New here and a tad worried....

[PepperBaby]

Hello all,

I'm a 52 year old female with no family history except my paternal grandmother passing from colon cancer at 80 years old. I don't know if there is any other family history because I don't know any other family from either side.

I began experiencing bloody stools about 7 years ago but chalked it up to an internal hemorrhoid I'd had since the late 90's. It never bothered me enough to worry about getting it looked at. A couple of years ago I began to notice I had blood in my stool every time I went, not just when the hemorrhoid flared up. Then about this time last year I began passing a lot more blood, blood clots, tiny bits of bloody tissue and mucus. I would bleed through my jeans at times. In June I told my Gyn about all this and she went into a panic, told me I was experiencing currant jelly stool and referred me to a colorectal/general surgeon for a colonoscopy. I met with him in July and we set a date for a colonoscopy, August 10th.

That was when I began really looking back and admitted I did have other symptoms. I had been having more and more frequent issues with bowel movements. I was once very regular with no issues at all but began noticing changes a couple of years ago. The odor had changed drastically and for about the last six months before my colonoscopy I had a lot of trouble with very sudden urges and cramping. I was nervous to leave the house at times because of the suddenness. I would also go from very loose to very constipated all the time. I never knew what to expect almost daily. I had also had bad bloating for about 2 years.

I awoke from my procedure on August 10th with my doc telling me it was a good thing I had come to see him. He had found multiple polyps and two were large. He removed four. I had my lab results a week later. One small (.5 cm) Tubular adenoma in the cecum. One small (.3 cm) tubular adenoma in the ascending colon and two large ( largest 3cm) in the sigmoid colon. The two largest were removed piecemeal with results of the fragments showing tubulovillous and villoglandular with high grade dysplasia in some fragments. I'm not really happy with the quality of this lab report. There's very little detail.

My doc stated I am now considered at high risk for colon cancer and he's performing a second colonoscopy next week. Just three months since the first. From the reading I've done the typical procedure is repeat in 6 - 12 months?? So, I'm wondering why again so soon. What will he be looking for? I didn't ask any questions at my first follow up with him. I didn't know what to ask. I wish I had asked how it's possible for the polyps to cause so much bleeding and clots. I would sometimes pass just mucus too.

At the end of July I had purchased a 23andMe kit for myself for my birthday. I had always wanted to do that. I tested positive for one of the two variants they test for MUTYH. From what I've read that means I'm just a carrier but I'm wondering if this warrants a closer look??

The bleeding has stopped completely since the removal of the polyps and my digestive issues are better. The bloating is gone as well. I guess I'm hoping that with the absence of my symptoms that means something positive. Should I still be concerned though?

Thank you for reading!

[roadrunner]

Concerned? No. You appear to have won the lottery by getting in right before cancer took over. Your doctor is being careful (another win). He likely wants to be sure he’s not missing anything. I would go in and get the scope with a lot of gratitude and peace of mind. If he finds anything concerning, it appears likely to be very early. You and he are doing the right thing: Stay the course.

[Edited to add: Forgot to say—If you remain uneasy, just call his office, tell them you’re happy to do it (whether you are or not ; ) and ask them for the reason for the quick scan. He may also be wanting to make sure he didn’t leave any pre-cancerous tissue in there (given the fragmentation). He may also be looking for IBD changes. But you can just ask.]

[PepperBaby]

Thank you Roadrunner! I feel much better after reading your response. I haven’t been sure about the info I’ve come across during my research so I wasn’t sure if I’m good to go or still not out of the woods. You’ve made my day!

P.S. To the member who sent me the message with links, thank you. The links must be older though. I couldn’t get any of them to open but thank you still.

[utahgal7]

I agree with roadrunner. Don't be shy to ask your provider direct questions regarding timing of another colonoscopy. Open and honest communication with your health care provider may alleviate some of your anxieties.


Paige

[zephyr]

I agree with what has been written, but I would like to insert the strongest possible recommendation that you continue to be vigilant ... not obsessive, not freaked, but responsibly vigilant. He's likely taking tissue to see if there's any more dysplasia that was missed the first time. You may need to go in more than once over the next few months before everything's clean and clear. I think your doctor will likely recommend regular colonoscopies more often that might seem normal for the next several years. You got lucky this time. I was once in your shoes - including the high-grade dysplasia - and had a recurrence 8 years later.

[PepperBaby]

I agree with roadrunner. Don't be shy to ask your provider direct questions regarding timing of another colonoscopy. Open and honest communication with your health care provider may alleviate some of your anxieties.


Paige

Thank you Paige. I see him next week. I'll have a lot more questions for him this time around.

[PepperBaby]

I agree with what has been written, but I would like to insert the strongest possible recommendation that you continue to be vigilant ... not obsessive, not freaked, but responsibly vigilant. He's likely taking tissue to see if there's any more dysplasia that was missed the first time. You may need to go in more than once over the next few months before everything's clean and clear. I think your doctor will likely recommend regular colonoscopies more often that might seem normal for the next several years. You got lucky this time. I was once in your shoes - including the high-grade dysplasia - and had a recurrence 8 years later.

This is the kind of info I'm looking for, thank you! Am I understanding your signature? You went from all clear to stage 4 in two years? I'm reading it takes around 10 years for cancer to develop in the colon but it sounds like CC is like everything else. Highly individual? Can you tell me how often you were having your checks? And did you have any symptoms? I hope these questions are ok with you.

[PepperBaby]

Posting mainly for any other newbies who may be at the very beginning stages of this journey. I’m hoping for a positive outcome when all is said and done.

I had my 3 month surveillance colonoscopy yesterday and two more polyps were found. One 2 mm and the second 10 mm adjacent to the tattoo from the first colonoscopy. Very close to where the two large polyps were removed in August. Both in the sigmoid colon. I don’t know yet if this 10 mm was missed the first time around or if it’s new, although from what I’ve read polyps don’t grow to that size in just three months. This does have me wondering about my MUTYH result with 23andMe.

The site where the 25-30 mm dysplastic polyp was removed in August was noted to be abnormal with residual polyp. Xrays of the location of the clip that was placed after the removal of the 10 mm was removed yesterday were taken immediately after the colonoscopy. I’m assuming for a further future procedure to remove the tissue left behind from the first scope.

I go in to see my doc next week on Thursday to find out the results of the pathology report and to find out what the next step is. Hoping for good news with the pathology report.

[zephyr]

This is the kind of info I'm looking for, thank you! Am I understanding your signature? You went from all clear to stage 4 in two years? I'm reading it takes around 10 years for cancer to develop in the colon but it sounds like CC is like everything else. Highly individual? Can you tell me how often you were having your checks? And did you have any symptoms? I hope these questions are ok with you.

Yes, questions are ok. Sorry for the delay in responding; I didn't notice the message notification. I went from clear to Stage IV in 3 years, but that's a little misleading. I was originally diagnosed with early-stage CRC in 2009. The cancer was removed with clean margins, but there was high-grade dysplasia all around the area. Rather than have a colon resection at that time, I opted for follow-up procedures to scrape away tissue until there was no more dysplasia detected. That took 3 procedures over 3 months. Once everything was clear, I had follow-up colonoscopies at 6 months, then another 6 months, then 1 year, then another 1 year, then 2 years. That took me to the 5-year mark, and everything was good, so we assumed I was safe. The next colonoscopy was scheduled for 3 years later. That was when I went from clear to Stage 4. About a month before the 3-year colonoscopy, I had started to notice red streaks but I thought it was from the beets in my salads. Even if it was something more, I was already scheduled for the colonoscopy so I figured I would find out soon enough. Other than that, I never had any symptoms during the 8-year process.

[PepperBaby]

This is the kind of info I'm looking for, thank you! Am I understanding your signature? You went from all clear to stage 4 in two years? I'm reading it takes around 10 years for cancer to develop in the colon but it sounds like CC is like everything else. Highly individual? Can you tell me how often you were having your checks? And did you have any symptoms? I hope these questions are ok with you.

Yes, questions are ok. Sorry for the delay in responding; I didn't notice the message notification. I went from clear to Stage IV in 3 years, but that's a little misleading. I was originally diagnosed with early-stage CRC in 2009. The cancer was removed with clean margins, but there was high-grade dysplasia all around the area. Rather than have a colon resection at that time, I opted for follow-up procedures to scrape away tissue until there was no more dysplasia detected. That took 3 procedures over 3 months. Once everything was clear, I had follow-up colonoscopies at 6 months, then another 6 months, then 1 year, then another 1 year, then 2 years. That took me to the 5-year mark, and everything was good, so we assumed I was safe. The next colonoscopy was scheduled for 3 years later. That was when I went from clear to Stage 4. About a month before the 3-year colonoscopy, I had started to notice red streaks but I thought it was from the beets in my salads. Even if it was something more, I was already scheduled for the colonoscopy so I figured I would find out soon enough. Other than that, I never had any symptoms during the 8-year process.

Thank you for this Zephyr. Your situation is one that I’m going to remember for the cautionary aspect. I got my results Thursday and I’m going to be ok for now. I somehow keep winning the lottery!

There was a 15 mm tumor found right next to my tattoo on the 14th. It turned out to be a rare colonic hemangioma that developed after my big adenoma was removed in August. My doc had thought it was another adenoma and had been very concerned so we were all smiles when he was going over the pathology report with me. The relief was tremendous! He did find another smaller tubular adenoma on the 14th though. ☹️

I am under close surveillance for the rest of my life. He doesn’t think I’ll ever make it past having follow ups every three years. Because I’m a polyp maker five years will be too long for me. Your story is going to stay with me so thank you, from the bottom of my heart, for sharing it. Your story is proof that vigilance will now need to be a normal part of my life.