I have had IBS for decades so thought I had just been having a bad flare up of that for the past month. Stools were very dark but no visible red blood. I took a home FIT test one day to make myself feel better (it didn’t) and it quickly came up positive. Hoping it was faulty test, I repeated the next day (had bought a 3 pack) and it was also quickly positive. I used the 3rd test a week later and it was negative and just did another today and negative. In the midst of all of this, I did go to a gastroenterologist. I could only get in with a nurse practioner, but it allowed me to get endoscopy and colonoscopy scheduled.
I told her history of IBS, positive home FIT test and have lost 10 lbs in 6 months (now weigh only 105 at 5’7”) and she scheduled me like 5 weeks out (appt August 7). I did try calling other Dr. offices but they were booked so far out for the initial consultation that it wouldn’t have helped. Is this the normal procedure? I thought healthcare in US was supposedly better than in UK but I see a positive FIT there gets them scheduled urgently within 2 weeks?!
I have anxiety when everything is going fine so this has really ramped it up which, of course, is making my symptoms worse. I have 14 year old twin sons and keep panicking that I won’t be there for them. I am 54, no family history (that I know of) of cancer but my mom has ulcerative colitis since she was young and she has polyps removed at her frequent colonoscopies. I had a colonoscopy around 22 years ago. That’s when IBS was diagnosed. One benign polyp was removed and I was told to return in 10 years. I didn’t 🙁. I was in the thick of it with having toddlers but I have no justifiable excuse for having not gotten it done more recently. I did cologuard 2 1/2 years ago and it was negative. I don’t know how much consolation I can take from that.
Would it be common in colon cancer for a FIT test to only be positive some of the time? And, if yes, how can it be regarded as something helpful to do once a year? If I had done one test (like most people) this week it would have been negative. While I dread the prep and tests, at this point I’m more scared of the results than anything else and kicking myself for not going back for one sooner.
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Everlong2789
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Thanks! I’m also going to call the place I am scheduled with tomorrow and ask if they can move it any sooner if I use a different Dr at their practice. I think since a used a home FIT test and had the negative cologuard 2 1/2 years ago, they aren’t prioritizing me. They did run a CBC panel because apparently, if those numbers were off, it has to be done at the hospital instead of their outpatient facility but things like iron came back at the lowest end of normal.
Location has a lot to do with getting procedures scheduled. Insurance even more so. I had state insurance and was scheduled 4 months out for a colonoscopy and I have/had a visible tumor on a CT Scan at that time. This will be my second colonoscopy. The first one I had was scheduled three days after seeing the doc. I paid cash upfront.
I do know it helps if you call your insurance medical proxy person. Call your insurance company and they will give you a representative for your health care. That person can help get things rolling along faster.
I am not an advocate for lying, however sometimes a little lie that hurts no-one may be warranted.
If you are having painful bowel movements or having issues going, let the doctors know. That will move things faster for you.
Those home tests aren't very accurate. They test for blood in the stool. A negative test is awesome. Praying that all of them come back that way for you .
Don't be scared and you will be here for your twins no matter what the results are. I know the anxiety you are going through sucks, it can be managed by spending time with your family and doing other things that help keep you occupied and keep your mind thinking about something else. Do something that involves having to think. People say get a hobby. Nope, you can paint, put together puzzles or whatever. Doesn't work. If you can't occupy the brain you will be think of your issue. So do something that requires thinking. I started leaning ethical hacking/coding. I have stage three colon cancer.
I wish you the best of luck and pray for your mind to think happy thoughts while waiting.
Great info here. Thanks for contributing. I do hate to hear you have stage 3 colon cancer. I would love to hear how you are doing, symptoms leading into the diagnosis and treatment path. Every cancer journey is unique.
When I found out I had cancer, I had to focus on things I could control. I like how you put it .. "occupy the brain." I actually put a face on cancer and made it the opponent to defeat. I saw it as a game or match I had to play and had to win. When there was pain I would go for a walk. Cancer owned the pain, I owned the walk. I would focus on doing things cancer was trying to stop me from doing. It definitely occupied my brain. Cycling was a big measure for me. Hydration, nutrition, faith, attitude and physical fitness. I had to focus on being the best patient I could be as my body was the playing field. So far I am winning. It wasn't always that way until a clinical trial with an immunotherapy drug found me. It was a game changer.
I hope you are winning as well. Once you get cancer, there will be a new norm to life. I am currently NED and hope to stay that way. I hope you are on your way the goal of being NED as well.
Thanks so much for your reply and understanding. It takes someone with a huge heart to try to comfort someone in fear of getting diagnosed when you are actually in the battle yourself. There are many amazing people on here. I love you idea for coding/ethical hacking. I’m a dog person and have 3 dogs so have been doing things with them but it does still leave me too much free headspace to worry and obsess at the same time.
So, the crazy thing is I have excellent insurance (that we pay a lot for). We have a considerable deductible but it’s been met this year. The nurse I saw seemed to think it best to schedule as screening procedure (even though I told her about the 2 positive home tests, symptoms and weight loss)….and I look fairly skeletal at this point so you would think it would have raised some alarms. I called this morning to see if there were cancellations. There were not but they said I could call up to 3 times a day to check. Apparently, I can’t just switch to a different Dr at their practice that might have sooner availability and am now locked in with the Dr whose nurse I had the consult with. And, of course, I blame myself for this mess because I had literally decades to get this done, but procrastinated and here I am frustrated that I can’t get in sooner.
I could self order some tests from the lab like CEA, calprotectin and the lab FIT test. Maybe if something there came back positive they would prioritize me? I think she wasn’t putting much stock in an Amazon ordered FIT test and she was putting too much confidence in the negative cologuard I did almost 3 years ago.
I mean my hope would be that all on any tests I order would be negative (in which case I’d still get the colposcopy/endoscopy done) but might help quell my anxiety some. Of course, it’s possible something could come back elevated and they still won’t move me up and then I’ll be in an even worse state of panic.
I just had to reread something you wrote. They scheduled you out 4 months after seeing a tumor on CT scan?! That is quite horrifying. Are you in the US?
Update: After calling and talking with the nurse and telling her I have lost a significant amount of weight, have symptoms (that I assumed were IBS), had the positive FIT test, and have major anxiety that was going into overdrive while waiting, they put me on a cancellation list and I now have colonoscopy and endoscopy scheduled tomorrow. I’d be lying if I didn’t say I felt terrified. I’m not one of those people who thinks “oh, cancer could never happen to me.” I know all too well that it can happen to absolutely anyone and certainly to people even younger than my 54 years. I have done multiple FIT tests since those initial 2 that were quickly positive on 2 consecutive days (without visible blood) and all the others I’ve done have been negative. I also did one where you send a card off to a lab and that came back negative. In my mind, if cancerous or non cancerous polyps only bleed sporadically (if at all), how is doing one of these FIT tests once a year as recommended even useful at all? I am wondering if anyone knows if the Dr will give me a general sense of if any polyps he removes are concerning or if I will have to wait until biopsy result?
Great news👏👏. Please let us know how the experience goes👍❤️. I'm glad you were persistent on getting things done. Why they didn't put you on a waiting list day #1 is strange and concerning. But you made it happen. You should get some kind of report of the findings and whether a pathology report is in your future.
If you are finding polyps bleeding or not, your surveillance shouldn't be a FIT test especially with all the negative results to them. They are not telling you the story. I get an annual colonoscopy and CT scan. I don't do FIT tests. Blood in the stool wasn't a symptom I had to deal with.
I had the tests yesterday and was able to breathe a sigh of relief…although I took that breath with some feelings of guilt and sadness as I just wish no one received a terrible result. The findings were a polyp in stomach (sent for biopsy but seemed not concerning), GERD and an irregular z line in esophagus so biopsy sent to rule out Barret’s esophagus and internal hemmroids and biopsy sent to rule out h pylori. I am to follow up with nurse and go back for repeat colonscopy in 5 years. This time, I will go back. I appreciated the help of this group.
Oh, and for anyone who happens to see this post in future, don’t stress over colonoscopy procedure. The procedure itself was easy with the sedation. I only remember falling asleep as the anesthesiologist counted down from 5 then waking up!
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Update on colonoscopy 
>400 ug Hb/g FIT test result
FIT and Feacal Calprotectin
Heart issues, positive FIT screening test, any experience of colonoscopy procedure.
>200 fit test
