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Colonoscopies at 50 - why???

lizdeli's picture
lizdeli
Posts: 570
Joined: Jul 2009

I am an anal cancer survivor and visit the colorectal site frequently as well. I am saddened by the passing of Patti. Though I didn't know her, I can tell she meant a lot to all of you and my heart goes out to her friends and family. I recently read about another young woman who sadly lost the battle, Liz. What I cannot understand is why insurance companies and doctors feel that 50 is the right age for first colonoscopies???? There are so many young people battling colon cancer and if the age limit was lower I would think so many cases could be caught early enough and more lives saved.

I was treated at MD Anderson and met many people who were being treated for colon cancer. Honestly, most of them were in their late thirties and early forties. I was astonished. I'm curious if anyone knows if any action has been taken to convince doctors and insurance companies that age 50 is too long a wait.

In my own case an earlier colonoscopy would have helped as well.

Liz

k1
Posts: 220
Joined: Dec 2009

I had my colonoscopy for the first time six days after I turned 50. They found a cancerous tumor that the size indicated I had had it since my late 30s, so I totally agree with you that 50 is probably not early enough for a lot of people.

K

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

I agree- I was diagnosed as stage IV at just a month after my 41st birthday. Since it was already stage IV at age 41, I am sure it had been in me since at least my mid thirties. I had no family history of cancer of any kind & so when I first went to the doctor, they totally downplayed it- said it must be hemorrhoids. I am the one who said "well, it would still probably be a good idea if I had a colonoscopy". They agreed and put in the referral, but since they acted like it was no big deal, I put it off for a few more months. Even screening at age 40 would have been on the late side for me. Maybe they could suggest what is now suggested for breast cancer with getting a mammogram- a "baseline" after 35, then regularly after 40 (although remember how they recently tried to up mammograms from 40 to 50? I'm glad most of the medical field stuck their ground and still recommend it at 40). I think 40 should be the minimum age for a colonoscopy and younger if there is any concern or question in the mind of the doctor or patient at all.

I guess we need to lobby C3 to work on this. I'm afraid it will be hard to get it lowered, but nothing will be done without trying!!

Lisa

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Its now all about the money .....before long I would venture to say it will be tough to get one at all unless your family history dictates it. What that tells me is that someone in your family has to go to long before it would make the others in that gene pool eligible for testing under insurance provisions. There are National Guidelines that most go by but I am very afraid that these are going to be a lot stricter as time goes by in this healthcare dilemma.....Medicare has quit paying at my oncologists office until the changes in the legislation are voted on and passed . The office is not giving any neupagen, neulasta, or other chemotherapy until medicare starts paying again. So all the patients are having to go to Nashville to get their White Blood cells boosted.....its a crock...most can't afford to drive down there....Its getting messy and I don't see the end very near either.......Buzz

Jaylo969
Posts: 827
Joined: Jan 2010

I am acquainted with a young lady, age 32 with two young toddlers. She has stage IV colon cancer.

Even if the guidelines were lowered much, much more information has to become available and up front in order to convince people to have screening.I was 55 when I had my first colonoscopy and then only because I was having problems.

-Pat

khl8
Posts: 810
Joined: Nov 2009

I was in a study through University Hospitals and Case Western Reserve University this past year and it was about my symptoms and my age, I was diagnosed at 43. The study was to compile all the information to "show" that 50 is too late for routine colonoscopies and to show that the symptoms that some of us exibit are possoble treated by the medical community as IBS or something. I hope that the study shows that Doctors need to think Cancer screening first, reagrdless of age. And to not assume someone symptoms are something else just because they are too young in the eyes of the medical community.
Kathy

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

me too kathy

krf's picture
krf
Posts: 99
Joined: Dec 2009

Roger's mass was estimated to be at least ten years old at diagnosis at age 37. A simple scope at 27 would have changed everything.

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

John and I have met so many younger people in the infusion room that have colon cancer. All have different stories. I think it is a sham that some are sent home and have to keep going back many times until someone listens to them.
We do need better guide lines. And Buzzard you are right I think. It is so sad and makes me so mad. Paula

dmdwins
Posts: 453
Joined: Aug 2008

50 is just too late. I was 42 at diagnosis(Stage 4) and was told it had probably been there 5-7 years. I was asymptomatic until about 6 months before diagnosis and still only had hyperactive bowel sounds and intermittent right lower quadrant pain. Luckily, my physicians were willing to do testing even thought they expected to find nothing!

Hopefully it saved my life(currently NED)but if not it certainly prolonged it...for that I am grateful.

Smiles,
Dawn

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I was 50.6 when dx'd. Family history of colon cancer and polyps, I easily had colon problems for 5-8 years prior, "IBS". So even with absolutely glaring and overwhelming evidence (I fit the profile perfectly for cc)- not one of my doctors ever made the connection. I think earlier screening is critical- but I also think a whole lot could be done in the way of taking patients symptoms and family history SERIOUSLY and making a colonoscopy more routine. As in never say internal hemoroids, or IBS or colotis, or constipation- do the colonoscopy to rule out cc THEN SAY, oh it must be something else.

Alot has changed since I first was tested 8 years ago- I had a barium enema- I did have a doctor concerned enough. It was fine and unfortunately that test became a benchmark of sorts for future doctors- "patient had a barium enema that was negativee-" colonoscopy was never mentioned in 8 years.

KFen725's picture
KFen725
Posts: 108
Joined: Jul 2009

I absolutely agree with this... My mom recently died at age 62 of colon cancer after being diagnosed Stage IV 8.5 months earlier. I am 27 now and plan on getting my first colonoscopy at age 30. I am not going to mess with it! As long as you "mention" bleeding of any sort to your dr, it seems that insurance companies will cover it.

Kelly

z's picture
z
Posts: 1414
Joined: May 2009

Hi Liz

I visit this discussion group also, as you know I am an anal cancer survivor. I find the posters on this board inspiring. I agree that the colonoscopy should be performed earlier, as these tumors grow for years. At 50 when I had my colonoscopy 3 polyps were removed, 1 being pre cancerous. By the way, because I needed a biopsy for the anal cancer, is the main reason I had the colonoscopy. I hadn't been to a dr for anything since 2001, and the only reason I went in 2009 was due to the anal issue. If I hadn't had the anal issue, I probably would have found that the polyp had developed into cancer. I have a friend who has cc in her family history, is 54, and as yet, has not had a colonoscopy, I ask her every month if I could take and pick her up for the procedure, shes procrastinating, and putting it off. Her ex boyfriend had cc and ended up having a J loop and is doing great. With the removal of the polyps, is the removal of the cancer and I just can't persuade her to get this done. Since there is a family history she should have had it done years ago. I will keep asking her.

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imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Before people go looking for insurance companies to blame we should look in our own back yard. The American Cancer Society (the wealthiest no-profit organization in the world, by the way) doesn't promote early screening for many cancers. Get involved with C3, the Colon Cancer Coalition. They are active in the fight to change the numbers for CRC, the number 1 statistic, that every NINE minutes someone dies from colon cancer. Anyone that doesn't like that number should show support of legislation H.R. 1189. Go to the C3 website and see what you can do.

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

Wow- if the U.S. ends up going the route of England, we're in trouble... read the NHS Bowel Cancer Screeing Program website info that I copied and pasted below (they refer to colon cancer/colorectal cancer in the UK as bowel cancer)... Their covered age for this screening is 60-69. What's really upsetting is the question asked "I'm under the screening age, but am worried about a family history of bowel cancer. Can I be screened now?" The answer was "No, the targeted age is 60-69. There are no exceptions made. If you are concerned, see your GP, who can refer you to a specialist." Scary!

Read on below...
(It's kind of hard to read- the original website didn't appear like this, but this is how it came out when I copied and pasted it here- anyhow, read on down...)

NHS Bowel Cancer Screening Programme

Helpline telephone no. 0800 707 60 60
Frequently Asked Questions
When did the NHS Bowel Cancer Screening Programme start?
I'm in my sixties. What do I have to do to take part in the NHS Bowel Cancer Screening Programme?
Can you tell me more about bowel cancer screening?
What is an FOBt kit?
Will the FOBt tell me if I have cancer?
How do I use the screening kit?
My father died of bowel cancer in his fifties - can I be tested earlier?
I'm in my seventies, can I still have the test?
I'm worried about constipation/diarrhoea - can I have the test?
Has screening started yet where I live?
I'm aged 60-69 and screening has started where I live - why haven't I been invited yet?
How do I get my screening kit?
I'm in the screening age range, and I want my kit now as I'm worried about symptoms.
I'm under the screening age, but I'm worried about symptoms/have a family history of bowel problems. Can I be screened?
I take care of the hygiene needs of a disabled/infirm person. Can I complete the screening kit for them?
I am a carer, looking after someone who lacks the mental capacity to make their own decisions about screening. They have been invited for screening. How should I deal with their invitation?
My husband and some of my neighbours have received their screening kit even though they are younger than I am. Have I been missed out?
When did the NHS Bowel Cancer Screening Programme start?
The NHS Bowel Cancer Screening Programme started in 2006 and is being rolled out over three years. Eventually there will be over ninety screening centres across the country administered from five regional programme hubs.

For the latest position, please see www.cancerscreening.nhs.uk/bowel/roll-out.html

I'm in my sixties. What do I have to do to take part in the NHS Bowel Cancer Screening Programme?
When the NHS Bowel Cancer Screening Programme reaches your area, and if you are registered with a GP, you will automatically receive an FOBt kit so that you can do the screening test at home. GPs and the local press will be informed when the programme starts in your area. In the meantime, if you have any concern about your bowel health, you should see your GP in the usual way.

Can you tell me more about bowel cancer screening?
This video shows the bowel in detail. It also gives detailed information about having a colonoscopy and shows how polyps are detected and removed.

What is an FOBt kit?
FOBt stands for Faecal Occult Blood test and occult means hidden . The kit is used to collect samples of bowel motions which are then analysed to detect tiny traces of blood, invisible to the naked eye.

Will the FOBt tell me if I have cancer?
The Faecal Occult Blood test (FOBt) does not diagnose bowel cancer, but the results will tell you whether a further examination of your bowel (a colonoscopy) is required.

How do I use the screening kit?
View our animation film about the Bowel Cancer Test Kit and how the screening test kit is used.

My father died of bowel cancer in his fifties - can I be tested earlier?
Eight out of ten people who get bowel cancer are over the age of sixty so the NHS Bowel Cancer Screening Programme is aimed at people aged 60 to 69. If you are concerned about your family history, or risk of developing bowel cancer, you should see your GP in the usual way.

I'm in my seventies, can I still have the test?
When the NHS Bowel Cancer Screening Programme reaches your area you will be able to request an FOBt kit so that you can do the screening test at home. You will know when this is because details will be sent to GPs and announced in the local press. In the meantime, if you have any concern about your bowel health you should see your GP in the usual way.

I'm worried about constipation/diarrhoea - can I have the test?
If you have symptoms or are worried about a change in your bowel habit, then you should see your GP in the usual way.

Has screening started yet where I live?
Have a look to see if your area has started screening yet. Bear in mind that not all PCTs start screening across the whole of their area at once, and not all invitations go out immediately. It may take up to two years after screening starts for some people to get their first screening invitation

I'm aged 60-69 and screening has started where I live - why haven't I been invited yet?
When screening starts in an area, not all invitations can be sent out at once. Populations are divided up into age groups, and invitations are spread out over the first two years of screening. This means you may wait up to two years for your first screening invitation. Invitations are sent out around the time of your birthday. As always, people worried about possible symptoms shouldn't wait for screening, but should speak to their GP.

How do I get my screening kit?
If you are in the screening age range of 60-69, you will automatically be sent your screening invitation through the post once screening has started in your area. All you need to do is make sure that your GP has the correct address details for you. People aged 70 and over need to request a kit if they want to be screened, as they won't get an automatic invitation. If you are aged 70 or over and screening has started in your area, you can phone the freephone helpline on 0800 707 60 60 to request the kit.

I'm in the screening age range, and I want my kit now as I'm worried about symptoms.
You cannot be screened early, you have to wait for your invitation. If you have symptoms, you need to speak to your GP. This is the quickest way of getting any health problems checked out.

I'm under the screening age, but I'm worried about symptoms/have a family history of bowel problems. Can I be screened?
No, the NHS Bowel Cancer Screening Programme is currently only available to those aged 60 and over in England. There are no exceptions. Anyone with health concerns shouldn't wait for screening but should go and speak to their GP, who can arrange for referral to a specialist if necessary.

I take care of the hygiene needs of a disabled/infirm person. Can I complete the screening kit for them?
If the person has asked for help, understands the screening process (including colonoscopy), and does not have a medical condition that means they shouldn't be screened, then yes. However, if the person doesn't understand the screening process, and/or doesn't have the capacity to consent to it, please view the FAQ from carers.

I am a carer, looking after someone who lacks the mental capacity to make their own decisions about screening. They have been invited for screening. How should I deal with their invitation?
If the person you care for is unable to make their own decisions about screening, then you, as their carer, should make what is called a 'best interests' decision on their behalf, in the same way as you may be making other decisions about their care and treatment. You will need to weigh up the benefits of screening, the possible harm to them and what you think the person would have wanted to do themselves. Whether you are a paid carer, or an unpaid carer, family member or close friend, the process is the same.

Some people may have fluctuating mental capacity, in which case, the decision about screening should be delayed until the individual is able to decide for themselves. If you do need to make a decision on someone else's behalf, you will need to consider what is involved in the screening process (including any further diagnostic tests that may be needed if the person receives an abnormal screening result). You may find it helpful to speak to their GP to discuss, for example, the person's risk of developing the cancer in question and how screening may affect them. You must also consider what you think the person themselves would want. For example, did they used to go to screening, or express an opinion about it? Did they express more general views about their health and whether they would want to know if they had a disease or condition? Or did they refuse screening in the past? Paid carers in particular should get advice from family members or friends about the person's views. If, after all this, you consider that screening is in the best interests of the person you care for, then you are within your rights to help that person to be screened. You should feel confident that if someone asks you, you will be able to explain the reasons for the best interests decision that you have made - either for, or against, screening.

To find out more about the bowel cancer screening process, please read our leaflets Bowel cancer screening - that facts, and The colonoscopy investigation. You can also watch a video about bowel cancer and the colonoscopy investigation. If you live in an area where bowel cancer screening has started, you can also call the freephone helpline for advice, on 0800 707 60 60.

To find out more on making a best interests decision, you can read Making decisions: A guide for family, friends and other unpaid carers [PDF 390Kb] from the Office of the Public Guardian. There is also Making decisions: A guide for people who work in health and social care [PDF 320Kb] on making best interests decisions.

To find out more about consenting to screening, please read our Consent to cancer screening guidance.

My husband and some of my neighbours have received their screening kit even though they are younger than I am. Have I been missed out?
No, you haven't been missed. Screening kits are sent out depending on your date of birth. Call the helpline 0800 707 6060 to find out when you will receive yours.
Search this site for:

Bowel cancer screening programme index

Who does what in the NHS Bowel Cancer Screening Programme?

Update on programme roll out

Publications

Programme posters

Bowel cancer

Frequently Asked Questions (FAQs)

Information leaflets

GP Pack (Information for primary care)

Bowel Cancer DVD

English Bowel (Colorectal) Screening Pilot

Evaluation of the pilot

Evaluation of the second round of the pilot

Research

Section 60

Training Centres

Useful links

[ Home | Breast Screening | Cervical Screening | Bowel Screening | Prostate Cancer Risk Management | Screening News | Contact NHS Screening ]

The NHS Bowel Cancer Screening Programme freephone helpline telephone no. is 0800 707 60 60.
You can ring this number to request a screening kit if you are over 70.

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HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

You're totally right. I was diagnosed at 46 with stage III. I do have a family history though. My daughter recently went to my surgeon because she was having bowel problems. She fortunately was declared clear by my surgeon who did her colonoscopy and endoscopy. She was diagnosed with IBS which she takes prescription strength Zantac for. However, he told me he diagnosed a young man (28 years old) with stage IV the week before. Very sad. I know I'm one of the older ones on the colon club because a lot of them post their ages. Very sad that colonoscopies aren't mandated to be done by the age of 30.

C3, the colon cancer coalition, was trying to get all colorectal patients (at least one person per state) to call their state rep to pass bill 1189 (I think) which was started by two fine congress persons. I did receive a personal letter from my state rep, which was more or less a letter that said thanks, but we don't have the money to help you.

My kids know that they have to go in early because of the family history. Insurance pays for family history of, but not just screening because you want to be screened. When I went in for mine, my insurance turned me down because I had no signs or symptoms of bowel problems and I was under 50. They forgot to tell the insurance company that I had a family history. :o( Anyway, to answer your question, there is no doubt in my mind that people younger and younger are getting colon cancer. Something needs to change!!

Moving forward,

Holly

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I has a colonoscopy at age 45, and nothing......at 50 they found a golf size tumour.

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

George was diagnosed at age 60. Our daughter, age 33 will be having her first colonoscopy beginning at age 35. Beginning age 35 she would be covered by her current insurance carrier due to family history. Mother, father, sister, brother with a history of colon cancer they will pay for early screening. Her doctor checked on it for her. They will cover the cost beginning at age 35. While I wish it were sooner, we are comfortable with age 35. If she has any symptoms whatsoever she would be immediately approved for a colonoscopy.

Tina

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I wouldn't wait if i were her; I would be telling my doctor about seeing blood in the toilet whether I did or not! Better safe than sorry!
mary

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

I'm with Mary, when a life is at stake, honesty may not be the best policy. I think I would recomend that method to ANYONE concerned about their risks. Cancer is a battle and unfortunatly many times the insurance companies are against us. All's fair in love and war....

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