Sweet sixteen like no other


suzanne lindley blog image

Do you remember that sweet sixteen feeling? The whole world seemed to be at your grasp. Excitement filled the air with the anticipation of that first date, learning to drive, going to the prom, and even getting a job.

Sixteen years. 192 months. 5,844 days. That is the amount of time that has passed since I heard three of the most terrifying words of my life, "You have cancer."

Thankfully, the landscape of cancer has changed in these years. Treatment has transformed. Advances in personalized medicine, chemo and immunotherapy, radiation, targeted therapies like SIR-Spheres, RFA, SBRT and CyberKnife among others, surgery and clinical trials continue to bring me, and others like me who are living with advanced cancer, one step closer to a cure. Multidisciplinary treatment and a team approach are the norm and not the exception. There is great reason to hope.

Patients have changed, too. We are more informed, inquisitive, pro-active and vocal. Gone are the days when the words colon and rectum had to be uttered in a hushed whisper behind closed doors. Awareness is all around thanks to the elbow grease, creativity, and reach of some great organizations and advocates. We are no longer in the dark. These days, we want to know about our diagnosis. We ask questions, share with each other, and support one another. Less and less are we alone.

Because of cancer, my family met friends that without cancer, we would have never met. Together, we forged our way through the hurdles of cancer, embracing each other through fragile moments, tortuous losses, and inspiring encounters. We experienced more amazing memories than many ever dream to see. We found significance in the often neglected, yet miraculous gift of now. A new normal emerged.

We endured. Good fortune followed us through the nightmare of colon cancer; showing us that strength could appear when situations were bleak. Our moments together and the memories we made were cherished. The counting of years in spite of cancer savored.

We have savored sixteen years in the midst of cancer to be exact. There is nothing like that "sweet sixteen" feeling. It's a once in a lifetime celebration that, thankfully, I am celebrating again today. It is the sixteenth anniversary of my diagnosis with cancer. Once again, I feel that feeling. The world is at my grasp and it will be a year of great anticipation, celebration, and work.

Help me celebrate! Take just 16 seconds of your day today. If you know someone affected by cancer – or perhaps someone who just needs some cheer –a message on Facebook, tweet, or text will do. Share a positive quote. Send a picture. Let that person know that you care. Remind your friends to have a colonoscopy. You can brighten a day. You may even save a life.

There are 16 candles on my cake and I'm celebrating sweet sixteen like never before! Celebrate with me today! Just 16 seconds...

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.


Could cholesterol-lowering drugs work against colorectal cancer?


Elizabeth Whittington blog image

A recent study published in the Journal of Clinical Oncology found that statins, drugs used to lower cholesterol levels by blocking a key enzyme, improved survival in patients with non-metastatic colorectal cancer. The class of drugs is one of the most widely used in the country, with nearly half of Americans aged 65 and older taking them. The medications have a pretty good safety profile and are relatively inexpensive, but doctors aren't yet ready to begin prescribing the drug to patients with colorectal cancer.

The study looked at a group of more than 7,500 participants based in England with newly diagnosed stage 1-3 colorectal cancer. Researchers found that statin use, when taken for at least a year after the initial cancer diagnosis, was associated with longer rates of survival.

Earlier studies may explain why statins have an effect on colorectal cancer, including the drug's effect on cell apoptosis ("cell suicide"), inhibiting cell growth and angiogenesis (the process of supplying blood and nutrients to a tumor) and enhancing the immune response--processes that would impact cancer cells. The same cellular process by which statins block cholesterol production also may impact certain processes used in producing cancer cells and their growth. It could be that statins interfere with the cancer's ability to metastasize or possibly enhance the effect of chemotherapy.

Of course, more follow-up and randomized studies will need to happen before statin's effect on cancer can be confirmed and it makes its way into clinical practice. As with any treatment, risks and benefits will need to be weighed for each individual patient before prescribing, but it does look promising.

Thomas Cartwright, a colorectal cancer specialist with Florida Cancer Affiliates and a member of CURE's advisory board, says that while these latest study results are interesting, he doesn't think any physician would prescribe statins to a patient with colon cancer patient based on this single study.

"There are many potential confounding factors and limitations in a study like this," he says. "Statins can have side effects, as well, and a similar study showed statins may increase the risk of diabetes."


New screening test approved for colorectal cancer


Elizabeth Whittington blog image

This week, the Food and Drug Administration approved a new colorectal cancer screening test called Cologuard, a stool-based test. While there are other stool-based screening tests, Cologuard is the first to use a particular non-invasive method in detecting colorectal cancers and potentially cancerous polyps.

The study results, which led to the approval, were recently published in the New England Journal of Medicine. You can read the full article here.

The trial looked at more than 10,000 individuals who were at average risk of colorectal cancer and between the ages of 50 and 84 years old. The participants used either Cologuard or another type of stool test called a fecal immunochemical test. Cologuard detected 92 percent of colorectal cancers and 42 percent of advanced large polyps, compared with 74 percent and 24 percent, respectively. However, Cologuard did have a higher number of false positives, incorrectly identifying people who were negative for cancer or large polyps called adenomas (87 percent versus 95 percent).

An individual's physician would need to order the test, but the kit is mailed directly to the person's residence. The person collects the sample and mails the kit back to the company using a prepaid mailer. Results are sent to the physician, who then contacts the patient for follow-up.

The test looks for biomarkers in the stool sample that indicate the presence of cancerous cells and blood. As stool moves through the large intestine and rectum, it absorbs cells from large pre-cancerous polyps. By testing the stool using known biomarkers, Cologuard can detect blood cells and polyp cells that contain colorectal cancer-related mutations in its DNA. While the test accurately detects potential cancer, individuals who have a positive result would need to undergo a colonoscopy to confirm the polyp or cancerous mass.

Current guidelines for colorectal cancer, which include fecal occult blood tests, sigmoidoscopy, and colonoscopy, do not include the new screening test. However, that may soon change. The Centers for Medicare and Medicaid Services issued a proposed national coverage determination for the test and is expected to be issuing a coverage ruling before the end of the year. Updated guidelines may follow.

Unlike sigmoidoscopy and colonoscopy, the Cologuard test is not invasive and does not require the prep process that many people find uncomfortable. The new test may ultimately improve the rates of colon cancer screening and hence lower cancer incidence over time. The test's maker has set the price for the test at around $600.

Study authors mentioned in the NEJM article that offering a choice among tests may improve the uptake of screening. "A non-invasive test with a high single-application sensitivity for curable-stage cancer may provide an option for persons who prefer noninvasive testing."

Routine colorectal cancer screening is effective at lowering rates of colorectal cancer and death from the disease. Several groups, including the U.S. Preventive Services Task Force and the American Cancer Society, recommend people of average risk begin screening at age 50. Individuals with a family history of colorectal cancer or a medical history that increases the risk of colorectal cancer should start screening at an earlier age.

Updated 8/15/2014: One of our readers posed the question on when the test would become available. We reached out to the test's maker, Exact Sciences, and received this statement from CEO Kevin Conroy: "Exact Sciences is able to take orders for Cologuard today in the U.S. The company is completing the expected and appropriate packaging and logistical activities that are normal immediately following FDA approval. The company should be able to process orders in the very near future."


Growing old is empowering


suzanne lindley blog image

Get up. Get ready. Go.

Life moved in a routine that was fast and furious before cancer. Time never allowed for moments to really stand still, free and easy, just to enjoy. We were too busy planning for the rest of our lives when colon cancer, like a thief in the night, stole our perceived certainty of the future. At 31, we put our dreams on hold. We mourned the fact that I would die. We slowed our pace and began to savor each day.

During this decade and a half of dancing with cancer, I have experienced a future that I once thought had been snatched by colon cancer. Instead, I've gladly joined the ranks of a growing population of long-term advanced cancer survivors. With increased cancer research and the development of new therapies (now 10 available for colon cancer where once there was only one) and treatments (like Cyberknife, RFA, SIR-Spheres and the list goes on), we are creating our own survival statistics. It hasn't happened overnight, but instead with the slow and steady ticking of the clock that culminates in so many rich experiences. Life and death, grief and joy, sadness and happiness, trial and tribulation. It's hard to reminisce these past 15 birthdays with cancer and to fully absorb all that has happened in this time. I barely remember life without cancer but know that many of my most treasured memories have been held more tight and dear because of it.

The age of time seems to tell only the number of years I have lived but little about the milestones and memories made along the way. Age shares not the number of cherished memories: together times picking blackberries, walking in the morning dew, of the heavenly smell of honeysuckle or the crunch of autumn leaves beneath our feet. It doesn't embody the milestones hastened by cancer or the rush to slow down and simply grab the muchness of now.

Aging in spite of cancer does, however, provide the wisdom that borrowed time is indeed a splendid gift. The need to "get up, get ready, and go" has long been forgotten; consciously replaced with the power of "holding fast, hugging often, and hoping always." Here I am, celebrating 47 years of life and feeling that growing old - if you consider 47 old - is empowering.

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.


Increased screening leads to decrease in colorectal cancer


Elizabeth whittington blog image

A new report reveals that incidence and mortality rates of colorectal cancer have been drastically reduced in the past 10 years. The article, "Colorectal Cancer Statistics, 2014" was published in CA earlier this month and reveals that there has been a steady drop in incidence rates over the past decade, most notably in individuals age 65 and older.

In the late 40s and early 50s, colorectal cancer was the number one cause of cancer death in the United States. Lung cancer would eventually surpass it, but many other factors over the past several decades have helped drive down colorectal cancer rates and deaths, including improvements in diet and lifestyle, increased aspirin use, the widespread adoption of routine colorectal cancer screening and advances in treatment. Experts predict that mortality rates could drop by 50 percent by 2020.

While there is much good news regarding the drop in incidence and mortality, as we dive a little deeper into the data, there is still much that needs focus.

Racial and socioeconomic disparities still persist. Death from colorectal cancer in black men is still 50 percent higher than in whites. What's interesting is that this wasn't always the story: In the 1960s, risk of death from colorectal cancer was actually lower in blacks than whites. Around the 1970s and 80s, incidence of colorectal cancer in black men began increasing while rates in whites began to drop. This can be traced to adoption of routine screening, stage at diagnosis, social and environmental factors and possibly diet.

Colorectal cancer increased in adults younger than 50. Experts believe that changes in diet and lifestyle may be a contributing factor. Focusing on reducing obesity in this group could be key.

Understanding cancer statistics helps researchers track patterns, which in turn can help identify strategies to reduce cancer incidence and deaths. With these new numbers, we learn that while we're making progress, there is certainly reason to celebrate. However, we also discover that we have much work to do, including continuing to build on improving colorectal cancer screening rates, engaging individuals who are at risk, including racial and socioeconomic groups and those who are underinsured and uninsured. We also have to examine why those under 50 appear to be developing colorectal cancer at increasing rates. Do we lower the age of routine screening, focus on diet and lifestyle changes or promote awareness of other risk factors, such as Lynch Syndrome?


Fight Colorectal Cancer calls on Congress


suzanne lindley blog image

The depths of my senses are on edge. I hear the whipping wind outside my door while the sunshine pours through the window at my back. I have only to turn around in my seat to see the dust dancing in small clouds of gray across the yard while the blue sky kisses the back edge of the pasture. The horses are kicking up their hooves; enjoying a day of play in not hot weather, but just right temperatures. They circle the trees; first trotting then loping beyond my sight. Within this day filled with blue skies and sunshine there is more normalcy than I could have ever imagined this time 15 years ago, in great part due to the efforts of Fight Colorectal Cancer.

Back then, I was only months into a diagnosis of stage 4 colon cancer and the world seemed to be falling apart at the seams. I don't even remember if there was such a Colorectal Cancer Awareness Month. Those were the days when coping with colon cancer was new, and I cried much more than I laughed. There was despair, anguish, anger and frustration. Questions and doubts hung heavily in the air. All that had seemed perfect just months before felt dangerously close to disappearing. I looked at my children and fell to pieces; not knowing how to hold on from one minute to the next. I would grab Ronnie's hand and cry with the realization that in old age it would probably not be me that was sharing his golden years. It took the help of old friends, my family and new friends to help me struggle through the fear and loneliness to slowly accepting the new normal that crept in and quickly encompassed every minute of each day.

How thankful I am for the army of goodwill that surrounded me...both from the spirit and warmth of organizations to the endless list of names that were rarely farther than a phone call away. Today, many of those angels are marching on Capitol Hill with Fight Colorectal Cancer. I'm usually there but spending time this year with my bubbly 6 year old who has just finished up her Spring Break. Although I'm not physically walking the Halls of Congress or personally knocking on the doors of my elected officials (Representative Hensarling, Senator Cruse and Senator Cornyn), I am making phone calls and sending letters.

This year, I'm proud to say that Fight Colorectal Cancer has made an even bigger impact than ever before at Call on Congress! The first two days advocates were briefed on important issues in colorectal cancer and learned how to communicate with legislators as well as hearing from experts across the United States who discussed research funding, emerging science and the current state of policies that impact colorectal cancer. Advocates around the country also helped to create Blue Star States across the nation!

Today is the biggest day of all, where advocates go to the Hill and visit their elected officials. They share their voices and empowering stories; ensuring the importance of colorectal cancer and establishing it as a national priority. It is here that my voice, your voice and the voices of those who may not even know about colorectal cancer are represented. It is because of these very special advocates that my children and your children may soon live in a world where colon cancer is a cancer of the past. To learn more about what advocates are accomplishing or to be a part of Call on Congress next year, visit

Preventable, Treatable, Beatable!!

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.


Lynch Syndrome Awareness Day: March 22


Elizabeth whittington blog image

On March 22, communities around the world will recognize Lynch Syndrome Awareness Day. While some may scoff at the multitude of "awareness" events throughout the year, this may be one that could have wide-ranging benefits.

We've learned that this hereditary genetic mutation (LS), also known as hereditary nonpolyposis colorectal cancer (HNPCC), may be the cause of a higher percentage of colorectal and other cancers than previously thought. Approximately 3 to 5 percent of all colorectal cancer cases can be traced back to LS. And it's estimated that 600,000 to 800,000 people in the U.S. may have LS, but only 5 percent are ultimately tested and diagnosed with the syndrome.

This year it seems especially fitting to recognize LS Awareness Day as the National Comprehensive Cancer Network, a group of 25 of the world's leading cancer centers, announced a recommendation at their annual meeting that nearly all patients diagnosed with colorectal cancer should be screened for LS. (There is an option to forego testing on patients older than 70 who do not have other risk factors.) The recommendation is included in the latest set of clinical guidelines issues by the NCCN. You can view the guidelines here, but access requires site registration, which is free.

Because people diagnosed with LS have an 83 percent chance of colorectal cancer, it's important that testing be done early so they can take advantage of preventive measures to reduce their risk of cancer, such as increased screening, surgery or chemoprevention drugs. LS can also greatly increase the risk of bladder, pancreatic, gastric, ovarian and other cancers. For patients who have been diagnosed with cancer, a confirmation of LS can help guide treatment, follow-up and surveillance for other cancers.

Lynch Syndrome International is keeping a running track of events around the world and the U.S. on its Facebook page to help spread the word. In response, the awareness of LS has brought about a conversation that could have as much impact as the "Katie Couric Effect" had on colorectal cancer screening.

A friend's husband was recently diagnosed with colorectal cancer. Barely 40 and a family history of the disease, my immediate thought was Lynch Syndrome. It's disappointing that LS screening wasn't a priority for all patients with CRC earlier, as he could have been more closely monitored for the disease and preventive actions could have been taken. But screening for LS may still benefit him through treatment and survivorship, as well as his children and other family members.

To help learn more about LS, several studies are underway, including this one from the Ohio Colorectal Cancer Prevention Initiative. All patients diagnosed with colorectal cancer in Ohio will be screened for LS to help provide recommendations for high-risk individuals, as well as genetic counseling.

With a recent report out that routine screening and advances in treatment have significantly reduced colorectal cancer incidence and mortality, it seems that awareness and action for those with LS may be the next frontier.


Preventable, treatable and beatable!


suzanne lindley blog image

March is Colorectal Cancer Awareness Month and this year means I'm well into 15 years of living with stage 4 colon cancer. I'm amazed, more than ever, at the progress that has been made and continues to be made every day. Just a short decade ago colon, rectal and even colonoscopy were words whispered in a hushed tone hidden behind an open palm. It was a cancer that caused embarrassment and was definitely not a "sexy" cancer. There was no pretty pink or feminine qualities included. When I told people that it was what I had, most would look at me with shock or simply keep their lips pursed shut with a shake of their head.

The early months of my diagnosis were filled with fear and angst. Every treatment held dread and side effects were difficult. As I continued to live and grab the "muchness" of life at hand, we slowly started to LIVE again; learning to fully embrace the time that we were so fortunate to borrow.

Being diagnosed 19 years before I should have even needed a colonoscopy was a terrible shock. Even now, I'm still four years from that magical milestone of 50. Yet I've beaten the odds, having grasped the one and only treatment available at my initial diagnosis to literally "growing up" with each new discovery.

There are now multiple chemotherapy and biologic agents that I've benefited from including 5-FU, levamisole (no longer used), Leucovorin, Irinotecan (FOLFIRI), oxaliplatin (FOLFOX), Xeloda, Avastin, Erbitux, Vectibix, Stivarga, Zaltrap and clinical trials that offer even more agents around the corner. There have been targeted treatments as well that have helped to keep me alive including SIR-Spheres, radiofrequency ablation, external beam radiation, and CyberKnife.

I've also been fortunate to see what was once a diagnosis discussed as a death sentence become one that often can be downstaged to no evidence of disease or NED. There is an increased focus on treating metastatic (cancer that has spread) and the survivorship issues that are faced by those after treatment ends. I'm proud to say that I've been there for much of the advocacy and effort to help make that happen.

I've met countless survivors along my journey who were diagnosed in their late 20s and early 30s. Still others have either been diagnosed earlier in the disease process or have had access to treatment and care that I'm confident is due to the awareness that we've shouted from the rooftops.

As March continues to unfold, make colon cancer your priority. Know your family history. Share it among family members. Learn the warning signs and pay attention to them. They include:

> Blood in your stool or bleeding from your rectum
> Unexplained weight loss
> An ongoing bloated feeling, cramping, or pain in your abdomen
> Constant tiredness or weakness
> A change or alternating bowel habits - such as diarrhea, constipation or narrow stools
> Unexplained anemia
> Feeling that your bowel does not empty completely
> Jaundice (yellowish color of the skin and/or white part of the eye)

If you have symptoms, a family history or are 50 years of age or older please have a colonoscopy! It could save your life or the life of someone you love. Remember, colon cancer is preventable, treatable and beatable! Let's do it!

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.


Wider biomarker testing warranted in colorectal cancer


Elizabeth whittington blog image
When KRAS mutations were found to thwart a response to EGFR-targeted therapies, such as Erbitux (cetuximab) and Vectibix (panitumumab), it was a practice-changing discovery in colorectal cancer. (You can read more about colorectal cancer treatment and the use of personalized medicine in CURE here.) Research presented at an oncology meeting held earlier this month on additional mutations may result in yet another change in the way we treat colorectal cancer.

About 40 to 50 percent of colorectal cancers harbor mutations in a particular part of the KRAS gene called exon 2. (An exon is a genetic piece of information that codes for a protein. If the protein isn't coded correctly, it could turn on cancer growth.)

Researchers have learned that patients with colorectal cancer that contain a KRAS exon 2 mutation are not helped by EGFR-targeted therapies. The plus side is physicians can now test for this biomarker to identify these patients, shielding them from the toxicities and cost of a treatment that wouldn't work, and instead focus on other therapies, such as anti-angiogenic drugs.

Recent studies lend more evidence that it is not a single mutation that affects a tumor's response to Vectibix, but an even wider range of mutations.

A phase 3 study presented at the American Society of Clinical Oncology's Gastrointestinal Symposium analyzed the response of metastatic colorectal cancers to second-line chemotherapy with or without the EGFR-targeting drug Vectibix. Tumors were analyzed for KRAS mutations in exons 1-4 and NRAS exons 1-4, collectively known as RAS mutations.

Although the majority of mutations were in KRAS exon 2, an additional 18 percent of tumors were found to harbor one of these other mutations. (You can view the abstract here.) Patients with these additional mutations, much like those patients with a KRAS exon 2 mutation, did not benefit from the addition of Vectibix.

In essence, a patient's tumor could test negative for the mutation in KRAS exon 2 and be prescribed Vectibix. However, if the tumor contains one of these other mutations, the treatment would still fail to work. While this study confirmed what researchers have seen in other studies in newly diagnosed advanced colorectal cancer, this was the first large study that showed a similar effect in second-line therapy.

"Based on all the data that we generated, it's clear that today we need RAS testing instead of KRAS exon 2 testing before embarking on an anti-EGFR treatment in patients with metastatic colorectal cancer," said lead researcher Marc Peeters, of Antwerp University Hospital in Belgium, as he concluded his presentation to other gastrointestinal oncologists at the meeting.

Experts expect that expanded RAS testing will soon become the standard of care in treating patients with metastatic colorectal cancer.


More bad news for smoking


Elizabeth whittington blog image
It's been 50 years since the initial release of the Surgeon General's Report on Smoking and Health. This report provided a scientific basis for us to work toward reducing the public health impact of tobacco use. Since then, 30 additional Surgeon General reports on tobacco have been released.

Today's report, "The Health Consequences of Smoking--50 Years of Progress: A Report of the Surgeon General, 2014," adds new evidence that smoking is bad for us, including that it increases the risk of liver cancer, colorectal cancer, diabetes and rheumatoid arthritis. Secondhand smoke increases the risk of stroke. The report notes that while the evidence is suggestive, it's insufficient to conclude breast cancer risk increases with smoking and exposure to secondhand smoke. However, smoking increases the risk of cancer death. And in cancer survivors, it increases the risk of dying from other diseases.

Measures that have been put into place since that first report have more than halved smoking rates. The public's view on smoking has changed drastically. Strategies to reduce tobacco use have included smokefree laws, taxes on tobacco, smoking cessation aids and support and public awareness campaigns. Those measures continue to become more powerful and prevalent.

The report also notes the success of smoking cessation strategies, including nicotine replacement therapy, such as gums, patches, and even electronic cigarettes, which contain nicotine, but not tobacco. During the past few years, electronic cigarette use among current cigarette smokers increased from 9.8 percent to 21.2 percent. While it may be used by smokers in places that don't allow tobacco smoking, I think it's safe to say some current smokers are using the tool as a cessation device. But is it working? Opponents consider it a "gate-way drug" to tobacco use and another marketing tactic by tobacco companies to get people hooked on nictotine, but its use in cessation should be explored. Studies to examine health implications are also needed.

The report also contains a consumer booklet, "Let's Make the Next Generation Tobacco-Free," which aims to helps parents talk to their children about tobacco use.

You can read the full report here.


More Entries