Colon Cancer Stage 4 after clean Colonoscopy

[AMAKillsPeople]

Had a Colonoscopy at age 49 (felt I had some issues with bloating and diarrhea and change in stool shape. Doctor said I was fine, no polops, come back in 10 years. Six years later at age 54 1/2 I have stage 4 Colon Cancer that has spread to liver and lymph nodes. Had other symptoms like night sweats, and body rash. No tests ordered by my doctor. I guess we need to be our own doctor today. Chemo fofox, Avastin 9 treatments, now on 5fu and Avastin. I am doing well, but angry about the care I received from my doctor and not sure if the polop was missed the first time I had the colonoscopy.

[skypup]

This really sucks. You have found a great place here for support and information, but so sorry you find yourself a member of the club nobody wants to join. Did your initial symptoms continue all these years?

I hope you have an oncologist that is more involved and really listens to you.

[cmrl]

]I also feel that my Cancer was missed during a Colonoscopy, but they did find polyps during the first Colonoscopy and told me to return in 5 years. I even went to a Surgeon about a year prior to my dx, thinking I had hemorrhoids because I noticed blood in my stool and was assured it was nothing. I am "lucky" that my Cancer is stage 3. 13 of 29 nodes were positive. I have been very angry with my MD but that gets me nowhere. You're right about needing to be your own MD, which is a scary proposition and doesn't leave much time to enjoy life.
Now of course I'm having difficulty trusting my Oncologist. I enrolled in a study to test the effectiveness of Celocoxib partially because I thought the study would force them to pay closer attention to my case. I'm pretty sure I'm on the placebo though! What caught my attention in your post, besides your delayed dx, was the rash you mentioned. I've had rashes for years and a long time ago a Dermatologist told me that when it got bad enough they'd figure out what it was. The Chemo seemed to help but it's coming back. I will run that by the Oncologist for what it's worth.
I hope you're finally getting some good treatment.

[AMAKillsPeople]

I'm getting very good treatment. And for now it is working. Its been 7+ months since my diagnosis, and I am golfing twice a week on my off week for chemo. But Chemo will be in my life forever.

[JAZZToo]

If your colon cancer has a hereditary component, it is possible that the cancer may have developed in as little as 12 to 18 months and everything was good at your age 49 colonoscopy. For those of us with Lynch syndrome, colonoscopy is recommended every 1 to 2 years because the colon cancer can develop that quickly. I will be at MSKCC May 27 for my annual colonoscopy.

Leslie
Lynch Syndrome
2003. Colon cancer stage 3
1995. Endometrial cancer stage 1

[mymom]

My mother was clean and nine years later stage 4..I wonder if it was missed although the doctor is one of best in area or it had been nine years and it just happened. I think the standard every ten years too long to wait.

[Patience]

MY husband had surgery (no chemo/no radiation) for Stage 1 CC, and all follow up colonoscopies were fine. Over 5+ years later, what comes along but Stage IV (without any recurrence in the colon at all). Go figure.

[jbelle]

I'm so sorry you are going through this, but glad the treatment seems to be working!

I have regular colonoscopies (family history - mum died of bowel cancer at age 46, brother had whole bowel removed because of cancer at age 32).

The doctor that did my last one warned me that a colonoscopy is not 100 percent effective at picking up bowel cancer, and that I need to be aware of that. He recommended that I also get stool tests for blood regularly too.

[lauragb]

I'm very sorry to read your post. I too had a "clean" colonoscopy. Mine was at age 48 and I had been having symptoms, mainly bowel clustering which is a symptom of a rectal tumor. I didn't know it was called that at the time. So move ahead five years during which time, I continued to have symptoms. Once the bleeding got heavy, I went to a colorectal surgeon who found a large tumor on exam and confirmed on a colonoscopy. I was staged at IIIB. So I think mine was missed too. I really trusted that my first colonoscopy was clear so put up with a lot of symptoms thinking "at least it's not cancer".... I was told my issues were probably IBS. I think this happens more often than we'd like to think. We definitely do need to advocate for ourselves. Again, I was disheartened to read your post, very sorry about the Stage 4 status.

Take care.
Laura

[orcasres]

I had my first screening colonoscopy at age 50. My prep was rated "fair" (I have a difficult time cleaning out and it makes it more difficult to see things) and they removed on non-cancerous polyp. At 57 I had a large tumor in my colon and Stage IIA. The interval should really be 5 years when a polyp is found, and it turns out more docs are heading that way. My tumor probably would have been there at 5 years, but much smaller.

Lois

[Peabody5422]

Know what you mean. My gyno kept telling me the mass in the left quad was just scar tissue from all the surgery I have had. Then after scope 2 yrs ago turned into a large mass rectal cancer. Sorta like my severe pain which was dx'd scar tissue - was bilateral golf ball size kidney stones and my other severe pain was gallstones. Passing out with pain before they finally decided there might be something wrong and started testing me. Doctor came is and said, "I didn't know you were hurting that much". You try having golf ball size kidney stones move on both sides!

[nbrandt]

Had a colonoscopy I thought at age 50. No polyps so told see you in 10 years. No symptoms other than low iron tests but attributed to menopause. Affordable Care Act goes into effect and decide to have colonoscopy one year early because I paid for all my Pap and Mammos for five years and under ACA BcBs must cover cancer screenings for women. Lucky lucky lucky, colon cancer in appendix and right colon. Found out BcBS did not cover colonoscopys if no polyps found at age 50 only covered sigmoidoscopy age 50. My surgeon 9 years later said I had CC at age 50 but insurance company would not cover colonoscopy unless symptoms. Not the fault of doctors. One must be your best advocate.

[Marilina24]

My now deceased husband had his 1st colonoscopy and when the doctor came to talk to me, he said Stephen had a poor prep; I asked what do you do when there is a poor prep the doctor replied we clean him out along the way. ( I think today I hear doctors sending the patient home if there is a poor prep). The results of this colonoscopy were inflammation--come back in 10 years. Three years later, my husband had Stage 4 cc, suffered thru 7 1/2 years of surgeries, chemo, radiation, procedures, and finally clinical trials, fighting valiantly until he succumbed. He is gone 2 1/2 years now, and I am still angry. I will always be angry.

Marilina24

[MilwaukeeMal]

Similar story. After ten years of ulcerative colitis, I was having colonoscopies every year. Finally, one was so clean they said come back in two years. That was 52 weeks before a golf ball sized cancer was removed from my colon. Bad luck? I don't know. But happy to be "above the grass" after several more years have come and gone.

[Frenchie's Wife]

I had my first colonoscopy at age 57 and was told I had no pulps. Two years later I was DX stage 4 ! Doctor said it may have been missed because it was flat against the colon wall. It sounded pretty lame but I let it go at that.