PLEASE PLEASE PLEASE just humor me and read this one. It's not all crap eggs or IF loss kind of crazy for once. In fact, it's not even related to IF (although I'm sure I can work it in if I try hard enough because IF really does touch everything it seems). This issue scared me, umm, shitless (literally) so I just want to pass along what I have learned in the hopes it can help someone else - maybe your parent, spouse, aunt, sibling, or even yourself.
There is something very simple I will ask of you at the end if you will so kindly oblige me. ALL OF YOU. It will be easy, I promise. You can even just skip all of the babble about me and scroll to read what is below this little mark *~*~*~*. And then I will get off my soapbox and return to regularly scheduled programming.
So stop babbling and get to the chase already, right?
So I learned late last year that despite the fact that I didn't meet any of the common risk criteria* and was categorized in the lowest level risk group** that the odds I would have had colon cancer by the time I was 40 were "highly likely" and before I was 50 (the age recommended for a first colonoscopy) were "almost certain".
*over 50, diet high in fat/red meat, smoke, drink in excess, don't exercise
**Level 1: The person does not have a family member who has had colorectal cancer or adenomatous polyps. Or the person has a family member who had colorectal cancer or a polyp but the affected family member is not their parent, sister, brother or child.
I believe my words were some version of, "Errr, back up there Dr. Grandpa (GI doc #1 who is, well, OLD). Your associate Dr. Nopersonality (GI doc #2 who I think really needs no explanation on his nickname) gave me the old 'Everything is great. Come back in 5 years for a repeat colonoscopy.' just last year and I am certain I would remember if he had told me about these likelihoods."
So let's do a quick recap to bring everyone up to speed with the workings of my colon and why I have 2 GI docs. I know you are all on the edge of your seats now. It gets better I
- September 2006 - occasional (~2x/month) rectal bleeding begins
- March 2008 (yes, it continued for 18 months...I see the error of my ways. No scolding necessary) - bleeding increases to 1-2x/week, analoscopy with primary care doc - found nothing
- April 2008 - sigmoidoscopy (camera scope in the back end to view the lower 1/3 of the colon - no sedation) with Dr. Grandpa which found a 1 cm polyp who was unaffectionately named Earl; IVF#2 bumped for a month so it can be removed (See I knew I could work IF into here somewhere)
- May 2008 - colonoscopy (camera scope in the back end to view the entire colon - sedation required) with Dr. Nopersonality due to last minute scheduling issues to remove Earl the polyp and make sure he didn't have any friends
- June 2008 - learned Earl was not cancer via a phone call from my primary care doc
- July 2008 - learned Earl was pre-cancerous via a 1 page results overview sent by snail mail from Dr. Nopersonality
- August 2008 - follow up sigmoidoscopy with Dr. Nopersonality to make sure Earl didn't leave any garbage behind; get clean bill of health for 5 years and go about my merry IF way
- August 2009 - Rectal bleeding the sequel - and with a vengeance not to be postponed
- October 2009 - met with Dr. Grandpa and learned all those extra details about Earl and my cancer risk. This might have launched a full blown google searching frenzy which may have led to mass pandemonium, but we aren't going to talk about that.
There are two main varieties of colon polyps: hyperplastic and adenomas polyps.
- Hyperplastic polyps tend to be smaller and are not a risk for cancer.
- Adenomas polyps make up for 75% of all colon polyps and are precancerous. If left in place, they can become cancer.
Adenomas are divided into three sub-types of polyps:
- Tubular adenomas are encountered most frequently (80-86%) and are the least likely to turn into cancer
- Tubulovillous adenomas are encountered less frequently (8-16%)
- Villous adenomas are encountered least frequently (5%) and are the most likely to turn into cancer.
There are a couple different ways that a polyp grows: pedunculated or sessile.
- Pedunculated look a bit like a mushroom with a small stalk and then a head.
- Sessile are missing the stalk and thus have a larger surface area connected directly to the colon. If I told you that sessile are more likely to be cancerous (33% vs. 13% for pedunculated) and are harder to remove when larger than 1cm, which do you think I would have?
The National Polyp Study found that the only independent factors to predict if a polyp will progress from precancerous to cancerous were adenoma size and histology. They defined advanced polyps as larger than 1 cm or as those containing villous tissue or high-grade dysplasia.
I was already at risk with my villous histology, but why not add the risk that my polyp was also 1 cm.
So even though Dr. Nopersonality had given me the old, "Your-polyp-is-fully-removed-you-are-good-to-go-come-see-me-in-5-years-for-your-next-fun-filled-colonoscopy-now-go-enjoy-your-life" babble back in August 2008, learning this new information along with the return of the bleeding was cause for concern.
Back to the timeline...
- October 2009 - sigmoidoscopy with Dr. Grandpa shows nothing (despite the fact that I bled 3 times the morning of the procedure)
- October 2009 - colonoscopy with Dr. Grandpa shows nothing
- December 2009 - met with general surgeon who (with a very short scope) found the source of the bleeding to be several very irritated "possible ulcerated patches" that he wants Dr. Grandpa to biopsy
- Today - still bleeding, but in need of a new GI. (If Dr. Grandpa can't find anything in a sig or colonoscopy, I suspect he will have trouble finding something to biopsy... I was hoping I wasn't the only one that this wasn't lost on.)
*~*~*~*
Soapbox rant BEGIN.So here are some of the facts followed by my little PSA spiel.
About 90% of people diagnosed with colon cancer are older than 50. The screening guidelines for someone with the lowest level of risk (where I was categorized and where most of you are likely categorized) is to have a first colonoscopy at age 50 and repeated every 10 years unless there is an issue (polyp, cancer, etc) which then shortens the time in between procedures anywhere from 1 to 5 years.
If you have a first degree family member (parent, sibling, child) who was diagnosed with colon cancer before age 50 or had a polyp before age 60, it is recommended that you have your first colonoscopy 10 years earlier than the age your family member was diagnosed. (ie If your dad was diagnosed with colon cancer at age 45, you should have your first colonoscopy at 35.)
Why does 10 years keep popping up? Dr. Grandpa assured me that it takes about 7-8 years (Dr. Google says 5 years) for an adenoma polyp to grow to 1 cm and an additional 5 years before it turns into invasive cancer. The earlier the polyp is caught, the less likely it has of becoming cancer.
If found early, the 5-year survival of those with colon cancer is 90%. NINETY PERCENT!! This number drops to 7% for those detected late. EARLY DETECTION and PREVENTION IS KEY!!
Of course there are always exceptions to the rule (me being a case in point), but MOST colon cancer cases can be prevented by following the simple screening guidelines.
My plea today is to ask all of you to probe someone you know who may be at risk. I know everyone here knows at least one person who is over 50!
Tell them about some info you came across on the web or send them something like this article or ask if they have had one or if their doctor has suggested they have one. Please just make mention of it in some way.
March is National Colorectal Cancer Awareness Month so no better time than the present to raise awareness.
I have persuaded both my 39 year old brother and 59 year old mom to "get theirs". Thanks to me they are now at a risk Level 3***. My mom didn't think she needed one because she is healthy, feels fine, and takes really great care of herself. She now knows that by simply being 50 that she is at risk. She will (along with me and my brother) be getting her back end scoped every 5 years. Fortunately?? for them we all had colonoscopies in 2009 so I have claimed the job to
***Level 3: The person has a parent, sister, brother or child who had colon or rectal cancer before age 50 or a polyp before age 60. Or the person has two close relatives (parent, sister, brother, child) who had colon or rectal cancer after the age of 50 and/or an adenomatous polyp at any age.
I've had mine. Do you know if your at risk loved ones have had theirs?
Soapbox rant END.
27 comments:
wow, that was a lot of medical jargin. you should be a doctor. and my mom would be so proud...she is a huge advocate for colonoscopies!
the surgery center i work in does them daily...its easy and fast.
((hugs)) you have been through gosh, darn too much.
So sorry that this crap keeps gettin' better. Geez.... And yes, I think you missed your calling with the whole rocket scientist thing and you should have been a brain surgeon.
On another, completely inappropriate and none-of-my-business note, I can't help but wonder about the logics of these procedures. I mean, I know about the stirrups involved in the countless appts for IF, but what the heck is involved here? Come on. I'm sure you have the perfect collection of nouns, verbs and adjectives so we can live it with you.
{{hugs}} And many wishes for peaceful poop.
I've been following your blog for a while, but haven't commented until today. I was diagnosed with colon cancer at 29, and am a frequent flier when it comes to colonoscopies and the like. My family would love to drop me, too, except that several of them have the same great gene I do, so it's mutual. LOL. Just wanted to say good for you for hanging in there for answers. Definitely don't ignore rectal bleeding of any kind (on my soapbox now), and don't let anyone tell you you're "too young" or "too ________" for something to be wrong. I sat in a doctor's office one week as he assured me that I was "too young" for colon cancer, so it must be ulcerative colitis or Crohn's Disease. Nine days later he was telling me it was cancer. Trust yourself--you know when something isn't right. (off of soapbox now)
Sending lots of good thoughts your way.
Paula
Oooo...this is creepy. I just called this morning to get in to my GI. You were sending me brain waves before I even saw this.
I had to clench my buttocks just reading this. Am seeing my Dad this weekend, might gently remind him over dinner. No, maybe after dinner.
My grandpa died from colon cancer, so I appreciate your information! I am sorry you have had to go through all that, though, and the docs can't seem to get it figured out. Yikes.
Thanks for all the stats girl! DH just has his 2wks ago, he is 31 y/o. My mom had hers the end of last yr she is 53, FIL had his last yr (not sure how old, but over 50), Dad also had his recently, so the only person I have left to check is my MIL. hmmm :)
Forgot to mention, why is it IF patients always fall in these small %'s. How did we get so lucky?
I lurve you.
My gosh, you poor thing! You seem to run into every bad statistic every direction you turn. Sorry you are going through all this crapola! Sending you lots of healthy colon vibes!
Enough said - I will prod my husband (not literally - I'll let the doc do that!) to get his next check. When he turned 45 his GP said "So, any rectal bleeding?" and my husband told him no. Then the doc mentioned that gee, was he SURE?? Because the insurance would be happy to cover it to check out an actual problem, hint hint. Suddenly my husband DID remember some possible bleeding.
I'm so glad he got that baseline, but he does have to keep up the regular checks. As for me, um, I promise to go as soon as I am allowed! Better safe than sorry...
I hope you can find a new doctor who can figure out what's going on, B. Hope he/she can find some answers and hope you feel better soon.
that sounds awful. I'm so sorry you have to deal with that crap. glad you're on top of it.
Dear Brenda,
As a result of this post, I went and saw my GP this morning. I'm 35, but my mother has terminal cancer, of which the primary is in her bowel. By the time they discovered it (there had been no symptoms), she already had secondaries in her liver, ovaries and lungs. She is going currently undergoing "life lengthening" chemotherapy. Her father also died of colon cancer when he was in his seventies.
On my father's side, his sister died of colon cancer when she was 29. Whilst I have been getting annual faecal occult blood tests done, I decided to pressure my GP into recommending me for a colonoscopy on the basis of all the things you've said here. In particular, I didn't realise all the info on polyps (did I mention that after my mother got diagnosed, her 6 siblings all had colonoscopies and all were discovered to have polyps, though I don't know what type) - that was really useful and spurred me into action.
So thank you. Now does this count as having persuaded someone at risk to go for a colonoscopy from your 101 list?!
Take care lady.
Seriously? I had no idea you had all this going on...and you've had so much else on your plate on top of it! That is so scary. Great post! About 10 years ago my mom's doc tried to get her in for a colonoscopy...she never did it and refuses...my dad too (even though his brother actually made the appointment for him). They absolutely refuse. I've tried to argue...but such is how they are. I guess just learn a lesson and move on. I hope this post does get others to convince their family and friends to get tested.
Perhaps you should try supplementing your diet with Super Colon Blow! (ok, that was my lame attempt at humor. But do you remember that ad on Saturday Night Live???)
I am SO glad that you don't have cancer! What a drawn-out, scary ordeal. And I HATE it when doctors gloss over important information about test results, and you have to find out something's amiss via snail mail (my GI doc pulled the same crap. no pun).
Thank you for spreading a whole lot of colon awareness as well. My mom FINALLY went to have her first one performed (at the age of 58). I was mad that she waited that long, but she appears to be all clear.
I hope the docs are able to be get your colitis (if that's the culprit) under control!
Excellent advice B, thanks. I'm so sorry your family is dealing with this though--you in particular!
Thanks for posting this! My Grandfather died of colon cancer so I know very well the need for colonoscopies. My husband's mother died of colon cancer at the age of 47. He's already had his colonoscopy (at age 40) and has to go back next year for another one. This is truly a treatable disease and colonoscopies while uncomfortable to even think about save people's lives.
I am so happy that you now have a diagnosis - it can be controlled by diet, right?
Great post Brenda! I learned a little something for sure. My dad had a precancerous polyp before age 60. I have no idea what kind or how big. You have made me curious to find out. I guess this means I should get a scan at 40 instead of 50. I had no idea. Makes sense though.
I'm so glad you feel free to share about your butt business. More people should. It could save their lives.
This is awesome B. What a ton of awesome info and I will be telling those I know to get a check soon. My mom gets checked regularly as she is breast cancer survivor and her father died frm colon cancer. xoxox
B-This is very concerning to me for YOUR health. My dad almost died of severe ulcerative colitis... twice. I am so sorry to hear that you have to deal with this, as I know exactly what you are dealing with. Find the BEST GI DOCTOR you can. (I know you will).
After a 5 year struggle, he had his colon removed last March. He is doing really good now, but it is nothing to mess around with.
I feel so frustrated for you that you have to deal with this. Dealing with IF is hard enough. ((HUGS))
PS-my GI doc keeps a close eye on me due to the fact that dad had so many problems. I have IBS (irritable bowel syndrome) and the second anything gets worse (than it already is) I am instructed to go in.
oh boy. ok. i hear you. its like the universe (or God, in my world) is hitting me upside the head through YOU. sigh.
i have known that i would need to keep an eye on my lower pipes for awhile. mom had polyps but died from uterine cancer, aunt and grandmother on mom's side died of colon cancer.
i'm going to send the article you linked to my sister who is 55. she really needs to be checked if she hasn't already been.
thanks for the PSA! really, good on you.
and you just keep pulling all the slimmest odds don't you? how about vegas? you could win at roulette at this rate!!
xoxo
Wow, like always, you've really broken this down into an easily understandable format. And I now it's going to make a impact on more than one or two people.
I'm sorry you are having to deal with all this on top of trying to resume your regularly scheduled life. You've been handed a lot of crap and I continue to be amazed at your strength, and the care in which you share so much with your blog readers.
Good for you for getting on your soapbox about colonoscopies, especially if you have colon cancer in your family. A co-worker's husband found out he had Stage 3 colon cancer at age 33. He has colon cancer in his family, and may have found it earlier if this had been on his radar. Luckily, he survived the surgery and chemo so far.
We could really get on a soapbox about any kind of cancer. Whatever runs in your family, go get that body part checked out sooner rather than later.
I beg to differ that colon health has nothing to do with IF. Lots of women who have some kind of colon disease, like celiac disease, gluten intolerance, UC, etc, have problems with infertility. I hope you figure out what's up with your colon. It sucks when your intestines don't work. It took me many years to figure out what was wrong with mine, and to find a diet that would work for me.
Wow. Yikes. Erm. So, I guess I finally need to suck it up and tell my dr that I've been bleeding after bowel movements for the past few years? Gah.
I don't have any family members who've had colon cancer though...so that's good.
Sheesh hun. I'm sure sorry you're having to go through all of this. Sending ((hugs))
Hi B - Just wanted to let you know that there's an award on my blog for you. You know how much I love reading your blog and how much you've helped me over the past few years. I'm really glad that we've gotten to know each other.
Thanks to you all for sharing your family histories and own personal stories. This stuff is another one of those very "real" things that happens to good unsuspecting people all the time and I'm glad some of you are now prodding family members as well as looking into getting checked yourselves! This makes me happy beyond words.
bb~That may come yet along with colon cancer awareness month. (-; Hold tight. LOL.
Paula~Wow. Just wow. Thanks for delurking and sharing a bit of what you have been through. Great, great advice from someone who has really been there. I hope all is now going well for you.
Sheila~So glad you are getting checked! This put a huge smile on my face and I would love to include you in my 101 list. I would love to hear how things go.
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