Cancer Treatment and Survivorship

Test Results From Your Doctor - No News Is Not Always Good News

2007-11-14T18:03:00.000-08:00

You would think that being diagnosed with cancer was bad enough. But what if you discovered that a “communication glitch” resulted in a delayed diagnosis of your cancer? A delay that resulted in your being diagnosed as a Stage IV cancer patient with a 5% life expectancy at 5 years instead of Stage I with an 85% life expectancy. How would you feel? Angry? Disgusted? Disheartened?

This isn’t a hypothetical question. According to a 2007 study of California primary care physicians, approximately 20% of patients “may not have received timely or appropriate follow-up on positive (abnormal) test results.” Remember, primary care physicians are the first line of defense against a life threatening condition like cancer. The study, conducted by the California Healthcare Foundation, concluded that such follow up delays “can lead to complications and delays in treatment.”

Don’t think that cancer patients get any special treatment when it comes to failure to diagnose or delay in diagnosis. In a 2004 Journal of General Internal Medicine article, Communication Factors in the Follow-up of Abnormal Mammograms, 33% of women with an “abnormal mammogram” did not receive adequate follow-up care from their providers.*

The reason? A breakdown in communication between the physician and patient.

Among those women that received inadequate follow-up, researchers found that their physicians did not tell them that they needed to follow up their abnormal mammogram. In addition, these same physicians tended not to document in the patient’s medical record the follow-up care plan for women with abnormal mammograms. Such documentation, among other things, serves to “remind” the physician what they need to address with the patient during subsequent visits.

Some may find these findings somewhat startling. I know I did. But it turns out that failure to diagnose or delay in diagnosis has been a problem in the U.S. healthcare industry for sometime. The 1999 Institute of Medicine report, “To Err Is Human,” documented the significant risks posed by such unsafe healthcare practices.

The Take Aways?

Do not assume your doctor will remember to tell you about your lab or test results whether good or bad.

Always ask your doctor for a copy of the written results of any lab or radiological test.
If your results are “marginally” abnormal, ask your doctor what that means?
Ask your doctor what the long-term plan is for a re-testing in the event of an abnormal test finding.

*According to the American College of Radiology, 3% of mammograms performed in the United States are read as “abnormal, with up to 3% of these women actually having breast cancer.

Journal General Internal Medicain 2004;19:316–323.

Uncoordinated Care: A Survey of Physician and Patient Experience 2007, California Healthcare Foundation

Are Women With Breast Cancer Seeing The Most Experienced Surgeons?

2007-09-30T15:20:00.000-07:00

Up for a quiz? Great. Assume that you or your spouse were newly diagnosed with breast cancer and needed to see a breast cancer surgeon. How would go about finding a breast cancer surgeon to help treat your cancer? Remember, your treatment outcome is riding upon making the right choice.

In choosing a breast cancer surgeon would you:

Select from list of surgeons available through your health plan.
Go to a surgeon referred by another doctor.
Choose the surgeon based upon their reputation.
Go to a surgeon recommended by a family or friend.
Go to a surgeon based upon the hospital where they worked.
Go to a surgeon that was near my home.

A recent study conducted by the University of Michigan Comprehensive Cancer Center put these very questions to 1,844 female breast cancer patients in Detroit and Los Angeles.

Here’s what the study found*:

15% selected their surgeon from the health plan list
63% selected their surgeon based upon referral from another doctor
25% selected their surgeon based upon their reputation
15% selected their surgeon based upon the hospital where they worked
13% selected their surgeon based upon the recommendation of family or friends
9% selected their surgeon based upon proximity to home

* Respondents were free to cite more than one answer.

So which of these "selection methods" do you think gave breast cancer patients in the study the best odds of achieving a good outcome? According to the research, the best treatment outcomes for complex cases like cancer are associated with physicians and hospitals that treat high volumes of specific types of cancers e.g., breast cancer surgeon that perform a high volume of breast cancer surgeries.

The patients in the study most likely to experience the best outcomes were those who selected their surgeon based upon their "reputation." Why? As it turned out, these patients were more likely to get treatment from surgeons that did a high volume of breast cancer surgeries at specialized, high volume National Cancer Center-accredited hospitals. Study participants who selected their surgeon based upon reputation were also more likely to have seen two or more surgeons before surgery, i.e., more likely to seek a second opinion.

Interestingly, study participants who selected a surgeon based upon the referral from another doctor were less likely to end up being treated by a surgeon that did a high volume of breast cancer surgeries.

What’s the Bottom Line?

If you need a specialist for breast cancer or any cancer treatment for that matter, do your homework. Don’t settle for taking your doctor’s recommendation. The patients that proactively sought out information concerning the reputation of surgeon, including getting second opinions, were more likely to be treated b high volume surgeons at highly specialized cancer care centers.

For more on this study go to:

http://www.med.umich.edu/opm/newspage/2007/breastcancersurgeon.htm

More Compelling Evidence That Patient Outcomes Are Better At Specialized High Volume Cancer Hospitals – Lung Cancer, A Case In Point

2007-09-06T17:23:00.000-07:00

Preliminary findings from a study presented at last week’s meeting International Association for the Study of Lung Cancer in Seoul, Korea demonstrates why it so important for cancer patients or their spouses to carefully choose the right physician and the right hospital for their treatment.

The study examined the post-operative mortality for Stage III A/B non-small-cell lung cancer (NSCLC) patients undergoing complex “trimodality therapy.” This is a complex treatment where patients undergo concurrent chemotherapy and radiation followed by surgery (pneumonectomy). According to Aaron Allen, M.D., the study author, the mortality rate for patients at a nationally recognized U.S. cancer center was 4% at 30 days post surgery compared to a 30-day mortality rate of 26% from an earlier multi-hospital study

Allen, who is with the Department of Radiation Oncology at the Dana-Farber Cancer Institute, said “his suggests that the success of trimodality therapy was dependent upon two factors, the experience of the clinical center and the location of the lesion.”

Antoinette Wozniak, M.D., of the Hudson-Webber Cancer Research Center at Wayne State in Detroit, commented on Dr. Allen’s findings saying she believes that "many of these (advanced cancer) treatments work well in the hands of experienced operators," but may not translate well into the low-volume, community-based cancer care hospitals.

The study involved a retrospective analysis of the records and survival rates of 74 Stage III A/B NSCLC patients that underwent trimodality therapy between 1994 and 2005. The median age of patients was 58. Fifty-nine percent of cases were squamous cell carcinoma and 41% were adenocarcinoma. All surgeries were conducted at Brigham and Women's Hospital, which is affiliated with the Dana-Farber.

Lung cancer is the leading cause of cancer deaths. In the United States, 213,380 new cases and 160,390 deaths from the disease are expected this year.

Don't Confuse Me With The Facts

2007-07-31T14:44:00.000-07:00

As a former hospital executive and a long time researcher in the field of consumer health behavior, I tend to look at things differently than many of my colleagues in healthcare. Call me contrarian.

The American Cancer Society for example just released the findings from a study in which 957 adults were asked if they agreed with what turned out to be 12 myths about cancer. Turns out, according to Kevin Stein, the director of the Behavioral Research Center at the American Cancer Society, “misconceptions about cancer are rampant among Americans…particularly when it comes to cancer risks.”

What got my attention was where researchers seemed to chide those of us people who believe that the risk of dying from cancer was increasing. Turns out, a full two thirds of US adults happened to believe this is the case. Count me in, because it sure feels to me like too many people continue to die from at least the more virulent forms of cancer, including lung and pancreatic cancer.

There is an expression among marketers, that perception is the equivalent of fact. In other words, if you believe something to be true, it might as well be true because you are going to behave as if it were. Given that, what’s so wrong with people believing that they are at increased risk of getting cancer?

According to the Health Belief Model, one of the grand daddy tools that shaped much of today’s health education efforts, a person has to believe that they are at risk of getting a condition in order for them to take action. It would seem therefore that we would want more people to be concerned with their risk of getting cancer rather than the other way around. Why? Because more people would get screened, more cancers detected early on and more lives saved…except of course for lung cancer where conventional wisdom argues that there’s no sense screening for a cancer for which there is no cure.

Chances are too, that what experts dispel as a “myth” today will undoubtedly become a “fact” tomorrow. We have all seen this happen often enough to become skeptics of the health experts.

I for one would like to see the American Cancer Society focus more efforts on detecting cures for lung cancer rather than confusing people with data which, while true, contribute little to fighting what continues to be a deadly disease for too many people.

Cancer Care In The US Has A Long Way To Go It Seems

2007-07-28T20:35:00.000-07:00

When I decided to write a blog about cancer, I thought it would be pretty easy. After all, my wife and I have been living with it for some three years come this Fall. And then there is the endless stream of great cancer research that anyone can track by simply signing up for an RSS published by the New York Time or so on.

What has surprised me, or should I say disturbed me, is how variable the quality of cancer care is in the US among cancer doctors and hospitals. No, let’s call a spade a spade. What has scared me is how bad the quality of cancer care in the US can be at the local hospital level. How else could you explain the comments of Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania who finds that he typically recommends major changes in the treatment plans of 30% to 40% of patients seeking a second opinion, and minor recommended change in an additional 30% of the patients.

An article by Diane Grady in the July 29th issue of the New York Times reminded me how bad the state of affairs really is with respect to cancer care in the US.

I was surprised to find out for example that it has only been within the last two years that cancer experts across the US came together to agree upon standard treatment guidelines for the most common cancer conditions. But having guidelines and getting cancer doctors to agree to not to mention follow the guidelines is an entirely different matter.

Here’s what I mean. According to the New York Times article, “among women with breast cancer, 15 to 25 percent who should have radiation do not receive it, and 20 to 30 percent do not take the anti-estrogen drugs that are a mainstay for most patients.”

But wait, things are even worse for early stage patients diagnosed with one of the most deadly cancers – pancreatic cancer. According to a study released this June by the American College of Surgeons, 38 percent of patients who were eligible for (by treatment guidelines) and could have benefited from surgery were not even offered it by their doctors.

Apparently the same is also true for ovarian cancer. Dr. Barbara Goff, a gynecologic oncologist at the University of Washington in Seattle is quoted in the New York Times article as saying “a third of the women in the United States are not getting the right surgery, not even close…we have so many resources, but we still do so poorly with ovarian cancer.”

I could go one with the statistics. But I think you get the point. Cancer patients and caregivers like me, and many of you, really are on our own when it comes to navigating the cancer care delivery system in the US. Sure my wife finally found the right doctors and the right treatments allowing her to remain cancer free for now. Many of you too hopefully have had similar positive outcome. But I bet that like my wife and I, it probably didn’t come easy for you either. Like us, you no doubt had to fight your local doctors and hospitals to end up where you are today.

What I want to know is why does it have to be this way? Anyone else have an opinion?

Want To Increase Your Odds Of Remaining Cancer Free Following Prostate Cancer Surgery? Start By Finding A Highly Experienced Surgeon.

2007-07-25T21:46:00.000-07:00

Prostate cancer is the most commonly diagnosed cancer among American men. According to the American Cancer Society, there will be about 219,000 new cases of prostate cancer in the United States in 2007. The most common treatment for early stage prostate cancer is a surgical procedure called Radical Prostatectomy. Radical Prostatectomy is where the surgeon takes out the prostate and some surrounding tissue in an effort to remove the cancer entirely and prevent it from spreading.

Radical prostatectomy "is a very, very difficult, complex operation” according to Andrew Vickers of Memorial Sloan-Kettering Cancer Center. Vickers is a researcher and a co-author of a study “that documented the learning curve doctors face as they perform operations over and over.” The study, which tracked the outcome of 7,765 radical prostatectomy patients, found a statistically significant association between surgical experience and the probability of patients being cancer free after five years.

The study found that surgeons who had performed 250 Radical Prostatectomies over their career had the best outcomes, i.e., patients without a recurrence after five years, when compared to surgeons that had performed fewer than 250 such procedures. After 250 cases, the improvement in surgical outcome did not improve regardless of how many more times a surgeon did the procedure. What’s unusual about this study is that it is one of the first such studies in cancer to clearly link surgical experience to patient outcomes.

As reported in the study, men whose doctors had performed the surgery only 10 times in their careers were about 70 percent more likely to suffer a recurrence of prostate cancer within five years than men whose surgeons had performed it 250 times.

In an interview associated with the release of the study findings in the Journal of the National Cancer Institute, Vickers addressed a cautionary note to prostate cancer patients considering Radical Prostatectomy. According to Vickers, "a very large proportion of the physicians doing these procedures essentially will never get up the learning curve because…they do not specialize in it and only do the operation only a few times a year.”

Take Aways of this Posting

- If a Radical Prostatectomy is in your future, ask your referring physician for the names of several surgeons. Call each of the surgeons and ask them, or more likely their office staff, how many of the surgical procedures the doctor has performed over the course of his/her career to date. Remember...the goal is to find a surgeon that has performed 250 or more Radical Prostatectomies.

- If you can’t find a local surgeon with enough experience, look for a National Cancer Institute (NCI) designated Comprehensive Cancer Program in your State. Contact the program and ask for the names of surgeons that specialize in Urology and find one that has done at 250 or more Radical Prostatectomies.

Best US Cancer Hospitals - 2007

2007-07-19T10:49:00.000-07:00

Perhaps the most important decision a cancer patient has to make is where to find the right doctors and hospital to diagnose and treat your condition. So how do you go about finding the best?

One good way to start is be going to the US News and World Report website. There you will find coverage of the 2007 America’s Best Hospitals, including the top US Cancer Hospitals. Keep in mind that you will usually find the best doctors affiliated with the best hospitals.

US News and World Report has been putting this “best of hospitals” list together for a number of years now and does an excellent job. Their researchers look at the same issues we all should be considering when it comes to finding the a doctor or hospital for a serious medical condition such as cancer:

- How many cases a hospital treats each year
- The mortality rate (number of people that died) for patients treated at the hospital
- The availability of key diagnostic technology
- What referring physicians thinks about the hospital

Whether newly a newly diagnosed cancer patient or someone seeking a second opinion, it is important to know that not all cancer doctors or hospitals are the same, advertising aside. Studies show that hospitals (and doctors) that treat more of a particular condition tend to have better outcomes. These hospitals also tend to have more advanced diagnostic capabilities and more experienced technicians, which are critical not only in identifying new cancer patients but in following up existing cancer patients as well.

Take my wife’s experience with our local cancer facility. When I called to find out how many patients with Stage IIIb lung cancer their Radiation Therapy department treated a year, I learned that they treated 60 cases that were “sort of like” my wife’s condition. When I called MD Anderson, which is where she was eventually treated, we learned that they treated 400 cases exactly like my wife’s condition. Believe me…experience counts when you have got to get things right the first time!

Out of 5,462 US hospitals evaluated, only 173 met the researcher’s standards in one or more specialties. According to the US News and World Report article, “hospitals are ranked by specialty and not by specific procedures because the goal is to identify facilities that excel at treating a variety of demanding illnesses and procedures within a specialty.”

Below are the names of the top 10 US Cancer Hospitals, out a list of 50 hospitals that were include in the 2007 annual ranking.

#1 University of Texas M.D. Anderson Cancer Center, Houston, TX

#2 Memorial Sloan-Kettering Cancer Center, New York, NY
# 3 Johns Hopkins Hospital, Baltimore, MD

#4 Mayo Clinic, Rochester, MN

#5 Dana-Farber Cancer Institute, Boston, MA

#6 University of Washington Medical Center, Seattle, WA

# 7 University of Chicago Medical Center, Chicago, IL

#8 UCLA Medical Center, Los Angeles, CA

#9 Duke University Medical Center, Durham, NC

#10. Massachusetts General Hospital, Boston, MA

Take Aways from this post:

1) Do you homework when it comes to selecting a doctor and hospital for your treatment. Significant variations exist among different doctors across the US when it comes to how they diagnose and treat the same types of cancers. You want to find doctors and hospitals with the best outcomes for treating your kind of cancer. Ask lots of questions.

2) Check to see if there is a National Cancer Institute (NCI) designated Comprehensive Care Program near where you live. These facilities and their medical staff are recognized regional leaders in the diagnosis and treatment of cancer.

Even if you are treated locally, consider getting a second opinion on your diagnosis and recommended treatment from an NCI-designated cancer program near you.

Ignore Conventional Wisdom About Aggressive Prostate CA Treatment And You May Live Longer

2007-07-13T22:18:00.000-07:00

One of the most important lessons my wife and I have learned during her bout with lung cancer is to never trust anything that sounds like "conventional wisdom."

I’ll never forget it when a local thoracic surgeon quoted us the survival statistics for someone with Stage IIIb NSCLC. Referring to the studies as “conventional wisdom,” the doctor preceded to suggest that my wife wouldn’t be around much longer. The problem was that his version of “conventional wisdom” was based upon studies that we knew to be 20-30 years old and out of date relative to treatment advances. That was almost three years ago and my wife is healthy and cancer free, thank you very much.

Accepting conventional wisdom at face value can be dangerous, at least when it comes to your health. Take prostate cancer for example. According to the authors of a recent study of men with aggressive prostate cancer, most men diagnosed with aggressive prostate cancer are told that their disease is untreatable. The study authors attributed this to the“pessimism that abounds among many doctors, who believe that aggressive prostate cancers are beyond cure and should only be followed with watchful waiting.” In layman terms that means don’t do anything.

Amazingly the study which appeared in the March 2007 Journal of Urology found just the opposite. According to study which looked at 453 cases of localized aggressive prostate cancer, “surgical removal of the prostate (prostatectomy) or radiation treatment more than doubles life expectancy” (e.g., 14 years) compared to those receiving the a conservative approach (e.g., < 7 years).

What are the take always?

1). Question everything your doctor tells you. Do your own homework and get the facts.

2). If you don’t like what you hear from your doctor, get a second opinion.

3). Be highly skeptical of conventional wisdom especially when it applies to your health.

Different Asian American Groups Face Different Cancer Risks

2007-07-11T11:08:00.001-07:00

I live in California, and besides having a Filipino wife, I know lots of people of Asian descent, some born in the US and many born in their native land. That’s why an article today in the New York Times about cancer rates in Asian Americans caught my attention.

The study, which looked at five ethnic groups living in California: Chinese, Filipino, Vietnamese, Korean and Japanese, found that people in each ethnic group had very different levels of risks for different types of cancer.

Among Asian American women, Filipinos women had the highest rates of breast cancer, followed by Japanese and Korean American women. Vietnamese women had the highest rate of lung cancer followed by Chinese and Filipinos. Japanese women reported the highest colon cancer rates followed by Chinese and Vietnamese.

Among Asian American men, Filipino men had the highest rate of prostate cancer, followed by Japanese and Chinese males. Filipino American males also reported the highest rate of lung cancer, followed by Vietnamese and Korean males. Japanese males had the highest rate of colon cancer, followed by Korean and Chinese males.

Stomach cancer is a common cancer found in both women and men of Korean, Japanese and Vietnamese ancestry.

The take aways from this posting are:

1). Know your own ethnic, genetic and age/gender-related cancer risks. Do not expect your doctor to know or remember your risk or to screen you routinely for them.

2). None of us should ever assume that our physician is “on top of everything” when it comes to our health. According to the New York Times Article, “some cancers in developing countries are often caused by chronic infections with certain bacteria and viruses that are routinely treated or prevented in the United States.” As a result, physicians in the US may not think to screen for cancers caused by infectious agents.

For a full copy of the study go to http://caonline.amcancersoc.org/cgi/reprint/57/4/190

Introduction

2007-07-03T14:35:00.000-07:00

I have been looking for the opportunity to share my thoughts and experiences regarding cancer for sometime now. Looks like I finally have an audience! I am grateful to the good people at Healthline for this opportunity.

So what do I know about cancer?

Well for starters, I understand:

How hard it is to have someone you love told that they have cancer. How, in a few seconds, your life and that of a loved one can be changed forever by the words “you have cancer.” I also know that many people who have survived the journey are better people for it.

That how you respond to the diagnosis of cancer makes a big difference in the outcome. I have seen people get so depressed that they see no point in going on…and they succumb to their disease. I have seen others, faced with the very same situation, find the strength, courage and support to soldier on through the depression to fight and beat back their cancer.

Cancer does not have to be the death sentence that everyone thinks it is. People with even the most difficult types of cancer are living longer than ever before. Take my wife for example. She was diagnosed in November of 2003 with Stage IV Non Small Cell Lung Cancer and today is in complete remission. According to the statistics, she should not have survived much beyond three months following her diagnosis. But with the right doctors and the right treatment, people like my wife can and do beat cancer every day in this country.

That every newly diagnosed cancer patient should “run not walk” to get a second opinion. But don't settle for getting a second opinion from just anyone. Get a second opinion from an expert. That means finding a physician that specializes in your type of cancer. Experts are out there…you just need to know how to find them and hopefully I can help you find them.

How hard it is to navigate your way around the healthcare system to get what you need. Who are the best doctors? Which are the best hospitals? What should I ask my doctor? What about my health insurance? I hope to be able to guide you through these and a myriad of other perplexing questions based upon my years of experience working in hospital administration and patient advocate for my wife and others.

I hope my first posting here gives you a sense of who I am and how I believe I can help my readers. My experience with cancer has given me reason to be optimistic and hopeful and I want to share that with you.

To use a cliché from the TV show the X-files, the answers are out there. My job is to help you find them Let me know what you think.

The Controversy Surrounding John and Elizabeth Edwards and Her Cancer

2007-04-07T11:04:00.000-07:00

Since John Edwards announced his candidacy and Mr. and Mrs. Edwards announced the recurrence of her cancer, there has been a lot of controversy. The public seems to have many issues around John Edwards' candidacy while his wife faces cancer. These include:

Will Mrs. Edwards having cancer raise more attention and possibly more votes for John?
Will Mrs. Edwards having cancer raise concern over whether John Edwards could handle the Presidency and his wife's cancer?
Is John Edwards an uncaring man for pursuing his ambition despite his wife's diagnosis?
Did Mrs. Edwards push her husband to continue his pursuit of the Presidency?
How will Mrs. Edwards handle being the first lady if she has cancer?

I have heard friends and announcers on TV talk about these issues. And I have a slightly difference perspective. I think it is admirable and courageous of the Edwards to go forward with the campain. Aditionally, they have been open and honest about Mrs. Edwards' medical condition. I also appreciate the fact that Mrs. Edwards is using her story to warn women of the importance of regular mammograms, which she did not have. Even though she was smart, insured and a well-connected senator's wife, with a history of late-in-life pregnancies, and fertility treatments, she did not have regular mammograms.

No matter what the final results are of the campaign, I believe that we should support the Edwards in their decision to go forward. And I believe that both Mr. and Mrs. Edwards will continue to be advocates for individuals with cancer, and advances in cancer research, and education.

Other Resources for Colorectal Cancer

2007-03-27T14:21:00.000-07:00

The month of March is almost over and so comes the ending of the Colorectal Cancer Awareness Month. This does not mean, however, that we stop thinking about or discussing colorectal cancer until March of next year. Many scientists, health care professionals, cancer survivors, family and friends will continue to be concerned with colorectal cancer in April and other months. We will begin discussing other topics on this blog, but you may still always post a concern about colorectal cancer at any time.

As we come to an end of Colorectal Cancer Awareness Month I wanted to provide you with some other links to sites that you might want to visit. Hopefully, you will find these helpful in your cancer journey.

Other resources include:

As this month comes to a close it is important to reinforce that prevention and early detection are the best ways to help with colorectal cancer. As we discussed previously it is essential to remind our family and friends of the screening guidelines by the American Cancer Society and recommend lifestyle changes such as eating more fiber.

Seek help from as many resources as possible if you are diagnosed with colon or rectal cancer. Consider your options and seek a second opinion if you want to. Ask questions and make sure everything is explained so that you can understand it. Maintain a positive attitude and seek support from family, friends, community support groups or discussion forums on the internet. There have been many advances in detection and treatment of colorectal cancer and there are a number of options and lots of HOPE.

Targeted Therapies for Colorectal Cancer

2007-03-25T14:30:00.000-07:00

Because chemotherapy drugs must be given systemically and can thus harm healthy as well as cancer cells, they tend to cause a wide variety of side effects and are not very specific. More recently, researchers have developed targeted therapies or biologic agents. These have been developed in the hope of stopping tumor growth while sparing normal healthy cells and body functions.

These new therapies have been developed to target specific characteristics such as the tumor blood supply or overexpression of receptors of signaling proteins. Two targets that have been identified to use with metastatic colorectal cancer are epidermal growth factor receptor (EGFR) and vascular endothelial growth factor (VEGF) .

Although these new therapies are "targeted" it does not mean there are NO side effects. They may have fewer side effects and fewer severe side effects than chemotherapy. For instance patients may experience some of the following side effects: nosebleeds, hypertension (high blood pressure), proteinuria (too much protein in the urine). Additional side effects might include weakness, pain, diarrhea, rash and leukopenia (a reduced white blood cell count).

Several of these new targeted therapies include:

These new targeted therapies are just one potential option for colorectal cancer. Your physician will discuss with you whether you will have just one therapy (like surgery) or a combination of therapies. But, it is helpful to know there a new therapies being developed every day.

Surgery for Colorectal Cancer

2007-03-15T18:50:00.000-07:00

Surgery is one of the main treatments of colorectal cancer. Usually the tumor on the colon or rectum is removed as well as any lymph nodes. Sometimes pieces of the colon have to be removed and then sewn back together with a colostomy (or opening in the abdomen for getting rid of body wastes). Sometimes a temporary colostomy can be done and reversed later.

Sometimes newer ways can be used to remove the cancer like a laparoscope. This is a lighted tube. Special instruments are used to remove the cancer through small incisions, and recuperation is faster.

If you end up with a colostomy you will need help in learning how to care for it. Hopefully, family or friends can help.

There are always possible side effects of surgery which can include bleeding from surgery, blood clots in the legs and damage to nearby organs during the operation. Infections are also possible. You should report any side effects and symptoms to your physician or nurse.

Screening Guidelines for Colorectal Cancer

2007-03-10T20:42:00.000-08:00

The American Cancer Society (ACS) puts out guidelines for all types of cancers so that they may be detected early and treated early. These guidelines are based on average risk men and women. However, if you have a family history of colorectal cancer you should discuss with your doctors if you should start checking early.

The ACS recommendations for colorectal cancer are for men and women 50 years and older have 1 of the 5 screening options:
1) Fecal Occult Blood Test--every year starting at 50 years old OR
2) Flexible Sigmoidoscopy at 50 years old and every 5 years
3) Yearly FOBT plus flexible sigmoidoscopy every 5 years OR
4) Colonoscopy at 50 years old and every 10 years
5) Double Contrast Barium Enema -- at 50 years and every 5 years

The ACS prefers choice #3 above.

The FOBT test refers to collecting and testing 6 samples from 3 consecutive stools at home.
Flexible Sigmoidoscopy is a procedure that allows direct visual examination of the distal part of the colon and rectum with a flexible scope after a thorough cleansing of the colon and rectum.
Colonoscopy is a procedure that allows direct visual examination of the entire colon and rectum using a colonoscope.
Double contrast barium enema is a procedure that allows X-ray examination of the entire colon and rectum by instilling both barium and air to be able to visualize everything.

Although these tests are not especially easy or fun, they are essential in detecting colorectal cancer early and surviving cancer. So once you reach 50, please start these exams as outlined by the ACS.

What Does Dental Care Have To Do With Cancer?

2007-03-06T08:50:00.000-08:00

About 2 weeks ago I went to my dentist and found out that - right then and NOT tomorrow - I was going to get a temporary crown on my tooth. Now you have to understand I am not severely phobic of dentists, but I can think of lots of other things to do. Today I was to go back and finish the work. - Lucky for me I had the date wrong (so pray for me on Thursday).

The reason I mention all this is it is CRUCIAL--not just nice--BUT ESSENTIAL for cancer patients/survivors to get regular and thorough care. Most oncologists will require you to have a dental check-up before you start any chemotherapy or radiation. If the doctor does not mention it, then you should ask and make the appointment yourself. It may sound silly, but for those of you who have had a toothache you know you can get an infection in your mouth. There are many different types of "bugs" in your mouth. As you already know your white blood cell count (WBC) decreases after chemotherapy or radiation and this makes you prone to infections. Once your WBCs are low, they cannot fight infection. The state of your teeth, gums, tongue, and lips are important during your cancer journey. Once the treatment is over you may want to have your teeth checked every 6 months.

In addition to having a thorough dental check up before you start treatment, the physicians and nurses may ask you to follow a very specific routine to clean your mouth and teeth. Again, it may seem silly to do this routine 4 or more times per day, but it can prevent you from obtaining a lethal infection in your mouth. Research has shown that it is important for the nurses to assess your mouth several times a day and for you to follow the oral care routine they give you.

Spring - What Does the Season Mean

2007-03-01T16:37:00.000-08:00

It is only March 1st. and Spring does not officialy start for several weeks, but it has been on my mind.

As in summer, Spring brings dayight hours that are greater or equal to 12 hours and rapidly increasing. Everything begins to warm, new plant growth starts. Snow (if any) begins to melt and flowering plants begin to bloom. As one season becomes another it may be hard if you are struggling with cancer to enjoy the little ways we know Spring is coming, but in other ways it may be very comforting. It may be comforting like by 2 black lab dogs that they keep coming back. And maybe this Spring there is a new hope for you or at least someone (or some mammal) that loves you unconditionally and will give you a wet slobbery kiss .

Take a few minutes and think about how you would like your journey to be this Spring.

Strength - Do you Have It?

2007-02-24T02:37:00.000-08:00

When I met with the long-term survivor's support group the other night I decided to ask 1 question I usually ask.

The question was -did you feel that you had a positive attitude, optimism, self-determination, inner strength or faith that helped you survive. They all agreed yes. Clinically I see this all the time and now we actually need to do the research to prove it.

As I was thinking about this and looking at many articles and books I use for this blog I was surprised to see an anonymous survivor describe how cancer means your body's outer strength will now depend on finding your innner strength. It was so well put.

She also advises to not become discouraged. She recommended relaxation and positive thoughts and make yourself your number 1 priority. Lastly, she recommends to remain positive and optimistic by knowing the facts.

As we end you may wonder why I chose this photo, but to me it represents the beautiful inner strength of us all.

Long-Term National Cancer Survivors' Issues

2007-02-22T15:52:00.000-08:00

Despite the many advances we have made in treatment of cancers we still have not made many in the area of long-term survivoship.

Tonight I agreed to lead a support group of indivdiduals who have survived cancer several months to 18 years. It was a large interactive group and we had some great discussions. Everyone interacted. They all had different types of cancer but it was amazing how similar their long-term issues were.

We divided the discussion into 4 sections. What are the long term issues from physical well being? What are the issues from a psychological (emotional) point? What are the isses from a social aspect (financial, isolation)? And lastly what are the issues related to spiritjual well-being (Why me? What is the meaning of my life?)?

I have done this exercise with many other groups and what is most interesting is: 1) we still have very little to help with these isses, and 2) despite the type of cancer the issues are usually very similar.

My hope is that one day we will have a surviorship clinic at every cancer center to deal with these issues.

Avastin to Treat Gliomas

2007-02-20T16:34:00.000-08:00

Avastin is a cancer drug that has been shown and been approved to treat lung and colorectal cancers. A new study now has shown that Avastin can slow the growth and shrink tumors of a common form of brain cancer called glioma. This is exciting news.

A larger clinical trial has already been started which will involve some 160 patients to find out just how much of an improvement they can have when fighting brain cancer with Avastin and no other drug.

The results of this initial study are very encouraging. We often do not have much new and exciting news to share about brain tumors.

Reply to George and Merkle Cell Cancer

2007-02-19T03:30:00.000-08:00

George is the Administrator for the Merkel Cell Cancer group, an online support group within Google Groups. The group sent questions and contacted the main office at the Women's Health Center of Excellence at Wake Forest University Baptist Medical Center, where I work. Joining this support group requires a user to identify themselves by first name or initials and describe their merkel cell cancer experience. Membership is dependent upon participation in the group. Members can openly share their stories as a patient with Merkel cell carcinoma (MCC), or as a family member supporting someone with MCC.

The term carcinoma is malignant by definition: carcinomas invade surrounding tissues and organs, and may spread to other areas of the body and organs, such as a lymph node, the liver, lung, brain, or the bones. An infrequent but highly malignant neoplasm (various malignant neoplasms are characterized by the proliferation of anaplastic cells that tend to invade surrounding tissue and spread to new body sites), MCC is a type of skin cancer. Characteristically it starts in a sun-exposed area (of the head, neck, arms or legs) in Caucasians 60-80 years of age as a firm, painless, shiny lump that can be red, pink, or blue in color and vary in size from less than a quarter of an inch (a half cm) to more than two inches (5 cm) in diameter.

The tumor (an abnormal growth of tissue resulting from uncontrolled, progressive multiplication of cells and serving no physiological function) grows rapidly and often metastasizes (spreads) to other parts of the body. Even relatively small tumors are capable of metastasis, particularly to the regional, nearby lymph nodes (any of the small bodies located along the lymphatic vessels, particularly at the neck, armpit, and groin, that filter bacteria and foreign particles from lymph fluid). During infection, lymph nodes may become swollen with activated lymphocytes. Merkel cell carcinoma follows an aggressive course like that of melanoma, and has a predilection to spread to (in order of frequency) liver, bone, brain, lung, and skin. The prognosis (outlook) is accordingly poor.

There are limited support groups for merkel cell. The Merkel Cell Cancer group referred to in this post, headed by George, http://groups.google.com/group/merkelcell, is a closed discussion group with no commercial influence or interest. The membership is open to anyone that has had the Merkel Cell Cancer experience as either a patient, family member, or caregiver of a patient. The public membership statement associated with this Merkel Cell Cancer group explains that this is a forum "where you can openly discuss your experience with MCC, as a patient with MCC, or a family member supporting someone with MCC. We are not health care professionals nor are we offering medical advice, just the experience of having this cancer." Joining this group requires approval from the manager - George.

I hope this helps those who have to deal with MCC in one way or another. George, I appreciate the fact that you contacted the Women's Health Center of Excellence at Wake Forest University Baptist Medical Center and asked about support gtoups. For those of you interested in learning about support groups, please read the posts I have dedicated to this topic:

How To Start a Support Group

2007-02-18T07:53:00.000-08:00

Sometimes individuals are interested in a support group but there is nothing offered in their area, yet there are other individuals who are traveling along the same cancer journey. Do not be afraid to start a group, but be realistic. It takes awhile to grow the numbers. But, a support group can be helpful even if it is only 3-4 people.

I have listed below some suggestions if you decide you want to start a support group.

If there is one at your doctor's office or hospital, find out who leads it and talk to them about how they got it started.
If there is a psychologist, nurse, or social worker from whom you've received treatment, ask them for advice if they have ever run a support group.
Think about having an expert help you (as a volunteer) for the first few months to start the support group.
Make some decisions (read my past few posts) about what type of support group you want.
Find a place to hold the group. It generally should be a neutral place - not your home. Many town halls, local schools and churches will provide space for free.
Decide how you will advertise. You can invite 2-3 people you know with cancer and ask them to try to bring at least 1 other person they know with cancer. You can also open it to family members and friends early on or always. Will you distribute flyers at your church, grocery store etc.? Always be sure to ask if you can post or distribute flyers as many places have rules against this.
Plan the first few meetings for 90 minutes so you can do peer support (and education if you want), but also begin planning long-term for the group (e.g. what will be the meeting place each time, who will be included, do you want an expert there).
Start only with about 8 people so the planning can go well. You can always invite about 12 and then 8 will show. If you have too many people in the beginning, it will be difficult to make decisions.
Decide if there needs to be clear roles - like 1 person always sends a reminder, 1 person distributes flyers etc.
You may wish to go to a bookstore or amazon.com to find some basic books on starting support groups. For Amazon, I went to their site and typed in support groups. This is the link I received http://www.amazon.com/s/ref=sr_pg_1/102-7418529-0634543?ie=UTF8&keywords=support%20groups&rh=i%3Aaps%2Ck%3Asupport%20groups&page=1. When I did this it listed several paperback books on effective support groups or how to lead a support group.

Be proactive. Start a group if one is needed. Get help starting it. If you are finding there are no established support groups that are appropriate for you in your community than there will be others feeling exactly as you do.

Any Newcomers to Support Groups?

2007-02-15T16:31:00.000-08:00

On my previous post I discussed some of the different types of support groups. But there are many other facts and questions to ask about support groups. One aspect that is essential is what do you do if you are a newcomer?

Regardless of the type of support group you decide to participate in, be sure it is CONFIDENTIAL! You should feel everything you say stays within the group and is not shared outside. What you share will probably be intimate and you need to be assured that you and your information will be shared with respect.

If the privacy and confidentiality is violated then the group needs to discuss this and resolve it within the group. If there is a facilitator they can help. Members of the group could get together between meetings for coffee and share more about themselves but not about other members.

It is best to have ground rules in support groups and to tell each new member what they are. For example: 1) Everyone has the right to be heard, 2) Everyone should listen carefully when 1 person is speaking, 3) Only 1 person should speak at a time, 4) Everything is condifential.

If you find you are being upset by things discussed in the support group, you may want to try a different type of support group. If there is a group leader or facilitator, their style may differ. So you may want to assess their role and be sure that it is what you need. For instance, the group leader should help get the group back on track if they move into a nonproductive area. If you repeatedly feel like you have to be the leader but do not want to be, then make that clear to the group.

As a newcomer, go with an open mind. Try the same group twice and ask members of that group if there are other groups you should visit.

Valentine's Day and Support

2007-02-14T15:05:00.000-08:00

Although many people believe Valentine's Day has become too commercial or only commercial. I have tried to make it another day to think about friends and family that I love and who support me. And for individuals with cancer I am sure this may be even more true. Thus, I have been thinking this year about the "SUPPORT" part. We all need positive support in our lives. The type and people who support us may vary throughout the years or throughout your cancer journey, but you still need support.

Consequently, today I thought I might mention "support groups". There are many myths and misconceptions about support groups in general (whether for cancer or not). And I do agree they may not be for everyone. But, I do think if individuals do a little research they may find a particular type of support group may be helpful and different than what they think the "stereotyped support group" might be. I have started and run many types of support groups.

The best part about support groups is they can be designed to meet the groups' needs. Your first visit may be a bit daunting or uncomfortable. Try going, at least, a second time to make certain that a particular group is a good fit.

There are several types of support groups that fulfill the needs of different individuals. Below is a list, created by the American Cancer Society, of the different types of support groups that one can join:

Type of Cancer: for example, breast cancer vs. prostate cancer
Stage of cancer experience: for example, new diagnosis vs. recurrent cancer
Treatment type: for example, bone marrow transplantation vs. chemotherapy
Open membership: enrollment is not necessary, and one can come and go as they please
Closed membership: enrollment is necessary and members are expected to attend each session
Therapy group: group therapy moderated by a psychologist
Peer support group: this group provides a comfort zone where individuals can share their experiences with one another
Educational group: lecture sessions conducted by experts that center around medical information
Coping skill group: members share the skills they've used when coping with different stagees of their cancer treatment
Telephone support groups: group members meet through the telephone
Support groups for children: groups for children diagnosed with cancer or groups for children whose family members are diagnosed with cancer

For more detailed information concerning the types of support groups one can attend, go to this page at the American Cancer Society website: Support Groups: General Information

Recommendations:
I have started and lead many groups. I often suggest to individuals with cancer (and/or family and friends) to at least try a support group or 2. Some individuals feeltheyy do not need it as they have a large family support network (20-50 people), or a large church network. I have seen all of the above types work well. I also like what I would call a combination support group. Where there is some peer support, but also some time for education or coping tips by a professional. This can be combined in each meeting or rotate so 1 month is education and then next is peer support. This can often be helpful.

Think about these options and respond with your thoughts and ideas and I will write more about support groups in the next few days.

Another Good Resource: The Oncology Nursing Society

2007-02-11T19:17:00.000-08:00

In addition to providing news and tips, science and how to cope and improve your physical, psychological, social and spiritual well-being I would like this to be a site that you can go to for other resources that are accurate and credible.

The one I would like to highlight is the Oncology Nursing Society. It is a professional organization of about 33,000 nurses dedicated to improving the lives of individuals with cancer. You can go to the webstite - www.ons.org. I have been involved for over 20 years. There are many ways to reach someone for help at ONS as seen below:

Oncology Nursing Society, 125 Enterprise Drive, RIDC Park West, Pittsburgh, PA 15275-1214
toll free866-257-4ONS ; local412-859-6100;fax 877-369-5497 and e-mail customer.service@ons.org.

ONS was started by a handful of nurses dedicated to cancer care. The first nurse to officially become an employee of ONS was an incredible nurse named Pearl Moore. With incredible commitment on her part, as well as others they developed this into one of the largest and most influcential specialty nursing organizations. Pearl retired after 30+ years, and we now have some new and exciting times with another incredible Chief Executive Officer named Paula
Rieger.

The website sponsored by ONS is very helpful and there are many areas that anyone can open and read (especially sections on sympoms like pain and fatigue). There are only a handful of areas that you cannot enter unless you are a nurse and a member (like the section where we are voting for our next Board members). But anyone at the ONS office will try to get whatever information you need.

Probably many of the nurses involved in your care are members of ONS and get a chance to attend 1 of the conferences each year. There is an annual conference in April/May (5000+ nurses attend), a Fall conference ( that is more focused and smaller - 2000+) and a conference every other year in the odd years for the nurse researchers (450+). That is the one I just returned from the research conference and I will begin to share the cutting edge research nurses are doing.

I would be remiss to end the column if I did not mention that we also have an Oncology Nursing Society Foundation. You can contact them at:
ONS Foundation125 Enterprise DrivePittsburgh, PA 15275
Phone (412) 859-6100Fax (412) 859-6163
foundation@ons.org

This is an amazing foundation that was started in 1981 by all of the oncology nurses and has raised about $17.6 million dollars since that. All of that money has gone to nursing educaton and research. They give out grants, awards scholarships and much more. With all the federal funding that is decreasing for cancer research and education, it is hoped that ONS can continue to fill that void. If you feel you had a wonderful experience with a cancer nurse that has helped you then you might consider sending a little note and a donation (there are no restrictions on the amount - every $5, $10, or $40 or $100 helps). The Director is Linda Worrall and the President is Kevin Sowers.