CLL Support Association
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Colonoscopy

I had a colonoscopy five years. Recently I had my annual and my primary physician who also specializes in colonoscopy scheduled me for a colonoscopy for next Friday. I am contemplating rescheduling until early next year. I was diagnosed August 2016 and I am on watch and wait. Do we really have to have a colonoscopy every 5 years?

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First colonoscopy?

They like to do first then follow up with second to compare 5 years later. Any polyps or colon cancer in family?

If not, then third is usually 8-10 years later. I got my first at 50, then 55 then last year when I had stomach issue. But was due anyway since it was my 8th year.

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Thank you

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Colonoscopies are not fun. I had my first at 50 and put my second off for eleven years. I've had to have upper endoscopy more frequent as I've had stomach cancer that metz'ed out. The anxiety and prep are bad, and the procedure is no picnic especially if you have to wait to "find out." But as others have posted, it's better to play safe than have regrets later. There is nothing worse than "I should've."

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I wouldn't put it off.

I had a colonoscopy every 3 years for the past 10 years. The one previous found Stage 1 adenocarcinoma of my colon, and I promptly had a hemicolectomy to remove my right upward bowel and 39 lymphnodes.

Long story short.. the cancer escaped the bowel and is now in my liver and lungs, and is untreatable...

What does the FOBT test indicate?

~chris

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That’s my fear every time I have a test. Unfortunately, there is family history of cancer in my family. I wish you all the best. Thanks for sharing.

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Hi, Angie. The general guidelines for colonoscopies, as I'm sure you know, are to have the first by age 50 and, pending no findings and no other risk factors, one might wait up to ten years for a second (I give the citation for this, below). You do, however, have another risk factor: CLL. You can find another discussion on here about the risk of secondary cancers. I give that link, below, as well. Although I took the "con" side of the "argument," it seems the experts are saying that those of us with CLL should, at a minimum, be screened for all cancers (e.g. colon, skin, breast, prostate) *at least* as frequently as per recommended guidelines. Therefore, it's no surprise that your doc suggested a five-year interval instead of a ten. I'm like Chris. I get mine every three years for several reasons: Both of my parents died from cancer (breast and prostate), I have CLL, and my gastroenterologist had to remove a few polyps during my first colonoscopy when I was 45 (the age at which those with risk factors should consider getting their first).

As you know, the good thing these days is that these cancers, when caught early, are very treatable. The more warped among us--counting myself in this--actually enjoy the process! It's a good clean and I like the sedation!

Here's the link to the discussion on secondary cancers:

healthunlocked.com/cllsuppo...

Here's the link with recommendations for screening:

stopcoloncancernow.com/spre...

Glenn

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Hi Glenn- I appreciate the information. I will have it done. I also have a strong history of various family cancers.

Best,

Angie

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I am so sorry about your parents. May they Rest In Peace🙏. My sister passed away from Breast cancer and my younger sister had Hodgkin disease.

Thanks

Angus

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Thank you, Angus. Peaceful rest to your sister. Is your younger sister still with us?

Glenn

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Thanks Glenn- yes my younger sister is still with us! 😇

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Good news, Angus!

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Thank you! 😊

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eww, warped. hah. I hate the cleanout, but probably for different reasons. And I certainly don't remember the sedation (versed will do that to me, lol.)

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Wow, Chris, I'm very sorry to hear that! Was anything found in your nodes? (I would guess not, if you were Stage 1). Did you have any treatment at that time? How unlucky to have it spread from Stage 1!!! Life sure isn't fair! My sympathies are with you.

Sharon

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Chris, I'm so sorry to read about this additional issue you are facing down. All the best to you, my friend. Can they at least keep the damn colon cancer at bay? Hold it off some?

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No...we tried that... got a lung full of fungus and a bowel full of Cdiff bacteria. We learned that using extremely toxic chemo immunotherapy while treating CLL with Zydelig (idelalisib) and rituxan, is not a great idea... 🙄

We are treating the fungus, because it flowers and spores go to the brain... often a cause of death...

Invasive aspergillosis fumigatus

mayoclinic.org/diseases-con...

medlineplus.gov/aspergillos...

The adenocarcinoma and CLL will remain untreated. Thankfully the C.diff did not go chronic... small mercies..

~chris

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First things first, then. I’m not a praying person, but I will hold you in my heart and look forward to all the insightful and informative posts you have yet to share.

OK. I just cheated and said a quick 🙏.

Glenn

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Chris -

I'm so sorry to say that you are one of the pioneers that the rest of us benefit from observing what failed, but I thank you for it.

If it's any consolation, we all so much value your continued presence here, because you do excellent research, and make astute observations based on actual experience.

Your many posts make it easy for us to forget all you've been through.

=seymour=

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I just read that most laundry services that hospitals use do NOT kill off the C Diff from the bed linens. This is very scary.

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Most of us carry C.diff in us.... certainly the chances are pretty good... and the encapsules bacteria can live on hard surfaces for months... hand gels do nothing... washing hands with hot water or bleach are the best protection.

cdc.gov/hai/organisms/cdiff...

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Well, that pretty much stinks. Sorry.

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I think there are various opinions on how often to go. If there is any history of it in your family combined with cll diagnosis going more often for me brings more comfort. Was told it takes about 10 years for a polyp to turn cancerous normally but I not so sure the timeframe Holds up with cll and the impact It has on our immune system

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Thank you

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I am 46 and recently had one due to cll and strong family history. The results would then determine whether I went back in 1, 3 or 5 years. Fortunately I don’t need to go back for 5 years.

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My first was five years age. I also have strong family history.

Thank you

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1. Not sure how 50 was the number but recently for a healthy friend it was just in time and saved his life and when to start is much in debate

Personally i started at 50 and had some small items removed and have gone back between 2 and 3 years

Will be 63 shortly and not 100% happy with the current 3 year plan even with it being the result of a clean bill of health on the last one

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Hi Tommay- I guess what have to take every preventive measures. I will keep my appointment.

Best

Angie

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Just do it now. Five years is standard if you had no major issues. I did two last year but don’t go for five years. The reason for the second one, the doctor was not sure he got all of a polyp. I only had maybe two or three polyps. My husband last year had more polyps and has to go in two years or three years depending on what he or I heard. Now, a friend in Florida said her doctor told her that the last age they do them every five years is at age 65 unless you have issues in the past that suggest a need. Not sure if that is fact as I am 56. My husband made the prep seem easy saying he just had to do it, so he did it. That made me soldier up and that is my new attitude with medical tests “to soldier up” and get it done. Good luck!

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Hi Paula- thank you! I will soldier up and get it done.

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It's not a big deal. You go to sleep, wake up and it's over. I just had one recently.

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I had one five years ago. It’s the fear of hearing something negative that paralyzes me when I have to have a procedure done.

Best,

Angie

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I get anxiety procrastination about things also. The only way to get relief is to get it done and get to the other side of it.

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Worse part is drinking all the colon cleanout meds :)

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Hi Angie, I'm 78 and have had colonoscopies every 5 years since age 50. They have found one or two polyps each time. But in the US they just want to repeat the test every 5 years if you have no history in the family...and 10 years if nothing is found. None of my polyps were cancerous. Go ahead and do it...it's no big deal...

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Hi Nanno- thank you I think I will go ahead and get it over with.

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No

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I recently learned the hard way that with CLL, it's very important to have more frequent colonoscopies. I had one four years ago where just one polyp was found. I noticed occasional blood in the stool since April and finally (long wait for an appointment) had a colonoscopy in September. They found a two-inch Adenocarcinoma. While I have a lot of cancer in the family, no one has had colon cancer, so it wasn't on my radar. This is a very preventable/treatable cancer, IF screened for it. So, I now recommend a colonoscopy every three years for CLL patients, especially as we age. I thought five years would be adequate, but this tumor must have started almost immediately after my colonoscopy, so it wasn't sufficient. I'm bummed, to say the least. Get tested!

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Oh wow! I am sorry to hear. Your right preventives.

Thank you & good luck

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Sharon -

Glad to hear they found it! Thanks for sharing your experience, too!

What did they say about about treatment and prognosis? How often will you be getting colonoscopies from here on out?

I know several people who don't have CLL who have had colon adenocarcinomas, and have continued to live for years now. One had a small one, one had a section of colon removed.

=seymour=

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I should've mentioned that I've had CLL for over 14 years and am now 70, so that is a factor, as well, I'm sure. (I'm on my third treatment and doing fantastic on Venetoclax.). I'll see an oncologist Tuesday for recommendations on the colon cancer.

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I am 58 & have been on WW for 2 years. I wish you luck.

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I believe it’s every five years if you’re at high risk (history of polyps and/or family history). I had a colonoscopy ten years ago and was fine...plus no family history...so this time I qualified for the ColoGuard test. You may had heard it advertised (you do need a prescription from your doctor). I was negative and did not have to go through the colonoscopy regimen.

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I’ve been having them every 5 years since I was 38. My mom had colon cancer and survived until 15 years later got carcinoma and died 5 years after diagnosed. Better to be safe and have them.

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Sorry about your mom. You right better to be safe.

Thank you

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Ask for Colongard. Test for fecal blood and less invasive.

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Thanks

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