A Plea: regarding comments to young members posting they fear they have colorectal (bowel) cancer.

[Nicole_GCCA]

Dear Colon Cancer Connected Members:

Thank you to all of our members who post, comment, like. For those who do not post but are readers of posts, we hope that you are finding this forum to be useful and if you ever need anything, please know that you are welcome to post.

I'm writing this post because we have seen a large increase in the number of people who are posting about being concerned that they have colorectal cancer (also known as bowel cancer).

If you scroll through our posts, you will see we have a lot of members who are terrified that they have colon cancer, some have more symptoms than others, some have a family history, others not. But one thing that is in common is a very high level of anxiety that they have colorectal cancer. Many people posting have also self-identified as having health anxiety, and that can be a debilitating condition, that needs to be treated as well.

Colorectal cancer is a unique cancer in that it is largely preventable with screening, and with early detection, the survival rates are really high, about 90% of people diagnosed with early-stage colorectal cancer will reach the 5-year milestone from time of diagnosis. On the flip side, when detected at a late stage when the cancer has spread to distant parts of the body, the 5-year survival rate is nowhere where we want it to be, (14%) however it is improving as new targeted treatments continue to become available. But going through chemo, surgery or radiation or any cancer diagnosis of any kind is traumatic, and we exist to support people who are impacted by the disease and prevent people from developing it through screening, or increase the survival rate through early detection and targeted therapies.

So many cancers have no screening method AT ALL, and colorectal cancer has many, and new technologies continue to come forward, for instance, we believe blood-based screening for colorectal cancer will become (one day) as routine as getting your cholesterol levels checked.

There are SO many possible reasons why people would have blood in the stool or a number of other symptoms that we so frequently see people post about and are certain they have colorectal cancer. Dr. Google doesn't help at all, because it increases anxiety and fear because you are reading articles that say these are the symptoms and you think: check, check, check,... ok I have these symptoms, I have colon cancer. Anytime blood is seen in the stool or there is rectal bleeding, a medical professional should examine the patient and depending on the examination, family history, and other factors, the doctor will discuss options for additional screening.

I do have a request though -- please, know that there is no such thing as being "too young" for colorectal cancer. We recognize that it is a tough balancing act in wanting to calm someone's anxiety about a cancer that takes the lives of nearly one million people worldwide (according to the World Health Organization, for 2020) Link: wwho.int/news-room/fact-shee... but we also don't want someone to post, read a bunch of encouraging comments saying that they had the same thing and it was nothing, and then the person does not speak to their medical provider because they feel reassured that it is also nothing serious.

From the standpoint of being a global patient advocacy group dedicated to colorectal cancer, we have met or spoken to thousands of people who experienced symptoms, were told that they were "too young" for colorectal cancer, it was "probably just hemorrhoids" or incredibly heartbreaking, pregnant or mothers who had recently given birth being told "your body is adjusting since having the baby, I'm sure it is nothing," It is tragic, the number of parents or spouses who are left to live their lives without their son or daughter, or spouse or mom or dad because their symptoms were dismissed. Search on social media for #nevertooyoung or #never2young and you will see a lot of real patient stories.

Our hope is that it for those who are experiencing symptoms, that testing deternubes that it is NOT cancer or another serious condition or cancer. And many of the times it will turn out to be another digestive disease that is managed well with medication, diet changes, etc.

Every time someone posts that they are experiencing a change in bowel habits, we always recommend they speak to a medical professional and get checked out. It isn't just about colon cancer, it could be something else going on with their body - maybe a serious disease, maybe a minor allergy, but regardless, the last thing we want to do is discourage people from getting checked out by their doctor.

Regarding statistics. Yes, the large majority of people who are diagnosed with colorectal cancer are over 50 years of age. 90% of people who are diagnosed with colorectal cancer are over the age of 50. But that statistic is changing and not in the right direction.

Colon and particularly rectal cancer are on the rise in people under the age of 35. It is dramatic increase that has researchers stumped - there are theories about our worsening diets, lack of exercise, other environmental factors as well as it being caused due to a hereditary mutation.

Colorectal cancer cases in people under the age of 35 are expected to increase by 90% by the year 2035, if the current trend continues. This is alarming and what's tragic, is that because screening isn't recommended until age 45 or 50 (depending on where you live and who issues the guidelines, also family history will lower that), people who are under 35 are getting diagnosed at later stages.

If you look at all colorectal cancer cases globally, "only" 3-5% of them are caused by a hereditary (inherited) mutation or syndrome that caused the colorectal cancer to develop. However, if you look at the people who are under age 35 and diagnosed with colorectal cancer, it is no longer 3-5%, it is nearly one-third (33%) of these young patients have a hereditary disease that caused them to develop colorectal cancer.

This is why it is so important to have conversations with your family to know if there is a history of any cancer, but as it relates to colorectal cancer, if you have a first-degree or second-degree relative that had cancerous polyps removed - that is important information for you to share with your doctor. Your risk is just as high as it would be if they died from the disease - but thankfully through screening or early detection, they did not die from the disease. Depending on the type of polyps and other factors, your risk will vary, but this is information your doctor needs to know.

The Global Colon Cancer Association has a free virtual conference with presentations available for viewing on-demand for free at gccacongress.org

We have 10 different topics, from biomarkers to clinical trials, to navigating survivorship, to prevention and screening, etc. Young-Onset Colorectal Cancer is a topic and we have five presentations and an intro video from a young-onset survivor. Some of these presentations are from medical professionals, others from patient advocacy groups and survivors.

gccacongress.org/presentati... is where you'll find the young-onset presentations and we encourage people to view them.

I recognize this is a very long post and my intent here is purely to educate that colorectal cancer in people under the age of 50 does happen, and yes cases do occur in teenagers. Yes, thankfully it is not a larger percentage of colorectal cancers that are occurring in people under 50, but the numbers are showing that more and more young people are getting colorectal cancer. If you have symptoms or a family history of colorectal cancer, it is so important to get checked out by a doctor. Again, it may not be colorectal cancer, it may be nothing life-threatening. It may be something minor but through working with their medical professional they can find relief from their symptoms. Many people who post here that are sure they have colorectal cancer end up being diagnosed with Irritable Bowel Disease (not the same as Irritable Bowel Syndrome), Colitis, Crohn's Disease, or other digestive disorders. While what got them to the doctor was fear of colorectal cancer, they are now being treated for a condition or disease that they were only diagnosed with because of their concern over colorectal cancer.

If you are experiencing any symptoms that are out of the ordinary, (not just talking bowel habits) the smart thing to do is to speak to a doctor who oversees your general health.

If you have GI issues, you may already be under the care of a gastroenterologist and should speak with them.

With so many uncertainties in life, things beyond our control, and diseases that have zero screening methods, colorectal cancer is a disease that we have the power to largely eliminate this disease in the not-so-distant future. There are very few diseases you can say that about, particularly in the world of cancers.

Thank you to our members who are so kind to take the time to respond to posts from people who are very anxious and concerned about potentially having colorectal cancer.

My plea is that while it very well could be nothing life-threatening or not be colorectal cancer, they should still see a doctor.

If you have any questions or comments, please let's keep this dialogue going.

Sincerely,

Nicole Sheahan

President, Global Colon Cancer Association

[Paulol]

Thanks a lot