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When to get scoped for early detection with family history?

fighting for mom's picture
fighting for mom
Posts: 96
Joined: Jan 2009

My mom was diagnosed last Thanksgiving with Stage 3 (by surgeon) or Stage 2 (by oncologist) colon cancer. A resection and chemo followed. She was only 59 at diagnosis. Only 3 treatments left for her---hoorah!!! The fight has been challenging- but I do believe she is winning the fight!

Everyone tells us that me and my brothers should have colonoscopies at the age of 40. I am only 33. I would feel so much better having had one now - sooner than later. She had such an aggressive cancer cell and I worry about that.

I have had a colonoscopy before due to severe pain- and they saw 'something' but after another horrible test they said all was ok and it was just an adhesion from a c-section. I just have that little seed in the back of my mind that I should be checked out now.

Any thoughts? Of course, my insurance won't pay unless it is done for some 'reason'. I think my regular Dr. would go along with it due to some abdominal pain he is ruling out as 'adhesions'. Because- what if??? What if it is cc lurking around and I have done nothing?

Am I getting a little crazy/paranoid?

What are your thoughts?

Thanks,
Susan

taraHK
Posts: 1961
Joined: Aug 2003

Dear Susan,

I was told that my kids should get tested when they are 10 years younger than I was at diagnosis (44).

After I was diagnosed, I sent my sister off to be tested. She tested clear and was told to come back 5 years later. NOT OK for her or for me. (Only the paranoid survive!!).

So, her doctor (an angel in disguise) said that of course if she was experiencing "symptoms", she could get tested sooner (say, every 2-3 years) -- and the insurance would cover.

Hey, a friend of mine ate some ice cream with ?cranberries then saw what she thought was blood in her stool.....it can happen.

If you are feeling stressed about this, and given your mom's young age at diagnosis, I would try for earlier testing. Hopefully it would simply put your mind at ease....

beachinmom
Posts: 75
Joined: May 2008

I know you said she was 59 at DX, was that her first scope? If not, did she ever have a polyp DX? I think the protocol is to scope ten years before first polyp or cancer diagnosis.

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

I was 56 when I was diagnosed after my first colonoscopy. (OK, I was six years late in getting my first colonoscopy. Shame on me.) My son was 25 when I was diagnosed. The oncologist told me that my son should have his first colonoscopy when he is 40. I keep reminding him to watch for symptoms and insist on a colonoscopy if he has any symptoms at all. You might talk with your PCP about indicators that you should have a colonoscopy. You have to be your own advocate. If you have any symptoms, insist on a colonoscopy.
Joy

ninetoes's picture
ninetoes
Posts: 81
Joined: Jun 2009

I was 50 when diagnosed and was told my kids should be tested at 40. I would talk to your doctor and follow what ever he/she says.

kmygil
Posts: 881
Joined: Feb 2007

Hi Susan,

I was 49 at diagnosis and only then did the penny drop; our family was covered up in colon, stomach, kidney and bladder cancers. So my onc asked if he could do genetic testing and sure enough, we have HNPCC (hereditary non-polyposis colon cancer.) My sisters were then tested and they have the gene, as well. So we have alerted the family to get tested early and often. (I have told them to stop breeding!) My niece will start testing at age 25 (she lives in Europe) and everyone here says they will test beginning at age 30. I think 25 is better. I had no polyps, just the cancer. So you may want to consider genetic testing to see if there is a basis for early testing. If there is, then 25 is not too early...

Hugs,
Kirsten

fighting for mom's picture
fighting for mom
Posts: 96
Joined: Jan 2009

My mom insisted that when my dad turned 50 he get a colonoscopy. He did. But, when she turned 50 would not do it- even after much persuasion from me. I finally told her I would make her appointment for her! The only problem was that by then she was 59 and having symptoms of nausea, bloody stools. The colonoscopy found an ulcerative leision through the outer wall. I never heard anything about any polyps so will ask her.

Thinking back she wonders if her mom had cc- some similar symptoms, etc. That's what makes me worry about the genetic component. My first colonoscopy was 6 years ago. The outcome eventually ended up ok.

I think I will make an appointment with my local Dr. I just want to know that things are ok.

Thank you so much for the responses! They confirm my thoughts to be proactive and get it done!

nudgie's picture
nudgie
Posts: 1482
Joined: Sep 2006

I was DX w/Stage II colon cancer at age 42 in 2006. I had some warning signs, always constipated and did not really take care of myself too goood. Don't get me wrong, I was a health nut with weight training and running, I just did not hydrate by body correctly or eat enough foods, so my body smacked me over the head with a cancer attack.

My surgeon, Oncologist and primary care Dr all agreed that my children along with any brothers and sisters should be checked. Cancer ran on my father's side, but my mother was adopted so no medical history was available.

My son had a colonoscopy at age 25 and all was clear. Not one needed for 3-5yrs, but I can't get my sister or brother or get one.

Industry standard is based on very old statistics and needs to be changed, so I would suggest that you discuss with your doctor the situation with your mom and if need be, have your mom's Onc provide some info as well if you wish to get a colonscopy.

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

I was/am 39 when I was diagnosed with Stage IV (september 2008). My daughter is 15 and I'm planning on having her scoped at 25! YES I STILL PLAN TO BE AROUND WHEN SHE IS 25!! Same for my sons...I'm going to have all of my children scoped at 25! I actually had symptoms for almost a year so, had I gone in when I should, I would have been 38 at diagnosis.

NWGirl
Posts: 124
Joined: Jan 2008

My father died at age 67 of colon cancer. I was diagnosed stage 3 - 27 of 38 nodes affected at 43. I had symptoms for some time - probably years. Do the math - even if my father had been fighting this for 10 years, then if I followed the "10 years before diagnosis" rule, I'd have my first scope at age 47; I'd probably have been dead by then. My brother and sister both got scoped when I was diagnosed and each had one non-cancerous polyp removed.

I don't have a number to suggest - but I think the "10 years before parents age at diagnosis" is to long to wait. I think more people are getting this terrible disease at younger ages every year. Just my personal (paranoid) opinion. My doctors tell me I just had bad luck as it doesn't appear my cancer is genetic. Go figure - lucky me eh?

All I can suggest is talk to your doctor about your very real concerns and together perhaps you can come up with an age that you feel comfortable recommending to your children. I have two young children myself and I hope by the time they are of legal age that science will have a better way to screen and test for this disease at a young age and/or to recommend when testing should begin.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I'd listen to that "seed in the back of your mind" and push to get this colonoscopy done- it will hopefully give you great peace of mind, which is definitely worth a lot. As was already said by others, insurance will usually pay for a colonoscopy if there is a "reason" or "symptoms". If you've had any kind of pain, I would think that could qualify as a reason. If your doctor is cooprative in this, he could play up your symptoms a bit to get it approved. I honestly don't know how much it would be to pay yourself, but I'd probably try to do that if it would be at all possible financially, if insurance ends up not approving it. The "10 year rule" is not hard and fast as someone else stated. For me, I was diagnosed at age 41, but I was already stage IV with lots of tumors throughout. I'll never know at what age I was when the very first polyp started growing. It was likely at least 5 or 6 years before that- maybe even earlier. So, I think my kids should probably get their first colonoscopy at around age 30 or at least by 35. Not fun for them to look forward to, but better safe to catch anything early, like you said.
Go with your instincts and let us know how it turns out.

Blessings to you,
Lisa

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mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

My grandmother died of CC when sh was 50. Therefore I shoulld be screened at 40, but got diagnosed at 35 and was told that it could have been there for 5 yrs which made my age 30. so, yes, I would get it done.

rustypipes12's picture
rustypipes12
Posts: 9
Joined: May 2009

My surgeon told my son that he needs to start at 35 now that there's a family history. Think about what your Mom has gone through. A lot of insurance companies will take family history into account on something like this because it;s lots cheaper to catch it early! If they won't pay, talk to your Mom's Dr. and see if he'll help.

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