My friend Janet asked me last week if there were still things I wished I could do, any unfinished things on my bucket list. I thought for a minute before I said, “No.”

I’m sure Janet expected something like a wish to visit the Grand Canyon or take that cross-country sleeper train trip I’d always promised myself. What I really wanted to say, the first thing that came to mind: “I want to be strong enough to go upstairs and do a load of laundry.” Inconsequential as it seems, climbing the stairs to do laundry is where my head went when asked about my bucket list.

I never had a formal bucket list; instead, I created long-term goals. Despite all the goal-maker’s advice, mine were never written down, and were flexible, but I did get to most of them. I didn’t make yearly resolutions; I made training goals for my dogs. I set goals to pay off credit cards and become debt-free (and did it). I set a goal to pay off my condo in 10 years (and did it).

When I was in my late 30s, I put myself on course to retire at 55. I missed that one by a year – on purpose. Courtesy of a layoff, I was able to leave corporate life at the end of 2010, a month after I turned 55. So I guess I did retire, even though my official payout date was a year later at 56, when severance ended.

And eight years ago, when I started traveling to New York City for cancer consults and then treatments, I joined Amtrak rewards to earn travel points and make my many train trips pay off. I thought I’d save money on a few free tickets, but since Amtrak rewards don’t expire, I just let the points pile up until I had over 18,000.

In my head, I created the ideal train trip – east to west coast by sleeper train, taking my time to see parts of the U.S. and Canada that I’ve never visited. I would see relatives in the upper penninsula of Michigan, take in the Canadian rockies from a double-decker train car, enjoy a leisurely hop on/hop off trip down the Pacific coast, and then hang a left and cross the desert and Sierras to visit my uncle in Tuscon. I’d angle back up to see the Grand Canyon, and then cut back across the country through St. Louis and Chicago to come back home. I built a couple wish-list routes.

In 2011, I altered my dream train trip a bit, and plotted out a cross-country road trip from Syracuse to Colorado. The English Cocker Spaniel Club of America national specialty was in Denver in April. Self-employed, I had the time. Collecting good checks, I had the money. Driving a two-year-old Jeep, I had a car in great condition for the trip. I’d have to go by car because Amtrak still doesn’t allow dogs, but I could live with that modification. It was the perfect year to go.

Perfect – until my February checkup, when my NYC doc discovered an inoperable recurrence of my stage IV rectal cancer. This time, I had lung tumors and disturbing, painful tumors in my lower spine. My local onc confirmed the bone mets in my spine and additional mets in my hipbones. I was put on a custom weekly chemo regimen with pain control as job #1. No more six week cross-country road trip – I needed the weekly treatments.

“Chemo,” I cursed, “can really mess up a summer vacation.” But realizing that there would always be tomorrow, I gave up the national specialty trip and pushed through chemo from April through November. I felt better, too – not better enough to drive to Colorado, but good enough to travel to NYC three times for more treatments, to continue writing, to go to lunch with my friends, and to earn my dog Madison’s Rally Excellent title. The tumors were shrinking. I could always use those Amtrak rewards another time. I hoped.

Throughout my treatment, I’ve always warned other patients to be prepared. Things can change very fast when you have stage IV colorectal cancer. And I was prepared – I thought – in the important ways like a health care proxy and a will and advanced care statement. I’d signed the papers to donate my body to a local hospital for research. I know that my brothers and sisters know what I want at the end of my life.

What I wasn’t prepared for was the speed of the timeline when it actually hit me.

On  Nov. 20, 2011, I showed Madison at the Salt City dog show circuit, where she placed first three out of four days in Rally Excellent and earned her RE. I delivered Madi to the kennel after her class, went home and packed for a quick trip to NYC. I was supposed to have a one-day radio-frequency ablation procedure on two lung mets. Two weeks later, on Dec. 7, after a collapsed lung, sepsis, and chemo port removal, I came home – wobbly, weak, and needing another week of home-delivered IV antibiotics.

I never made it to my family’s various Christmas parties. My pain level, which had escalated in the hospital, was at several percocets a day by Jan. 6 when the first of two attempts at a new port was placed. I did six weeks of chemo, two with an open port incision. I drove myself to my chemo appointments, but cancelled most other outings. I felt like crap, although the pain was getting more controllable.

Then, the CT at my January 23 checkup in NYC showed that my right kidney – the only kidney I have that’s truly functional – was seriously compromised. The scan was so scary that my onc wanted to immediately admit me to Memorial Sloan Kettering (MSKCC) to have a kidney stent placed. I managed to get her to let me consult with my MSKCC urologist uptown, who reassured me that while I needed to watch it, the kidney issues could resolve on their own and I wasn’t in immediate danger. Instead of a hospital admission, I took the  3:45 train home to Syracuse, with a list of things to watch and report.

New port attempt #2 was February 21. After the second port was placed, I finally started feeling like my old self. I was finally able to walk every day, went back to having impromptu lunches with friends, and put the final details on my annual lobbying trip to Washington, D.C. with Fight Colorectal Cancer. On March 5, I flew to the capital, saw lots of old friends and made some new ones, conferenced and lobbied for three days. I started to feel sick the morning I flew home.

On March 15, I was too weak for my scheduled chemo treatment. My onc’s nurse practitioner and a consulting onc admitted me to the hospital with a potentially blocked kidney. March 16, a local urologist and nephrologist placed a nephrostomy tube to unblock it. March 22 I drove myself home, again very weak and mostly inactive, but absolutely desperate to be out of that hospital.

My chemo (Erbitux and 5FU) was really only controlling the pain from my bone mets, and keeping a light check on some of the lung tumors. On March 28, my local oncologist and I agreed that I was too weak and my working, but stented, right kidney at too much risk to try to continue chemo.

I was done.

I asked if it was time to consult with hospice, and both Kathy, the NP, and Jeff, my onc, agreed. Meantime, we decided that pain control was job #1 again – and I moved from active treatment to best supportive (palliative) care.

I have active disease in my lungs, spine and hips and in a soft tissue tumor external to my spine. And I was stopping treatment – with active disease.

Two weeks ago, I recognized I was too weak (and too medicated) to drive to a doctor’s appointment, and cancelled it. For the last three weeks, for all practical purposes I’ve been what most performance scores consider bedridden. I can get up to use the washroom, clean up. I can get myself something to eat if it doesn’t take too long to make it –  I have a 15 minute limit before I need to lay down again. Sometimes if the pain is running high and the pain meds haven’t kicked in yet, I can’t make 15 minutes.

Looking back, it took less than a month – March 15 to April 6, when I cancelled that first doctor’s appointment – for me to morph from full-time functional adult who could drive herself around to full-time cancer patient who is mostly bedridden.

There is no more room in the bucket for big dreams like cross-country train trips. I feel a pang watching tv shows set in NYC, knowing that I’ll likely never visit my favorite city again. It aches to see puppies and kittens and know I’ll never own another one. I’ve never tasted foie gras, or truffles, or uni. I never got to visit the Food Network. I’ll never meet my friend Shawn in person or visit her in Seville, Spain.

And perhaps the hardest thing – I ran out health and activity before I ran out of treatment options. My body quit on me before my brain has. I’m not strong enough to meet even the compassionate release criteria for the newest drug for colorectal cancer. My ECOG activity score is around a 4. My kidney function is too impaired. In the greatest cancer race, hanging on until the next new thing becomes available, I didn’t quite make it to the finish line after eight years of trying.

Simple things are my goals now – and simple things are what I miss most. I miss spontaneous restaurant lunches with my friends. I miss being able to shop for fresh food every other day. I miss being strong enough to walk outside. I miss my dog, Madison, who I sent back to Virginia to be with her co-owner because I’m no longer healthy enough to care for her.

It’s sobering to realize that if I want to sort through my files, someone has to move the cabinet closer to my daybed because I can neither move it nor carry the loose files back and forth. It’s overwhelming to realize that if I want to open my daybed, I need help. It’s frustrating to have to ask someone else to do laundry because I can’t safely climb the stairs to get it done. Knowing that I may never be independently mobile again – that’s what I miss the most in this phase of non-treatment. More strength and mobility – that’s what’s on my bucket list these days.

That and, well, I decided that at the very least, I could take care of a little desktop aquarium and a betta. Petsmart is delivering the aquarium, filter, gravel and betta food tomorrow. A friend has already agreed to pick out my new fish…and maybe my sister and brother-in-law will take the tank when the time comes. Until then, it’s a small goal that I can reach, one that will remind me every day of brightness, and color, and movement – even when I can’t always accomplish those things.

Our guest blogger, Pat Steer is a stage IV rectal cancer patient who was diagnosed in 2004. She stopped active treatment on March 28, and is focused on living the time she has left as well as she can. You can read her blog Life Out Loud: Surviving Cancer and Living Life.

The short answer is probably not. Most colorectal cancer develops as we age without any notable family history.

But about one in five people with colorectal cancer will have a close family link.

Getting to know that risk is important.

It may mean earlier or more frequent screening. It definitely means talking to your family, learning about Aunt Mary’s uterine cancer, Dad’s polyps, or Grandmother’s stomach problems when she was 35. It means telling them about your own cancer or polyps.

The National Colorectal Cancer Roundtable has a new website to help you search and share your family history with Family PLZ.

Family PLZ shows you how to put a family health history together and what to do with the information.

Some resources for compiling your family health history gathered by Family PLZ

• The Surgeon’s General’s My Family Health Portrait is an ideal tool to use at family gatherings to build a family health history.
• Genetic Alliance can help you assemble and print a personalized booklet Does It Run In the Family that you can share with your family and doctor.
• Mayo Clinic has tips for getting reluctant family members to share medical history, as well as what information to collect.
• Fight Colorectal Cancer has a list of questions to ask yourself to determine your risk for colorectal cancer.

What Does Your Risk Mean?

• Average risk people have about a 6 percent lifetime risk of getting colorectal cancer. That risk can double or go up as much as four times depending on how many relatives you have colorectal cancer, how close those relatives are to you, and their age when they were diagnosed according to a chart from the American Cancer Society.
• Everyone should be screened beginning at age 50, but family history may mean earlier or more frequent colonoscopy screening. The Colon Cancer Prevention Project has a detailed screening tip sheet that helps make screening plans, intended for doctors, but helpful for patients as well.
• For more information about inherited colorectal cancer which can significantly increase your risk watch Inherited Colorectal Cancer: Does It Run in Your Family, a Fight Colorectal Cancer webinar with Dr. Henry Lynch.

Time to splash Blue all over!

Today is the first day of March and the first day of Colorectal Cancer Awareness Month.

March is full of Blue Awareness, nationally and locally. Spread the message that colorectal cancer is preventable, treatable, and beatable.

Don’t hide your story! Tell your family, tell your friends, tell your coworkers. Get them screened, teach them the symptoms. Get them involved.

To get you started:

• Wear Blue tomorrow, and tell people why. Dress in Blue Day is March 2.
• Learn the key messages advocates will be giving members of Congress on March 7 when they Call on Congress.
• If you are 50 or older and haven’t been screened make an appointment for your colorectal cancer screening right now! March 8 is National Colorectal Cancer Screening Day.

March is here:

• Know the symptoms.
• Know your risk.
• Take action.

Before 1980, colorectal cancer death rates were actually higher for whites than African Americans.

But, as rates began falling in the 1980′s for both blacks and white patients, decreases for whites were substantially greater than those for blacks.  Between 1985 and 2008, mortality rates for whites with colorectal cancer fell 40 percent, while black rates declined by less than 20 percent.

The decrease in black death rates was higher than those for whites at every stage at diagnosis, but strikingly different when cancer had spread to distant sites.   For whites whose colon or rectal cancer was first found at stage IV, death rates fell by more than 30 percent, while black rates declined by less than 5 percent.

Over time, five year survival after regional and distant diagnoses grew for white patients but remained essentially unchanged for blacks.

Anthony Robbins, MD, PhD and his team from the American Cancer Society analyzed information from the Surveillance, Epidemiology, and End Results (SEER) Program looking for changes in colorectal cancer mortality rates by race and stage at diagnosis from 1985 through 2008.  They found that 60 percent of the disparities between black and white rates were due to late stage diagnosis.

They reported decreases in colorectal cancer death rates between 1985-1987 to 2006-2008 by stage:

Once cancer had spread regionally to lymph nodes or to distant organs, five year survival was lower in blacks than whites. Survival didn’t change significantly over time for blacks over time for regional disease, although there was a small increase that began in 2002 for metastatic cancer.

Percentage of patients living five years or more after diagnosis:

In discussing their observations, Dr. Robbins and his group looked for possible reasons for the disparities that continued even as death rates dropped and survival improved.  Among factors they considered were:

• Less screening for blacks than whites.  Although screening rates have improved for both blacks and whites, colorectal screening for blacks continues to lag behind.
• Differences in treatment for both colon and rectal cancer.  Blacks were less likely to receive adjuvant chemotherapy for stage III colon cancer or surgery for rectal cancer.  They also were treated less often at high volume, high quality cancer centers and got modern chemotherapy less often.
• Although there may be biological reasons for disparities, lack of access to prevention and quality care is more likely, Robbins writes.  In clinical trials where all patients had the same treatment, there were no differences in outcomes between blacks and whites.

Dr. Robbins and colleagues concluded,

In conclusion, colorectal cancer death rates have decreased for each stage of the disease in both whites and blacks since 1985, although for every stage, the decreases were smaller for blacks, especially for distant-stage disease. In the most recent time period, disparities in regional-stage and distant-stage mortality rates accounted for approximately 20% and 60% of the overall black-white disparity, respectively. Efforts to reverse the overall racial disparity in CRC mortality must target late-stage disease.

In an editorial accompanying the article, Electra Paskett, PhD, from the Ohio State University wrote,

In summary, disparities in colorectal cancer outcomes exist, and we know why. It is time to start addressing these disparities so that good health can be something everyone can experience.

Dr. Paskette stressed the importance of:

• Improving screening rates among blacks by making sure insurance covers screening for everyone and that health providers have systems in place and incentives to recommend screening to their patients.
• Making sure that there are not financial barriers to prompt, quality treatment when cancer is diagnosed.
• Using patient navigators to improve use of preventive screening and ensure access to prompt quality care.
• Enrolling more minority patients in clinical trials, including using families and communities to improve accrual.

SOURCES:  Robbins et al., Journal of Clinical Oncology, Early Release, December 19, 2011.

Paskett, Journal of Clinical Oncology, Early Release, December 19, 2011.

What Can Advocates Do?

Patient advocates can play an important role in narrowing the gap in colorectal cancer death rates between blacks and whites in the United States. They can:

• Work to make sure that the full range of colorectal cancer screening options are available to everyone without discrimination due to insurance status, income, race, ethnicity, or the community where they live.
• Insist that every American have full access to insurance coverage and a means to pay for quality evidence-based cancer care.
• Raise awareness of the value of screening to prevent colorectal cancer in ways that are meaningful to minority communities.
• Advocate for funding and programs to provide patient navigation.
• As research advocates, increase enrollment of minorities in cancer clinical trials.

This morning, the President signed into law the biggest transformation of our health care system in decades.  The law includes a number of provisions that will help individuals diagnosed with colon or rectal cancer.

Although many of the provisions of the new law are phased in to take effect gradually until the entire law is implemented in 2018, some benefits will be available immediately.

Highlights of the provisions that will benefit individuals people facing cancer treatment include: prohibiting insurance companies from dropping patients who become sick; eliminating lifetime and annual limits on coverage; prohibiting insurance companies from denying coverage because of pre-existing conditions; and limits on on out-of-pocket expenses.

You can review a chart developed by C3 with key issues affecting colorectal cancer prevention and treatment that are part of the health care reform legislation.

While historic, enactment of this new law is just one step in an ongoing process.  Even after all the provisions in the new law take effect in 2018, many Americans may be newly insured but will still fail to receive the right treatment at the right time.  The Colorectal Cancer Coalition continues to support research to help develop new treatments and to support efforts to increase awareness about the importance of early detection and screening.

BENEFITS IF YOU HAVE BEEN DIAGNOSED WITH COLORECTAL CANCER:

• Beginning immediately, health insurance plans cannot drop you or reduce your benefits just because you become sick, a process called rescission.
• After January 1, 2014, insurance plans will not be able to deny coverage or charge higher premiums if you have a pre-existing condition.  Until that time, people with pre-existing conditions will be able to find affordable insurance in special high-risk pools supported with federal funds.  For people with inherited colorectal cancer who worry about testing for a genetic condition, the law specifically includes genetic information among the health conditions for which there cannot be discrimination.
• Six months after the the law is enacted, insurance companies can no longer place lifetime limits on healthcare coverage, nor can they impose restrictive annual limits.  In 2014, all group and individual plans must eliminate annual limits.  Even if you need expensive cancer care, you will no longer need to worry about your insurance refusing to meet those costs.
• Depending on your income, there will be limits on the amount of money you need to pay out-of-pocket for health care for you and for your family each year.
• In 2014, uninsured people will have access to several new options including higher income limits for Medicaid and participation in an American Health Benefit Exchange.  The exchanges will clearly outline costs and benefits of each health care policy so consumers can make  informed choices about care.  Subsidies will be available to keep costs affordable.

BENEFITS IF YOU WANT TO PREVENT COLORECTAL CANCER:

• If you are privately insured through your employer or the insurance exchanges, preventive services are covered fully without your having to meet a deductible or pay a co-pay.
• If you are on Medicare, cost-sharing for preventive screenings will end on January 1, 2011.  In addition, there will be no additional co-payments if a polyp is discovered and has to be removed during the screening exam.  Medicare will also pay for an annual check-up.
• If you are on Medicaid preventive services will be provided at no cost.

OTHER IMPACTS ON COLORECTAL CANCER PREVENTION:

While not specifically addressing colorectal cancer, wellness and prevention of illness are addressed in several new initiatives established and funded by the law including:

• Establishment of a National Prevention, Health Promotion and Public Health Council to coordinate prevention, wellness, and public health strategies.
• Establishment of a Prevention and Public Health Fund to expand and sustain funding for prevention and public health programs, as well as task forces on Preventive Services and Community Preventive Services to develop, update, and disseminate evidenced-based recommendations on the use of clinical and community prevention services.
• Grants to support evidence-based community prevention and wellness programs that strengthen prevention activities, reduce chronic disease rates and address health disparities, especially in rural and frontier areas.  Funding for five years beginning in FY 2010.

If you have questions about how the new law will affect you, the New York Times has an interactive site where you can look at your personal impact whether you are insured or uninsured and whether your current insurance is on your own, through an employer, or via Medicare or Medicaid.

Photo by Mara Zemgaliete

Colorectal cancer patients with early stage disease were 30 percent less likely to die from cancer and 20 percent less likely to die at all if they took aspirin regularly after their diagnosis.

Benefit was even greater for those who began taking the medicine for the first time after their diagnosis.

However, only the group whose tumors tested positive for COX-2 (cyclooxygenase2) benefited from aspirin.  

COX-2 is an enzyme that produces inflammation and pain, and aspirin blocks its activity.  About two-thirds of colon cancers express COX-2.

Data about aspirin use was collected every two years from participants in the Nurses Health Study (NHS) and the Health Professionals Follow-Up Study (HPFS). Regular aspirin use was defined as taking a 325 milligram tablet at least twice a week.

Almost 1,300 people in the two studies were diagnosed with stage I, II, or III colorectal cancer and were followed after surgery.

For all patients, regardless of COX-2 status, after a median follow-up of almost 12 years:

• 15 percent of patients who took aspirin regularly had died from colorectal cancer compared to 19 percent of non-aspirin users.
• 35 percent of aspirin-users had died from any cause compared to 39 percent of non-users.
• All patients who took aspirin were 29 percent less likely to die of colorectal cancer and 21 percent less likely to die from any cause than non-users.
• Those patients who began taking aspirin after their colorectal cancer diagnosis were 47 percent less likely to die from colorectal cancer.
• Patients with COX-2 expression in tumor tissue had a 41 percent reduction in risk of dying from colorectal cancer if they were aspirin users.
• In those without COX-2 over-expression, aspirin made no difference in risk of death from colorectal cancer.

The study team concluded,

Regular aspirin use after the diagnosis of colorectal cancer is associated with lower risk of colorectal cancer–specific and overall mortality, especially among individuals with tumors that overexpress COX-2.

Andrew Chan, MD, MPH, gastroenterologist from Massachusetts General Hospital and Harvard Medical School, who led the study said,

While previous studies by our group and others showed that aspirin and other non-steroidal anti-inflammatory drugs reduce the risk of developing colorectal cancer, this study is the among the first to show that aspirin can also improve survival in patients who have already been diagnosed with colorectal cancers. Moreover, the benefit appeared to be especially strong among patients with cancers that express COX-2. This is an important first step toward developing targeted approaches to improving patient outcomes.

Previous research has shown that aspirin reduces the risk of new colon polyps in patients recovering from early stage colon cancer.

In an editorial accompanying the JAMA article, Alfred Neugut, MD, PhD, professor of medicine and epidemiology at Columbia University, wrote,

A major recent priority in clinical oncology has been to develop biomarkers for prognosis and to predict response specific to interventions.The specificity of the response of colorectal cancers to aspirin for patients in whom tumors over-expressed Cox-2 suggests that this potential future treatment comes with its own ready-made predictive biomarker.

There is currently no commercial test on the market that tests for COX-2 in tumor tissue.  However, testing is available at academic cancer centers and research facilities.

SOURCE:  Chan et al., Aspirin Use and Survival After Diagnosis of Colorectal Cancer, Journal of the American Medical Association, Volume 302, Number 6, August 12, 2009.

What This Means for Patients

While this is good news for people with stage I, II, or III colon or rectal cancer, it is too early to make a widespread change in how colorectal cancer is treated after surgery.

Discuss using aspirin with your doctor before using it — either on a short or long term basis.

Researchers didn’t randomly assign some patients to take aspirin and others to use a placebo or sugar pill.  Instead, they asked people in the study to tell them about how much aspirin they remembered taking every two years. There was no uniform reason for taking aspirin or uniform daily or weekly dose.

Stronger, randomized studies are important before recommendations for aspirin use for all early stage patients can be made.

Aspirin can cause bleeding in the stomach and gastrointestinal tract, sometimes serious enough to be life-threatening.

Because it may interfere with blood clotting, aspirin should be avoided  before surgery, during chemo, and before a colonoscopy.  Tell your doctors if you are taking aspirin.

“Symptoms and Risks” fact sheet (PDF)
Available for free download in our online store

People come to an initial medical work-up for colon or rectal cancer from different places. They may have had a suspicious polyp or cancer found during a routine screening. They may be experienced symptoms that might be caused by colorectal cancer. Getting an accurate diagnosis is critical because treatment for colorectal cancer depends on the diagnosis. For example, treatment for colon cancer is different than treatment for rectal cancer, and treatment for cancer which has spread outside of the colon is different than treatment for cancer which is limited to the colon. Getting an accurate diagnosis can take time and many different tests. It may require surgery, and examination of surgically-removed tissue to determine whether the cancer has spread. This process can involve several health professionals including:

• The gastroenterologist who will perform a colonoscopy if it has not been already done and remove tissue for biopsy. The gastroenterologist may remove suspicious polyps for pathology or, if they are large, leave them in place for later surgical removal.
• Pathologists who will examine biopsies under the microscope to identify precancerous cells or cancer (malignancy.)
• Radiologists who will perform CT-scans or other x-ray tests to see if the cancer has spread to other parts of your body.
• A general surgeon or colorectal surgeon who will give you a physical examination and ask about your medical history, order blood tests, review reports from gastroenterologist, radiologist, and pathology, and help decide on an initial treatment plan.
• If necessary, a medical oncologist who deals with chemotherapy treatment or a radiation oncologist may be involved at this point or they may join the treatment team after surgery. Specialized surgeons may also be called in to examine you if there is a possibility that the cancer has spread beyond your colon.

Choosing a medical team is an important initial step in getting an accurate diagnosis, especially if rectal surgery is involved. Work with your medical team to make sure that your evaluation, diagnosis, and staging are done carefully and thoroughly.. Get a second opinion if there is uncertainty about issues such as what tests are necessary, if surgery is the right first step, and whether staging is accurate. A second opinion at a large cancer center, particularly a National Cancer Institute designated cancer cancer or a member of the National Comprehensive Cancer Network can be valuable even early in the diagnostic process.

• Locate an NCI Cancer Center in your state.
• Locate an NCCN Comprehensive Cancer Center

Where Can You Go for More Information?

American Cancer Society How is Colorectal Cancer Diagnosed? Cancer.Net When the Doctor Says Cancer along with a podcast can help you learn questions to ask about your cancer and its diagnosis and how to understand and manage the information you get from your doctor.

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