Cancer survivor Ted Kennedy, Jr. talks about the latest cancer treatments and online resources
Feb. 22 -- Since losing a leg to bone cancer in 1973 at age 12, Ted Kennedy, Jr. - son of Senator Ted Kennedy, D-Mass., - has become an outspoken advocate for people with disabilities. An attorney specializing in health and disability law, he has worked with policy makers to help expand job opportunities for the disabled.
Now he's getting the word out on resources and support for people with cancer.
A new study conducted by The Wellness Community, Stanford University and the University of California at San Francisco found that women with breast cancer who participated in real-time online support groups reduced their depression, distress and negative reactions to pain while increasing their zest for life.
The study led to the development of the Virtual Wellness Community, an online support group for cancer patients.
"Having a place to share experiences and questions with others, as well as learning how to cope all from the comfort of their home, will greatly benefit cancer patients," says Kennedy, a board member of The Wellness Community.
Read the transcript of our chat with Kennedy below.
MODERATOR
This morning, you launched an online support group for cancer patients.
Tell us about it.
TED KENNEDY, JR.
Today, we launched the Virtual Wellness Community, supported by
The Wellness Community, a national non-profit cancer organization.
We have 20 centers all over the country.
We launched the first-of-its-kind online, professionally-facilitated support group for cancer patients.
This also marks the day the findings of a research project are being released--Stanford University and the University of California at San Francisco did a pilot study of breast cancer survivors and determined, through the study, that the women who participated in the online support group achieved the same benefits as women in traditional face-to-face support groups.
So we think there's enormous potential to use the Internet as a mechanism for cancer patients to share their experiences with one another all over the country.
MODERATOR
You've been involved with a number of cancer initiatives over the
years. What makes this one special?
TED KENNEDY, JR.
What makes this special is that there is a huge need for cancer
survivors in addressing the fear and stress, the anxiety and lack
of knowledge that all cancer patients have.
The Wellness Community addresses the isolation that a lot of patients experience and the loss of control that a lot of patients experience. It empowers cancer patients to take a more active role in their recovery. If people are more empowered, they won't feel as depressed and hopeless.
Aimee
How do the online support groups work?
TED KENNEDY, JR.
You log on to "thewellnesscommunity.org" and sign up for
a free, professionally facilitated support group.
The groups are divided by cancer type, or you can sign up for general cancer support groups. People are screened by The Wellness Community to ensure that they are indeed cancer patients. Then they are assigned to weekly support groups at a time that's mutually convenient for all the members.
Cathie Coleman-Hoppe
What do you think the most common fallacy told to newly diagnosed
cancer patients is? Do you believe that the medical community is
honest and completely forthcoming with cancer patients?
TED KENNEDY, JR.
The fallacy may be that the psychological and mind-body aspect of
recovery isn't import. (Physicians often downplay it). The Wellness
Community provides augmentative services, in conjunction with traditional
care they receive from their doctors.
I think the medical community is pretty honest and forthcoming, but it's up to the cancer patient to take an active role in their treatment.
Diane Gesell
I work at a children's hospital in CT. When I explored the site,
I couldn't find too much geared for teens or youngsters who are
diagnosed with cancer. Did I miss it, and if your website doesn't
have support for younger people, do you plan to include it in the
futures. Thanks, Diane Gesell.
TED KENNEDY, JR.
No, you didn't miss it. This is an area The Wellness Community is
studying very closely. They're evaluating the potential role that
The Wellness Community can play with younger patients. But they
don't have an active pediatric cancer program currently.
Geoff Hartman
I am a 42 year old registered nurse, diagnosed with sinus cancer
in July 2000. My questions is this: "What role can I play,
and how can I help those facing the influx of information that literally
"bombards" newly diagnosed cancer patients?"
TED KENNEDY, JR.
I would encourage you to introduce yourself to the closest Wellness
Community to you and give them your name and tell them you're interested
in serving as a role model for others in your situation. There are
20 Wellness Communities around the country,. and there may be one
near you. Or you could long on to our new website.
MODERATOR
Tell us about your own personal struggle with cancer.
TED KENNEDY, JR.
Essentially, I don't think my struggle with cancer was all that
different from most other cancer patients. I experienced the same
emotional isolation and lack of self-esteem as a result of my hair
loss. I was scared--a lot of the same feelings and emotions many
cancer survivors experience.
I feel incredibly grateful today. I think I received excellent medical treatment and I had wonderful support from my family. But it was a tough couple of years.
MODERATOR
Tammi Amick writes: "I too was a child stricken with bone cancer.
I have been told throughout the years, we actually had the same
cancer. Mine struck in 1969, when I was 2 and a half years old.
What kind of health issues surrounding your cancer have you had
to deal with after the amputation if any? What kinds of sports did
you participate in as a teenager and young adult? What kinds now,
if any?"
TED KENNEDY, JR.
The sports I participate in are skiing, sailing, swimming and tennis.
In terms of the ongoing health issues, I went through 2 years of
chemo after I lost my left. Today, I don't really have any health
problems. I do have insurance problems from time to time.
MODERATOR
A question from Heidi: "I was diagnosed with salivary gland
cancer last April. I underwent seven weeks of radiation after the
surgery. The surgery left me with some facial paralysis and a large
scar on my neck due to a radical neck dissection. Due to the long
recovery time I lost my job (of fifteen years) and I am finding
it very hard to find another one--I think due to my disability.
I am a capable 41 year old with a Masters degree in Biology and an excellent work history. I want to be able to take back my life and resume some sort of "normal"routine.
Is it a common situation for cancer patients to be discriminated against when looking for employment? Any suggestions? Does The Wellness Community have any strategies for this situation? You are a great role model for all of us."
TED KENNEDY, JR.
Thank you. The Wellness Community does not provide legal advice
for job placement. But we do provide resources for people to figure
out how to help themselves in these areas.
Cancer patients are covered under the Americans With Disabilities Act, if their cancer results I substantial impairment, or if people perceive them as having an impairment.
In fact, the Garrett decision (a U.S. Supreme Court decision last year) dealt with a breast cancer survivor who was fired from her job by the University of Alabama.
I would encourage you to contact the local CIL (Center for Independent Living). There are about a thousand of them all over the country. They provide resources for people with disabilities and are knowledgeable about local attorneys who are familiar with local laws. You may want to speak to someone in your community about what your options may be.
Michelle in DC
Hi, I'm just curious to know what other services are offered by
The Wellness Community and who they are available to?
TED KENNEDY, JR.
The Virtual Wellness Community will also provide similar services
offered at centers around the country, including a mind-body room
for guided relaxation, a library of resources and features such
as a kitchen with nutrition information.
It will also post physician and nurse lectures and other services for cancer patients and their loved ones. I invite everyone to check out the website or The Wellness Community in your city.
MODERATOR
Thanks to Ted Kennedy, Jr. and all those who joined the chat.
Moderated by ABCNEWS.com's Saira Stewart
