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.

British Columbia's Cancer Agency offers a new, innovative support group for men whose partners have been diagnosed with advanced cancer. One participant was Rob Barrett, whose wife Diana was diagnosed with advanced lung cancer. Barrett, like many men, did not want to turn to professional counselling, but he did agree to attend such a support group at the BC Cancer Agency Vancouver.

According to the leader of the group, John Christopherson, men tend to be less upfront about their needs and therefore there is a real lack of social support for men.

According to Christopherson, "It isn't typical therapy in the way that most guys think of therapy. It is not conventional and follows no set guidelines, and yet everyone gets something out of it and comes back month after month."

Rob Barrett continues to attend the group, one year after his wife's death, because he feels that he can give back something and help make sense of his grief by helping others.

A new study shows that there is no empirical or statistical evidence proving that grief counseling is harmful to clients, contrary to common beliefs. The study was conducted by Dale G. Larson, PhD and William T. Hoyt, PhD.

A report from 2000 claimed that almost 50 percent of "normal grievers" deteriorate as a result of grief counseling. This report has frequently been cited in both scientific literature and the popular press.

Larson and Hoyt took another look at the data and found that the data on which this report was based have never been published, came from a dissertation that was never peer-reviewed, and utilized a statistical method from another student's dissertation that had also never been peer-reviewed. Larson and Hoyt conducted a peer review of the dissertations and reviewers were unanimous in their conclusion that the report is flawed.

Hoyt states, "It is disturbing that such radical claims, which contradict clinical experience and even common sense, could proliferate in journals, at conferences, and in national reports without anyone's ever acting on the basic scientific obligation to examine the data and analyses on which they were based."

According to Larson and Hoyt, the effects of grief counseling were positive, although smaller than those seen in other forms of counseling.

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.

When a woman receives a diagnosis of cancer, if she is married, her husband is thrust into the role of caregiver, a role that can be overwhelming. Our culture's expectations of men can complicate this new role even further.

Here is some advice for husbands whose wives have been diagnosed with cancer, from Rene Barrat-Gordon, LISW, a social worker at The Cleveland Clinic:

Never falsely reassure her there is nothing to worry about. Anyone with cancer worries.

Don't feel the need to fix everything.

Have at least one person you can talk with besides your partner. And consider the "safety" and friendliness of a support group.

It's OK to cry-even in front of your partner. It doesn't mean you're weak; it means you love her and you feel afraid, anxious or sad.

For more advice on this topic from Barrat-Gordon, please go here.

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.

Jeffrey Berman, professor of English at the State University of New York at Albany, has published an essay in Inside Higher Ed, which is adapted and reprinted with permission from his latest book, Dying to Teach: A Memoir of Love, Loss, and Learning.

Berman talks about writing a eulogy for his wife Barbara as she fought end-stage pancreatic cancer,before her death, as a celebration of her life. He then shared this eulogy with his college Expository Writing class, "in which students share with classmates self-disclosing essays on a wide variety of topics that are rarely discussed in the classroom."

According to Berman, this revelation made many of his students cry but it also allowed them see their teacher in a new light. Berman writes, "My new self-disclosure was different, and they now saw me differently. I was still their teacher, but I had now become another member of the class, one who was struggling, like everyone else, with a personal issue."

Berman weighs in on whether this was the right thing to do, "I don't believe that teachers should unburden themselves to students or seek psychological counseling from them, but I do believe that a teacher's careful self-disclosure of a real-life experience can become a profound educational experience for everyone in the classroom."

Personal revelations, including those of profound joy and profound pain, can make us stronger. We learn to tell our stories and perhaps more importantly, we learn to listen.

Over 75% of patients want to shake their doctor's hand upon meeting them for the first time and about half would like to be called by name, according to a report in the June 11 issue of Archives of Internal Medicine, head authored by Gregory Makoul, Ph.D., at Northwestern University Feinberg School of Medicine, Chicago.

Unfortunately, in this study, in over 50% of encounters, doctors did not mention patient's name at all upon meeting.

On the flip side, over half of patients would like doctors to introduce themselves using their first and last names, followed by about 30% who would like doctors to use only their last name.

When I meet a new doctor, I do like to be greeted by name, but just my first name is fine. As far as shaking hands, for me, that isn't necessary.

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.

The one constant thing that gives people fighting cancer hope is the continued support of friends and family. Phone calls, emails, a surprise or planned visit at the door that has a big hug on the other side, a held hand over coffee or tea, or sitting patiently by their side as they go in for treatments. When that support falls by the wayside, it makes the determination to fight this disease or any other less worth the effort. In my humble opinion as someone fighting cancer, we sometimes fight harder to overcome disease for others more than ourselves. Because it is in their caring and the will in their eyes that gives us a much brighter hope than we find in ourselves. It is the lack of support or caring that sets off an internal depression that makes it ten times harder to find the will to fight. People seem to find it easier to hug a tree than a human. Try to imagine if you will sitting in a house alone and thinking about a disease that can run rampant through your body. It is hard to imagine and something that we do not want to think about. Yet many many people face that struggle every day of their lives.

So if you haven't reached out to someone you know, a neighbor, a friend, someone in your church or where you work, or even a family member that is struggling with cancer or any other disease, then find it in your heart to do so. It will make a difference. And if you have reached out to someone once or even twice, know that once is not enough and twice is not enough. No matter how much you think you are being a nuisance, that constant reminder of love and support is 95 percent of your friend's battle. The old saying "You never know who your true friends are until you go through a crisis and see who stands by our side" is very very true. So go stand by someone's side today, tomorrow, and for many days to come to offer support and encourage strength until their fight is successful. Even a phone call goes a long long way.

For those of you who stay in touch with me by phone and emails and that come knocking on my door in this time of need, I thank you very much for giving me the strength and will to survive.

Listed here are three organizations that set a strong example to help the cause of cancer research:

Men With Heart --Their mission as seen on their website:

We are husbands who are doing something constructive rather than resigning ourselves to helplessness. We are sons who have seen our mothers courageously fight an insidious disease. We are brothers who want to stand beside our sisters in this battle. We are relatives, friends, lovers, colleagues, neighbors, and admirers of the women who are struggling with, often beating, and, regrettably, sometimes losing the fight with breast cancer.

We do our best to raise awareness, funds, and smiles. We participate in a variety of breast cancer events, wearing our trademark yellow shirts, including the Avon 2-Day Walks, the Komen 3-Day Walks, and the American Cancer Society Making Strides Walk. We walk with the goals of spreading good cheer, encouraging a spirit of camaraderie, and helping our fellow walkers. We also host a gala party every year and a racing event in the fall. We support and get involved with a variety of other breast cancer causes, organizations, and events.

Since our inception in 2001, Men With Heart has raised over $600,000 for breast cancer prevention, treatment, and awareness.

Men Against Breast Cancer -- The MABC mission is to provide targeted support services to educate and empower men to be effective caregivers when breast cancer strikes the family of a loved one: as well as target and mobilize men to be active participants in a fight to eradicate breast cancer as a life threatening disease.

MABC recognizes breast cancer is a family issue that devastates the entire family. Our philosophy is to leverage the support of the whole family to help the patient, with special emphasis on the important role of the husband/partner in caring for the woman he loves. At the same time, MABC recognizes and supports that the ultimate decisions regarding treatment and care are those of the patient.

Together in Breast Cancer Survival: A Men's Caregiver Support Group --Their mission to be a presence that will give you the support and tools you will need to be a proactive and informed caregiver to your loved one. Our goal is to be here for you as you journey with your loved one through the cancer diagnosis, surgery, prognosis, recovery and beyond.