Support for LateToSchool

DrDrewsmom · February 20, 2008, 3:05pm

I am sorry if this is not the place to bring this up, but I live in an area where radon levels are extremely high. From my VERY limited research/knowledge, radon gases are the second cause of lung cancer.

I guess I’m talking about it because after reading about LTS’s experience (lung cancer in a nonsmoker) these last several weeks, I thought it might be smart to have our home tested for it.

also, I am sorry if this has already been mentioned…this is a very long thread!!

epistrophy · February 20, 2008, 8:12pm

LTS: Here’s just one example of someone who - as will be the case with you one day - has made the transition from beating cancer herself to providing support to others who are fighting their own battles with this disease:

Welcome to amandacarter.com. My name is Amanda Carter and I am a seven year cancer survivor. I started this website because I use it to communicate cancer awareness and support to fellow cancer patients and their families.

In December 1999 I was diagnosed with Hodgkins Disease during my third semester of College at Southern Illinois University of Edwardsville over Christmas break. During my treatments this website served as an avenue of therapy to document my journey through diagnosis, treatment and finally remission. I have been in remission from cancer for over seven years now.

Each year I participate in the Relay for Life, an American Cancer Society fund raising event to raise money for cancer research and patient support programs. On December 4, 2005, I was given a new reason to Relay. At the age of 55 my mom suddenly passed away from AML Luekemia. She was never given a chance to fight the disease, we never knew she was sick. I miss her dearly.

This year I was selected to represent the Eastern Missouri Region as a Hero of Hope. Twenty eight Heroes of Hope were selected, representing fourteen different regions covering six different states. Please select the Hero of Hope link at the right for more information on this very special program that I am honored to be part of.

[Amanda</a> Carter About Me](<a href=“http://www.amandacarter.com/about]Amanda”>http://www.amandacarter.com/about)

[Amanda</a> Carter](<a href=“http://www.amandacarter.com/]Amanda”>http://www.amandacarter.com/)

<a href=“http://www.amandacarter.com/pics/journal1.jpg[/url]”>http://www.amandacarter.com/pics/journal1.jpg</a>

marite · February 20, 2008, 8:44pm

LTS:

I’m sorry to read that you have been feeling poorly. I know the feeling of being physically weak but mentally alert and perhaps overstimulated.We had just moved into our house three weeks earlier when I had to have surgery. I decided to use my recovery time to design my new kitchen. The first architect I interviewed (from the hospital bed we had rented) thought I was nuts. He was not hired. But while my body was weak, my head was teeming with ideas. I hope you can put this time to good use, but please don’t overdo it!

mythmom · February 20, 2008, 9:02pm

marite: You are another marvel! LTS: I know that feeling; the mind is over-stimulated and the body exhausted. I really like your choice of the word goofy to describe it.

Thinking of you.

epistrophy · February 21, 2008, 9:23am

The National Lung Cancer Partnership announced today they are joining three distinguished organizations: the Lance Armstrong Foundation, the Oncology Nursing Society Foundation and the International Association for the Study of Lung Cancer in continuing the mission to increase opportunities for lung cancer researchers by co-sponsoring new lung cancer research grants.

Lung cancer is the leading cancer killer of men and women in the United States but it receives less research funding than almost any other cancer.

If we are going to conquer this disease we need to bring new researchers and specialized professionals like oncology nurses into the field, said Joan Schiller, M.D., president of the National Lung Cancer Partnership, deputy director of Simmons Comprehensive Cancer Center and division director of Hematology/Oncology at the University of Texas-Southwestern Medical Center, Dallas. At the same time, we need to add to research that will help us identify best practices when it comes to helping survivors live better lives.

The Lance Armstrong Foundation and the National Lung Cancer Partnership will co-sponsor a Young Investigator survivorship grant, which will fund lung cancer survivorship research projects, such as an investigation of access to quality survivor care and services for lung cancer survivors.

National Lung Cancer Partnership and the Oncology Nursing Society Foundation are co-sponsoring the Lung Cancer Nursing Research Grant, which will support research addressing lung cancer and focusing on areas that will advance the science and practice of oncology nursing, such as research into nursing-sensitive patient outcomes.

The third new grant in conjunction with the International Association of the Study of Lung Cancer (IASLC), will provide research funding for the training of young investigators interested in lung cancer research as well as require recipients to take one course per year within their doctoral program in an area that the candidate has not received prior training, such as biostatistics, epidemiology or clinical trials.

Funding for lung cancer research is hard to come by, and this creates an enormous obstacle to researchers in all specialties, said Regina Vidaver, executive director of the National Lung Cancer Partnership. By removing that obstacle for some researchers we are supporting progress toward better treatments and someday a cure."

[National</a> Lung Cancer partnership](<a href=“http://www.eurekalert.org/pub_releases/2008-02/nlcp-nlc022008.php]National”>http://www.eurekalert.org/pub_releases/2008-02/nlcp-nlc022008.php)

[Lung</a> Cancer Information - National Lung Cancer Partnership. Women. Research. Change.](<a href=“http://www.NationalLungCancerPartnership.org%5DLung”>http://www.NationalLungCancerPartnership.org)

CountingDown · February 21, 2008, 10:20am

LTS,
My experience has been (personally and based on what others on my cancer listserves have reported) is that some insurance companies will cover some portion of trial expenses. My insurance will cover the trial protocols and testing, but leaves the medication expense to the trial. It also covers a portion of travel expense if required. I’ve heard of folks whose coverage gets them nothing; others report that their insurance pays every penny.

If I switch from Gleevec to the new Novartis drug (nilotinib), though, I can get the drug via the trials for free but have to go through various testing protocols (which my insurance will cover) in order to be accepted to the trial and qualify for the meds.

I am thankful every day that my benefits administration experience and infertility history have given me the skills to navigate this morass.

epistrophy · February 22, 2008, 8:04am

But while much of the focus has been on these [breast and cervical] cancers, they are not in fact the biggest killers for women.

Around 1,900 die from lung cancer each year, compared with 1,100 with breast cancer.

And while cases of lung cancer in men in Scotland have fallen from more than 3,300 in 1984 to 2,500 in 2004, an opposite trend has been seen in women, with cases up from 1,400 in 1985 to more than 2,100 in 2004.

Mike Unger, chief executive of the Roy Castle Lung Cancer Foundation, said the success of the breast cancer lobby had made it harder for other charities to make a big impact.

“The big supermarkets are happy to take on breast cancer as a campaign they support because it does not affect anything they sell,” he said.

“But they can’t take on lung cancer because they sell cigarettes.”

[Science</a> is winning the battle against women’s biggest fear - Scotsman.com News](<a href=“http://news.scotsman.com/scotland/Science-is-winning-the-battle.3799689.jp]Science”>http://news.scotsman.com/scotland/Science-is-winning-the-battle.3799689.jp)

latetoschool · February 22, 2008, 10:52am

Epistrophy, thank you for the links, especially the news about the National Lung Cancer Partnership. Perhaps that will be the place to focus resources once I can get to and hold remission.

Countingdown, I’m with you; however, I don’t spend any time considering what may or may not be covered - I just throw money at it. Of course, most people cannot do that; beyond the insurance coverage question, lung cancer is financially disastrous to most people, even if they manage to survive it.

I have been speaking a lot lately with the five year survivor in Texas; he makes his living breaking horses and doing whatever it is ranchers do with horses, livestock, etc. His wife works from their home for a traditional employer, and she also helps with the ranch. He also has military benefits, and I believe a small military pension. He is struggling greatly financially - one, he is suffering some late effects from the aggressive radiation and chemotherapy treatment; two, his business reputation is harmed by the lung cancer. He is having to fight pretty hard to hold onto his professional relationships and keep them productive. On top of that, because of some of the late effects, he tells me he has to rest every three or four days. He is only in his early 50’s…anyway, he is considering not for the first time selling the ranch. I sincerely hope he does not do so, as I believe his abililty to govern the ranch is a large part of why he continues to survive. He will never be able to hold a traditional job, ever again, at least not through a private employer - no one is going to hire someone with a history of lung cancer when there are other candidates available who do not have a cancer history…

latetoschool · February 22, 2008, 10:53am

Marite, it is supposed to rain in Washington all day tomorrow, so, I have scheduled the entire day and night for mandatory sleep!

mythmom · February 22, 2008, 11:21am

Glad to hear that. Sleep well.

epistrophy · February 22, 2008, 7:24pm

Monday, November 19th, marked the day I transitioned from amateur cancer survivor and advocate to professional lobbyist! Well, not really, but it was the first time I ever met my Congressman – Dem. Chris Van Hollen. When I first started working for NCCS, I was not exactly familiar with the term “grassroots advocacy.” The word advocacy just seemed so exclusive and intimidating. I thought the only way I could be a part of the movement was to join some club or group, but little did I know I had been an advocate since my diagnosis 2 ½ years ago. 

After I was diagnosed with cancer at the age of 22, I quickly became experienced in speaking up and asking my doctor questions about my treatments, side effects, and medications. I thought I was just trying to be proactive, involved, and educated. Looking back, I now realize that I was an advocate. 

Advocacy, however, can take on multiple levels and forms, so when I was asked to accompany Ellen Stovall, Michael Bergin, and Mark Gorman (and Eleanor) from our office to meet with Representative Van Hollen I was excited, yet nervous at the same time. This would be my first time meeting a United States Congressman, an important leader and policy maker in our country, and I had no idea what to expect. 

The night before the big “Congressional visit” I did three things. I re-read the CCCIA fact sheet, went on my Representatives’ website, and figured out what I was going to wear. Even though I was being accompanied by others, I still wanted to be prepared. 

When we finally arrived, the office was actually smaller and less intimidating than I anticipated. We sat at a larger table surrounded by young staffers in make shift cubes while we waited for our meeting. We were eventually greeted by the Congressman as we took seats in his office. Once we got started, time seemed to fly by and we were there longer than most – over 30 minutes. Even though Ellen led the discussion, each of us took time to introduce ourselves, tell him our story, and why we were there to advocate for the CCCIA. I soon realized the anxiety and nervousness disappeared. I was a cancer survivor, I knew my experiences and why this was important to me, and most importantly I was a constituent and resident in his district. Even though he is an important leader in our country, at the end of the day, he is just a representative of the people living in his district. The issues that are important to me should be important to him; and they were. He told us about his personal connection to cancer and how his mother passed away earlier this year from a long battle with breast cancer. It brought the conversation from a technical legislation issue, to a personal one as he described the difficulties in coordinating the care for his mother just a few months ago. He was very welcoming to why we were there and agreed with the issues presented. I know not all Representatives will make immediate decisions, but the ground work was laid months prior and he agreed to sign on!! I know I didn’t do much, but I felt like a professional lobbyist! I was part of something that will hopefully change the way our nation delivers quality cancer care and it wasn’t that difficult or intimidating. . . .

[NCCS</a> Dan Waeger, stage IV lung cancer survivor](<a href=“http://www.canceradvocacy.org/community/survivor-profiles/dan-waeger-stage-iv-lung.html]NCCS”>http://www.canceradvocacy.org/community/survivor-profiles/dan-waeger-stage-iv-lung.html)

epistrophy · February 23, 2008, 8:43am

In a room overflowing with people at the UCSF Comprehensive Cancer Center, David Jablons, MD, professor and chief of thoracic surgery, gave the audience, many of whom are patients under his care, a reason to hope.

We are making progress there are exciting sciences that are being advanced, said Jablons. With early detection, lung cancer is curable. We cant accept the status quo that only 15 percent survive five years and only 5 percent survive 10 years.

Jablons cited a landmark study recently published in the New England Journal of Medicine by Claudia Henschke, MD, PhD, and David Yankelevitz, MD, the founders and principal investigators of the International Early Lung Cancer Action Program. Results from the 13-year study on screening for lung cancer demonstrated that if lung cancer is detected and treated early, 88 percent of patients could expect to live 10 years or more.

We have the technologies, and the words lung cancer and cured do go together in a sentence, he said.

<hr>

For Thierry Jahan, MD, associate clinical professor of medicine, treating lung cancer patients is no longer palliative care. Were in an era where treating patients with lung cancer is beneficial for their survival and their quality of life, he said.

<hr>

Judging by the innumerable framed proclamations and resolutions displayed, city governments from throughout the region were in agreement that National Lung Cancer Awareness Month is a big deal.

The proclamations, which cited November as the month to recognize this leading cause of cancer death in the United States, were set up as the backdrop to a Nov. 17 panel discussion, titled Lung Cancer: New Insights New Hope, hosted by UCSF Thoracic Oncology and by Lung Cancer Alliance California.

As evidenced by all of these acknowledgments, lung cancer does matter and people are paying attention, said Neifert.

The event was an opportunity to invite cancer survivors and their family members to a session to hear UCSF faculty and lung cancer survivors speak on new developments and living with the disease.

Guest speaker Lori Hope, a four-year lung cancer survivor and author, spoke about the importance of communicating cancer sensitivity. She was joined by 17-year breast cancer survivor and two-year lung cancer survivor Joyce Lavey in speaking out about the stigma that lung cancer is associated with smoking.

More than 87 percent of lung cancers are smoking-related, with one in 10 smokers developing lung cancer. For people who quit smoking, the risk is reduced significantly, although former smokers are still at greater risk than individuals who never smoked.

Angie Lee Ow, a lung cancer survivor and chair of a support group from Sacramento, asked members of the audience to identify themselves as lung cancer survivors by standing. More than three-quarters of the crowd stood up.

Were all survivors, and our survivorship began the day we were diagnosed, said Ow.

[UCSF</a> Today - Lung Cancer Survivors Find Reason for Hope](<a href=“http://pub.ucsf.edu/today/cache/news/200612085.html]UCSF”>http://pub.ucsf.edu/today/cache/news/200612085.html)

Northstarmom · February 23, 2008, 9:53am

"Natmicstef, one of the issues is that many of us with lung cancer don’t tell anyone. Not under any cicumstances. One of the very first things I did in the hospital, hours after diagnosis, was organize the business people and we made decisions on who would be told (and what were the legal and ethical implications etc.). Bottom line, you can count on one hand the number of people in my world who know I have lung cancer. "

You might want to rethink this. I haven’t posted before on your thread because the issue is painful because one of my best friends (a woman who never smoked, incidentally) was diagnosed with lung cancer almost 3 years ago.

She is still alive, thanks to an amazing amount of guts (Her mom survived Aushwitz, her dad survived a Russian prison camp), a very supportive husband, excellent insurance, and the fact that both of them are very proactive about her treatment. When the cancer was discovered, it was inoperable. It also had already spread to her liver. Since then, it spread to her brain.

She told her friends, family, and associates from just about the minute that she was diagnosed, and has gotten an enormous amount of support.

I think that she would have gotten the support even if she had been a smoker. What I found helpful about how she handled things is that she has been very honest, which has made it easier for me to know how to respond. Shortly after her diagnosis, we even met for dinner along with my younger S, who then was only 17. She lives out of town and hadn’t seen him for about 3 years. What was beautiful was that we didn’t have to pussyfoot around her illness. She straightforwardly talked about her hopes and fears and that allowed us to be open with her, too.

This was my first time being with anyone who had just been diagnosed with cancer, so her openness helped me a lot because I wanted to do the right thing, but didn’t know how.

Last Thurs., friends organized a prayer/meditation/reiki experience in which people across the country did their spiritual technique of choice on my friend’s behalf. I participated in it and could literally feel the vibrations even though I was doing this all by myself.

Throughout her illness, congregations at various places of worship throughout the country have been praying for my friend, and she feels this has made a difference.

There’s a wonderful you tube by a woman whom I know who has colon cancer. Since CC doesn’t allow you tube links, the way to find it is to Google “Anne Rudloe” and “You tube”. In part of the video, she talks about how neighbors whose religious orientation is very different from hers, have been very supportive to her.

I notice that you live in Miami. Anne is a marine biologist in Panacea, Fl. and is very easy to connect with even if you don’t know her.

Northstarmom · February 23, 2008, 10:27am

The exact name of the you tube video that I mentioned is, “Anne Rudloe Speaks.”

momof3sons · February 23, 2008, 5:01pm

LTS,
I am just back from a CC “meet-up” in NYC. There were a dozen CC posters in attendance, and we wanted you to know that we took time out to salute you with a toast. “To your good health!” We “clinked” our glasses of sprite, diet coke, water, seltzer and regular coke. ;)

padad · February 23, 2008, 5:04pm

Northstarmom, I too had the experience with a friend/colleague with whom our friendship grew much deeper after knowing his diagnosis, and I sat alone with him at the end. That said, the decision of when to inform others is necessarily a personal one, irrespective of the rationale behind the decision process.

jym626 · February 23, 2008, 5:11pm

momof3-
^^^… and clinked our coffee cups too, to LTS :)

jmmom · February 23, 2008, 5:14pm

padad, I have had a similar experience sitting alone with a friend, long after her diagnosis but not very long after she realized she was not going to win her battle. It was not at the very end, as we lived 3000 miles apart, but it was in the last two weeks. It was an experience where she was able to impart to me some of the insights and wisdom that had become hers. One of the most beautiful times I have ever spent.

Like you, I don’t think that means that LTS should or shouldn’t inform others. Just that the informing can, in fact, be a gift to all.

epistrophy · February 24, 2008, 7:40am

“Since you are a cancer survivor, it would be wise to run a few tests,” said the neurologist I recently visited. I cringed when I heard his words. The thought of a few tests didn’t bother me: I like it when a doctor pays attention to my history. However, the word “survivor” did.

My tests came back negative, with no signs of illness, but my negative reaction to “survivor” remained. So I went on a quest to see how other women with cancer histories felt about that label.

Sue was diagnosed with Hodgkin’s disease 25 years ago. Three years later she had a recurrence. “Stage 4 is usually a death sentence,” she said. “But I fought like mad – chemo, whole body radiation, months in the hospital. I never use ‘survivor.’ I ‘terminated’ my cancer.”

Another friend said, " ‘Survivor’ is much too serious. It was more appropriate years ago when a cancer diagnosis was a death sentence – not now, and not for me."

Susan has been free of cancer for 19 years. “I have no feelings about the word, one way or the other,” she said. “I don’t take things for granted even now and am much more vigilant.”

My sister Peggy is now fighting a recurrence of breast cancer. “I am a cancer ‘activist.’ I am actively fighting to save my life, not passively sitting back and surviving,” she said.

Kay, an 87-year-old friend, was diagnosed with colon cancer two years ago. She said, “I am lucky as hell. I was blessed by cancer. I’m healthy and have been given another chance to do some good. I don’t suppose the phrase ‘cancer-blessed’ will catch on, but I feel blessed.”

Another friend said, “I saw Laura Ingraham on the news. She called herself a ‘cancer conqueror.’ I like it – I’ll use it.”

Kerry wrote, “My dilemma is that I never thought of the term ‘survivor’ in a negative light. Once we were referred to as cancer ‘victims’ – far worse. I always looked on survivor as an improvement. ‘Warrior’? No, in my mind that means the battle is ongoing. How does ‘veteran’ sound to you?”

Veteran sounds right for me.

I was unknowingly a victim for at least three years when my breast cancer went undetected and misdiagnosed, despite regular mammograms and checkups.

I turned into a warrior when I insisted on a biopsy even though my breast surgeon insisted that the suspicious areas on my mammogram were nothing. The biopsy proved the ‘nothing’ to be a 9-centimeter Stage 3 malignancy. I battled with my insurance company in order to receive what was then the most aggressive treatment possible – a mastectomy, chemo, radiation and a bone marrow transplant.

Yes, I did survive both the treatment and the cancer. But I don’t think of myself as a survivor. I think of myself as a veteran in a very foreign war.

[Sign</a> Up](<a href=“That's cancer veteran, conqueror or activist to you”>That's cancer veteran, conqueror or activist to you)

(P.S. to LTS: I’m about to start a 2-3 month federal conspiracy trial, so if my appearances on this thread become a bit less frequent, that will be why.)

marite · February 24, 2008, 8:35am

LTS: Mandatory sleep seems like a great repairing lease. Put on some soothing music and sleep well.

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