Save a Life: Be a Community of Advocates

Colorectal cancer incidence rates in those under the age of 50 have been rising- so much so that predictions expect colon cancer cases to increase by 90% and rectal cancer cases to increase by 124% in young adults by 2030.
- Fight Colorectal Cancer

An Intolerable Forecast of Future Incidence

The significant rise in the last 25 years and the forecasted near-future growth in incidence for colon and rectal cancer in young adults (20-49) is truly startling...worrying...and honestly is downright unacceptable. 

As a demographic, young adults are vulnerable to undetected growth of colorectal polyps and tumors.  While overall incidence across our entire population tends to go down year over year, most likely due to screening from procedures like colonoscopies. 

Conversely, the growth of incidence within young adults is coupled with the fact that a significant majority of young adults do NOT have ANY form of access to CRC screening (at least under the specific definition of screening), and as a result – they, themselves, yourselves, your sisters, brothers, daughters or sons can only advocate for THEMSELVES when SYMPTOMS arise...Remember, once symptoms arise, CRC is no longer the easily treatable condition that it is when found as a polyp or early stage tumor.

So... I am clearly just a little passionate about this.  "How can I help?", you may ask?  I'd like to dive into a discussion today that I can only hope and pray might make an impact in my...your...OUR communities.  

Looking at the data holistically, the average person knows at LEAST one person who is a survivor, is currently fighting, or has lost their battle with colorectal cancer.  Based on the odds we're seeing these days - if you don’t already know someone with CRC, you will by 2030.  As we near that date, it's more and more likely that the person you know who is going to face CRC will be a young adult.

Are people looking into this trend?  Are we as a society researching the cause of this properly?

Prevalent CRC nonprofits and where does Love Your Buns fit?

As we begin the establishment of our nonprofit, Love Your Buns, we are actively working to identify where our ideal niche is.  What is our mission?  What gaps are we trying to fill?  Part of answering those questions has to come from a detailed review of the nonprofits that are already active and making a difference.  But are they addressing the vulnerable young adult rise in incidence?

There are many very helpful organizations that have been established with core goals around ridding the world of CRC or improving the lives of those who battle it.  Two of the most prominent CRC organizations at the national level that we would like to highlight are Fight Colorectal Cancer (Fight CRC) based out of Springfield, MO and Colorectal Cancer Alliance based out of Washington, DC. 

Both of these organizations deserve a more detailed explanation of their efforts, but in the interest of brevity, below are their published key initiatives and strategic goals:

 

Fight CRC

  • Patient Resources

  • Research

  • Advocacy & Political Change

  • Awareness

  • Philanthropy

 

Colorectal Cancer Alliance (CCA)

  • Patient support

  • Prevention

  • Research

FightCRC.png
 
CCA Logo_3Color_PMS.jpg
 
 

The good news about both of these organizations, is that YES, they are indeed paying attention to young onset CRC. And YES they do indeed give a great deal of focus to providing information to the public and the medical community that SHOULD lead to more patients and doctors having the right discussions at the right time about the symptoms they are facing that might indeed be CRC...

Yes…even if you are only 23...

Why didn’t I find it when I needed it?

That said, with all of the materials made available and the national exposure from both of these highly respected organizations to medical professionals - why didn’t I have the resources at my disposal before my diagnosis to help me realize what I was facing?  During the period I was experiencing so many abnormal symptoms – why didn't my Google or WebMD searches result in quality information on my screen from Fight CRC or CCA?

There are obviously many possible reasons for this.  Maybe I was asking the wrong questions. Maybe it is the simple reality that change can be slower than we may want or need it to be.  This seems to be especially true in the medical community. 

It may also be that this very important information around the links to even the obvious symptoms (bleeding), the biggest red flags (blockages, major changes in bowel habits), or likely even more so, the rare signs-of-symptoms that COULD associate with CRC (for example, the presentation of benign lesions or skin changes in various hereditary disorders tied to CRC) are not being properly disseminated explained to health care providers that act as the first line of defense for young adults (such as ER physicians or primary care physicians).

It’s also not information that is making it out to social media, to advocates, family or friends. We all need the education.

Colorectal Cancer Symposium

Jarod and I, along with two of our LYB board members, attended the Sanford Colorectal Cancer Symposium last week here in Fargo.  We were lucky to be able to attend this event as one of our board members mentioned she found this symposium only after deep sleuthing and extensive web page digging.  Unfortunately, there was no marketing of this symposium to current patients or survivors as it was targeted for doctors, nurse practitioners, nurses or other medical professionals. 

Immediately after agreeing as a board to attend this symposium regardless, I reached out to an educator at Sanford to voice my concern on the lack of inclusion of the patient community.  Patients, survivors, families, need to continue to be educated and have the opportunity for dialogue and easily accessible support/survivorship resources. 

In any case – we were thankful that the event was being put on by Sanford – and we were very eager to attend, learn, ask questions, and start connecting with this community who just might be able to help us further our mission.  At the symposium we were able to connect with a number of individuals including an advocate from Fight CRC and a representative from the American Cancer Society, among other great folks.  We're very excited to explore next steps with many of them!

VERY Young Adult CRC Survivors

At the tail end of the symposium, two young adult colon cancer survivors spoke and bravely told their emotional stories.  They both shared what it was like during their numerous attempts to see their doctors, to hopefully receive some form of diagnosis, but ultimately instead face the refusal of their providers to believe that their symptoms warranted further testing.  It was PAINFULLY clear from their emotional stories - they HAD to be their own advocates.  If they had NOT – their situations would obviously have gone from dire, to worse.

So...wow...doesn’t this ring true with many of us in the young onset CRC crowd?  (Yes indeed it does, me included)

I don’t believe anyone was able to hold back the emotion during the thirty-minute discussion.  These women were only 23 years old at diagnosis!  They discussed how their diagnosis completely changed their perspective on their young adult life and what therapy and surgeries now mean for their future.  What does cancer therapy take away from you?  For one, it frequently causes early menopause, or at a minimum, prevents any chance of having children in the future.  23...years...old. 

Here were two young adult CRC speakers – and they raised some great points about the real world prevalence of young adults facing this.  Most of the data reviewed over the event was regarding an older than 50 years old population.  A population that HAS the defense of largely reliable screening options like colonoscopies.  What about the young adults?  And at the symposium, there were AT LEAST four total young adult CRC survivors. 

People, we have to do better!  This disease is so preventable if caught early.  I urge you today, to share this post, talk to a family member, talk to a friend, talk to a stranger.  ADVOCATE for yourself.  ADVOCATE for those that you love. 

Get Advocating - like right now…

This is a dire situation.  And it is NOT tolerable. How can you help?  Share this blog post on social media.  Talk with family and friends about the symptoms, warning signs and red flags.  Educate yourself, and talk with your local medical providers. 

Should you not be met with respect and if you have symptoms and you are not believed by your doctor, seriously get a second, or third option if you must.  Don't stop!

Reminder of Symptoms

  • Rectal Bleeding – seriously, you SHOULD NOT bleed from your rectum for a long period of time.  And even if you think you have hemorrhoids?  GET CHECKED.  Don't take no for an answer!

  • Changes in Bowel Habits – this can be any major change in your stools from your long term normal, if the changes are sustained over a period of time.  For rectal cancer this is especially true if your stools become thin or if you face repeated bouts of extreme constipation or blockage...GET CHECKED.  Don't take no for an answer!

  • Cramping Pain, Discomfort – these symptoms can be associated with many conditions, but particularly if you experience these with the above symptoms...GET CHECKED.  Don't take no for an answer!

  • Unexplained Weight Loss – this is literally NEVER a good thing.  If you lose substantial weight and you aren't trying – GET CHECKED.  Don't take no for an answer!

SAVE A LIFE: Be a community of advocates!

If you have any interest in helping our nonprofit in ANY way, please do reach out to us at sara@loveyourbuns.org.  We’d love to hear from you!

Love Your Buns is a non-profit initiative aiming to remove stigma and improve awareness around rectal cancer, its prevalence and its symptoms. A growing epidemic in young adults, rectal cancer is easy to remove if caught early, however due to a variety of reasons, young adults are not likely to seek screening options like colonoscopies. This gap in screening is leading to more advanced disease at diagnosis and more challenging and strenuous treatment. We're working to Educate young adults to increase awareness of the signs and increasing prevalence of Rectal Cancer and to Empower informed decision making and Improve quality of life in Survivorship.
Donate to Love Your Buns Today

Sara DCampComment