Heart issues, positive FIT screening test, any experience of colonoscopy procedure.

[Chinkoflight]

Hi, I'm a new member with a specific question. I have a range of heart issues, an implanted defibrillator, heart medication including Edoxaban anticoagulant, atorvastatin and bisoprolol. I have also had my gallbladder removed. Last week I tested positive on the bowel screening test (England) and have been called in for pre colonoscopy chat in 10 days with an advisory note a colonoscopy will be done subject to the 'chat' within a further two weeks.I have a further complication in that this has come just as I am about to move home with a moving date around 22 November.

Any advice based on recent experience please?

As an aside I note the very limited research around the use of antiplatelet and anticoagulant medication on the test outcome results with one small Norway study saying it does throw up different probabilities. However, if advised to have the colonoscopy I will likely take that advice.

As a further aside my wife is a bowel cancer survivor so I have some knowledge of bowel cancer. When I knew nothing I asked the Consultant surgeon for my wife whether there was any likelihood because of lifestyle that I could also get bowel cancer. He responded, 'a million to one, no.' I hope he's right! The screening leaflet suggests 1/10.

I like asides so here's another one, all the health issues I have had have been symptomless before the event and this is no different.

[GCCA-Survivor Administrator]

Hi Chinkoflight,

Thanks for posting with us. So, the positive test was blood in the stool. It’s always critical to find the reason. I am on Xarelto blood thinners and get an annual colonoscopy. I just stop Xarelto 2 days prior to the procedure and go right back on it after the procedure. I have never had any issues with doing that. I am 62. I’ve never been advised to not do this becayse I'm on blood thinners. I have a hereditary cancer called Lynch Syndrome. The annual colonoscopy is part of my surveillance.

It is awesome that your wife is a bowel cancer survivor. If you are worried about getting cancer, your wife must not be hereditary, and her cause was somatic. If there is no family history in your family, then you’re in the mainstream pool of probability. Lifestyle and environment can play a role. Gut health is always a contributor.

This is interesting … cancerresearchuk.org/about-...

Also, are you symptomless if you tested positive on a bowel screening test? Why did you get the test? It is possible to test positive and not see any symptoms. Usually there is some indicator / metric ignored. I had some symptoms that I didn’t realize were symptoms. The colonoscopy is the gold standard to finding polyps and GI tract issues. 👍

I do wish you the best. Please keep us up to speed on what you find out and how the “pre colonoscopy chat” goes.

Thank you

Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

[Chinkoflight in reply to GCCA-Survivor]

Hi and thanks for the very helpful reply. The various 'blood thinners' have not been tested for their impact on GI bleeding, but a Norwegian study looked at positive FIT test outcome variations for people on heart/blood medications and found lower levels of cancer and adenomas in their test sample group . That's not to say the medications were generating false positives in the FIT test. More research needed.I had my gallbladder removed and it's possible that some symptoms I put down to this can be ticked off for cancer too, but I'm not getting ahead of myself.

My wife was very lucky to have access to a consultant who had just relocated from an eminent research team. She collapsed with advanced stage 3 that had got into adjacent lymph nodes. So to be here 11 years in is testament to the care.

I think my pre procedure discussion will be interesting. I'm picking up that the risk aversion of the practitioners sometimes dictates the procedure, with some teams suggesting that the ICD should be switched off as well as desisting from meds. Whilst others only require to stop Edoxaban on the day of procedure because of its short half life!

I'll write a follow up.

Thank you again.

[GCCA-Survivor Administrator in reply to Chinkoflight]

A positive FIT could be the result of many different things besides cancer. Blood in the stool needs a definitive answer either by physical exam, colonoscopy or endoscopy. Not sure if blood thinners would only be affecting the colon or preventing cancer if it were playing a role in the FIT test. But, I hope it is doing that as I’m on Xarelto for life.

I’m glad your wife had good care. 11 years is a great mile marker. I certainly had good care as well. I’m 12 years from diagnosis and 7 years NED. I do see cancer patients dealing bad diagnoses and slow responding health systems. Where you live shouldn’t decide if you can survive a cancer diagnosis. There’s a lot of work to do in that area.👍

Good luck with the pre procedure discussions.

[Chinkoflight in reply to GCCA-Survivor]

Hi, my appointment outcome was 1 to stop anticoagulant three days before the procedure

2 a cardiologist/EP will be present and the ICD will be switched off during the procedure

3 reduced choice of appointment because of the above.

4 everything else standard, I declined the option for an intravenous sedative.

I was surprised to be told that if anything serious is found ie cancer, I will be kept in for further investigations on the day. This wasn't in any advisory leaflets.

I am in the Eastern area and could not get an appointment within the 14 days at my local hospital, so took the first available appointment in 12 days at the nearest alternative hospital.

Hope this helps in terms of your advisory role.

Cheers #chinkoflight

[GCCA-Survivor Administrator in reply to Chinkoflight]

Let us know what you find out👍💪💪👍

[Chinkoflight in reply to GCCA-Survivor]

Hi again. I had the colonoscopy this morning. As advised, Edoxaban anticoagulant were stopped for three days, the usual fasting and gut cleansing protocols were followed. On the day the team were already briefed and an EP was on call to switch off my ICD during the procedure. Staff were advised on VT protocols etc and my heart was monitored with a three lead monitor throughout. It was clear to me that IV sedative was the norm and refusing sedative was unusual. However I still had a cannula fitted as their plan B was the possible use of sedatives. I did have gas and air available which I used briefly as the endoscope negotiated a corner although the discomfort and momentary pain was bearable. All other discomfort was bearable without any pain management.Having watched some YouTube videos on procedures I was able to correctly identify a small polyp, a larger adenoma and a diverticulum. The polyp was simply excised with the wire loop. The adenoma tissue area was then injected multiple times around the site with a dye which also made the area swell with the adenoma 'on top'. They then looped a slightly wider area and cut it off. They then clipped the wound with two staples to stop bleeding which was effective. The adenoma was measured at 12 mm which I believe is classified as large although in the context of my colon didn't look that large. No description was offered, I have to wait for three weeks for biopsies but it looked like a villous adenoma to me.

I was given leaflets and brief dietary advice for the diverticulitis, there were several 'pockets'.

I think it was good to avoid sedatives and to be aware and informed about the procedure. I feel a lot better this side of it, than going in to the procedure. If the news has been thoroughly bad news I would have wanted to see it for myself.

The nature and size of the adenoma means I will require a follow up colonoscopy in three years and this advisory will be sent to my GP to manage. I quite like the certainty of an appointment made three years in advance!!!

Finally, you can't go anywhere these days without a customer experience form to fill in. The final question was would you recommend their endoscopy unit to friends or relatives. I couldn't stop my hand from writing " Like going to Pizza Hut".😂

I hope this helps your advisory and support role which you do brilliantly well. Feel free to use this example if it helps anyone in the future. I will report any biopsy feedback.

Thanks for your support it helped enormously to focus on the day and to ensure everyone was joined up in advance of the day.

Kind regards

Nigel

[GCCA-Survivor Administrator in reply to Chinkoflight]

Nigel 👏👏👏. Wow. I need to find a way to be a part of the colonoscopy / endoscopy process. My first one in 2012 when I had a massive tumor I tried no anesthesia and that didn’t last long😂. Maybe they can make me a little loopy and aware 🤔

You are all over this and it is quite inspirational to myself and others as well. It’s amazing how these procedures have advanced in their capabilities to take care of business in the present procedure and not have to wait to get things done later. Do you know if they were using any AI learning during the procedure?

Thanks for sharing your journey through this.👍👏💪❤️ I’ll definitely be referencing it👍.

Tom

[Chinkoflight in reply to GCCA-Survivor]

No AI as far as I'm aware , but funnily I had that thought as I was viewing the screen. I was surprised that the procedure was being done by a consultant, as I believe practitioner nurses can do colonoscopy procedures.

[Chinkoflight in reply to Chinkoflight]

Good news, no cancer seen in histology. Thanks again for the support.

[anxiety80]

hi I I hope you’re doing well I had bleeding and fit test came back 400 I was so scared I had colonoscopy which was painless totally painless and thank god if there is one it was colitis still not great but better than you know what. All the best hope this helps love from here x

[Chinkoflight in reply to anxiety80]

Thanks for the reply. I've had a journey where I keep ending up in the unusual, exceptional box. I've ridden this in as upbeat a way as possible, and managed to keep hold of my generally good health. I get the ' gosh you wouldn't know by looking at you..' comments. But this latest, bang on time curveball, to be added to the pot has strangely hit me hard and I've been catastrophising the possible outcomes. I do know the realities and hopefully I will feel a little more balanced within the next three weeks. And as I write the radio has just used bowel cancer screening as an example of gloom! My response is to laugh not cry, so I think my initial panic is waning. I hope you're journey is positive. Take care.