Deborah Nagle, M.D.

Cancer treatment options can be confusing, especially when initial treatments are not as successful as anticipated. This Ask The Doctor question comes from a reader who was diagnosed with colon cancer at a young age and is now in the process of gathering information about future treatment.

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Get Your Rear in Gear reader: At age 33, I was diagnosed in 2007 with colon cancer that had metastasized to my lungs; about nine very small bilateral spots.  After 12 rounds of Oxaliplatin, Evastin and 5FU they were gone.  I followed up with CT scans every three months.  The spots started growing again.  I did another round of chemo in June 2009 for about eight months.  This time I had allergic reaction to Oxaliplatin so I only had about three doses of that.  I just continued with Evastin and 5FU until January.  My last CT scan in June showed they are growing again.  My oncologist wants to start chemo again in August.  This time he wants to add Irinotican (which I have heard is horrible).  I went to my thoracic surgeon and he doesn’t want to do surgery because the spots are bilateral and too small and are responding to chemo. Do you have any new suggestions or treatment ideas that I could consider?

Dr. Nagle: Joan, surgery and chemotherapy are the mainstays of treatment for colon cancer.  Unfortunately, there are too many lung nodules for surgery.  Given the pattern of disease (both lungs and 9 small lesions), the only real option at this point is chemotherapy.  Most medical oncologists will utilize all standard regimens before trying something more experimental.  Irinotecan has been shown to be effective.  Everyone responds to chemo a bit differently, so it may be worth a try for you.

Dr. Deborah Nagle is the Chief of Colon and Rectal Surgery at Beth Israel Deaconess Medical Center, and member of ASCRS. She is also a member of the Harvard Medical Faculty Physicians and an instructor in surgery.

To help lower the incidence of HAI, Kimberly-Clark Corporation has launched a campaign called Not on My Watch to educate providers and patients about preventing infection. Their goal is to eliminate these preventable illnesses and their often tragic consequences. Kimberly-Clark produces paper products, many of which may be used to prevent infection. A spokesperson for Kimberly-Clark explained their mission.

Patients, their caregivers, and health care professionals need to educate themselves on the dangers and what can be done to protect people from getting sick while in the very place they went in order to get well.

To get more information about protecting yourself while in a healthcare environment, visit the Not on My Watch website which provides helpful articles and downloads for both patients and healthcare providers, or download the information below which helps guide patients through procedures which will help them prevent infection when receiving medical treatment.

• Flu? Not On My Watch (brochure) A Patient’s and Parent’s guide to Influenza Prevention
• Flu? Not On My Watch (flyer) A Patient’s and Parent’s guide to Influenza Prevention

Photo: Lululemon on flickr

The regular practice of yoga helps cancer survivors sleep better, says a new study by the University of Rochester Medical Center. As part of the research, a customized yoga program was developed which combined both Hatha and restorative forms. Hatha yoga includes asanas (postures) for all levels and breathing exercises designed to balance the mind and body. Hatha yoga generally moves at a slower pace making it perfect for the beginner and for those recovering from cancer treatment. Survivors at the University of Rochester who took part in the yoga program reported better sleep, less dependance on sleep medication, and a better quality of life than those who did not.

According to WEbMD Health News, “sleep problems and fatigue are among the most common problems experienced by cancer survivors. Approximately 80% and 95% of patients report fatigue during and after treatment, respectively, and as many as 80% and 65% experience sleep problems during and after therapy.” While sleep medications can be used by many cancer survivors, a wholistic approach to these sleep problems is welcome news.

In addition to improved sleep, yoga provides significant benefits for anyone, regardless of cancer status. Benefits of yoga include:

• increased flexibility
• decreased stress
• improved strength
• improved posture
• increased range of motion in the joints

Karen Mustian, PhD, MPH, assistant professor of radiation oncology and community and preventive medicine at the University of Rochester Medical Center, told WebMd that cancer survivors “looking for this kind of benefit should probably look for gentle Hatha or restorative yoga taught by a well-qualified instructor registered with the Yoga Alliance.”

The Yoga Alliance provides a list of accredited schools and instructors. For those visiting a class for the first time, especially following cancer treatment, be sure to arrive early and let the instructor know that you are new. A brief dialogue with the instructor about your concerns and/or limitations will help the instructor to tailor a program to meet your needs.

Deborah Nagle, M.D.

This month, an Ask the Doctor question comes from the wife of a cancer survivor who is concerned about her husband’s post-surgery symptoms. As part of our Ask the Doctor program, readers send questions related to health, wellness, colon cancer prevention, screening or treatment. Our panel of experts responds. This month, Dr. Deborah Nagle, M.D., Chief of Colon and Rectal Surgery at Beth Israel Deaconess Medical Center at Harvard University answers a question about the common side effects of colorectal cancer surgery.

Got a question?  Click here to ask the doctor.

Get Your Rear in Gear reader: My husband had a lower anterior resection for stage II rectal cancer 3 years ago, and since the surgery the can not urinate on his own. He has a neurogenic bladder and needs to self catherize 5X’s a day. Is this a common risk of the surgery?

Dr. Nagle: Neurogenic bladder is an uncommon, but recognized complication, after pelvic surgery with or without radiation.  Many patients, especially men who have enlarged prostate, will experience temporary urinary hesitancy or retention (inability to void).  For most patients, this will resolve within a few days or weeks of surgery.  Unfortunately, a very small number of patients, both men and women, will have long-term urinary dysfunction.

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“Carol Larson takes an awful experience and partners it with an adventure of a lifetime. The writing is clever yet simple and gives insight to the reader about things they didn’t even know to question. It is an intimate look into her life as she deals with cancer resulting in an ostomy and one that she easily transitions into useful information to help others who might be on a similar journey. This book would be great for caregivers and anyone struggling with a physical issue; it was a pleasure to read. She has the most current and up-to-date resources listed as well.”

Each chapter of When the Trip Changes, A Travelers Advisory to Colorectal Cancer focuses on a different component of the cancer experience. Topics include colonoscopy, diagnosis, surgery, and chemotherapy. At the end of each section, Larson includes a comprehensive checklist to help patients and caregivers navigate through the different stages of the process. With a foreword by medical oncologist Kathleen Ogle, the book is both entertaining and an excellent resource for those who find themselves on an unexpected journey.

Carol Ann Larson has authored three books about colorectal cancer, When the Trip Changes, Positive Options for Colorectal Cancer, and Life Lines-Keeping Your Head above Water. Last year, Carol received a national “Breaking Boundaries Award” from the Colorectal Cancer Coalition (C3) and is currently the newsletter editor for the Ostomy Association of the Minneapolis Area (OAMA.)

• When the Trip Changes was revised in 2009 with additional information and resources for patients and survivors, and updated content about Carol’s path through survivorship.

Book Details:

Paperback: 149 pages
Published: 2009 (earlier versions published in 2003, 2007)
ISBN-10: 0974600806
ISBN-13: 978-0974600802

The book may be purchased through the Colon Cancer Coalition for $15 which includes shipping and handling. Call 952-426-6521 to purchase using a credit card or send a check for $15 to 8009 34th Ave, Suite 360, Bloomington, MN 55425.

Neal Meropol, M.D.

A recent article in the Wall Street Journal reported that oncologists treating newly diagnosed colon cancer patients often do not comply with recommended protocols.  The article examined the issue of how to evaluate physicians who treat cancer patients.  According to a report by UnitedHealthcare, some patients with colon cancer receive tests and treatments that they shouldn’t, and others don’t get the recommended treatments. The evaluation by UnitedHeathcare was part of a larger study to analyze the cost effectiveness of a variety of cancer treatments for breast, lung and colon cancer.

But for newly diagnosed colon cancer patients, the article also raises concerns about how to be sure that they are receiving optimal care.    At the time of diagnosis, very few patients are familiar with protocols or research into the best treatment of their disease.  Simply navigating the complex abundance of information can be overwhelming.  In an effort to empower patients, noted oncologist Neal Meropol sat down with GetYourRearinGear.com to discuss the Wall Street Journal report, and to provide suggestions on how patients can work with their physicians to receive the best possible care.

A much sought-after speaker, Dr Meropol is extensively published on topics that include gastrointestinal cancer therapeutics, patient decision making, healthcare economics, and bioethics. In addition to his work in developing clinical trials for patients with gastrointestinal cancer, Dr Meropol conducts research in patient decision-making and doctor-patient communication, with particular interest in barriers to clinical trial participation.  Currently, Neal Meropol is Section Chief in Medical Oncology at University Hospitals Case Medical Center & Case Western Reserve University and Associate Director for Clinical Research at Case Comprehensive Cancer Center, in Cleveland, Ohio.  After completing his undergraduate work at Princeton, Dr Meropol earned his medical degree at Vanderbilt Medical School and completed his fellowship in Hematology and Oncology at the University of Pennsylvania. Dr. Meropol serves on several national committees, including the NCI Colon Cancer Task Force (Chair), ECOG Developmental Therapeutics Committee (Chair), the ASCO Cancer Research Committee (Chair-elect), and the ASCO Cost of Care Task Force.

Get Your Rear in Gear: The Wall Street Journal article reported a relatively high non-compliance rate for physicians treating newly diagnosed colon cancer patients.  Should those numbers raise concerns for colon cancer patients?

Neal Meropol: The pie chart in the Wall Street Journal article suggested that ultrasound is underused in patients with colon cancer.  But those data are only relevant in patients with rectal cancer.  There was no explanation in the article as to the guidelines being evaluated, and thus there is potential for misinterpretation.

Get Your Rear in Gear: For newly diagnosed colon cancer patients, are there standard tests that every patient should receive?  Or is testing evaluated on a case-by-case basis?

Neal Meropol: In general, we individualize treatment for each patient at the time of diagnosis.  But there is a battery of tests that we generally recommend as a matter of protocol:

• CT scan of the chest, abdomen and pelvis
• CEA blood test

In addition, we recommend that all patients receive a complete exam of the colon with a colonoscopy because some patients will have more than one cancer in the colon at a time.

After surgery, patients should have a well-structured surveillance plan to detect new cancers arising in the colon, and more importantly to detect a recurrence (spread) of the original colon cancer.  For patients who have been diagnosed with a new cancer, a colonoscopy is recommended one year after the initial treatment and less frequently thereafter.  In patients with a strong family history of colon cancer, the frequency of colonoscopy may be every year.

Additionally, other post-surgery treatment should include a CEA blood test and a physicial exam every 3 months for the first two years, then less frequently until year five.  It’s important to detect recurrences early, as some patients can still be cured, even if their colon cancer comes back in another organ, such as the liver.

“It is important to note that these are guidelines.  The frequency of tests depends on the features of each particular patient.”

Get Your Rear in Gear: Are there any other tests that patients ask about after treatment?

Neal Meropol: Patients often wonder about CT scans versus PET scans after treatment.  Typically we recommend that a CT scan be obtained once a year for several years in patients who are at high risk for recurrence.  With regards to PET scans, in general we prefer CT scans over PET scans, although PET scans can be helpful when there is uncertainty.

Get Your Rear in Gear: What types of questions can a newly diagnosed patient ask his/her oncologist to be sure that they are receiving optimal care?

Neal Meropol: For patients who have colon cancer that has not spread to another part of the body, these are important questions to ask:

1. Will I be cured?
2. What is the chance that my cancer will come back?
3. What schedule of tests do you recommend over the next five years?
4. Do I need any additional treatment besides surgery?
5. If yes, what is the benefit of that treatment and what are the side effects?

For patients who have a cancer that has spread to another part of the body, often patients and doctors don’t realize that sometimes it can be cured with aggressive surgery and chemotherapy.  The key questions for those patients include:

1. Can this still be cured?
2. If not, why not?

Get Your Rear in Gear: When is it appropriate to get a second or even third opinion?

Neal Meropol: Colon cancer is one of the most common cancers.  Therefore, most oncologists are very experienced in treating it.  However, sometimes clinical trials may not be available in your community, so you may choose to seek an opinion from a provider who performs clinical trials.  For patients who have to undergo a complex surgery, such as the removal of liver metastasis or rectal surgery, a patient may want to get an opinion from a center that performs many of those procedures.

“If a patient is ever uncomfortable or uncertain about the information they receive from a provider, a second opinion never hurts.  But I tell my patients to get a second opinion that matters.  Speak to an oncologist who specializes in the treatment of colon cancer and who conducts clinical research.  There are many practices that participate in clinical trials.  This is often a sign of quality for community practices.”

Get Your Rear in Gear: Are there steps that friends and family can take to help a patient in finding the best treatment for colon cancer?

Neal Meropol: A friend or family member should go with the patient to his/her appointment armed with a pen and paper.  The caregiver can:

• Write out questions ahead of time
• Check off each question as it is answered.
• Ask the doctor to clarify points that might not be clear at first.
• Consider bringing a tape recorder to review the dialogue at a later date.

There is so much information at first.  It’s always a good idea to take along a buddy who can help you understand and make sense out of all of this information.

Read more about:

• CEA blood test
• Colonoscopy screening age
• CT colonography
• CT scans
• Colonoscopy

Do you have a question that you would like to see answered by our panel of physicians?  Ask the doctor by clicking here.

Eve Grossman-Bukowski experienced pain while on a flight to Iowa

The stories of cancer patients often inspire hope and courage, particularly when the disease hits those who are young and active. But those stories also offer important information about physical symptoms that warrant medical attention. Recently, WebMD published a list of warning signs most often ignored by women. The list included persistent and unexplained pain, blood in the stool, and unexplained lumps. Each of these symptoms is common among the narratives of survivors included in the Colon Cancer Coalition’s Stories of Hope and Forget Me Nots.

Survivor Barb Rosen experienced chronic and persistent abdominal pain which eventually landed her in an emergency room. She met with a long list of medical specialists before she was diagnosed with colon cancer. Stacy Ostenson found blood in her stool while on a family vacation. A friend recommended that she get it checked immediately, which she did. Stacy underwent surgery and chemotherapy for colon cancer. Eve Grossman – Bukowski experienced symptoms while on a flight to the Iowa caucus. Her unbearable pain landed her in the ER upon arrival and in surgery a week later. She finished treatment for cancer in July, 2008. Kim Freitag passed away in July, 2009 after a lump in her abdomen led to a diagnosis of colon cancer and almost a year of grueling treatment. All of these women were “too young” to be concerned about cancer, and colon cancer in particular.

The rate at which cancer is diagnosed increases with age, but cancer can occur in individuals of all ages. Sometimes youth gives an illusion of protection, explains Mary Daly, MD, oncologist and head of the department of clinical genetics at Fox Chase Cancer Center in Philadelphia.

“Younger women, for instance, tend to ignore symptoms that could point to cancer. “They have this notion that cancer is a problem of older people,” Daly told WebMD. And they’re often right, but plenty of young people get cancer, too.

With the suggestion of “a healthy balance between denial and hypochondria in mind,”  WebMD.com lists the following symptoms which deserve attention.

• Unexplained weight loss
• Bloating that is daily and persistent
• Breast Changes
• Unusual mid-cycle bleeding
• Skin changes
• Difficult swallowing
• Blood in the colon
• Coughing up blood
• Simultaneous depression and severe abdominal pain
• Mouth and/or tongue changes
• Persistent and unexplainable pain
• Lumps near the armpit or in the neck
• Fever that is not related to flu or other infection
• Chronic unexplained fatigue
• Persistent cough

For more information on these symptoms, or to read the full article, visit 15 Cancer Symptoms Women Ignore at WebMD.com

Visit the Colon Cancer Coalition Stories of Hope and Forget Me Nots to read more about those who have been affected by colon cancer.

Click on the video below to see the many faces affected by cancer

In mid August, the Colon Cancer Coalition helped promote efforts by the American Cancer Society’s Cancer Alert Network to bring the real voices of cancer survivors, caregivers and concerned citizens to the ears of legislators. A blog post at GetYourRearinGear.com, gave readers information about submitting their own voice messages to the organization. Now two months later, ACS CAN has completed a compilation of the meaningful messages left by Americans who want to see all individuals protected from catastrophic debt after surviving cancer. Each message is a heartfelt plea from a mother, a daughter, a son, a father, a neighbor, a coworker, or as as one woman puts it “people like myself.”

“No one should have to choose between their life savings and saving their life.”

Watch the video and share it with your friends.

Jaimie Mattes modeled for the 2009 Colon Club Colondar

Jaimie Mattes is a remarkable 39-year-old colon cancer survivor.  I say remarkable, because Jaimie has not been silent with his recovery.  He has been loud. In 2008, he won the Get Your Rear in Gear Advocacy Award from the Colon Cancer Coalition.  He also modeled for the 2009 Colondar and volunteered for a Minnesota Cancer Task Force.

Even as the president of the Colon Cancer Coalition, I never thought that my own story would be on the same page as that of a cancer survivor.  I have never suffered the agony of battling cancer.  But over the last month, I’ve been writing about my personal journey back to healthy living as I try to get my rear in gear.  I was honored to sit down with Jaimie recently to talk about his diagnosis and treatment and about the healthy changes he has made in his life as a result of his experience.

Jaimie Mattes during our interview

Jaimie’s decision to get his rear in gear came after his cancer experience.  He had lived a fast-paced life as a sales manager for a hotel chain, eating meals on the go and taking no time to exercise. Healthy eating and exercise were simply not a part of his life, although he admired his wife, who Jaimie says, worked out for both of them.

But Jaimie’s life changed after his diagnosis and treatment of colon cancer.  His diagnosis came just one week prior to his 32nd birthday.  There were no lymph nodes affected and physicians were able to remove the cancer, but he was left with a colostomy bag and six months of chemotherapy.  Jaime knew his life would never be the same.

First, Jaimie’s diet changed.  After years struggling with ulcerative colitis, Jaime had already learned to cut back on eating fruits, red wine and nuts.  Now avoiding those foods was imperative.  But Jaimie learned to enjoy eating.  No more whip it down the pipe meals for Jaimie.  He takes the time to taste life.  Every once in while, he enjoys ice cream.  He is also 40 pounds lighter at his own decision – not the cancer’s decision.

Fitness has also been an important part of his recovery.  In 2008, I was one of the lucky people who watched Jaimie cross the finish line at both the Rochester and Twin Cities Get Your Rear in Gear 5k events.  At the end of the Rochester race, he held up his hand, as if to hold off the friends and family who wanted to congratulate him on his accomplishment.  This was a moment that he had to experience alone.  Jaimie has no memory of that finish line experience, but eventually his beautiful family greeted him with open arms. Both myself and Colon Cancer Coalition Executive Director Cindy Iverson had to wait to get our hugs.  He probably never knew how much his strong finish meant to those of us who watched him finish the 5k in less than 30 minutes, but for us his accomplishment represented the gift of life.  Months later Jaimie ran the Twin Cities Get Your Rear In Gear 5K, this time finishing four minutes faster than his previous time.

When I asked Jaimie what Get Your Rear in Gear meant to him, he talked about the kinship of his fellow cancer survivors, and about the family experience.  To Jaimie, Get Your Rear in Gear is the opportunity to be with family and celebrate life.  Jaimie feels at home with cancer survivors and the families who love someone affected by colorectal cancer.

See all of the 2009 Colon Club Colondar models at Colonclub.com

Tell five friends to to stand with the American Cancer Society for better health care

Share your cancer survivor story with the American Cancer Society

Source: American Cancer Society