Patient Wisdom

Patient Wisdom

Question 22A: Did you have any symptoms that were overlooked or misdiagnosed? 


Factoid:  Go into your doctor’s appointment armed with knowledge of the accepted screening recommendations. Read the National Comprehensive Cancer Network’s newly updated Clinical Practice Guidelines for Familial High Risk Gastrointestinal Cancer.

I had tons of symptoms that were able to rationalize/justify as being something else. Severe halitosis, transient osteomas, fixed osteoma, mis-formed teeth, diarrhea, constipation, rectal bleeding, nausea and vomiting, dark stools, a protruding anal polyp... to name a few. But with no family history, who is going to explore a child’s rectum/bowels? - Betty Starr


I’ve had menstrual issues for a long time. It was just chalked up to other problems until eventually I got a biopsy and was diagnosed with uterine cancer. This was found to be a lynch positive cancer, so I got a colonoscopy and that's when I found out that I also have colon cancer. - Emily Wilson


At the onset I had severe anemia which was put off to female issues. If I had not pushed for a colonoscopy as a preventive measure I may still not know I have FAP...chances are they would of found out too late. - Michelle Sutter


When first had symptoms my only symptom was stomach pain. My pcp repeatedly refused referral to specialist and ignored family history and stated I was a whiny child with low threshold of pain. At hospital, stomach pain was ignored with same explanations and after returning to ER again it was discovered my bowel had looped around other organs. - Jenny Jones Bay


I was left with out follow up for 6 years and after i had surgery to remove my entire colon etc. removed and when i elected to have surgery for a internal continent ileostomy this was then highlighted to me, i was unaware that i needed further follow up. - Claire McIntosh


I had rectal bleeding from a 2 cm rectal polyp and my doctor just assumed I had hemorrhoids, even though he knew my father had recently died from hereditary rectal cancer not too long before that. - Tiffany Probus


Pretty much all of the non-fatal, extra-colonic manifestations of F.A.P. I had a sebaceous cyst on my forehead that was constantly written off as no big deal, osteomas, anemia, diarrhea, bloody stool, and extra teeth which were also dismissed as just a bizarre occurrence. My keloids were also considered unrelated to my predisposition for desmoids. - Dakota


I spent multiple thousands on dental work that was fruitless. I was told I would never have colon cancer as I was so careful to be screened and polyps did not develop fast enough so I would be safe. I had skin lesions and jaw tumors that were from FAP and not diagnosed. I had the eye color that is a dead giveaway and no one connected it. - Sandra Redlands


I had blood in my stool about 4-5 years ago. My PCP said it was just something I ate or drank. - Whitley Buckles


My daughter had thyroid cancer that the doctors in our city could not diagnose, that led us to a second opinion at the cancer facility 90 min away. My son had a disease related emergency and we couldn't get to our doctor so we had to go to a local ER, where the doc would not trust my info which caused a 12 hour delay that almost cost him his life. - Suzanne Pilon


Question 22B: What were the signs and symptoms that finally led to your diagnosis?


My several year long increased bathroom frequency and anemia from my bleeding colon finally caught up with me and landed me in the ER. Initially my G.I. doctor associated the positive hemoccult test with celiac's but, my ER stint led to an expedited colonoscopy which revealed pretty instantly that wasn't the case! - Dakota


My polyp was so large that I had frequent diarrhea. I would have initially thought it was stress as there is no family history of colon problems. My primary finally recommended I see a GI doctor. - Brooke Porretti


Blood in stool. I had really bad back pain that I was admitted to the hospital for. After a scope in the hospital they found the colon cancer. - Tami Arnold


Ultimately it was the loss of around 20kg in weight, when I was not dieting or eating less. - Malcolm Scott


Anemia was first. 1st set of blood work after they finally believed me that something was wrong showed 17 out of 32 items being tested as abnormal. In this day and age often times I see doctors saying it's anxiety and stress related and, they forget that some of us do really know our bodies and know when something is truly wrong. - Michelle Sutter


Lipomas, large head, and PTEN blood test. - Kris Yokley


Bleeding, mucosal stool, blockage. - Samuel Duckworth


Severe nausea and pain in middle lower abdomen. Cat scan showed nothing as the tumour was in the caecum so the Dr's did an exploratory operation due to my having previously had cancer. - Karen


Irregular menstrual bleeding and pain. - Emily Wilson


They found hundreds of polyps in my colon and then had no choice but to listen. - Hayley Richards


I had chronic hematochezia (blood in stool) on regular basis, and often soft stool. - Janet Weistock


200+ colonic polyps at age 24 pretty much seals the deal! - Ed Minor


Blood in stool. - Anonymous


Alternating diarrhea and constipation, pain, bloody bowels. - Anonymous


I thought I just had more ovarian I had in the past...I knew it wasn't my appendix, that had come out 2 years before. Luckily, I went to the ER and they ordered an MRI which showed a huge mass in my colon. It was pressing on an ovary which caused the pain. I'm glad that had been there a while. - Lara Breunig


Discovery of scores of adenomas throughout my whole colon and rectum upon initial colonoscopy screening at age 50. GI doc was unable to manage after 3 "scopes" in 4 months so referred for genetic testing (negative for APC, then positive for biallelic MYH mutations). Once diagnosed, prior symptoms of tumors in mouth [and] skin anomalies fit the pattern. - Anonymous


A colonoscopy. I had one regularly every 5 yrs. The one at 68 was the reason I had immediate genetic testing. - Sandra Redlands


Blood in my stool and diarrhea, [I] ended up going to a GI doctor. - Whitley Buckles


My daughters rare thyroid cancer that they only see in people with FAP. - Suzanne Pilon

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