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Internet remains a frequent first source for cancer information, says NCI report

The Internet continues to be a first source of health information, including information about cancer, according to a new National Cancer Institute report.

The study included a telephone survey, and was last conducted in 2003. Since that time, the use of the Internet for cancer information remained unchanged, however there was an increase in people using the Internet to e-mail their physicians. However, people's trust in what they find on their Internet searches has declined slightly according to the report.

Women were more likely to search for cancer information from all sources than men.

Internet information validates doctor opinions

As soon as I was diagnosed with breast cancer, I started reading, researching, and investigating. I hunted down every bit of information I could find about the disease that had somehow tunneled through my breast tissue. What I found kept me in the know. I felt informed and in control -- and a bit skittish too.

My doctor once told me to stop reading. It was causing me too much worry, too much unnecessary stress. And while I didn't stop reading altogether, I did cut down on my Internet research. Since anyone can post anything on the Internet, it can be an iffy source of information. So iffy that some doctors -- like mine -- have expressed concern.

Doctors may be able to breathe a sigh of relief, though. According to a study published in the April issue of the International Journal of Medical Informatics, using the internet generally convinces patients that their doctors are right on track with their medical opinions.

Source: MAMM magazine, May/June 2007

My Life Line website: connect. inspire. heal.

Marcia, the creator of MyLifeLine, has a dream: To make a difference in the lives of cancer patients and their families. A cancer survivor herself, she understands what it means to be diagnosed, undergo treatments -- and still be present and available to the questions of concerned family members and friends.

At age 27, Marcia was diagnosed with stage III ovarian cancer. To say it was unexpected is an understatement of vast proportions! At the time of the diagnosis, she was living in Chicago and working as a flight attendant for American Airlines. She went from flying the friendly skies to a complete hysterectomy, followed by 6 months of chemotherapy. One clear memory is the spiritual support she received from family and friends. "For that I am eternally grateful," she says.

MyLifeLine.org is a nonprofit organization that encourages cancer patients and survivors to create free, customized websites. Their mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing.

Are women lacking knowledge about breast cancer treatment options?

A survey sponsored by CancerCare, a national non-profit cancer support organization, stated that a majority of women surveyed said they know a fair amount about breast cancer however, many remain unaware of the recent progresses made in treatment. Fewer than one in four women in the survey have heard of new therapies available for breast cancer, revealing a gap between awareness and information that women can use toward getting a better treatment plan for themselves.

Diane Blum, executive director for CancerCare, says "While great progress has been made in breast cancer awareness through public education and increased media coverage, women with breast cancer would benefit from more information about advances in treatments after surgery".

Key questions to ask your physicians when diagnosed with breast cancer:

  • What kind of breast cancer do I have?
  • Which treatments are available to me?
  • What are the risks and benefits of those treatments?
  • What is the risk my breast cancer will come back or spread to another part of my body?
  • Where do I go for support when I need it?

For the full survey results visit CancerCare.

Prescription for finesse: An ode to "chemo brain"

I wrote the title of this post -- Prescription for finesse -- on May 30. Then I saved it, knowing I'd come back and churn out a post on the topic. So here I am, ready to write. But I can't remember for the life of me what I'd intended to write about. I know it wasn't about anything news-related -- I would have saved a link to a news story had this been the case -- so it must have been something personal I'd planned to share with you.

My memory has been failing me lately. Once, I completely forgot my sister's phone number -- I call her every day so to go completely blank on how to reach her is a little odd. Another time, I left my cell phone in a drawer in my bathroom -- a drawer that holds my brush and hair clips and headbands -- and I had to call the phone from another phone to locate its whereabouts. I use the whole chemo excuse every time something like this happens. Chemo brain. A convenient explanation for my flighty tendencies.

My doctor says chemo may not be to blame. Perhaps I would have done these things prior to cancer and now I just interpret all my behavior through the chemo filter. Maybe. But I don't remember being so forgetful before toxic drugs traveled my veins. And I don't remember losing the ability to recall lost information. It's frustrating. I want my mental sharpness back. I want to know what I had in mind for this title.

For now, I must accept that what is gone is gone. For the future, I will put in writing everything I wish to remember. As for that story idea: if it ever surfaces in my brain's lost and found bin, I will happily return to write about it.

Thought for the Day: Who is going to handle communication?

playing telephoneMy husband and I have a friend who was recently diagnosed with a sarcoma. I don't have more specific details about what kind of cancer it is, except that he went to the emergency room with groin pain and the doctors found a mass. Our friend is being treated at the Mayo Clinic, but he and his wife return on weekends, and we have dinners with our large extended family of friends, all together, every Friday night. We have been having these Friday night dinners for years now. We call them Friday Night Literary Society as many of the friends teach in the English department at the local university, or used to, as I did.

The point of these dinners, though, is to have fun. It is not to mention cancer, treatment, or anything else. Our friend doesn't want to talk about it, doesn't need the reminder. I'm sure it's never far from his thoughts. I sat next to his wife tonight, and she talked about how well he was responding to treatments, how he wasn't nauseaus from the chemo. The doctors say he will need surgery in August, and will probably have to have his right leg amputated. It's stark and horrible, and we are all affected by it.

Because we are a tight-knit bunch, we all talked among ourselves because we didn't want to ask the family too many questions, didn't know what they needed from us. We all wanted details, but we didn't know how to get them. The family wanted us to know details, but didn't really want to contact everyone individually. Fortunately, or unfortunately, we are a group who has known tragedy. Another friend died of cancer a few years ago. Yet another was covered yesterday in the Survivor Spotlight. There are more. So, the solution to the communication problem is this: Select a point man. Select one person who is responsible for updating everyone else on what is going on.

Think about this:

Continue reading Thought for the Day: Who is going to handle communication?

Readers: Here's how to learn more about post topics

Today, I've been asked twice to offer more specifics about the information contained in posts. I thought I'd communicate my thoughts on this matter publicly so you all may benefit.

First, let me share that blogging is like talking to a friend -- Hey, did you hear about that new study about the breast cancer vaccine?, I might say to my neighbor before I explain the overall gist of the news I happened upon. The purpose of blogging is to communicate a few details and to spark interest, not to capture every speck of information on the topic. Digging up the nitty gritty is for you, the reader.

Your quest for more knowledge takes just one click. Once you read a post, look to the bottom left and you will see a blue link titled Read. Click here and you'll land at the news source related to the post. If you don't find what you're looking for here, just type some key words into Google and search for more. If bloggers happen to find news but there is no internet link -- this happens with magazines and other print publications -- the source will be noted at the end of the post.

If a post contains personal perspective, like this one, you won't find a Read link -- that's because the source is in the blogger's head. You are welcome to leave a comment requesting more information about these posts.

Now this whole lesson on the Read link does not mean you cannot ask questions of bloggers -- please do -- but if you desire the quickest route to post details, this link is your best bet.

I hope this is clear. And I hope you find exactly what you seek in this world where cancer is one hot topic.

Thought for the Day: Fighting cancer on the road

The best cancer treatment centers are not always right around the corner. Sometimes, it's necessary to travel far and wide to reach facilities offering the latest and greatest in cancer therapy. And when a back-and-forth commute is not possible due to daily or long-term treatment protocols, lodging becomes a necessity. And often, a hassle.

If you find yourself confronted with a stressful travel scenario, key into Joe's House. It's sure to ease your burden.

Think about this:

Joe's House is a non-profit organization that serves hospital staff and cancer patients in search of lodging. Founded in 2003 by Ann Calahan who for six years struggled to find appropriate accommodations during her late husband's cancer battle, Joe's House makes life a little easier for those fighting cancer on the road.

Joe's House features a centralized listing of lodging information for patients to access online or with a simple phone call (877-563-7468). For online searches, a drop-down menu allows patients, loved ones, and caregivers to locate lodging by selecting states, cities, and treatment facilities. Details on each lodging facility are available with information on amenities, rates, and reservation methods, and requirements.

I just gave this system a whirl. I chose Florida as my state, Gainesville as my city, and the hospital where I receive my treatment. Up popped four lodging locations -- two are free for cancer patients, one runs $10 per night, and the other charges $77 per night. Fortunately, I live right around the corner from my treatment center. But for those who don't, this service -- it's free -- is definitely worth trying.

Thought for the Day: Breast cancer risk less than you think

While sitting in the lobby of my hospital's MRI center on Friday -- time for the annual breast MRI -- I found myself a bit irritated by an appointment mix-up that kept me waiting much too long for a procedure that in and of itself is no real treat.

As I waited to bare my breasts and dangle them through square cut-outs on an MRI table, I flipped through a few ancient magazines -- why are lobby offerings so old? -- and as is usually the case when I read just about any publication, out jumped some cancer news.

So maybe the wait was worth it. Without it, I wouldn't have found this enlightening bit of information, this thought for today.

Now I warn you -- this item I am about to share comes from an October 2005 issue of Parenting magazine, so it's a bit outdated. But it still holds some truth. And if you remember nothing else from this message, I hope you'll take to heart this one lesson -- women tend to overestimate their chances of developing breast cancer.

Think about this:
  • 46%: What women estimate is their lifetime risk of getting breast cancer
  • 13%: Their actual risk

Thought for the Day: A matter of life and death

I just received my University of Florida alumni magazine and right smack in the middle of the publication is a story about cancer. The gist of the article is that there's an explosion of effort and activity in cancer research at this institution -- much like all over the nation -- and featured are all sorts of new cancer techniques and strategies and treatments. But one thing in particular stood out to me. What I read -- in the space of just two short sentences -- jumped off the page and really made me think.

This one thing is what I am about to share, and I'm calling it my Thought for the Day. It's a great morsel of information -- short, sweet, easy to digest, and perfectly powerful -- and so I invite you to read on, let this string of words sink into your mind, think about it over the course of the day, and then determine how you might use it in your own life. And then come back tomorrow, when another Thought for the Day will await you.

Think about this:

More than half of all cancer deaths can be prevented by maintaining a healthy lifestyle. Poor nutrition, obesity, physical inactivity, and cigarette smoking together account for 63 percent of all cancer deaths.

BEYOND breast cancer magazine makes March 20 return

The second issue of the magazine Beyond: Live & Thrive After Breast Cancer will hit newsstands March 20.

The magazine, one of many targeting individuals with manageable conditions and diseases, such as allergies, heart disease, diabetes, and rheumatoid arthritis, stands out as an upbeat, positive, feel-good package of information and inspiration.

University of Mississippi journalism professor Samir Husni says magazines of this sort that succeed are the ones offering up a good dose of chicken soup for the soul. This is definitely a magazine good for the soul.

Beyond editor Martha Miller Johnson calls the magazine a purveyor of hope and information, a source of reliable facts, figures, and features for the growing community of survivors living with breast cancer. Beyond is for "the women who has been through her initial treatment and now sees her life through a different prism," says Johnson.

"Her body's changed, her skin's changed. To her, it's not a death sentence; it's a condition she just has to live with. More and more women are living with breast cancer."

The soon-to-be-released publication spotlights breast cancer survivor Deanna Favre with husband Brett Favre and includes stories about breast cancer and black women, chemotherapy and weight gain, and the most important questions to ask your doctor.

Why pick up a copy of Beyond's Spring/Summer issue this March 20? Because breast cancer attacks so many aspects of our well-being, says one survivor of the disease.

"It's your identity, it's your sexuality, it's your womanhood. Fertility. For many of us, it throws us into menopause early," she says. "Every aspect of your emotional and psychological well-being is impacted by cancer and the treatment. So that kind of puts it in its own category, I think. So you combine that with the fact that there are so many women going through it, and I think you do have a market there for something like this."

I couldn't have said it better.

One hot topic: Some children's bath products linked to cancer

I had no idea my February 10 post Some children's bath products linked to cancer would spark such great debate. At the very moment I write, the post has received more than 64,000 hits and 70 comments.

I must admit when the comments started rolling in, I was a bit nervous. Even though I merely reported the facts on this topic, had no claim to any of the information, and didn't even share my opinion on the matter, the highly charged words written by so many well-meaning readers made me feel a bit like I was caught in the middle, like I started an argument and needed to jump back in, sort things out, and create harmony among those responding to my words.

But then I realized debate is not such a bad thing. It sheds light on all sorts of valid viewpoints. It educates. It raises awareness. And that's what cancer causes are all about.

Having read all the comments that now are officially assigned to this one post, I am so much more enlightened than when I summarized the story I came across revealing that some bath products contain a bit too much of a chemical called 1,4-dioxane, a probable human carcinogen that is already known to cause cancer in animals.

All I really knew at the time I wrote the post is that the FDA has no regulation over this chemical and that cosmetic companies must monitor themselves. Some don't do such a good job, and herein lies the debate.

Some readers say big deal, what's the harm really in a little extra dash of chemical in a whole tub of water. Perhaps if our children soaked all day for many days in this chemical, cancer might strike. But a quick bath with a tiny trace of 1,4-dioxane is not likely to do any harm. One reader wrote that we shouldn't stress so much about headlines that scare us into believing everything causes cancer, that we'll probably live a whole lot longer just living our lives free of constant worry.

Another camp of readers say a little bit of something bad is still too much. Over the course of a lifetime, how do we know our children won't pay for our mistaken belief that this hype is just -- hype. Some cancer surviving readers wonder if their cancer was caused by their plentiful childhood bubble baths. And some go to great lengths to find natural, organic, chemical-free products, whatever the financial cost.

A few consultants for these natural products left their own comments, claiming to help those consumed with anxiety. Others scolded these business people for capitalizing on the fears of others with products that have not been proved any safer.

There are advocates of moderation who wrote. And individuals seeking more information. And people who located resources for others to investigate.

There is indeed a rich commentary on the link between bath products and cancer that follows one short post I wrote late one night, after my own children were bathed -- with Dove soap and generic shampoo -- and put to bed. And I am indeed happy to know my small contribution on the topic has generated such a powerful windfall of thought and concern.

Young women's breast cancer conference

I wanted to remind anyone who is interested in attending the 7th Annual Conference for Young Women Affected by Breast Cancer that it is being held this weekend in Arlington, Virginia.

I will be attending and plan on giving updates over the weekend on the many different seminars and workshops. This will be my fifth conference since I was diagnosed in December 2001. It is such an amazing experience.

The seminars and workshops are very informative and you can pick and choose different topics depending on where you are in the treatment process or if you are newly diagnosed with breast cancer or have had a recurrence. There is something for everyone who is a young breast cancer survivor.

I also enjoy being in a room filled with women who are now not just other young survivors but friends.

My friend Deb and I were diagnosed only a few days apart and met on the YSC message boards. She came to visit me this weekend and we celebrated reaching the milestone of five years of survivorship!

www.youngsurvivorsconference.org

Cancer Blog's coverage of the 2006 San Antonio Breast Cancer Symposium

The San Antonio Breast Cancer Symposium is an international scientific symposium for interaction and exchange among basic scientists and clinicians in breast cancer.

The objective of the symposium is to provide state of the art information on the experimental biology, etiology, prevention, diagnosis, and therapy for breast cancer and pre-malignant breast disease, to an international audience of academic and private physicians and researchers.

The 29th annual San Antonio Breast Cancer Symposium was held from December 14 - 17 in 2006.

Here is a recap of the coverage of the San Antonio Breast Cancer Symposium on The Cancer Blog:

Sunday Seven: Seven thoughts on coordinating cancer care

Nearly half of all cancer patients and others in their households have trouble coordinating cancer care, according to a recent public health poll.

Many who participated in a recent telephone poll revealed they were confused about prescriptions, were sent for duplicate tests, and received conflicting information about their treatment plans.

Experts say choreographing care is one of the most important challenges in the world of cancer. Navigating the maze of medical madness can be emotionally draining and can even hurt a patient's chance of recovery.

Now is the time to become advocates for our own health -- before we are left behind. So get ready to take charge -- and consider these seven thoughts on actively coordinating your own cancer care.
  • Today, cancer patients spend more time at home and not in hospitals like they did generations ago. This leaves them to manage much of their care on their own -- often a monumental and overwhelming task. Patients, or a designated friend of family member, should document every tidbit of medical information, including names, phone numbers, medical records, instructions, medications, dosages, appointments, questions, responses, and more. Jot down symptoms and worries and concerns. File away pamphlets and handouts and bills and receipts. Don't count on memory alone to provide all the details. Allow for back-ups. They will serve you well.
  • Most cancer patients need a whole team of doctors -- radiologists, pathologists, medical oncologists, radiation oncologists, surgeons -- but each doctor may handle only one aspect of care while no one runs the show. It's the perfect scenario for disrupted and piecemeal care, says one doctor. Consider searching for comprehensive cancer centers where a variety of professionals are housed under one roof and patients can often meet with all their doctors at one time. Currently, only about 10 percent of cancer patients are seen at this type of large center.
  • Many doctors are stuck in electronic gridlock because doctors in one building may be unable to access the records of doctors in other locations due to incompatible computer systems or paper charts. Patient advocates say all patients should have easily accessible electronic medical records. One cancer center hopes to start a program that would allow for storage of patient records on small, portable USB flash drives. Patients would keep the drives and could plug them in at home or at their doctor's office.
  • Cancer patients often suffer from lack of information. Long-term survivors, for example, often have trouble recalling exactly what was done to them. And over time, doctors may relocate or pass away, leaving survivors with little to reconstruct their journeys.
  • Shortly after diagnosis, patients should request from their doctors a care plan -- an outline of how doctors plan to treat their cancers.
  • Patients should also receive a treatment summary at the end of therapy. This should outline all surgeries, chemotherapy, radiation, medications, and dosages.
  • A plan for ongoing care should be offered to all cancer patients so they know how to monitor their health. This plan should include guidance on screening tests, follow-up visits, and potential long-term side effects.
"A lot of anxiety results from not knowing what comes next", says one patient advocate. "People armed with good information tend to make better decisions."

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