CancerConnect Blog

November 12th, 2013 · 19 Comments

PTSD Common for Soldiers and Cancer Patients

By charles charles

war is hell


By: Jamie Reno

My heroes have always been war veterans. And cancer patients. When you think about it, the two groups have a lot in common.

Recently, I interviewed a Marine combat veteran who'd endured four tours of duty in Afghanistan. This guy had seen one of his best buddies killed in an improvised explosive device (IED) blast.

But when he learned that I’d been through four battles with stage IV non-Hodgkin's lymphoma, he asked me how I made it through.

I just shook my head in amazement and said, “It was absolutely nothing compared to what you must have gone through in combat, seeing your friends die and getting shot at.”

He said in all sincerity that he could easily handle being in a war better than going through cancer treatment.

I told him I never wanted to find out which “fight” is tougher. We shared a laugh. And at that moment I was reminded, again, how much war veterans and cancer patients do indeed share.

I respect and admire every man and woman who puts on a uniform and fights for our country, and every man, woman and child who's been diagnosed with and fights cancer.

We fight very different battles, of course, but cancer and war, which are both fitting metaphors for the other, bring out the best, and worst, in us.

Both are ultimate tests of our strength, courage, and love for life.

Both can be pure hell.

And both can cause deep and lasting psychological trauma.

Last year, I reported for The Daily Beast that about one in three veterans of the fighting in Iraq and Afghanistan suffer from Post-Traumatic Stress Disorder (PTSD), which is a form of anxiety that develops in reaction to physical injury or severe mental or emotional distress, such as military combat, violent assault, natural disaster, or other life-threatening events.

It is widely known that PTSD is common among our troops and veterans. But what is less commonly known is that it’s also very common among cancer patients.

Researchers in the February 2013 Journal of the National Cancer Institute confirm that nearly one in four newly diagnosed breast cancer patients often start manifesting symptoms of PTSD shortly after hearing the words, “You have breast cancer.”

According to the National Cancer Institute, the physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one's body and life are traumatic experiences for many cancer patients that can often lead to PTSD.

I've never been formally diagnosed with PTSD. But I know I have it. No question about it.

I still sometimes have nightmares about my cancer. And I still have a hard time even driving by the hospital where I had my initial chemotherapy. It triggers a lot of emotions within me. Fear, especially, and anger.

The way I see it, every cancer patient has some form of PTSD. It typically is not as severe in cancer patients as it often is for war veterans. But it is very real.

But what matters is that for all the trauma that accompanies fighting cancer, and fighting wars, they also both give us an immeasurable appreciation for the precious gift that is this life.

That old cliché’ is true, you know: What doesn’t kill us really does make us stronger!

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Tags: Blog, Breast-Cancer, Cancer Battle, Cancer Survivor, chemotherapy, Combat, National Cancer Institute, non-Hodgkin's Lymphoma, Post-Traumatic Stress Disorder, PTSD, The Daily Beast, Veterans Day, War

November 2nd, 2013 · 9 Comments

Cancer Patients and the Internet: A Rocky but Lifesaving Relationship

By charles charles

google logo

By: Jamie Reno

As cancer patients, we sometimes take the Internet for granted. We act as if it were always a part of our lives. But obviously, it wasn't.

When I was first diagnosed with cancer more than 17 years ago, the Internet was fledgling. Google, the ubiquitous Internet search engine, didn't exist.

There were only a few search options, like WebCrawler, Infoseek and Altavista. But they didn’t provide much help.

And there certainly wasn't anything like CancerConnect.

Information was scarce. I had my doctor, and little else. I was essentially on my own to collect as much information as I could about my type of cancer.

It was far more difficult back then to find and communicate with others who had the same type of cancer or learn about all available treatment options.

All that has thankfully changed. When my cancer recurred just a few years after my original diagnosis, I was able to go online and find the clinical trial that would save my life. Yes, I owe the Internet an immeasurable debt of gratitude.

But now, instead of having so little information, we almost have too much. The Web is an amazing resource. But it can be frustrating and even overwhelming.

It’s both laughable and daunting how much info jumps into our lap when we type into Google key words that we hope will help us make some decisions about our healthcare.

That's why online destinations such as CancerConnect, which are well organized and run by doctors as well as knowledgeable patients and survivors, are so valuable. And CancerConnect's web chats with cancer experts are particularly useful in separating the wheat from the chaff.

On Tuesday, Nov. 5, CancerConnect is offering a live talk that is especially meaningful to me: “What You Need to Know about Non-Hodgkin’s Lymphoma.” This is the type of cancer I've been battling for nearly two decades.

A part of CancerConnect’s Web Chat with an Expert series, the conversation features Dr. Steven Horwitz, a medical oncologist and lymphoma expert at Memorial Sloan-Kettering Cancer Center.

If you or a loved one has non-Hodgkin’s lymphoma, this is something you'll want to check out.

Steven will discuss and answer participants’ questions about NHL at 6:30pm EST. Topics will include:

* Features of these diseases;

* Advances in diagnosis;

* Prognostic tools available to better select treatments for patients most likely to respond;

* New treatments, new drug combinations, and ways to make therapy more effective;

* What's on the horizon: clinical trials and vaccines;

* Survivorship and quality of life.

I should point out that this series is not intended to be a substitute for advice from a healthcare professional, diagnosis, or treatment. Speak to your doctor about any questions you may have regarding your health.

But as the folks at CancerConnect like to say, knowledge is power. And I'd even take that a step further and suggest that knowledge, indeed, is life!

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Tags: altavista, Blog, cancer, CancerConnect, Clinical Trials, Dr Steven Horwitz, Google, infoseenk, Internet, lymphoma, Web Chat, Memorial Sloan-Kettering Cancer Center, non-Hodgkin's Lymphoma

October 15th, 2013 · Leave a Comment

Unsung Heroes of America’s Military Face Increased Breast Cancer Risk

By charles charles

failing our wounded new

Army veteran Marissa Strock

By: Jamie Reno

As a journalist, I’ve had the honor of covering our troops and veterans for two decades. And with Veterans’ Day just around the corner, it seems an appropriate time to salute the unsung heroes of the wars in Iraq and Afghanistan: America's women in uniform.

Since 9/11, approximately 300,000 women have deployed. One of those heroes is Marisa Strock (pictured at left), an Army veteran who I have profiled twice for Newsweek.

Marissa, who as part of a Humvee crew in Iraq lost her legs in an IED (improvised explosive device) blast, is an extraordinary person.

Despite her nearly fatal injuries, Marissa has pushed on with her life. She's shown remarkable resilience, courage and optimism.

She's not unlike a lot of cancer patients I know.

But why am I talking about our brave female veterans on my CancerConnect blog? Because there has been a spike in breast cancer among America's female fighters over the last decade.

It isn’t widely known, but studies of women in the U.S. military show that they now have higher rates of breast cancer than women in the general population. There is considerable debate among researchers about how much breast cancer is on the rise in this group.

But it appears to be a significant increase.

Dr. Richard Clapp, a cancer expert at Boston University who also works with the Centers for Disease Control and Prevention, where he focuses on military breast cancer, recently told the Army Times"U.S. military women are 20 percent to 40 percent more likely to get breast cancer than civilian women in the same age groups.”

Why is this happening?

A study on Cancer Incidence in the U.S. Military Population concludes that this unwelcome spike is largely the result of the fact women in our military are more likely to be exposed to chemicals that may be related to breast cancer.

Other risk factors that increase their chances of getting breast cancer include long-term use of oral contraceptives and nighttime shift-work.

But military researchers are currently developing a breast cancer vaccine that is showing remarkable results in clinical trials.

Dr. Elizabeth Mittendorf, at MD Anderson Cancer Center, and Army Col. George Peoples, from Brooke Army Medical Center, have been working on this vaccine, known as E75, since the 90s.

They say it targets breast cancer patients who’ve been treated and are in remission, and can reduce the risk of recurrence by 50 percent.

Military medical researchers are also starting trials to develop vaccines that can protect women from ovarian and uterine cancers.

It's comforting to know that military research is leading to advances that will help our unsung heroes - America's women in uniform - and all women with cancer.

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Tags: Afghanistan, Army, Blog, Breast-Cancer, Cancer Vaccine, Iraq, Marisa Strock, Newsweek

October 8th, 2013 · 29 Comments

Should Oncologists Give Cancer Patients A Survival Timeline?

By charles charles

By: Jamie Reno

Last night, Valerie Harper, the beloved comedic actress from The Mary Tyler Moore Show and Rhoda, poignantly danced her last dance as a contestant on ABC’s Dancing With the Stars. But in her real life, she triumphantly dances on.

Earlier this year, Harper, 74, was diagnosed with leptomeningeal carcinomatosis, a rare type of cancer that was found in a membrane layer around her brain. It’s not brain cancer - that part of the story has been widely misreported - but it is a potentially deadly type of cancer.

Harper was told in March that she had just a few months to live.

valerie harper people

Valerie Harper

Seven months later, she’s still alive and well. Doctors say that, to date, she has beaten the odds.

Being told she was terminal clearly lit a fire under Harper, whose brave and joyous defiance of her own predicted demise begs the question: How often, if ever, should an oncologist give a cancer patient such a time-to-live marker?

When I was diagnosed with stage IV non-Hodgkin’s lymphoma, my original oncologist told me I’d “probably live three to five years, at the most.” That was 17 years ago.

Needless to say, I'm not a big fan of survival timelines. But I do understand that many cancer patients want to know. It's a complicated issue.

Dr. William Mitchell, a benevolent oncologist and head of palliative medicine – sometimes called comfort care or supportive care - at the Moores Cancer Center at the University of California San Diego, says there is no written policy at Moores for giving cancer patients a timeline of survival.

But he suggests most oncologists fall somewhere in the middle between giving all of their patients a survival timeline and giving none of them that information.

"As a doctor, I go where the patient wants to go. I will only talk about this if they want to talk about it," he says. "It can be useful information, of course. But it's important for physicians to remember that these are nothing more than educated guesses. Doctors can’t predict the future. By and large, we don’t have the tools in oncology to accurately estimate prognosis, and I don’t know that this is the worst thing in the world.”

So when a doctor does give us a timeline, should we listen, and take it seriously? Yes, of course, Mitchell says.

But should we assume that his or her words are etched in granite and that we have no chance of beating the odds? Absolutely not, he says.

I personally don’t believe doctors should give patients a timeline unless there is some level of certainty and/or the end date is likely very soon. Like days or weeks. And even then, it should ultimately be the patient’s decision to hear this information, or not.

As cancer patients, we can and do defy mortality statistics, which are often dated and do not take into account the uniqueness of each human body or the latest treatments, both traditional and alternative.

I certainly understand and respect that many cancer patients want to have as much information as they can gather about their health and their future. But Valerie Harper isn't the only cancer patient who has defied the odds.

I’ve met literally thousands of people with cancer these past 17 years who’ve lived longer than their doctors said they would.

I am not trying to give anyone false hope. I'm just saying that timelines can be wrong, and that we should all try as best we can to enjoy the remaining time we have in this life, whether it's a month... or 30 years.

What do you think?

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Tags: Blog, Brain Cancer, cancer, lymphoma, Timelines, Valerie Harper, Dancing With the Stars, Moores Cancer Center

October 1st, 2013 · 46 Comments

The Lymphoma Cancer Drug That Saved My Life Should Be Saved

By charles charles

By Jamie Reno

My favorite college journalism teacher once told me I should never start a story with the tired cliché, “It was a dark and stormy night.“ Well, sorry professor, but I’m about to break that writing commandment. Why? Because it really was a dark and stormy night in the fall of 1996, when I nervously sat in my oncologist’s office as he gave me the dire diagnosis: "Jamie, you have stage IV follicular non-Hodgkin's lymphoma."

Cancer?! I could not believe what I was hearing.

A few days later, while still in shock and denial, I reluctantly began a chemotherapy regimen called CHOP, with which I am sure many of you are familiar. It made me really sick but put me in remission for about two years. When the lymphoma recurred in early 1999, my doctor wanted me to do chemo again. My response? "Thanks, doc, but no thanks."

lymphoma warriorInstead, I told him I had made the decision to enroll in a phase three clinical trial of a then-experimental treatment called radio-immunotherapy, also known as RIT. The drug, Bexxar, which has long since been approved by the Food and Drug Administration (two RIT drugs have, actually: Bexxar and Zevalin), was virtually unknown at the time.

Even my oncologist was only vaguely familiar with it.

But I had done my homework. I'd learned that the percentage of complete responses among lymphoma patients who had taken RIT in trials was higher than with chemo, the remissions were evidently longer, and the side effects were relatively minor.

It was still a risk, but I was willing to take it.

I’m glad I did. I have not been treated for my cancer since, though last fall, after 13 years of remission, we did discover enlarged lymph nodes in my abdomen and I am now in “watch and wait.” Bottom line? Radio-immunotherapy saved my life.

Since that trial, RIT has been the subject of considerable controversy. Publications ranging from Newsweek, my longtime employer, to the New York Times have reported that RIT has not been utilized as much as it should by lymphoma patients for reasons that have nothing to do with its efficacy.

There are all sorts of reasons for this, ranging from inequitable Medicare reimbursements and other money issues to unfounded fears among patients and even some doctors that this treatment is dangerous and problematic because of its radiation component.

But there is frankly no justifiable reason why Bexxar, the drug that saved my life and the lives of so many others, is now being discontinued by GlaxoSmithKline (GSK).

As I was the first to report on my national news blog The Reno Dispatch back in August, GSK has announced that it will stop producing and selling Bexxar in February 2014.

A spokesperson for GSK told me the decision to discontinue Bexxar involved a "thoughtful and careful evaluation of patient needs and the clinical use of the therapy…. There are other treatment options available for patients with relapsed non-Hodgkin’s lymphoma."

But those other options are not as good.

Bexxar and Zevalin, which is thankfully not being abandoned  by its manufacturer, Spectrum Pharmaceuticals, are clearly the best option for many men and women who have follicular, the most common type of non-Hodgkin’s lymphoma, which is the seventh most common cancer in the United States.

GSK told me that its “commitment to the oncology community will continue through our efforts to develop and deliver other therapies to help address the unmet needs of patients living with cancer."

Really? I don’t see how a company that is committed to cancer patients dumps this amazing drug. The way I see it, GSK never properly marketed or promoted Bexxar- and now it’s about to go away for good. It's a mystery and a tragedy that a cancer treatment that works so well and has such minimal side effects could not be saved.

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Tags: Bexxar, Blog, cancer, GlaxoSmithKline, lymphoma, Radio-Immunotherapy, RIT, zevalin

July 17th, 2013 · 1 Comment

Cancer Genomic Testing is Revolutionizing Personalized Cancer Care

By navigator navigator

You’ve probably heard of genetic testing for cancer susceptibility, but the more recent and broader field of genomics is also having a wide-reaching impact on personalizing patient care.

To start with the more familiar term, genetics is the study of single genes and their effects. For example, certain inherited mutations in the BRCA1 or BRCA2 genes greatly increase a woman’s risk of breast and ovarian cancer. Awareness of these genes has recently been increased as a result of the attention brought to them by Angelina Jolie and the difficult decisions she faced. Mutations in these genes can be passed down through either the mother’s or the father’s side of the family. If a woman tests positive for a BRCA mutation, there are steps that she can take to reduce her cancer risk or to detect cancer at an early stage.

Genomics generally refers to the study of the study of the entire genome (all of the DNA in an organism). Genomics can consider multiple genes and how they interact with each other and the environment to affect health. Examples of genomic tests are the Oncotype DX test which is now available for use in breast, colon and prostate cancer. The Oncotype DX tests evaluate the activity of several genes in a sample of tumor tissue in order to assess the likelihood of cancer recurrence. This information about recurrence risk is then available to help patients make decisions about their treatment in consultation with their doctor.  Oncotype DX can help many patients avoid receiving chemotherapy unnecessarily, or provide confidence that chemotherapy is the best treatment option.

Similarly, research that combines genomics with pharmacology (pharmacogenomics) is studying how genetic variation affects an individual’s response to particular medications. Variability in genes involved with drug metabolism can have a substantial effect on drug response and drug side effects. Progress in this area is likely to contribute to more individualized, more effective, and less toxic drug treatments.

In short, research in genomics is expanding at a rapid rate and will have a profound effect on many aspects of disease prevention, diagnosis, and treatment. Diseases such as cancer are remarkably complex; genomics provides researchers and physicians with tools to explore and address these complexities.

Learn more about the role of Genomic testing:

The study of genes and proteins can help us understand our risks for various cancers, choose the best treatments when a diagnosis is made, and take preventive steps against disease types for which we may be at high risk.

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Tags: Blog

June 26th, 2013 · Leave a Comment

Why A Second Opinion is Important after a Diagnosis of Cancer?

By navigator navigator

A second opinion is an important part of becoming educated about your cancer and your treatment options. The more you can learn about your diagnosis and your treatment options, the better chance you have of receiving the most appropriate treatment. Cancers are now more treatable than they once were, but there are also many more treatment options and more complicated procedures. Getting a second opinion will help you understand these options and help you make an informed decision about which is best for you. Second opinions will not offend competent physicians. Second opinions will, however, provide reassurance to you and your family and ultimately allow you to receive the most appropriate therapy.

What is a Second Opinion?

A second opinion is a review of the cancer diagnosis and the treatment recommendations of the physician who is treating the cancer by another, independent physician. Either the patient or the primary physician can initiate the process of getting a second opinion. Usually, patients obtain a second opinion after being referred to a second physician or to a special team of experts in a cancer center, called a multidisciplinary team. This doctor or team of doctors will review the following:
• Pathology report (how the cancer looks under the microscope),
• The extent of cancer
• The physical condition of the patient
• The proposed treatment

The doctor(s) then communicate their opinion regarding treatment to both the patient and the primary physician. Second opinions are more likely to be comprehensive, or inclusive of every possible perspective, when performed in a cancer center with a multidisciplinary team, which usually includes surgeons, oncologists, radiation therapists, and sub-specialist oncologists.

Why Do I Need a Second Opinion?

A second opinion is part of the education process that is critical for cancer patients. The treatment of cancer has evolved tremendously in the recent past. As a result, many cancers are now more treatable than they once were, especially if the appropriate initial treatment is selected. In order to receive appropriate treatment, patients must understand the type of cancer they have and the treatment options that are available. However, there are also many more options for treatment and these options are more complicated than in the past. For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated. Also, a second opinion provides the opportunity to get information from someone other than the physician who will be directing treatment, which is usually the main source of information for most patients. Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options available.

Is Getting a Second Opinion Considered “Bad Etiquette”?

Patients, relatives and friends need to keep in mind that second opinions are a normal part of cancer management and they should not be concerned about hurting the feelings of the primary physician. If you decide to obtain an independent second opinion, it is important to communicate with the primary physician not only to obtain needed information for review, but also to keep the treating physician informed. Most physicians welcome the opportunity to have another consultant review and approve their care decisions, or perhaps suggest another treatment that may be better. There are instances when a patient may disagree with their physician and will need to change physicians, but this is not the main purpose of a second opinion. Most of the time, you simply need to make sure you are getting the best advice.

Who Pays for a Second Opinion?

One of the problems with second opinions is that insurers may not cover the expense. However, many insurance and health care companies do pay for such opinions and acknowledge the importance of second opinions. In some situations, insurers will even insist on a second opinion. This is often the case when the primary physician advises an expensive treatment. The best protection for cancer patients who are Health Maintenance Organization (HMO) members is to seek a second opinion even if she or he has to pay for it. HMOs usually try to diagnose and treat patients within their system because the more money the HMO spends on second opinions and treatment outside the HMO, the less money there is available for operation costs and profits. This may cause a conflict of interest between the patient and the HMO, especially if very expensive treatment is only available outside the HMO system. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. For these reasons, it is a good idea for HMO members to get a second opinion and make sure they are informed about clinical trials or other promising new treatments. Most reputable HMOs can, however, deliver state of the art treatment for most cancers. If you are considering undergoing a specialized treatment, such as cancer surgery, within your HMO, it is important to inquire about the number of such procedures performed each year by the HMO and the results.

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Tags: Blog