Large Complex Polyps and Lynch Syndrome

Hi Sabine 

I'm glad that you found the online community so helpful last time you were here but sorry that you have the need to visit again.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

Sabine, I think it may depend on the position of the polyp. Some polyps can be removed by colonoscopy, some need specialist endoscopists and some require surgery-but I think that's quite rare.

My brother has had tons of polyps removed at several colonoscopies! (none of them cancerous)- they will almost certainly be able to do this that way, I'd think, but sometimes they do need to go into the colonoscopy session knowing that's exactly what they're there to do and with someone who is experienced at doing it.

I hope they can get you in much sooner. With Lynch syndrome and your family history, it really should be a priority.  You need to "go to the head of the line". 

Hi Sabine,

I think I am in a similar situation, my first colonoscopy found a Paris lla type v polyp in my heptic flexure. It is a flat type, I had 2 small biopsies taken from the centre but he couldn't remove it as it is in a very tight corner and unfortunately the bowel prep didn't work well enough for him to do much. The results came back negative but my Consultant said he wasn't fully confident it is benign.

My 2nd polypectomy was done by my Consultant who probably has more skill for it. I have seen previously for bowel problems. I was in there for an hour and a half while he tried to get it out but he couldn't as he said he hadn't the equipment at this hospital and the main local hospital would be able to do it. He tried using a hot wire like a lasso, but he couldn't get hold of it. He took 11 biopsies, tattoo'd the polyp and added a metal clip so that it would show up on CT scan. I am having the scan next Friday.

When I got home a saw that he had written Family history HNCPP. When I looked it up I found it is Lynch Syndrome. They have assigned me a nurse who I will speak with. I asked her about it and apparently they found this when checking the first biopsy. When she rang on Monday she said I do have cancer .I have been finding information about Lynch Syndrome, the hospital has just added details about it on their website. I think I still have to have a blood test to find out which type it is. My grandfather died very young from cancer and my father had an iliostomy in his early thirties due to ulcerative colitis. As he had his bowel removed early, cancer wasn't going to happen there. 

My consultant said it could be removed with the right equipment, he just didn't have it, although the nurse since told me I will likely need an operation. Mine is in the tight corner at the top RHS, in a tricky position. Hopefully someone skilled will be able to remove your polyp easily for you and that it turns out to be benign but just an awkward one to take out.

Hi Lucy, 

Thanks for your reply and your encouraging info. 

Fingers crossed that I'll get these removed soon by someone experienced. 

Thanks, Susan. Yes, I think so too. I couldn't believe that I may have to wait for months. Fingers crossed my doctor will talk to them. 

Hi Jilly,

I'm so sorry for your diagnosis, and all you've been through. I hope they will be able to remove the polyp successfully this time. It does sound you might need an operation, but the main thing is that they will remove it. Best not to worry about it. 

Yes, they will determine from the blood test which type of LS you have. Mine is MSH6. The old name for Lynch Syndrome is HNCPP. The good thing about having Lynch is that you will get regular testing, which puts you in a better position to catch any nasties early. My genetic counselor advised me to do it. I would never have gone for a colonoscopy otherwise. The polyps would have grown and turned cancerous much quicker. As yet, I haven't had any symptoms of anything wrong, so was quite shocked to hear I have complex and advanced polyps. I will hopefully get them out soon. Thanks for sharing your story. Please let us know how you get on.  Good luck to you. 

Thank you for your reply Sabine. I have to say that appts for each thing has been within 2 weeks so far. The NHS do seem keen to treat Lynch syndrome patients quickly so I hope you manage to get an appt sooner than they say.

My Consultant is the head gastro surgeon and in his letter he said he would have liked to do the 2nd colonoscopy for me but someone else would be able to do it straightaway and he didn't want to delay it by waiting for him.

When I got to the hospital they said he would be doing it himself which I was really pleased about. It could be the case with you that it is a matter of waiting for the right person but, if they cannot do it immediately I wondered if you could ask about another hospital? If that is possible it would save you the worry of the wait. 

This is my 12th polyp, they found the others when looking at my diverticular disease and were able to remove them all then from my sigmoid, they were all benign.

As I'd had a bowel abcess before they haven't been able to get past the sigmoid with a scope as I had a narrowing due to scar tissue. If I hadn't had another bout of diverticulitis and bleeding I wouldn't have had the colonoscopy but my bowel has improved since then. The 1st colonoscopy was done with a child's scope because of previous problems, thankfully the 2nd was with an adult scope and I guess with more appropriate equipment for removal too. I had never had the right side checked at all before so I don't know how long the polyp had been there. 

Good luck to you too Sabine, I hope you are able to get an earlier appt soon, keep chasing them