Pre-cancerous polyps

[ivana]

Hi everyone,

I am glad to have this group, it will be good to exchange experiences and thoughts around this horrendous health condition.

I am a 34 year old Crohn's patient and have been recently identified with a precancerous 1.2 cm large polyp (the pathology is still pending).

Have you had any experience with this type of polyp? What has your treatment plan/action plan been for it?

Appreciate everyone's thoughts and wishing everyone the very best in dealing with the various issues associated with this disease.

Thanks

Ivana

[Lee]

Hi everyone,

I am a 34 year old Crohn's patient and have been recently identified with a precancerous 1.2 cm large polyp (the pathology is still pending).

Thanks

Ivana

Hi and welcome.

Precancerous means stage O. The best stage to have. My husband had one of those following his 1st scope. Nothing more is required. Because you are 34 with a poylp, I would recommend your next scope in 3 to 5 yrs. Do not go beyond 5 years because of that polyp. Crohn's disease also puts you at a higher risk for colon cancer. Yet ANOTHER reason NOT to go beyond the 5 year mark.

If anything does change, let us know (pathology comes back with something different), butt I think you are OK.

Lee

[ivana]

Thanks much for the quick reply, Lee. I appreciate it.

The Crohns symptoms are so bad that I have been considering the removal of my colon for quite some time now. Now that this type of polyp was found, it solidifies my wish even more. I see you had the colostomy done some time ago. What is life like after it?

I should add that this polyp grew from non existent to 12 mm in less than 3 years, I read that it takes 7-10 years to normally get to this size....

I will post my pathology finding here, it is awful having go wait for it.

If I do decide to keep colon, I will push for annual colonoscopies in order to catch anything as soon as feasible.

It is a relief to have found this group.

Wishing everyone my very best.

[zx10guy]

Actually, precancerous does not have a stage and catching a precancerous polyp is the best situation you can be in. Stage 0 means there are cancer cells present but it hasn't penetrated beyond the mucousal layer. This is referred to as in situ. I was diagnosed with stage 0 appendicial cancer last year when a polyp was found in my appendix.

For both conditions, there is nothing more to do except monitoring and yes, I agree with Lee to make sure a plan is set up for follow up colonoscopies.

[ivana]

Thank you for providing your input, I appreciate everyone's perspective.

[bitchslapped]

Fortunately for me @ age 51, I was symptomatic due to inflamed precancerous polyp along w/benign polyps (sudden onset of abdominal bloating/pain, slight fever, chills, sweating, bloody/mucosal anal discharge...all @ about 11:00 p.m.). I thought: "What was that" Next morning a little more discharge + my DH w/a Cancer dx that same year, made an appt directly w/a gastro doc.

Those findings along w/the fact my mother had colon cancer while in the "over 60 crowd" doc said come back in 5 yrs for followup colonoscopy.
Made it back in for colonoscopy #2 @ year 6 @ which time benign polyps were removed.
Then she said come back in 3 yrs. No polyps @ colonoscopy #3.
She then said come back in 3 yrs...no, make that 5 yrs. If clean @ colonoscopy #4 (next yr) I can go 10 yrs.

I am on a 5/3/5 yr plan, depending. Certainly I could have told her I would be more comfortable coming back in 3 yrs instead of 5 after the last one, but I didn't. The point being that your input will most likely be considered in any followup plan.

So those were the criteria the gastro used for my particular situation. Hope that all makes sense. For you & your condition, age, your schedule w/b more frequent.

Kinda weird for me posting in great detail from my time here on CT as a caregiver. It's just I've never discussed all that about me on here before

Hope it may help someone reading down the line sometime who is symptomatic to get a colonoscopy &/or family history of colon cancer...don't ignore, even if you are asymptomatic. By any measure I am one of the lucky ones.

Best Wishes
BS

[Lee]

The Crohns symptoms are so bad that I have been considering the removal of my colon for quite some time now. Now that this type of polyp was found, it solidifies my wish even more. I see you had the colostomy done some time ago. What is life like after it?
.

Yes I have a permanent colostomy since my 1st surgery to remove my tumor. Because I had rectal cancer I had radiation prior to surgery. Standard care for rectal cancer. Anyway, radiation destroyed most of my rectal muscles and I was tied to the toilet for hours any time I ate. I could not eat anything until I knew I was home for the day. Many times that was not until 3 or 4 in the afternoon. That was over 13 years ago, a lot of improvements since then.

I had 2 choices, one takes muscles from some other part of my body and train them to act like rectal muscles. Goal was to get to 3 BM daily, butt I could be dealing with 10+ BM on a daily bases . Gee I was already there. No life with 2 young children.

Second choice, permanent colostomy. Both my husband & I went to see a wound ostomy nurse (worth there weight in gold) and she talked to us about a colostomy. I knew that day that is what I wanted. It gave me my life back and does not hold me back. I go horseback riding, playing in ocean,etc. Everything I did prior to my diagnoses.

I was few month out from surgery and on a field trip with my son. One of his teacher's was picking my brain on how I could do this field trip. I told her about my bag and that is when she told me about her friend. Friend was 6 months out longer than me, butt friend always needs to know where nearest bathroom was, many days cancels at last minute and could never go on field trip like I was doing due to her bowel issues. She said the difference between her and me is that bag. She said I do believe you made the right decision. She was going to mention the colostomy bag to her friend.

Because it was my decision, it was easy to accept. There is a learning curve those first few months, but again a good ostomy nurse will have the answers that you seek.

There is another site you might want to check out.

https://www.uoaa.org/forum

That site is for people who have colostomy/ileostomy and are friendly just like us. A wealth of information.

All the best,

Lee

[Ron50]

Hi Ivana,
I had a scope in the middle of april. I was dxed with an extremely aggressive stage 3c cancer in Jan 1998. It was removed 6/13 nodes were effected. I have had 11 scopes since then at least half of which produced polyps. Several some as mall as 2mm showed mild displaysia. My last scope was put out to three years and was finally done at 3yrs and six months due to a lenghthy backlog in the public system. They removed 4 polyps the largest was 11mm. Pathology came back as tubular adenomas. They appear to be the least likely to turn quickly . The gi who did the scope had not expected to find any with my level of surveillance . He said I would not go beyond two years in future due to the speed the polyps had grown. Ron.

[ivana]

Thank you everyone for the homes and personal responses, you have no idea how much thus helps. Being my age, I do not know of anyone who is effected by this. My next door neighbor is 89 years old, sweet lady, and she has never heard of colonoscopies - healthy as can be. Go figure. I guess it is true, we all deal with the genes and fate handed to us.

Lee, appreciate your info about colonostomy. It is a scary word but I am looking at it realistically as my perhaps best option.

My great grandmother died of liver cancer due to primary in colon and it was a horrendous ordeal for the entire family.

What are other tests (CT, MRI) you all view as good follow up options to confirm stage of polyp?

Thank you again everyone. I am glad I found you all.

Best wishes

[ivana]

I thought I would post an update based on my phone call with my GI's nurse (he is out on vacation until next week).

Apparently pathology shows extreme inflammation everyone in colon and rectum. I was told 12mm polyp is inflammatory polyp that contains CMV cells. I am having a hard time believing this and will request a second opinion just to be on the safe side.
Does anyone know anything about CMV and correlation with colon/intestinal disease? I had no idea what CMV was up until she said it. I don't display any other symptoms of it and why would they find it in the polyp?

On another interesting note, they lost my stool sample so now I have to go back and redo the sample. I am wondering if they could be wrong with pathology also?

I wish I was medically trained to better understand this entire nightmare, I guess I chose the wrong profession.

I hope everyone is well

[exaussie]

When my daughter was 14 a colonoscopy found a pre cancerous polyp. She is on an every3 year schedule.
My older daughters had polyps and were checked every year for3 years now checked every year.
It's not hard to monitor. They were scoped young due to my son (25) being diagnosed stage 4 and passing 14 months later.

Hope you get relief from symptoms!

[ivana]

Thank you for responding and I am sorry for the loss of your son. This is such a treacherous disease and oftentimes difficult to diagnose early.

I plan on a bi-yearly follow up via colonoscopy. In the mean time , looking for ways to manage symptoms.

Best wishes to everyone