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What's your colorectal cancer screening story?

Posted by @colleenyoung, Mar 1, 2017

Today, March 1, 2017 kicks off another Colorectal Cancer awareness month. This year’s campaign has a targeted goal to get 80% of Americans screened for colorectal cancer by 2018 (#80by2018). I know you all know how important screening is. How do we tell others?

Here’s a special page that we have on Connect to help promote colorectal cancer screening. Please share it widely http://mayocl.in/2mwrYEa

Join us for a live tour inside a colon here on Connect at 10:30 a.m. CT (11:30 a.m. ET) today.
– “Tour of the Strollin’ Colon with Dr. David Etzioni” http://mayocl.in/2mtgHrf

What’s your colorectal cancer screening story?

REPLY

The year I turned 50, 2003, I had my first screening colonoscopy. My paternal grandmother died of colon cancer at the age of 72 years, so I was relieved when the results were normal. Later that same year I was diagnosed with Stage 1B Endometrial Adenocarcinoma. I had a total abdominal hysterectomy and that was the only treatment I required.
Early in 2006 I started noticing blood IN my stools. I am an RN, so in describing my stool I was careful to point out to my primary physician and Gynecological Oncologist that the blood was IN my stool. They were quick to point out that I had a normal colonoscopy less than three years ago.
I was persistent and in September I demanded a referral to a Colorectal Surgeon. Again I carefully and accurately described my stools, but upon initial examination the surgeon found hemorrhoids that she banded and declared that would take care of my symptoms. When I returned to her 6 weeks later for a follow-up visit I explained that I was still having blood IN my stools. She said that some bleeding would still be normal after the hemorrhoidectomy.
By now the holidays were upon us, so I decided to put my pursuit of a colonoscopy on hold until the first of the year. I contacted the colorectal surgeon and set up an appointment. Since my words seemed insufficient, I took a photograph of my stool, printed the photo on my home printer and took the photo with me to the appointment. I handed the photo to the colorectal surgeon and said, “This is what I have been trying to tell you since September.” She took one look at the photo, and said, “We need to do a colonoscopy!”. Eureka!
She biopsied a growth that came back as Adenocarcinoma. On Valentine’s Day 2007, 11 months after my first symptoms, I had a laparoscopic colon resection for Stage 1 Recto-Sigmoid Adenocarcinoma. Fortunately, despite the delay in diagnosis and treatment, surgery was the only treatment I required.
I am now 10 years cancer free. The example I hope to share is that each person must be their own advocate and use whatever means necessary to have your voice heard.

I had my first colonoscopy at age 40. My father was diagnosed at age 50 with Stage 4 colorectal cancer. He had a large tumor removed and he had a colostomy.Chemo and radiation ravaged his body. Sadly, he passed away before his 52nd birthday as the cancer metastasized throughout his body. My mother also had colo.rectal cancer which was caught at its earliest stages. I eat a high fiber diet rich in fruits and vegies, keep a healthy weight and exercise as much as I can. Early detection is key. I urge everyone to get scoped

My colorectal cancer story focuses on my wife’s family. Her brother has had a colostomy for 20 years. Her uncle died of it. Fortunately, she has not been exposed to it; her exams have been essentially unremarkable. In my case, I’m past the age of consent! None of my 10 siblings or 25 cousins has been beset by the disease. Lacking symptoms, I no longer am asked to submit to colonoscopy. I think I have had three of them — the last about 7 years ago. Even so, like @ sandytoes, my diet, weight, and exercise are helping to keep the cancer away (I hope).

@lamerex4

The year I turned 50, 2003, I had my first screening colonoscopy. My paternal grandmother died of colon cancer at the age of 72 years, so I was relieved when the results were normal. Later that same year I was diagnosed with Stage 1B Endometrial Adenocarcinoma. I had a total abdominal hysterectomy and that was the only treatment I required.
Early in 2006 I started noticing blood IN my stools. I am an RN, so in describing my stool I was careful to point out to my primary physician and Gynecological Oncologist that the blood was IN my stool. They were quick to point out that I had a normal colonoscopy less than three years ago.
I was persistent and in September I demanded a referral to a Colorectal Surgeon. Again I carefully and accurately described my stools, but upon initial examination the surgeon found hemorrhoids that she banded and declared that would take care of my symptoms. When I returned to her 6 weeks later for a follow-up visit I explained that I was still having blood IN my stools. She said that some bleeding would still be normal after the hemorrhoidectomy.
By now the holidays were upon us, so I decided to put my pursuit of a colonoscopy on hold until the first of the year. I contacted the colorectal surgeon and set up an appointment. Since my words seemed insufficient, I took a photograph of my stool, printed the photo on my home printer and took the photo with me to the appointment. I handed the photo to the colorectal surgeon and said, “This is what I have been trying to tell you since September.” She took one look at the photo, and said, “We need to do a colonoscopy!”. Eureka!
She biopsied a growth that came back as Adenocarcinoma. On Valentine’s Day 2007, 11 months after my first symptoms, I had a laparoscopic colon resection for Stage 1 Recto-Sigmoid Adenocarcinoma. Fortunately, despite the delay in diagnosis and treatment, surgery was the only treatment I required.
I am now 10 years cancer free. The example I hope to share is that each person must be their own advocate and use whatever means necessary to have your voice heard.

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So glad that you persisted @lamerex4 and that you are here to tell us about it.

My story is similar to @sandtoes14’s. My dad had colon cancer, however in his 70s. He knew something wasn’t right but didn’t want to go to the doctors. He was first diagnosed at stage 3c, but it came back 3 years later. I had my first colonoscopy in my 40s because of the familial risk. While the first colonoscopy was all clear, the second one 3 years later they found a polyps that was pre-cancerous, albeit the flat, nasty kind. You can bet that I will continue with regular colonoscopies. Colon cancer is one of the few cancers we can stop in its tracks.

My story is pretty simple. Had my first one in my mid 40s at Mayo Clinic in Rochester and not sure why buy I have been the training patient for whatever ails me when visiting the hospital or the doctors. I had several trainees in the room with the guru watching how they insert/move the scope…only one of the trainees had a problem getting the scope through a bend and the expert jumped in and showed them how to do it. The second one I had in my 50s and it was easy peasy and I’m thinking because of the improvements in the technology used. I could relate the process like a highly efficient assembly line with the patients lined up on a bench in the hallway and moving down the bench a foot at time…or was that a behind at the time. Sorry, it was funny at the time! It really is important to have this done. I have always come back with a NTF report which is a good thing.

I am in Australia and we also have a big media drive on Colorectal screening. I turned 60 last Dec (2016), and hadn’t done one of the do-it-yourself screening tests that the Govt send out at various intervals depending on your age.
I had already decided that I was going to do the test this year, not because of any family connection ( as I am adopted I don’t know anything about any family history on anything), but I just had a feeling inside that I should do it.

However when the free screening pack arrived in the mail I wasn’t able to do it as I had had a big change in bowel habits and my stools had become so difficult to do plus when I did eventually manage to go with copious amounts of natural laxatives, my stools were so tiny and ribbon like ( or looked like tiny thin short sausages-sorry for the vivid descriptions!), that I was unable to do it as the paper you place on top of the water in the toilet just Went straight to underwater the minute these weird stools hit the plastic backed paper.

A short amount of time passed ( a month or two at most), and by now I was also finding it difficult to pass urine!?

BTW, I also have end stage Emphysema and it takes about 1/2 hour of pushing until I feel like I’m going to black out and so little strength to push even the tiniest ones out and also have to literally bend in every direction possible on the toilet to do even a tiny amount of either stools or urine!

I had already made an appointment with a surgeon hoping to get a Colonoscopy after one day deciding to cover my fingers with an enema type gel ‘liquid’ (as I was absolutely certain I could feel this aweful weight bearing down so strongly on me as if I had half passed a stool and it was stuck half in /out.
With a sense of disgust yet desperation I did it and omg, I felt this horrid lump the size of a tennis ball coming from the right side of my rectum and pushing its way across my rectum!
No wonder I was feeling what I was, and doing stools the size and shape they were!

When my appointment day finally arrived the Surgeon asked me about my symptoms then proceeded to basically try and do what I had done but because he couldn’t get far enough in he came to the conclusion that I must be packed with stools and gave me the same medicine they give you to drink as they do to clean you out before having a colonoscopy and told me to return in another 2 weeks!

I did as asked, however by now this already heavy lump felt even heavier ( even after my ‘clean out’, plus when I tried to feel it again I could only get in as far as halfway up my index finger nail!!

I returned for my 2nd appointment and he asked me “Did it do it’s job?”. ‘Yes( I said), but then I found myself straight back to square one straight away!”

Again he said ” Let me feel what’s going on!), in a rather exhausperated manner and when he did begin to feel it I nearly cried out with pain (which ISN’T ME!), and kept telling him how much pain he was causing me and begging him to stop!!
He continued without a word and eventually stopped when he felt like he was done whilst I was left in tears and agonising pain. The worst pain 2nd only to actually giving birth to each of my 5 children!

This time, instead of doing what I had expected, (ie: organising a Coloniscopy and biopsy), he sent me for a CT Scan and some blood tests…?
I asked him what he had felt inside me. I He said that I had a large mass BUT HE WOULDN’T BE TREATING IT!!???
I was absolutely shocked, still in horrendous pain, and asked him with tears in my eyes why he wouldn’t treat it. (Oh, he also spoke as if it was a forgone conclusion that it was definitely a cancerous mass!)

As to the reason why he wouldn’t treat the mass, he made a sweeping gesture of his arm ( I had my portable oxygen on), towards me and then almost indignantly and very coldly said, “Well look at the state of you!”

By then I was extremely upset, in crazy pain and ANGRY, , so I said “Oh, so because I’m already dying of Emphysema I’m just not worth treating then huh??!
Because I’m going to die anyway why waste your time and Govt money on alleviating my Cancer, yes??!”
He calmly and definitively said, “Well, basically YES, that’s exactly why!!”

My GP has since received the results of my blood test which she hadn’t yet read so read whilst I was there and gasped and said, “Oh no Miranda you have stage 3 KIDNEY DISEASE!!!”
I said, What??? THIS on top of whatever the mass is??? She was flabbergasted and just couldn’t believe how I had been treated by the Surgeon, and said This is so so wrong Miranda!! … Well, I just wanted to say “DUH!” Lol but she was only expressing her own shock, but hearing her say the obvious like that tempted me ALMOST too much! Lol..

This Friday ( It’s now Thursday), I have to go back to this ‘wonderful’ surgeon for the results of the scan, but what I find strange is that the results were already complete and had been sent to my yet to be seen Palliative Care Doctor…? Oh well.
I had already made my first appointment with her a little while ago but March 17th was the earliest time I could get,but after calling them with all the latest ‘news!’ they are going to try and fit me in as quickly as possible somehow.

Soo ( my sincere apologies for the length of this post!!), at this point in time I have to wait another couple of days to see this Surgeon (with the worst bedside manner I’ve come across), for my results, for which he says he is not going to treat anyway!

That’s my (very long:/), story, but from my heart I’m asking EVERYONE WHO HASN’T ALREADY DONE SO TO PLEASE PLEASE GET TESTED AS EARLY AS YOU POSSIBLY CAN and CONTINUE to GET TESTED IF YOU VALUE YOUR LIFE EVEN THE TINIEST BIT!!
Love and understanding,
Miranda ❤️

My first screening test was last year when I went to internal medicine clinic at Mayo. The doctor told me about cologuard. It was supposed to be way easier because you only needed one stool sample and you’re done for three years. So I eventually got a box in the mail. There were directions for putting something over toilet seat to catch the poop. Then you take a little spoon from the kit and put some poop in a container with screw on lid. Then you pour a bottle of liquid onto the poop and screw lid on. Then there were a couple small containers for more sample. Then you put everything back in the box and take to the UPS store. It’s postage prepaid to return to lab. Then I got letter from mayo doctor that test was negative. There was confusion as to whether test was eligible for insurance. At first we got denial letter from insurance company because cologuard was experimental so not covered. Something like that. Months later we got check in mail for $649 from insurance company saying test is covered but provider lab is non-network. So pay them directly with this money. I did tell mayo doctor that we got paid but didn’t get bill from anyone including Mayo. Could not believe there’s no bill. Then finally I googled “cologuard” and found out its from Exact Science in Madison, Wisconsin. So I called them to say we got money from Blue Cross Minnesota for test but we didn’t get bill. So finally after trying to explain that we got money but no bill, Exact Science finally sent bill for $649 for cologuard test. Then we paid it with the $649 we got from Blue Cross. It was kind of confusing dealing with bill but I’m glad I’m screened for three years. I was candidate because no colon cancer in family tree. It’s not supposed to be for high risk patients with colon cancer history in family or self. I plan to keep doing Cologuard every three years. I won’t do colonoscopy unless Cologuard test comes back positive. Too much trouble to do colonoscopy for me because already have to do mammogram, lipid panel, and a1c test. I have limits. Plus I’m following healthy living program for nutrition and exercise and resilience. I get most benefit from Healthy Living concepts. I think people need to individualize medical care based on oneself- your conditions, time, money etc. That’s what I’m doing and I’m healthier than ever.

My first screening was at the age of 45 as there was a family history of colon cancer and I was a believer in preventive medicine. They found a polyp
Which turned out to be benign . I had another a year later followed by the 3 year point and was on a 5 year routine colonoscopy schedule as nothing had been found after that initial
Benign polyp. Long story short I was diagnosed in January of 2015 with stage 4 colon cancer. It was unbelievable but true. Seems my cancer was located at the very end of the colon in the cecum and was most likely missed . So word to the wise make sure there is a picture attached to the report documenting that the end of the colon had been reached. Sorry to say they could not produce a picture to support this in my prior colonscopy

I was having constapation issues. Didn’t think much of it. I’m 46yrs old and no history of colon cancer (so I thought). Went in for a colonoscopy and the very next day the doctor called and said I had a large bloody mass that was cancer. That was a little over three weeks ago. Since then I have had appointments everyday for tests, doctor appointments and two surgeries. I start chemo and radiation next week. Terrified doesn’t even describe how I feel.

@mouselife

I was having constapation issues. Didn’t think much of it. I’m 46yrs old and no history of colon cancer (so I thought). Went in for a colonoscopy and the very next day the doctor called and said I had a large bloody mass that was cancer. That was a little over three weeks ago. Since then I have had appointments everyday for tests, doctor appointments and two surgeries. I start chemo and radiation next week. Terrified doesn’t even describe how I feel.

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Hi @mouselife , welcome to Connect.
I wish the circumstances that brought you to the community we’re different, but I’m happy that you found us. I invite you to join others living with colorectal cancer in this discussion thread:

* Living with colorectal cancer – Meet others & come say hi https://connect.mayoclinic.org/discussion/living-with-colorectal-cancer-meet-others-come-say-hi/

Tell us more about your diagnosis and the treatments you’ll be getting. We’re hear to listen and share information about what you might expect.

For 2018, we created 31 video for the 31 days of March about screening, prevention, colorectal cancer diagnosis, treatment, and more. Check it out. https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/colorectal-cancer/

I travel around the world often. It was on one those journeys I contacted H-Pylori. I swore I had been poisoned, and having a heart attack all at once. Just about everything I ate something it burned my throat clear down to my stomach. I couldn't get out of bed in the morning, without the stabbing dagger type chest pains i was experiencing, along with my throat burning,

I went to my local emergency room. They couldn't tell what what was wrong, I needed an Upper Gi.. All the tests they did were negative and normal. X-rays, Ultrasound, blood work, they checked my urine, all tests were normal.

Two days later I get into a GI's office. He orders for me the 2 for 1 special. Endoscope and Colonoscopy. Tests come back I have H-Pylori and a pre-cancerous Ulcer in my Cecum area of the colon. This GI Dr. refers me to a second GI specialist ,who was to remove the Polyp. he attempted an EMR procedure. He couldn't remove the polyp. He assured me this a pre-cancerous, and I should have it removed in the next 2 years. (If I would of taken his 2 yr advice I would be writing a different story) He refers me to a surgeon.

Now I still felt horrible sick. I knew something just wasn't right. I asked all three Dr's including the local surgeon, to order me a CT Scan. They all refused. Said my condition was pre-cancerous, and they wouldn't order a CT scan cause I had nothing wrong with me.

Both local GI Dr's swore they were referring me to the top surgeon in the county. I meet the surgeon. In his office. he goes over two types of surgeries that I could have. One being, just to remove the Cecum (which is like him doing a appendix operation) or I might want to consider him removing 6 inches of my colon, along with a few Lymph nodes. You know just in case it came back cancerous. Pretty much his own words..

Let's just say, I didn't like what he told me. My Mom trusted a 2 Dr's and she was dead at 59. She had Endometriosis. Her Path report stated,right on it, further investigation needed to rule out Cancer. She trusted the DR let him give her a hysterectomy and ( I get sick to my stomach even typing this still after 16 yrs). Trusting that Dr killed her. I was only 53 yrs old, and I surely didn't want to die like she did.

It was her voice that popped into my head to call the Mayo Clinic. I had been researching different options to remove pre-cancerous polyps in a Cecum no less.. This was hard to find since Cecum Cancer in the Colon accounts for less than 15% of all Colon Cancers. There was a good chance, it wasn't cancer Correct? What were the Odds? I had a 85% chance I didn't have cancer. Those are pretty darn good odds in my books. I placed some casino bets, with lesser odds and won. Many times too.

I get my appointment at Mayo Clinic in Jacksonville Dec 16, 2015 . My 3rd GI option Dr. He performs the same 2 tests as the prior Dr's did. A Biopsy of the Ulcer in the Cecum reveals it is Cancerous. Stage 1 Adenocarcinoma. Well next step was a CT Scan. The Ct Scan showed I had several swollen Lymph nodes around my Aorta. My Colo-rectal surgeon then ordered CT Guided Biopsy of the Lymph nodes in my chest.

This sounds insane but I Prayed for Two Cancers instead of one Cecum cancer that Metastatic. You don't survive a stage 4 Cecum Cancer. Your lucky if you get 2 years. My Sick Wish came true. I was diagnosed with 2 Primary Cancer about a week a part . Cecum Cancer stage 1 and Follicular Lymphoma stage 3.

I still freak out everyday it has been over 2 years. I try to keep myself as busy as possible. Even though my Hematology Dr says I'm doing fine. My Colo-rectal surgeon says I'm doing fine.

It's the fear factor that I have, knowing I have DOUBLE TROUBLE. The fear I will wake up again with severe chest pains, or some other unexplained weird illness. I think rewriting my experience reminds me, that if I want to live a long life. I need to stay healthy, and exercise. The exercise requires motivation there are days that is easier said than done. After I type this I am off to the gym.

Anyway, I hope for people reading this , learn and become persistent with healthcare, seek out other opinions. Do not ignore your symptoms. And Do not trust the first DR you see. Don't be my Mom she did and her trusting nature killed her.

@mirig

I am in Australia and we also have a big media drive on Colorectal screening. I turned 60 last Dec (2016), and hadn’t done one of the do-it-yourself screening tests that the Govt send out at various intervals depending on your age.
I had already decided that I was going to do the test this year, not because of any family connection ( as I am adopted I don’t know anything about any family history on anything), but I just had a feeling inside that I should do it.

However when the free screening pack arrived in the mail I wasn’t able to do it as I had had a big change in bowel habits and my stools had become so difficult to do plus when I did eventually manage to go with copious amounts of natural laxatives, my stools were so tiny and ribbon like ( or looked like tiny thin short sausages-sorry for the vivid descriptions!), that I was unable to do it as the paper you place on top of the water in the toilet just Went straight to underwater the minute these weird stools hit the plastic backed paper.

A short amount of time passed ( a month or two at most), and by now I was also finding it difficult to pass urine!?

BTW, I also have end stage Emphysema and it takes about 1/2 hour of pushing until I feel like I’m going to black out and so little strength to push even the tiniest ones out and also have to literally bend in every direction possible on the toilet to do even a tiny amount of either stools or urine!

I had already made an appointment with a surgeon hoping to get a Colonoscopy after one day deciding to cover my fingers with an enema type gel ‘liquid’ (as I was absolutely certain I could feel this aweful weight bearing down so strongly on me as if I had half passed a stool and it was stuck half in /out.
With a sense of disgust yet desperation I did it and omg, I felt this horrid lump the size of a tennis ball coming from the right side of my rectum and pushing its way across my rectum!
No wonder I was feeling what I was, and doing stools the size and shape they were!

When my appointment day finally arrived the Surgeon asked me about my symptoms then proceeded to basically try and do what I had done but because he couldn’t get far enough in he came to the conclusion that I must be packed with stools and gave me the same medicine they give you to drink as they do to clean you out before having a colonoscopy and told me to return in another 2 weeks!

I did as asked, however by now this already heavy lump felt even heavier ( even after my ‘clean out’, plus when I tried to feel it again I could only get in as far as halfway up my index finger nail!!

I returned for my 2nd appointment and he asked me “Did it do it’s job?”. ‘Yes( I said), but then I found myself straight back to square one straight away!”

Again he said ” Let me feel what’s going on!), in a rather exhausperated manner and when he did begin to feel it I nearly cried out with pain (which ISN’T ME!), and kept telling him how much pain he was causing me and begging him to stop!!
He continued without a word and eventually stopped when he felt like he was done whilst I was left in tears and agonising pain. The worst pain 2nd only to actually giving birth to each of my 5 children!

This time, instead of doing what I had expected, (ie: organising a Coloniscopy and biopsy), he sent me for a CT Scan and some blood tests…?
I asked him what he had felt inside me. I He said that I had a large mass BUT HE WOULDN’T BE TREATING IT!!???
I was absolutely shocked, still in horrendous pain, and asked him with tears in my eyes why he wouldn’t treat it. (Oh, he also spoke as if it was a forgone conclusion that it was definitely a cancerous mass!)

As to the reason why he wouldn’t treat the mass, he made a sweeping gesture of his arm ( I had my portable oxygen on), towards me and then almost indignantly and very coldly said, “Well look at the state of you!”

By then I was extremely upset, in crazy pain and ANGRY, , so I said “Oh, so because I’m already dying of Emphysema I’m just not worth treating then huh??!
Because I’m going to die anyway why waste your time and Govt money on alleviating my Cancer, yes??!”
He calmly and definitively said, “Well, basically YES, that’s exactly why!!”

My GP has since received the results of my blood test which she hadn’t yet read so read whilst I was there and gasped and said, “Oh no Miranda you have stage 3 KIDNEY DISEASE!!!”
I said, What??? THIS on top of whatever the mass is??? She was flabbergasted and just couldn’t believe how I had been treated by the Surgeon, and said This is so so wrong Miranda!! … Well, I just wanted to say “DUH!” Lol but she was only expressing her own shock, but hearing her say the obvious like that tempted me ALMOST too much! Lol..

This Friday ( It’s now Thursday), I have to go back to this ‘wonderful’ surgeon for the results of the scan, but what I find strange is that the results were already complete and had been sent to my yet to be seen Palliative Care Doctor…? Oh well.
I had already made my first appointment with her a little while ago but March 17th was the earliest time I could get,but after calling them with all the latest ‘news!’ they are going to try and fit me in as quickly as possible somehow.

Soo ( my sincere apologies for the length of this post!!), at this point in time I have to wait another couple of days to see this Surgeon (with the worst bedside manner I’ve come across), for my results, for which he says he is not going to treat anyway!

That’s my (very long:/), story, but from my heart I’m asking EVERYONE WHO HASN’T ALREADY DONE SO TO PLEASE PLEASE GET TESTED AS EARLY AS YOU POSSIBLY CAN and CONTINUE to GET TESTED IF YOU VALUE YOUR LIFE EVEN THE TINIEST BIT!!
Love and understanding,
Miranda ❤️

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Wow!! Terriable experience. Never take no for an answer and keep fighting. The quality of your life is of first importance. God bless you.

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