Thank you, @ams5796, I am already there. 
I more recently found Colontown on FB which I find even more helpful.
Congratulations on your successful treatment!
Wow. Congratulations to all of you who have had colon cancer and been successfully treated.
Iām having my fifth colonoscopy on August 6. I had polyps on my first one (and maybe another one; I donāt remember) which has necessitated every-five-year testing. Iām almost 70, so Iām hoping that after this one, maybe Iāll only need one more.
A girl can hope, canāt she? 
Yes, there are a bunch on FB that Iām part of. The community has a great group of very supportive folks. If I can be of any help to you please let me know. Unfortunately, I have lots of experience in this.
I think everyone should make the choices they are most comfortable with, but this logic doesnāt make a lot of sense to me, given the extreme ease & low cost of the FITā¦
This article says that about 5% of FIT tests result in false-positives- https://www.consumerreports.org/colonoscopy/at-home-colon-cancer-tests/
To me that means, if 100 people who donāt have cancer opt for colonoscopy, that is 100 colonoscopies for people who donāt have cancer.
If 100 people who donāt have cancer take the FIT test, and 5% result in false positives, that is 5 colonoscopies for people who donāt have cancer.
I did a lot of research and opted for the FIT test and have done it every year, results are negative each time. Iād note that I do not have risk factors and have made lifestyle choices that reduce overall risk as well.
Iād add that, especially after reading the post from @Consolation ā I would be somewhat concerned about a once-in-ten-years screening schedule. That may work out well for most on a statistical basisā¦ but not so great for the person who shows up with cancer in year #8.
Hereās another good article - http://www.berkeleywellness.com/self-care/preventive-care/article/good-fit-colorectal-cancer-screening ā and a quote from that article, āThe idea that a colonoscopy done every 10 years is safe may not be true if you are unlucky enough to develop a fast-growing right-sided colon cancer.ā
So maybe some people who opt for colonoscopy and are told to come back in 10 years might do well to ask for and take the FIT test in the interim. I donāt know if insurance would pay for their FIT test, but the test is so cheap that it doesnāt really matter.
I realize that there are still some advantages to colonoscopy and my personal decision might be different if my risk profile was different. For example, because of my low-cancer risk profile, I have also opted to participate in a large-scale study related to frequency of mammograms, following a biennial rather than annual schedule. This has nothing to do with fear or reluctance to get mammogramsā¦ just felt that it made sense to help the people running the study get their data. (Plus participating in the study also included genetic testing at no cost to me).
@collage1 I suggest making your appointment for 11am so that the prep is split between the evening before and the next morning. My Dr just does miralax mixed with Gatorade. (Donāt refrigerate the Gatoradeāgives you the chills.)
As far as the liquid diet, I find that jello makes you feel like you got to eat something. Use sugared stuff, not diet.
I have gotten one every other year for about 10 years, now I am annually. I have colitis, so high risk for cancer. So far so good.
If 100 people who do have cancer take the FIT test, only 79 will be diagnosed, according to the Consumer Reports article.
Whatās the success rate for colonoscopy?
https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/colorectal-cancer-screening2 Is the USPSTF summary about colorectal cancer screening, including discussion of the various methods.
According to the figure there, colonoscopy every ten years avoids 24 colorectal cancer deaths per 1,000 screened, versus 22 for FIT every year (with colonoscopy followup if FIT detects blood). However, colonoscopy every ten years results in harms to 15 per 1,000 screened, versus 10 for FIT every year, due to the higher expected number of colonoscopies when that is used as the primary screening method (colonoscopy is invasive and has some medical risks).
You have to factor in the frequency of testing. That is ā accepting those numbers for the moment, and simplifying the math* ā the first year I had a FIT test, there was a 21% chance that I could have had cancer that was missed. But the chances of missing it 2 years in a row is only 4% and the chances of missing it 3 years in a row is less than 1%. (If my back-of-napkin statistical assumptions are wrong, I apologize-- pay attention to the logic of my argument rather than my math ā the point is that with each repetition, the odds of the same error recurring with the same person get reduced).
I would agree that FIT once every 10 years would be idiotic - and I donāt think anyone would be eager to sign up for colonoscopy on an annual basis.
The big problem with FIT is that some people will get it once and then procrastinate/avoid and let half a dozen years go by before the next one. The test is really easy to complete but it does have an ick factor that probably is a deterrent to some.
Make sure to ask your doctors if they did MSI (microsatellite instability) testing on your tumors. This gives valuable treatment information and is probably discussed in the FB groupās discussions. Glad the FOLFOX is well tolerated.
@busyparent, I have had extensive genetic testing on both the tumor and me. Everything that can be known at this point is known. And yes, it was MSI-h, dMMR and a level of mutation Dana Farber described as higher than 96% of the samples they have studied. On the positive side, this makes the likelihood that I would respond well to Keytruda very high, should I have to go there. Also on the positive side, it is sporadic and I donāt have Lynch Syndrome, which was a major concern. Another plus as far as Iām concerned is that it indicates FOLFOX rather than FOLFIRI. Iām hoping to keep most of my hair!
Iām one of those people who gravitates towards research. I only wish that my education in biology hadnāt been so lacking.
There are times when a virtual colonoscopy is better choice.
A few years ago I had a virtual colonoscopy which was clear. (The downside, is that if they find any polyps or oddities you have to do the prep again to have a real colonoscopy to remove the polyps. The upside is that you get a good look at the entire lower abdomen.) Iām going to have a regular colonoscopy next month because my brother had colon cancer diagnosed recently, and the suggestion is that with that family history a virtual colonoscopy is no longer the best option.
My husband elected to have a regular colonoscopy that same year. They removed a couple of benign polyps.
Fast forward to last fall when my husband got a CT of his abdomen for an entirely unrelated minor issue. An incidental finding on that CT scan lead to an eventual diagnosis of appendix cancer. It formed on the exterior of the appendix and spread topically across the surfaces of the abdominal cavity.
There was no sign of it on the colonoscopy because that only looks at the interior. Even the peek into the appendix during the colonoscopy showed nothing. A repeat colonoscopy prior to surgery showed a clean, healthy colon and appendix interior.
His cancer was low grade and slow spreading. There is no way of telling how long it had been there, as it is a mucinous adenocarcinoma - spreads topically, creating mucus, without symptoms. It is usually found very late, when the weight of the mucus it creates eventually causes a bowel collapse. There is a good chance that it would have been found earlier if he had chosen the virtual colonoscopy in 2014.
He was extremely lucky that it was found when it was. The cytoreductive surgery was heinous. 12 hours, followed by HIPEC snd EPIC and 25 days in the hospital. After he recovered he had six cycles of adjuvant FOLFOX.
The surgeon removed all visible signs of cancer. The prognosis for long term survival is related mostly to the ability to remove the visible cancer during surgery, so we are cautiously hopeful.
Anyway, the virtual colonoscopy can find some things that a colonoscopy will miss. But for heavens sake, the prep for a colonoscopy or virtual colonoscopy is a laughably minor inconvenience, in the big picture of life.
Oops, I wrote the wrong year of my virtual and my husbandās regular colonoscopies . It was 2012. The results of a virtual one are good for 5 years. Last year I used the FIT, and next month Iāll have a regular colonoscopy.
However, note that virtual colonoscopy and other imaging with radiation can themselves increase cancer risk.
Also, incidental findings can be either advantageous (finding things that are necessary to treat) or disadvantageous (finding things that result in additional treatment that turns out to be unnecessary and expensive): https://sciencebasedmedicine.org/virtual-colonoscopy-can-be-hazardous-to-your-health/
@ucbalumnus, the last thing people need to hear is reasons NOT not be screened. Yes, all screens have plusses and minuses. The FIT test, for example, will only find blood if a tumor or polyp happens to be bleeding at that time. Very often they donāt. The sigmoidoscope is useless in finding right side tumors like mine, but the prep is the same, so why bother?
What would you rather have: a false positive, or stage 4 cancer? Iās take the false positive any day.
People need to realize that no test or screen is 100% accurate, and that risk/benefit decisions still need to be made at every step. The doctor cited in the horror story COULD have chosen to watch and wait and see if the masses discovered in his lung, for example, changed. I have a single tiny 2mm āindeterminateā node in one lung, found by my recent thoracic scan. I may have had it for years. It is too small to show up on an x-ray. MANY people have benign nodes and lesions in their lungs, their liver, etc. Responsible oncologists and surgeons donāt rush to remove them without trying to figure out what they are, and how best to deal with them, which takes time.
My surgeon found a tiny subcapsular spot on my liver by physically examining it, and he removed a little block of my liver containing it for biopsy because that is where CRC likes to go: pathology revealed a met. He told us that often people have multiple such things, and unless there is good reason to be suspicious he canāt just remove them because many will be benign and the risk to the patient outweighs the benefit. It didnāt show up on the pre-surgical CT scan with IV contrast. At all. If I had had laparoscopic surgery, he wouldnāt have found it. Yet people frequently tout robotic surgery because the recovery is easier. Personally, Iād rather have a damned good, experienced surgeon take a good, hands-on look around while they are in there. My H made the same choice when he had prostate cancer: an experienced surgeon can FEEL the edge of the invisible prostate tumor with his or her finger, not so a robotic surgeon.
Nothing is certain. There are always trade-offs. You have to educate yourself and find good doctors who treat you like an intelligent adult. And be lucky.
Golly gee, thanks for pointing that out, @ucbalumnus. Super helpful response. Just wanted to share that a virtual scan several years ago would have, perhaps, caught his cancer earlier than stage 4, which is what we are dealing with now.
Thank you all . I got through my exam this week. I challenge those who characterized sureprep as āstale grape juiceā. All I tasted was overwhelming salt. Gagged but didnāt throw up. Spent the night feeling like I was in the original Alien movie and some new life form was about to sprout from my belly. I was more distended than at 8 months with my first.
Actually test went fine.
And thank you for @Consolation and others for sharing your journeys. You have convinced me to do it again next time.
@eastcoastcrazy Iām confused, how would the virtual colonoscopy have found the tumour sooner? Itās also fully internl, right?
A virtual colonoscopy (which is essentially a CT scan) provides a secondary benefit of revealing diseases or abnormalities OUTSIDE the colon.
My husbandās cancer is a mucinous adenocarcinoma originating from the appendix. It is a very rare cancer. The best case scenario with this particular cancer would be if it was contained INSIDE the appendix, fills the appendix, causes appendicitis, and is removed when the appendix is removed. Worst case is when it forms on the EXTERIOR of the appendix, and spreads across the surfaces of the abdomen, usually following the motion of the digesting intestines. It creates mucus. The cancer lies within cysts in the mucus, not the mucus itself. It spreads without causing symptoms until very late, sometimes after many years, when the weight of the mucus sitting on top of abdominal organs, causes an emergency. Usually the emergency is something like an intestinal blockage. In my husbandās case, the cancer traveled across the abdomen and settled on/in his spleen. He had a CT scan for something completely unrelated that showed a very large cystic spleen. There was cancer on other places within the abdomen, but all of it was able to be removed during a cytoreductive surgery. His cancer was ālow gradeā which meant it was slow growing. His surgery was done at the medical center that pioneered the procedure, by a surgical oncologist who trained under the pioneering surgeon.
He had two regular colonoscopies. One, in 2012 and one after the cancer had been found, but proir to the cytoreductive surgery to remove it. Both of those colonoscopies took a peek into the appendix. It was clean and healthy. It (and the interior of the colon and small intestine) also showed no signs of cancer when it, along with part of his colon and small intestine, were removed and sent to pathology.
He also lost his spleen, gall bladder and peritoneum
.
You can google cytoreductive surgery. The goal is to remove all visible signs of cancer, which they were able to do in his case. HIPEC chemo (heated chemo) was then inserted into the abdominal cavity at the end of surgery, and left in to coat the surfaces for 90 minutes after they closed. He also had several days of EPIC chemo in the ICU in the days immediately post surgery, and six cycles of systemic FOLFOX this spring after he had recovered from surgery.
Wow, @eastcoascrazy , that is one Iād never heard of. What an incredible surgery!
Best wishes to your H for continued health.