This Blog Has Moved...
THIS BLOG HAS MOVED. Please join me at:
http://www.wtflungcancer.com and our Facebook page at:
https://www.facebook.com/WTFLungCancer
Yeah, you get the double-entrendre. Some may find it a bit crude. I find it necessary to get peoples' attention - attention to THE #1 cancer killer in the U.S AND the most under-funded. Why? Well, the stigma of smoking.
My mom, Leslie Lehrman, who is 65 years-old and a life-long non-smoker, has stage IV lung cancer - inoperable, incurable. Yes, that's right, you DO NOT have to smoke to get lung cancer. Many people do NOT know this. And more and more people who have never smoked are being diagnosed and dying of lung cancer.
I will not let my mom die without having told her story and without making a difference.
It's time to take the stigma OUT of lung cancer - smokers or not - and get lung cancer the attention and funding it deserves.
Until then, I will continue to loudly scream, "WTF" for Lung Cancer?"
Wanna scream together? Join my campaign!
Twitter:
www.twitter.com/wtflungcancer
YouTube:
http://www.youtube.com/user/jenniferjwindrum
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Part IV in a series regarding my investigation into the American Cancer Society and interview with the Chief Medical Officer Dr. Otis Brawley
When you’re the biggest cancer organization and have a billion dollars a year in revenue, chest thumping shouldn’t be needed. However, the American Cancer Society is right to be defensive about its handling of lung cancer.
Here’s why:
The American Cancer Society has stood by silently for decades as federal funding for lung cancer research was shortchanged year after year after year.
Its persistent references to lung cancer as the only “preventable” cancer reinforced the stigma and justified the underfunding of lung cancer research. Why spend money on research if smoking cessation will end lung cancer? (ACS CMO Dr. Otis Brawley told me during our two hour phone interview that “Lung cancer is the only cancer I can tell you there is a cause for it.”)
Virtually no mention was made of the tens of thousands of people – men and women – who never smoked who were being diagnosed and dying of lung cancer in increasing numbers.
When lung cancer mortality among women soared past breast cancer mortality in 1987, it blamed the smokers and never mentioned the much higher rate of lung cancer among non-smoking women than non-smoking men. (Again, it’s astounding to me that Dr. Brawley would refer to this as “bad luck.” )
It helped propagate the myth that ten years after smoking cessation lungs go back to normal, leading hundreds of thousands of people – and their primary care doctors – to ignore warning signs that could have led to a CT scan and saved their lives.
ACS’s press office claims that it is currently funding $52 million in 94 grants. But, keep in mind, most of those grants are spread out over four or five years and the $52 million is a total of all funding for the term of the grants, not a snapshot of the current one year funding, which is closer to $12 million, or about 1% of ACS’s income. People think a lot more than that is going to researchers, and a lot more should be.
This is simply not enough when lung cancer is the leading cause of cancer mortality and takes as many lives each year as the next four leading causes (breast, prostate, colon and pancreatic cancers) combined.
For some perspective, in 2009, Lung Cancer Alliance, which operates at a mere fraction of ACS’s budget, was able to secure a new lung cancer research program within the Department of Defense and $48 million in funding over the past three years, with another $10 million pending final approval for this year.
The only way to detect any cancer early enough to prevent death is screening.
In the 70’s, when mammograms began to show potential as a screening tool, ACS leaped in with national pilot screening programs for women around the country. No such enthusiasm has greeted CT screening for lung cancer, even though lung cancer screening can bring about the biggest drop in overall cancer mortality in history.
Over 50% of lung cancer patients are former smokers, and we now have irrefutable proof from the National Lung Screening Trial and other national and international research efforts that tens of thousands of them could be cured – yes, cured – if they are properly screened with CT scans before they have symptoms.
No other cancer screening test carries such enormous potential to reduce deaths and treatment costs – money that could be redirected to more effective cessation programs, more accurate biomarkers and targeted therapies.
Screening can also be the “teachable moment” for the 20-25% of lung cancer patients who have been unable to stop smoking.
There has been little enough compassion coming from ACS for lung cancer patients and their families.
This is not the time for chest thumping and hype. This is the time for an honest re-evaluation.
Another very important FYI: The Lung Cancer Alliance initiated, and has been advocating for, legislation in Congress that will require – for the first time - a comprehensive, coordinated plan of action combining prevention, screening, treatment and research with the specific target of reducing lung cancer mortality by 50% by 2020. This is huge.
A broad, diverse group of national organizations representing women’s health, minorities, veterans and medical centers and public health advocacy organizations have stepped up and publicly backed the proposal.
ACS has not. ‘Nuf said.
Related posts:
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- American Cancer Society Investigation – Social Media Style (16.7)
- Why ALL Cancer Foundations Should Be Concerned. My Interview With American Cancer Society CMO. (14.4)
- Where Do Your Relay for Life Donations Go? American Cancer Society Doesn’t Tell You. (10.7)
- 2nd UPDATE: ACS Responds – American Cancer Society DELETES My Facebook Post. Bad Move. (9.1)
- Letter-to-the-Editor Draft for Lung Cancer Mortality Reduction Act Support (8.4)
http://www.wtflungcancer.com/the-power-of-facebook-groups-punks-sock-monkeys/#
jennifer stauss windrum
jennifer.windrum
Here is a draft Letter-to-the Editor letter, courtesy the Lung Cancer Alliance, you can copy and paste (and customize as you like) that talks about the state of lung cancer and the Lung Cancer Mortality Reduction Act.
Below are tips of how to submit this letter to your local newspaper.
Well, it's been awhile since I have updated my Lung Cancer journey. I just spent overnight in the hospital recently due to a blood clot. This is a scary thing. Just after a dental appointment where there was quite a bit of drilling on the bottom tooth, I started getting neck pain. It was very tender to the touch. I went to see my radiation oncologist Dr. Ashman to see if it could have anything to do with the radiation I had on that side of my neck and he didn't seem to think so and felt nothing in my neck at the time. 
Also went to a fill-in primary care doctor who showed no interest in checking out what I was in there for. I told him my hand was turning blue and then I started getting broken blood vessels starting at my neck following a line down to my arm. Enough of him!! My oncologist sent me to a cardio-vascular doctor who ordered an ultra sound the next day. After the results, he put me in the hospital right away. They started me on Heparin IV. I gave myself shots of Lovenox in my stomach for about 4 days and taking Coumadin. The blood is starting to get to the level where it should be. I think I will be on Coumadin for at least 6 months. On the other hand, I do still have a nodule in my neck that they are not sure about, so this may involve a biopsy. I should be hearing about this at the beginning of next week. If it is active, not sure what the treatment would be. There were different things prescribed. So, I have been full of emotions and that affects you physically as well. It seems every time I get a fairly good report, something else pops up that I have to deal with. My mind never seems to be at peace and peace is what I want so badly. 
I've done pretty good throughout the years. I never said "why me" or things like that, but each time I get something added to the Lung Cancer then I guess I go into a "Pity Party" of my own. Why am I getting all this and so many others are not having any problems? Please don't mistake what I am saying. I don't wish this on anyone and am happy that they have a life, but I guess the envy in me takes over and I can't help but feel all the frustration that I feel. I still endure the chronic pain that started from the botched epidural when I had the wedge resection. I've been to many pain management clinics to no avail. Dealing with this pain nonstop drags you down both mentally and physically. I cannot go back and change the past, but if I knew now what I didn't know then, things would have turned out so differently. I would first of all suggest anyone who has a cancer diagnosis should right away go to a comprehensive cancer center. They work as a team and have all your records together. It takes a lot of stress off your mind. You still have to be your own advocate and If you feel uncomfortable about what a doctor says, then you should question him/her more or get a second opinion. It took me some time to realize this, but through my daughter's insistence about being my own advocate, it started to soak in. I then started with the Mayo Clinic and things were much better.....not perfect, but better. 
Also, when I had my results on January 6th......it sounded like a good report, but they didn't realize that the neck was included and that's when all this other took place. I was so hoping that everything was okay so that I could make a trip back to Nebraska. My 87 year old Mother had to be put into a nursing home and this has upset me so much. Thank you to my sister for doing all that she is doing. Besides wanting to be of help that I was able to do, I wanted to see my Mother. Well, that has been put on hold. I know that some of these issues that show up are most likely due to chemo and radiation. It's such a shame that this poison that is put in our bodies destroy the good cells, but since it is poison, naturally it would. I tend to get on my soap box from time to time and vent about the things that truly upset me. That happens to be the injustice that the Lung Cancer community has dealt with for so long. They attached the stigma of smoking so that it is the least funded cancer although it is the number one cancer killer of all the major cancers combined. Who cares if you smoked, no one deserves to dies. If you have lungs, you can get Lung Cancer. It is not just related to smoking. There are many other reasons and is affecting our military so much as well. Right now more than 60% of newly diagnosed patients have never smoked or quit decades ago. Young children, young adults and especially women who have never smoked are getting this. It has turned into an epidemic. So, doesn't that make sense that the number one cancer killer deserves more attention??? The Lung Cancer Mortality Reduction Act has to be passed and more federal funding be given where it is due....Lung Cancer. It should be at the top of the priority list. [caption id="attachment_1964" align="alignleft" width="427" caption="Headed to Mom's high school classmate's funeral. She died of lung cancer. "]
[/caption] My daughter has been a great advocate and started the "WTF? (Where's the Funding for Lung Cancer?") campaign. This could be offensive to some, but it gets attention and she had done very well. She was invited by the Lung Cancer Alliance to go to Washington DC for its Capitol Forum, where advocates from across the country gather on the Hill to tell Congress that lung cancer must be a national public health priority. As far as I'm concerned, this is a no brainer and the right thing should be done. I get so sad when I read on one of the Lung Cancer support groups I'm with when people are desperately looking for something that will help them or their loved one. There are numerous reports, etc. out there giving hope only to say that it will takes years for human trials...or maybe you never hear of it again. It's like dangling candy on a string in front of you and then yanking it away. I have to admit that there are days in my life when I feel like my time is near. Through most of the almost 6 years, I have tried not to dwell on things like that. I guess I'm very sad and angered that our country can turn into such power and greed and not the well being of it's citizens. Even though it's nearly impossible to fight against power such as these groups have, we will never quit fighting for our cause.....Lung Cancer!! Leslie Lehrman
I have fantastic news to share. Thanks to all of YOU, the lung cancer community will have a direct voice on SU2C's website later this month, as SU2C has asked if I will be a guest blogger this month. Of course, I said, "Of course!"
The post theme will center around the importance of advocating lung cancer awareness (not just in November, or "Lobember," but year round), my personal connection to lung cancer and why being aware of the nation's #1 cancer killer (and least funded) is so critical.
Total. 180.
As you may know, my last few blog posts about SU2C haven't been very positive, to say the least, and WTF? and many in the lung cancer community have been at odds with SU2C for several months.
First issue - My video questioning SU2C's funding model and if/how much funding was directly funneled to lung cancer research.
Second issue - Removing (successfully) the "Smokin'" T-shirts from SU2C's online store. Huge thanks to Tracy Sestilli of the Beverly Fund who started the initiative and set up a Facebook Group where several of us centralized, hitting Twitter and Facebook big time with messages to SU2C about how the T-shirts did nothing but perpetuate the smoking stigma.
The T-shirts were already sold out, but due to the social media swarm and additional offline correspondence, SU2C agreed not order additional T-shirts!
Third issue - The SU2C Telecast lung cancer bit.
http://www.youtube.com/v/SaIaBPCpg8M?fs=1&hl=en_US","allowfullscreen":"true"" src="http://www.wtflungcancer.com/wp-includes/js/tinymce/plugins/media/img/trans.gif" height="340" width="560" style="border-top-width: 1px; border-right-width: 1px; border-bottom-width: 1px; border-left-width: 1px; border-color: initial; border-top-style: dotted; border-right-style: dotted; border-bottom-style: dotted; border-left-style: dotted; border-top-color: rgb(204, 0, 0); border-right-color: rgb(204, 0, 0); border-bottom-color: rgb(204, 0, 0); border-left-color: rgb(204, 0, 0); background-color: rgb(255, 255, 204); background-image: ; background-position: 50% 50%;" />
The skit that actors Eric Stonestreet & Jim Parsons performed during the SU2C Telecast did not go over well with many in the lung cancer community, including my mom. So, my mom, Leslie Lehrman, sent an email to SU2C to express her disappointment.
I wrote a blog post about it: My Mom’s Lung Cancer Rant and SU2C’s Response.
I encouraged others to send their thoughts to SU2C as well. They did...and, well, everyone received the same "canned" response that added further fuel to the fire.
I wrote another blog post: SU2C’s APOLOGY to My Mom & the Lung Cancer Community.
Advocates then took to the social media sphere again, saying the apology was insensitive and that they find "no humor" in lung cancer whatsoever.
Nearly two weeks later, Tom Chiodo, Senior VP of the Entertainment Industry Foundation - Stand Up 2 Cancer| iParticipate, posted a personal apology in the comments section of the blog post. Here's a portion of his response:
"I want to apologize that we offended you and other viewers with the telecast’s lung cancer segment and then with our reply to some of the emails we received. I want to reach out individually to everyone that wrote to us.We take all the feedback we’ve received to heart, and going forward, it will help inform our decision-making process about the content we produce." - Tom Chiodo
Chiodo also said that SU2C would soon be reaching out to lung cancer advocacy groups to determine the best way the su2c.org website could heighten awareness during November -Lung Cancer Awareness Month.
Tom Chiodo, Lauren Clemmons, Digital Coordinator for Stand Up 2 Cancer | Laura Ziskin Productions, and I have been corresponding via email for several weeks to see how we can work together to better communicate the importance of lung cancer awareness and advocacy.
http://www.youtube.com/v/nejJRuvdsog?fs=1&hl=en_US&hd=1","allowfullscreen":"true"" src="http://www.wtflungcancer.com/wp-includes/js/tinymce/plugins/media/img/trans.gif" height="340" width="560" style="border-top-width: 1px; border-right-width: 1px; border-bottom-width: 1px; border-left-width: 1px; border-color: initial; border-top-style: dotted; border-right-style: dotted; border-bottom-style: dotted; border-left-style: dotted; border-top-color: rgb(204, 0, 0); border-right-color: rgb(204, 0, 0); border-bottom-color: rgb(204, 0, 0); border-left-color: rgb(204, 0, 0); background-color: rgb(255, 255, 204); background-image: ; background-position: 50% 50%;" />
So, next week, I will be typing away. This opportunity wouldn't even be on the table if it weren't for the amazing voices and determination of the lung cancer community. We have learned to never settle for status quo. We can't. We won't.
I also thank Tom Chiodo and Lauren Clemmons for their willingness to hear us out, following through on their advocacy outreach and providing a tremendous platform for us to collaboratively help educate the masses about today's lung cancer - a disease that ANYONE can get.
I would LOVE your thoughts on all of this, as well as your insights as I prepare to write the blog post! Way. To. Go!!
jennifer stauss windrum
jennifer.windrum
