Experience Project is launching a new online cancer support network , The Cancer Support Project, on October 1st, 2007.

Experience Project is built around dynamic groups of users who come onto the platform, share narratives and personal stories about their life experiences, and then connect with others who are going through the same experiences. Experience Project will never ask for your name; you can keep your identity completely private while meeting new friends who can understand you.

The central goal of The Cancer Support Project is to provide a hub for emotional and psychological support for all experiences involving cancer, including experiences as a survivor or a caregiver, something that is not currently widely addressed as many sites focus on sharing information regarding therapies. The Experience Project will also be launching a Facebook application within The Cancer Support Project to enable people to show their support and raise cancer awareness via Facebook, MySpace, blogs and web pages.

The Cancer Support Project will be launching on October 1st, but you can check it out now. I know I will be checking it out for sure! The Cancer Support Project is located here.

According to an article in CANCER, mental illness and emotional distress in patients with advanced cancer is often overlooked by oncologists, but proper management can improve a patient's quality of life.

The review article was written by Dr. Michael Miovic and Dr. Susan Block from the Dana Farber Cancer Institute and Brigham and Women's Hospital in Boston.

Miovic and Block found that 50 percent or more of patients with advanced or terminal cancer suffer from at least one of three major disorders: adjustment disorders, anxiety disorders and depressive disorders. Medical management of cancer has improved in the last decade, but management of mental health issues has lagged, according to the authors. Studies show that depressive symptoms can even impact patients' lives even more than pain.

The authors recommend listening as the most important screening tool in the oncologist's toolkit.

A new study finds that many people with cancer, over sixty-five percent according to this particular study, said they would be interested in attending a support group. However, only a small minority actually join one.

Study participants said that they wanted practical medical information promptly after diagnosis and about twice as many wanted medical information over emotional support. Eight-two percent wanted groups to include discussion of spiritual issues, however, Allen Sherman, Ph.D, the lead author from the University of Arkansas, said that this may be influenced by the fact that the participants mostly came from the Bible Belt.

The study also found that people prefer drop-in groups as needed and do not mind if the group contains people with different types of cancer.

Recent studies suggest that support groups do not increase survival time, but they do improve coping skills and mood. As always, with any sort of support or counselling, it is wise to use your gut. If you're getting something out of it, that is great. If not, it's best to move on and find the support you need elsewhere.

Karen Spengler has been fighting cancer for 10 long years. Cancer's taken a lot out of her--a kidney, part of her leg bone, her hair, which she's lost nine times--but it hasn't taken her spirit, or her love of a good mystery.

Her Story is this: The owner of a Kansas City bookstore specializing in suspense novels, called I love A Mystery, Spengler also runs a support group for breast cancer survivors, called Turning Point. And though probably no other member of the group has, like Spengler, undergone treatment almost continuously for a decade, she's the backbone and the energetic force in the group.

She credits life-saving drugs to her survival against all odds, but there's another important aspect to her battle with cancer -- her positive attitude. Spengler considers herself lucky when most others would see the opposite.

Though the prom is mostly a distant memory for me, I can recall with vivid detail the feeling that it was the crowning achievement of my life and though I've since had much more definitive moments, at that time it was everything. As someone who had a pretty typical upbringing, I can't imagine what it would be like going through that stage of teenage angst with cancer. My biggest problem was finding a dress, while others are wondering how they will get through the night after a round of chemo.

I find this story of a group of teens with cancer and their opportunity to attend the prom inspiring and simultaneuosly heartwarming and heartbreaking. Armed with wheelchairs and life-saving machines, they posed for pictures, danced and mingled with fellow cancer survivors, and for one night at least they had a chance at normalcy, a chance to worry about finding a dance partner and keeping their make-up fresh instead of worrying about the fight for their life.

I recently wrote about Jesse Gruman's book, "Aftershock -- What To Do When The Doctor Gives You -- Or Someone You Love -- A Devastating Diagnosis" as covered by Jane Brody of the NY Times. Brody continues her coverage this week, with more tips from Gruman.

First up, know your doctor. Gruman advises finding a specialist who is up-to-date on your disease and has lots of experience. She also recommends checking with the state medical board regarding any disciplines or malpractice suits against the physician and assessing any local information obtained from other patients and friends. Dr. Gruman also advises not to be surprised if the doctor cannot answer questions like, "Am I going to beat this disease?" or "How long can I go on like this?" Gruman notes that it is "difficult, if not irresponsible" for a doctor to guarantee certain outcomes.

Gruman also advises getting a second opinion and not worrying about insulting your current physician for doing so. Gruman suggests framing such a request as a desire, "to feel completely comfortable with the treatment you suggest" or even blaming someone else, such as your family for insisting on a second opinion.

Patients seek second opinions for many reasons, including the desire for more information, difficulty communicating with their current physician, dissatisfaction with how treatment is progressing or being told nothing more can be done. Dr. Gruman writes, "While it is true that many diseases cannot be cured, it is never true that there is nothing more to be done."

Jesse Gruman's book, "AfterShock: What to Do When the Doctor Gives You - or Someone You Love - a Devastating Diagnosis", is featured in a column by Jane Brody in the New York Times Health section this week.

Gruman, 53, is a survivor of four serious health crises: at age 20 she received a diagnosis of Hodgkin's disease, 10 years later one of cervical cancer, then five years ago came down with viral pericarditis (a serious infection of the heart's lining) and just three years ago was diagnosed with colon cancer.

Gruman offers much advice for those given a life-threatening diagnosis. For the first two days, she advises to slow down, yet don't act as if nothing is happening, take care of yourself in the meantime, and do what you need to do in regards to having friends and family around (or not).

Gruman advises not to give too much thought to what you might have done to cause the condition. Gruman points out that "the past is past and that the problem now is how to handle the future."

When the doctor's visits start picking up as treatment plans begin to take shape, Grubman advises bringing someone with you to doctor's appointments to write down what is said or even tape recording the sessions.

With each health crisis, Gruman says she was "stunned, then anguished" and astonished by "how much energy it takes to get from the bad news to actually starting on the return path to health."

In a report in CANCER, University of Pennsylvania researchers report that Pennsylvanians with cancer are not having their psychosocial needs adequately met. Over the past twenty years, there has been little improvement in meeting such needs, including those related to daily living, transportation, financial and emotional issues.

The study involved a needs assessment survey sent to about 2,500 participants. Nearly two-thirds of the respondents had at least one unmet psychosocial need including emotional (anxiety, depression), physical (fatigue, nausea, vomiting or pain) and treatment-related needs.

The researchers found that the young reported the most unmet needs. "This may be due to the fact that their resources and support systems may already be stretched to the max in dealing with these problems," says Frances K. Barg, PhD, MEd. Barg goes on to explain that cancer in younger people is "incredible disruptive in terms of role function," including work, parenting and schooling.

In a recent post, I wrote about a study that showed that if we can put a name to our feelings, our brains undergo real changes; our fear is reduced along with the intensity of negative emotions.

Sounds like great advice. Except sometimes it's hard to know exactly what we are feeling.

Marshall Rosenberg, the author of Nonviolent Communication, has created a model for compassionate communication. Rosenberg's model "guides us to reframe how we express ourselves and hear others by focusing our consciousness on what we are observing, feeling, needing, and requesting."

One part of the Nonviolent Communication model is trying to figure out exactly what we are feeling. Rosenberg encourages the use of true "feeling words" when we are communicating our needs to others.

Here is the list of feelings from the CNVC. They include feelings that we might be experiencing when our needs are being met and not being met.

If we can pinpoint how we are feeling during times of stress, whether it be daily stress or the stress related to a cancer diagnosis, recovery, or even a grieving process, we can ask for what we need in a more effective way. And hopefully catch some of that brain-calming effect.

According to a new study in the June 15th issue of CANCER, use of support groups varies widely by cancer type and there are few referrals to such groups by physicians.

Dr. Jason Owen of Loma Linda University and his team found that about one in four cancer patients did join a support group. Patients with blood malignancies and breast cancer were more likely to join a support group than those with lung and skin cancers. Predictors of use include female gender, Caucasian race, higher education level, and symptoms of depression or anxiety.

Dr. Owen concludes, "This study sheds light on which individuals with cancer use these services. Assistance in identifying and accessing support groups should be a standard of care for all patients receiving curative, follow-up, or palliative care for cancer."

Hopefully, physicians and other healthcare providers working in oncology will continue to improve their efforts to help patients and caregivers find support groups in their communities.

In November, we told you about Leroy Sievers and how his sense of hope was restored after the tumors in his lungs shrunk. His cancer went in to hiding for a while, only to re-emerge with a vengence. He's got tumors on his spine and his ribs, plus remnants of the tumors on his lungs to boot. He's been through it all before but he's not taking it well this time, because he finally felt like he was starting to live a normal life again.

He's been brought back to reality in a way that people who've never had cancer can't really fathom. To look death in the eye and still carry on is something I can't comprehend but nonetheless, I feel shaken and sorry for what he has to endure, and will say a silent prayer that he can beat this beast once again.

Magnetic resonance imaging (MRI) showed in a study presented at the 2007 annual meeting of the American Society of Clinical Oncology to be better at detecting ductal carcinoma in situ (DCIS) than mammograms. MRI's were also shown to be very good at detecting high grade DCIS.

Women are recommended by the American Cancer Society to get an annual mammogram after the age of 40, do clinical breast exams starting in your 20's and if you are in a high risk group to receive annual screening with a breast MRI.

In a study among almost 6,000 women who were screened with both MRI and mammography, MRI detected 92 percent of DCIS cases where mammography only detected 56 percent of cases diagnosed.

What's your body worth? $1 million? $2M? $20M? Philip Johnson settled on $1 million , the amount his former employer, Qantas Airlines, paid him for exposing him to Hexavalent Chromium while at work, which eventually lead to him being diagnosed with lung cancer. Johnson settled on the amount out of court, because in his words, "I can no longer work because of my condition, so I'm just happy to have the money to keep going with...I just feel relieved that it's all over actually."

It's impossible to put yourself in his place unless you've been in a similar situation, but somehow $1M doesn't seem enough, especially considering the emotional trauma he and his family must have endured due to his illness. Good health is priceless.

What do you think? Does $1M cover the cost of a life? Is Qantas to blame or is it just the luck of the draw?

Ovarian cancer is hard to detect and is usually found in the advanced stages. It is the most deadly of all gynecological cancers. Transvaginal sonography (TVS) screening has been associated with detecting ovarian cancer at earlier stages of the disease.

TVS is a procedure used to examine the vagina, uterus, fallopian tubes, ovaries, and bladder. An instrument is inserted into the vagina that causes sound waves to bounce off organs inside the pelvis. These sound waves create echoes that are sent to a computer, which creates a picture called a sonogram. The test is also known as a transvaginal ultrasound.

The researchers' findings appear in the May issue of Cancer. In the study, colleagues assessed the value of annual TVS screenings in over 25,000 women. Participants had to be at least 50 years of age with no cancer symptoms or at least 25 years of age with a family history of ovarian cancer.

Thumbing through my teenage journals, I find pages upon pages of rants directed at my parents, my little brother, the popular kids in school and how utterly unfair and tragic it is that I wasn't allowed to watch Melrose Place. So it makes me feel pretty shallow and petty to read something like this, about an 18-year-old who writes about how much he wants to survive his battle with cancer in his online journal.

He began writing his innermost thoughts after he was diagnosed with Alveolar rhabdomyosarcoma, a rare cancer that affects muscles, tendons and connective tissue. The strain of treatment caused him to all but lose his voice and without a way to get his words out, he started writing them down. His writing is stunningly articulate and supremely heartbreaking but also full of wisdom and somewhat hopeful, even though his chances of survival are slim. To anyone who takes their life for granted too often, I offer this, in his words:

"The way I see it, we're not entitled to one breath of air. We did nothing to earn it, so whatever we get is bonus. I might be more than a little disappointed with the hand I've been dealt, but this is what it is.... I don't believe you can ask for any more, but if I could ask for something, it would be to be able to go outside into the glorious spring air, feeling healthy and blissfully clueless as to how lucky I was for it, if only just for an hour."

I am moved beyond words.