soon as he would finish the course, the fever would come right back and each time higher and with more chills. I even remember, one day when I was driving him to ER, he was shivering so badly that the car would shake making it difficult for me to control the wheel. After his visit to urologist for what we suspected to be an enlarged prostate,( at that point he was having frequent visits to the bathroom for his #1) my husband started bleeding and feeling pressure, discomfort and urge to go for #2.. that was March of 2018. We believe because my husband's tumor was low in the rectum, the doctor may have touched the tumor unknowingly while examining his prostate which caused it to bleed. So now bleeding, pain, fever, chills, i rushed my hubby to ER and insisted on andominal CT which revealed the thickened colon wall suggesting malignancy. From there, we were given a referral to GI doctor who then ordered an urgent colonoscopy ( April 2019). Although CT scan showed some enlarged lymph nodes each not exceeding 5mm, the endorectal ultrasound confirmed no lymph node involvement thus staging my husbands cancer as T3, N0, M0.
We were explained by the surgeon and oncologist that my husband's tumor was inflamed which explained the mysterious fever and enlarged lymph nodes. The fever started to subside and eventually went away starting the 3rd week of the chemoradiation.
We are truly thankful to the urologist who decided to examine my husband's prostate. Although he misdiagnosed my husband and prescribed him bunch of medications for what he tought to be an enlarged prostate( CT confirmed normal prostate size), his examining caused the tumor to bleed which finally put us on the right track to my husband's diagnoses.

[Patty17]

I was diagnosed at my first colonoscopy, age 50. My husband was the driving factor for even scheduling the procedure because he needed one also (a bit late for him as he’s a year older than me). We went to the GI doctor together, etc. We even considered doing both of our colonoscopies at the same time and having my 81 year old mother be our “responsible person”. So glad we didn’t end up doing that! More than a bit shocked to have the GI slap my knee in the recovery room and tell me that he was going to get me a good surgeon. (We forgive him the temporary lapse in professionalism because he delivered on the good surgeon promise.). Pathology confirmed cancer. CT showed a few questionable lymph nodes and a pancreatic cyst (subsequent scans and tests puts this on the “watch” list). I learned that my spouse has a tendency to pass out when receiving my “bad” medical news. I tease him that this is just another way to “make it all about him”, bless him.

At diagnosis, I considered myself asymptomatic. A month prior to my colonoscopy, I was on high adventure with my sons’ scout troop. How could I have hiked 30+ miles/5 days with a 55 pound pack and decent sized colon tumor? No clue.

In hindsight, maybe there were mild signs that pointed to colon cancer (unfortunately these symptoms also pointed to a lot of other different things— especially for 50 year old women.). I noticed I leaked urine when working out. I would suffer flushing at night. Maybe there were some bloody stools but infrequent. I’m not even sure I was paying close attention. A few months prior to diagnosis, I do remember being filled with dread but attributed that to the high adventure trip and my fear that I wouldn’t be able to keep up with “the guys”, not carry my fair share of troop gear and die of a heart attack far from emergency response teams. (And on that note, I represented quite well thank you. ). Even though genetic testing was negative, my parents did have polyps and more distant relatives had colon cancer (great aunts, second cousin) so I was told this probably isn’t relevant. Who knows. It has certainly changed the game for my kids/siblings/nieces/nephews.

[Kbelo]

I had very infrequent bleeding over the course of 12-18 months, maybe for a couple days at a time, then nothing for months. I did suffer from bloating about a year before diagnosis, but it has cleared up completely when I switched to a ketogenic diet. My GP felt it was nothing, especially with no family history, but offered to refer me to a general surgeon to discuss and see if a colonoscopy was appropriate. I was awake during the colonoscopy and saw the tumor at the same time the surgeon did. Trippy. T3N1M0 - Stage 3B

Looking back, other symptoms may have been present. I was exercising several times a week and noted I needed to take breaks where before I never needed to. I chalked it up to being 40, being busy with work and kids, and not getting enough rest. I just finished my final round of FOLFIRINOX on January 2nd. Looking forward to building stamina and becoming more active, eager for neuropathy to f*CK off

[Mohrfamily]

I can't remember the exact year but we'll say 5 years ago...
DH had me take him to the ER which freaked me out he would rather wrap a finger in electrical tape that go to the hospital even if it's too sew it back on (seriously what is it with you men lol). Even before that while shopping he mentioned needing to go back home because the blood he found in his underwear made him throw them away...anyway 5 years in the ER...doctor got up close and personal suggested internal hemorrhoids. Referring back to the "if it ain't broke" mentality, my DH went along he'd had issues with them in the past as did his parents. He didn't have a regular family doctor so he never followed up.

January 2018 he was having pain associated every time he had ice cream or large glasses of cold milk, he decided he was becoming lactose intolerant so avoided those things but the pain didn't go away. He got laid off and when he went on my insurance I made clear he was getting a biometric screening and if ANYTHING was off it was to the doctor's office. Everything was bad except his glucose, at the time I joked about at least he wasn't diabetic. His BP, cholesterol , a bunch of enzymes including LDH and liver related ones were skyrocketed. So our CNP suggested a liver ultrasound and on the same day CT scans. His CEA was unreadably high, our nurse said it is/was the highest she'd ever seen in the 30 years as a nurse. (Above 10,000 now 79)

To this day we don't know how many leisons cover his liver is always described as innumerable. His colonoscopy and medi port on the same day (24hours later he started chemo) they found the mass in the splenic flexure of the sigmoid colon and removed 2 polyps.

DH has responded well to treatment his largest liver lesion was 6x6 and is down in the 3s I believe. We tried Cleveland Clinic and didn't like the lack of hope/morale now dealing with Memorial Sloan Kettering of NY and after 1 visit DH feels better being there than CC which makes me feel better.

Good luck and keepingg you and everyone here in my prayers!

[Jolene]

Thanks all for responding ! I'm surprised how quite a number of us have been brushed off as hemorrhoids case !!

I'm also particularly intrigued by the prior symptoms before seeing blood - digestion problems, stomach pains, breathlessness and exhaustion etc... !

In hindsight, I do regret ignoring some of those symptoms otherwise I could have probably be staged at T2 instead of T3N1 !

I guessed my biggest regret was ignoring a patch of fresh red blood(without stool) on the toilet paper 3-4 months before the bloody stool. Oh well !!! I guessed the lesson learnt is unexpected blood from any bodily crevices just isn't good news and needs to be checked immediately !

I'm still awaiting for more T1 or T2 staging to respond as I'm really curious how did it lead to a check up with such early staging !

[Lee]

I had no real symptoms other than bleeding hemorrhoids that my PCP confirmed. No blood in the stools, not even close to being anemic. My PCP figured those bleeding hemorrhoids were going to be my excuse for getting my baseline early in life (age46). I truly believe that referral probably saved my life. I was diagnosed stage IIIC rectal cancer.

My signature line tells the rest of the story.

Lee

[weisssoccermom]

I had vague symptoms when I was diagnosed. No blood ....FOBT was negative. My main issues were : extreme fatigue which my then GP kept chalking up to a low thyroid. I was already on thyroid meds and those levels were fine. I now know that I was anemic a good 1+ years before my colonoscopy but that GP did NOTHING to further investigate. She kept telling me that my low hemoglobin levels (hovered around 9...low normal is around 12) were due to my heavy periods. I also had a very low total cholesterol (92) which apparently is another sign that something is amiss in the GI tract. No blood, every once in a blue moon some diarrhea (nothing out of the ordinary) but fairly bad constipation. Looking back on it now, the anemia, low cholesterol and the constipation were all signs that something wasn't right. I switched GP's....my new one (the one I have had now for over 12 years) sent me to a GI who I didn't like. She felt that I had hemorrhoids.....said that they were likely left over from pregnancy. At the time, my youngest was 15. Seriously, left over from a 15 year old pregnancy? I finally got up the courage to see a female surgeon to have the hemorrhoids banded and it was then that the surgeon saw the tumor and knew it wasn't a hemorrhoid. Got in with a different GI....had the scope and woke up to find out I had cancer. Other than vague symptoms......none of the commonly thought of symptoms like rectal bleeding, stomach issues, weight loss, etc.