Kennedy and connection to LC

I happened t be watching a TV feature on Kennedy last night when it was mentioned that his daughter, Kara had had Lung Cancer so I googled her this a.m. and found this article. Interesting story that illustrates how important it is to get more than one opinion when faced with a cancer diagnosis.

Here's the story:
Kennedy, his children, and cancer

Globe Staff / May 25, 2008
Kara Kennedy was sitting in a doctor's office at Johns Hopkins Hospital with her father, Senator Edward M. Kennedy, when she got the news. Not only did she have cancer of the lung, it was inoperable. The doctor told her she might have less than a year to live.

For Senator Kennedy, the prognosis was unacceptable. Kennedy thanked the doctor and headed out the door. Over the next several days, he feverishly immersed himself in the subject of his daughter's cancer, and ultimately found a Boston surgeon who operated on her. Five years later, she is cancer-free and runs 5 miles a day, her mother said.

"He really saved her life," said Joan B. Kennedy, the senator's former wife and the mother of Kara. "I am so grateful that he is my children's father because he has always gotten them the best medical care."

Long before he was diagnosed with a malignant tumor on his brain, Kennedy had an extraordinary and intimate relationship with cancer. Two of his three children have faced severe forms of the disease, while a third had a noncancerous tumor on his spine. His former wife was also treated for breast cancer in 2005.

But Kennedy, 76, has met his children's cancers head on, arming himself with an arsenal of information and opinion that helped them to vanquish the disease. He has prayed and embraced experimental treatments and sought third opinions, and sometimes more. Many close to the family believe that the same tactics that he employed with his two children, both of whom faced possible death and are now cancer-free, will instruct and fortify him in his own battle against the disease.

"This family has had cancer laid in front of it and each time they have beat it," said Dr. David J. Sugarbaker, chief of thoracic surgery at Brigham and Woman's Hospital, who operated on Kara Kennedy. "They have an insatiable appetite for information and answers. They are looking for victory. That makes all the difference."

John V. Tunney, a former US senator and a close friend of Kennedy's, said that years of dealing with cancer doctors, both for his children and in his Senate work will also help him. "He knows that cancer can be beaten, because he's seen it in his own family time and again. We all hope that will help him in the days ahead."

For Kennedy's three children, cancer has shadowed their lives since Edward Kennedy Jr. lost a leg to bone cancer in 1973 when he was 12 years old. Patrick Kennedy, a Rhode Island congressman, was hospitalized for over a month in 1988, when he was 20, after his tumor was removed. Kara, 48, the oldest of the three children, has a "very good prognosis," according to Joan Kennedy, but she gets frequent check-ups to see that there is no recurrence.Continued

By LTLCS
Posted August 27, 2009 at 10:57 am
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For those that don't know, Kara Kennedy she had Small Cell Lung Cancer. She is still NED today.

I have a friend who is friends with Kara Kennedy.

That's all I can say on that. I wish Kara a long and healthy life along with the rest of us.

This is sad about Ted Kennedy.

Hugs,
Connie

By Munker
Posted August 27, 2009 at 11:03 am
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Connie. I am on the board for the Lungevity Lung cancer walk in NYC this fall and we are desperately seeking a high profile speaker. Do you think there is any chance that Kara would consider joining us?

By teacherN
Posted August 27, 2009 at 12:45 pm
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Seeing the cancer link in the Senator's family, it presses the need for genetic testing for the future---like the BRCA gene that can cause more than just breast cancer: pancreatic, colon, skin, prostate, and more. I hope genetic testing will become widespread as the genome is analyzed further.
Nancy

By ericnilson
Posted August 27, 2009 at 10:55 pm
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Good article about Kara Kennedy, Ted Kennedy and lung cancer at below URL.

http://www.funrose.com/kara-kennedy-lung-cancer/7436.html

Kara Kennedy Lung Cancer
By admin

Kara Kennedy Lung Cancer-Kara Kennedy Allen, 49, Ted Kennedy's only daughter, was diagnosed with inoperable lung cancer in late 2002. At the time she was only 42 years old and the mother of two young children. Most of us have heard about his family’s struggle with cancer, but his role in being an advocate for his daughter with lung cancer is heartwarming.

Sitting with his daughter in 2002, Ted Kennedy found her diagnosis of inoperable lung cancer – a diagnosis that counts survival rate in months rather than years – unacceptable. So he took matters into his own hands. He researched the disease, researched doctors, and eventually found a surgeon he could put his faith in to remove Kara’s tumor. Dr. David. J. Sugarbaker, Chief of Thoracic Surgery at Brigham and Women’s Hospital, was able to remove her cancer, and following chemotherapy, she is still with us today.

Ted Kennedy’s support went beyond being his daughter’s patient advocate. He encouraged his daughter in her faith and prayed for her every day.

I am unaware of the stage of Kara’s lung cancer. Surgery is not an option for everyone, and despite our best efforts, most people diagnosed with inoperable lung cancer do not survive as long as Kara. But, at least in Kara’s case, not accepting a first opinion, and being a participant in rather than a recipient of healthcare, was important.

Today, as we mourn Ted Kennedy’s passing, I am grateful for this part of his life that may not make the headlines, but perhaps made all the difference in his daughter’s life. At the same time, my heart goes out to those who don’t have a father like Ted Kennedy to play their advocate.

By LTLCS
Posted August 28, 2009 at 12:29 am
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Munker,

Nope Kara wouldn't be an advocate. And YES she would be wonderful at it, but she doesn't want to do it. I respect her wishes.

Trust me she's been asked more then we can imagine. Kind of like how many times people send emails to Oprah, and Ellen etc., etc. Who knows, maybe one day someone will step forward and make a difference in Lung Cancer, It could be anyone right here at LCA... That would be nice!

Yes we do need a strong spokes person, I wish someone would come forward.

Hugs,
Connie

By Z
Posted August 28, 2009 at 8:25 am
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If you ever hope to have a professional career (look for a job, etc), or god forbid date, being a highly visible cancer survivor could be an issue. You could be discriminated against... It is also hard to make cancer the main focus of one's life - it will wear you out, and wear out everybody around you. I have found it is better to keep it to myself, and find a good shrink:)

By Munker
Posted August 28, 2009 at 9:17 am
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I have a professional career and really don't give a damn what others think. Cancer is far from the main focus of my life but trying to rid the stigma and raise money to find bettr diagnostic tools and a poss cure is def. a focus. I will continue to be vocal and in your face about this disease as long I have the strength it takes. Fighting this cause does not wear me out but rather empowers me to try and help others that are not able to fight due to the devasting effect of this disease. I guess i do have to respect others wishes but I really do not get it. Those that choose not to fight for our cause are buying in to the stigma and that is a big problem for all of us.!

By marilou122
Posted August 28, 2009 at 10:25 pm
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Ted Kennedy supports rationing health care....I wonder how his daughter would have gotten "immediate treatment" with Obama Care! But, of course he is a "Kennedy" so he wouldn't be subject to Obama Care like the rest of us!

By LTLCS
Posted August 28, 2009 at 10:34 pm
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We should ALL be so lucky to get the top notch medical care and insurance that ALL the Senators and there (families) recieve.

Hugs,
Connie

By mare
Posted August 29, 2009 at 10:17 am
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Thank you Munker. Well said. I feel much the same way as you. Keep up the good work.
I have team on the Free to Breathe 5K race through the the National Lung Canccer Partnership,(first race in Jacksonville, FL for Lung Cancer). Our team alone has raised over 6,000 dollars.
We too, would love to have a high profile person come forward to draw more attention to our cause. Kind of sad.
I had posted more about the race but found out this was not allowed here. Not sure I can even say what I just did. Hope I don't get booted! Also kind of sad.
Mary

By Munker
Posted August 29, 2009 at 10:25 am
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It is sad but it also disgusts me really! It seems that every other cancer has a spokesperson! I have tried reaching out to so many people and popular tv shows but have not had one positive response. I posted regarding our NY fundraiser and it was removed too! I guess they want us to go through Lungevity Foundation for all fundraising matters and keep this site for support.

By LTLCS
Posted August 29, 2009 at 10:35 am
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Munker, Are you sure they didn't MOVE your NY fundraising message to the right side of each page here. Where it says; Help from Lung Cancer Alliance
Fundraising and awareness

Check and see if it's over there. It's basically in a different forum is how I look at it.

I think they are trying to keep this forum or area for support , then on the right side of each page they have all kinds of different forums. Just my thoughts on it.
Hugs,
Connie

By Alisa
Posted August 29, 2009 at 11:00 am
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Hi Munker! I'm on the NYC Volunteer Committee and we need volunteers on the day of the event. Are you in the city? Do you coordinate with Diana Fusco by any chance? I posted about the event on the events site, but hardly anyone goes there and I'm not allowed to post it on the boards (their rules). PM me if you'd like.

By vatssurvivor
Posted August 29, 2009 at 11:11 am
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Way to go Munker.....I like your style.

As for Ted Kennedy, he has had Carcinoid Cancer for 13 years. My lung tumor was carcinoid, and I found this out from the carcinoid sites.....

By Munker
Posted August 29, 2009 at 11:49 am
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Alisa I am on the committee and am copied on the emails. My company is a platinum sponsor and I am walking and raising money individually.

Welcome to Inspire!

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