Why ALL Cancer Foundations Should Be Concerned. My Interview With American Cancer Society CMO.

It is not in my blood to just hope and pray that organizations/foundations that purport to be working toward advancements in cancer research, prevention, treatment and education are, indeed, doing their jobs. Neither can, or should, you!

When one starts asking questions, basic questions, and can’t get answers, something is wrong or at least something needs to be clarified. Bottom line: We need accountability…tangible accountability when it comes to where our cancer donation dollars are going, how they are spent and the results(s).

How are these orgs/foundations holding themselves accountable? Or are they? These should be easy answers for any nonprofit organization to provide, right? In theory, yes. In reality, a big hell no. I’m talking about the American Cancer Society.

On April 22, 2011, I had a two hour interview with Dr. Otis Brawley, CMO of the American Cancer Society. I had many questions before that interview, but I have many more questions and concerns now. It’s not only what Dr. Brawley told me, but the callous tone in which he ranted about certain nonprofits that is more than disturbing.

As you’ll see in the video, Dr. Brawley minces no words. To hear him say, “Lung cancer groups don’t argue for general cancer funding. The Lung Cancer Alliance (LCA) just says screw breast cancer, we just want money for lung cancer,” is more than appalling.

I will be getting a response from LCA regarding this statement and others Dr. Brawley made about the organization. (Disclaimer: All funds raised through my WTF? campaign go to the Lung Cancer Alliance).

Brawley says some prostate cancer foundations are following in lung cancer advocacy’s footsteps by, “Getting more into the politics instead of the scientific principles,” therefore harming their own research efforts. Ok, that could very well be a valid point, but is it really that cut and dried? Believe me, it’s not. There is so much political jockeying, intentional sabotage and ill will between the ACS and some cancer foundations I can’t begin to describe. Sadly, I don’t even know the full extent of it yet. I’m still learning.

Dr. Otis Brawley - CMO American Cancer Society

But, the kicker…Dr. Brawley says “He doesn’t know why 15% of the lung cancer population is getting actually lung cancer,” but chalked it up to “bad luck.” Yep, bad luck. Seriously, if Dr. Brawley is so brazen to talk in this manner during an interview, what is happening behind closed doors? Every cancer foundation should be concerned, not just the lung cancer community.

I do want to note I was so shocked by Dr. Brawley’s “bad luck” comments that later in the interview I felt compelled to see if he simply used very poor words or if he was referring to “genetics” as “bad luck.” Thank God I asked for clarification. I felt a teensy bit better. Teensy…and for a nano-second.

Either way, Dr. Brawley says lung cancer is adequately funded and it all comes down to “net lives saved.” Yes, we have to remember cancer is a business…and a very dirty one at that, but we are going to wade through it as best we can.

So, here’s what I am doing. In upcoming posts, I am making public all of my questions to the American Cancer Society, as well as its responses. I am still waiting for some responses to follow-up questions I sent to Dr. Brawley and David Sampson, ACS’s Director, Medical & Scientific Communications, following our interview.

I need YOU to become integral part of the accountability process. It will take ALL of us…and then some, believe me.

ps…If you participate in Relay for Life, my next blog post will be of specific interest to you.

  • Diane

    cancer Mafia…and no one wants to believe it. *sigh* ♥

    • Mbosserman

      I would like to see an official breakdown of dollars donated, and just how much money goes to each cancer.  Is this public information?  I have seen a document on it before but, I cannot say if it was directly from the ACS.  However, what I did read was very very disappointing.

      • http://www.wtflungcancer.com/ Jennifer Windrum

        Hey there.  Yes, I will soon be posting what data ACS has provided to me, along with the lung cancer specific grants.  Thanks a bunch. 

        • Mike

          Anyone can Google ACE 990 form. It is there IRS form and a public document. It is very interesting to read. Especially what the top executives make and how much they spend on advertising.

        • Mike

          Anyone can see what ACS spends by looking at their 990 tax form. It is a public document. Just google ACS 990. It was interesting to see a few years ago that the top executives were making over 5 million dollars. It is also interesting to see how much they spend on advertising and fundraising.

  • 123

    As an educated ACS volunteer I am disheartened by this. I am disheartened that you are blasting an organization that can show you where every dollar goes. An organization that does not discriminate against specific cancers. An organization that funds research for all cancers and provides essential services to cancer patients. I have seen ACS at work first hand. Doubt their impact? Visit a Hope Lodge, Mary’s Wig Room, or sit with a patient in Road to Recovery. Yes, ACS does not actively support the mission of other non-profits that focus efforts on specific cancers. That is because ACS funds the best possible research, no matter the cancer. They are highly selective in their funding to ensure that the patient, not the cause, remains the priority. I know the best way to raise funds is to be flashy.  Phrases like ‘WTF’ and ‘Save Second Base’ are flashy and peak interest.  Personally I use flashy breast cancer slogans to raise funds at my Relay For Life.  Yet with 4 survivors on my team, not one of them has breast cancer.  Am I doing them a disservice? No, I’m using flashy to raise money to fund research on ALL cancers, to provide support for ALL cancer patients, and to educate the public about prevention and early detection of ALL types of cancer.  I’m glad you are raising funds and awareness, I do hope we find a cure for lung cancer in our lifetime.  I lost my father-in-law to lung cancer.  But blasting the one organization that is working so hard to fund top-notch research indiscriminately is not the way to go about it.  Did you know that of the researchers chosen for ACS funding, 44 have gone on to win the Nobel Prize, the highest honor in scientific achievement! Try a little integrity in your reporting and a little less drama.

    • http://www.wtflungcancer.com/ Jennifer Windrum

      I appreciate your comment and the fact that ACS has been helpful to you.  I don’t doubt it has been helpful to others as well….and it should be. I’m sorry to disappoint, but ACS is less than “equal” in its cancer research. Unfortunately, it’s not apparent to volunteers. You need to dig down deep into the politics of it all. It’s not fun, believe me. And, as for integrity, or lack of it, unfortunately, ACS needs to look at its very own CMO. A little less drama? Nope, not going to get it. My Mom is dying of Stage IV lung cancer – ACS won’t even approve early detection screenings for lung cancer. Give me a break.  

      • http://twitter.com/brianreid Brian Reid

        The thing that *most* impresses me about the ACS is that they try to be very serious about the science. They aren’t knee-jerk about screening (for *any* cancer), and they are very public about their rationales for their positions and the scientific research that backs up where they come from. That doesn’t mean that you can’t have a reasonable debate about the harms of false positives or other specific aspects, but it’s hard to say that they treat the science with anything less than integrity. I’m sure they welcome the scientific dialogue.

        As for focusing on “net lives saved”: shouldn’t that be exactly the mission of ACS?

        • http://www.wtflungcancer.com/ Jennifer Windrum

          Hi Brian. Good to hear from you. Yes, as far as I know, they are serious about the science, at least their investigators are, but ACS  is also HIGHLY political. The screening study has proven the # of lives saved, yet they still will not approve it. I understand the great issue with false positives, etc., but that is not an issue with this study any longer. But, the bottom line is: NOTHING has changed in terms of lung cancer for more than 40 years. Why does the #1 cancer killer and LEAST funded not even have early detection screening – the only major cancer without it? Because it continues to be ignored. Period. This debate should be over…and should have been decades ago. And, in terms of “welcoming” the scientific dialogue, negative. There is such hatred between ACS and some lung cancer foundations. It’s very, very sad. They are less than welcoming. It’s competition, unfortunately. 

          • http://twitter.com/brianreid Brian Reid

            Full disclosure: I’ve met Otis and like him, and I have also seen him speak “truth to power,” which I assume gets him in hot water with all sorts of people, and not only outside his organization. But he has also earned the respect of critics, perhaps most notably Gary Schwitzer of Health News Review (and another wholesome Midwesterner!), who is a sort of watchman for exaggerated health care claims.

            The screening question is tricky, because some groups do see a benefit (though not without risks), but the issue is pretty straightforward in never-smokers, right? I am unaware of any data to show that it saves lives in that group, and the radiation  involved in those scans carries real risks. I can see why Otis would react pretty strongly to a suggestion that there should be some kind of population level screening standard.

          • http://twitter.com/brianreid Brian Reid

            Full disclosure: I’ve met Otis and like him, and I have also seen him speak “truth to power,” which I assume gets him in hot water with all sorts of people, and not only outside his organization. But he has also earned the respect of critics, perhaps most notably Gary Schwitzer of Health News Review (and another wholesome Midwesterner!), who is a sort of watchman for exaggerated health care claims.

            The screening question is tricky, because some groups do see a benefit (though not without risks), but the issue is pretty straightforward in never-smokers, right? I am unaware of any data to show that it saves lives in that group, and the radiation  involved in those scans carries real risks. I can see why Otis would react pretty strongly to a suggestion that there should be some kind of population level screening standard.

            • http://www.wtflungcancer.com/ Jennifer Windrum

              Hey Brian….the study involved current and former smokers between 55 & 74 years old…and, actually, the NCI just released more data a few minutes ago. Very timely. :)  Perhaps DR. Brawley is a great man and is well-respected in certain circles. That’s great. Unfortunately, it’s not the picture he painted as we chatted. I asked very benign questions, but he became “worked up” to my complete surprise. Believe me, I was shocked. Maybe this is his normal behavior. I don’t know, but it was very unbecoming for a man in the position he is in and makes me further question what really goes on at ACS. When someone tells me lung cancer is adequately funded (and receives far less than other cancers from ACS)…and that someone is the CMO, I have much to be angry about.  If ACS really wants to do something about eradicating cancer in general, they cannot continue to ignore the #1 cancer killer, which accounts for 30% of all cancer deaths. Nothing has changed in 40+ years. It’s not rocket science at all. It’s called money! 

          • Guest

            Hi Jennifer Great discussion.  I am a little confused in your statement
            that nothing has changed in terms of lung cancer in more than 40 years. 
            The survival rates for lung cancer have improved over the last 30
            years.  The death rate from lung cancer is declining in both men and
            women.  Tarceva and Avastin are being used to treat lung cancer.  There
            are other targeted therapies in clinical trials. Researchers are even
            studying vaccines. Being a reporter, I doubt this is news to you.

             You said the screening study has proven to save lives and I agree it
            does, up to a point.  You also mentioned that the participants were
            current or former smokers.  In other words, they were at high risk for
            getting lung cancer. If a good scientific study demonstrated CT scans
            saved lives in people at average risk, the ACS’s current position might
            be different. Their position recently did change for breast cancer
            screening based on good science.  The other questions I have is should
            the American Cancer Society be equal in its research funding?  Should
            lung cancer orgs equally fund small cell lung cancer or the more common
            type Non Small Cell Lung Cancer?  Shouldn’t it put funding to where it
            should do the most good for the most people since the organization is
            focused on cancer?  And I do think you did take bias into the interview
            just as you have a bias on your blog (and bias on a blog isn’t
            necessarily a good thing).  You also dismissed a volunteer without
            providng any facts about the politics of research simply because they
            said they are a volunteer.  You also attacked the integrity of an entire
            organization based on an your interpretation of the “callous tone” and
            “ranting” of the person you interviewed.  Did you happen to record the
            interview?  How can you prove that he ranted or was callous? What benign
            questions did he get “all worked up about.” I am sorry that your mom or
            anyone’s family member for that matter has been dx with cancer.

            • Guest

              correction, I meant to say bias on a blog isn’t necessarily a bad thing.

    • http://twitter.com/tracysestili Tracy Sestili

      I wasn’t going to chime in here, but clearly there are a LOT of misinformed people who read this blog. Let me state the facts and a disclaimer that I used to be a volunteer for the ACS as well on their Leadership Council in my local home town, and I run my own LC nonprofit (not affiliated with LCA or WTF?) ….here we go….
      ACS does give $ to lung cancer research. However, the amount they give to breast, prostate and colon cancer far out weigh the $ they give to lung cancer research which is the #1 cancer killer (for 26 yrs). They do give money to tobacco cessation, in fact, when it comes to lung cancer that’s where most of their money is spent. And because of this they also are the #1 reason and cause for the stigma associated with lung cancer. And the stigma prohibits funding. No one wants to give to a disease that they think you chose to give yourself. If ACS is so transparent, then why don’t they give = $ to all cancers. Why choose one over the other? Let me tell you why. Because if they gave less $ to breast cancer, those families wouldn’t donate and ACS’ bank account would suffer. They’ve been carrying the breast cancer flag for way too long. Time to switch flags.When Dr. Brawley calls out that LCA says “screw breast cancer” – it’s offensive for two reasons. 1) That’s just his opinion b/c ACS and LCA don’t get along on the Hill. A well-known fact. 2)  LCA is acting as a voice box for the LC community by simply asking for a shift in where $ are appropriated. For years the Department of Defense has given to breast cancer. When was the last time you saw a woman on the front line? How about switching the $ amounts for a while, give lung cancer research what you give breast cancer research for 10 years and vice versa and I guarantee you that you will see an uptick in the 5 year survival % for lung cancer. 

      It’s not that the ACS doesn’t do good things, its that they are not transparent and their BRAND is the face of cancer and therefore they should be more transparent and more equal. When people participate in Relay For Life they think that their $ are going to their particular cancer or all cancers, when in fact that is NOT TRUE FOR LUNG CANCER. 

      • http://www.wtflungcancer.com/ Jennifer Windrum

        Amen Tracy. Amen.  I will be posting dollars spent on LC by ACS, as well as its lung cancer specific grants very soon. Thanks so much for your insight and advocacy.

      • Guest

        Now THIS makes sense. Thanks for making clear what Jennifer MAY have been trying to say.

    • CINDYLYNN67

      I want to point out some of the more nauseating facts about this billion dollar organization that should make everyone’s blood boil – especially those whom have somehow been touched by this insidious disease called cancer. The American Cancer Society in a nutshell:
      For every $1 spent on direct service, $6.40 is spent on compensation and overheadOnly 16% or less of all money raised is spent on direct services to cancer victimsBased on 2008 financial documents, the CEO, Donald Thomas, earned through compensation and benefits, $1,054,507ACS’ Deputy Chief Executive Officer also earned $1,457,507 through compensation and benefits
      - The excessive salaries at the expense of cancer victims at the American Cancer Society do not stop there. Other wonderful salary expenditures include: $710,927 for the CEO of the South Atlantic Division of ACS; $573,589 for the CEO of the California Division of ACS; $561,140 for the CEO of the Great West Division of ACS; $535,494 for the CEO of the High Plains Division of ACS; $511,107 for the Deputy Chief Operating Officer of ACS; $456,691 for the Chief Operating Officer for the Mid South Division of ACS; $334,472 for the Interim Chief Mission Officer of ACS; $304,293 for the Chief Financial Officer of ACS; $565,397 for the Chief Operating Officer of ACS; $552,213 for the CEO of the Great West Division; $522,090 for the CEO of the South Atlantic Division of ACS; $425,151 for the National Vice President of Division Services of ACS; $381,588 for another National Vice President of Division Services of ACS; $365,295 for the President of the American Cancer Society Foundation and $333,157 for the National Vice President of Research for ACS
      - The above list barely scratches the surface of a clear mission to pad the pockets of this organization’s management and other “friends” rather than treatment and prevention of cancer. In fact, a more detailed analysis of how the American Cancer Society spends the revenue it gets from hard working citizens of our state and country is as follows:
      • ACS spends over 400 MILLION DOLLARS ON SALARIES per year• ACS spends over 88 MILLION DOLLARS ON EMPLOYEE BENEFITS per year• ACS spends over 60 MILLION DOLLARS ON PROFESSIONAL FEES per year• ACS spends over 17 MILLION DOLLARS ON TELEPHONE CALLS per year• ACS spends over 45 MILLION DOLLARS ON RENTING OFFICE SPACE per year• ACS spends over 19 MILLION DOLLARS ON MEETINGS AND CONFERENCES per year• ACS spends over 29 MILLION DOLLARS ON TRAVEL EXPENSES per year• ACS spends over 14 MILLION DOLLARS ON “MISCELLANEOUS” EXPENSES per year, whatever that means… Instead of spending the money on people in need, ACS at the present time has over ONE BILLION DOLLARS in net assets including cash in the bank and land holdings. ACS with all its revenue and holdings is one of the most successful businesses in the country, while the hospitals that provide direct care to patients are closing their doors and fighting to stay open to serve the community..The American Cancer Society is a complete failure in the fight against cancer and it serves as a place for many to become rich at the patients’ expense.There are many other places to donate money and many other ways to get the dollars in the hands of people who are on the front lines in developing cures, treatments and prevention of cancer. As Dr. Samuel Epstein, former Chair of the Congressional Committee on Cancer, has stated, “ACS is more concerned with accumulating wealth than saving lives.”

      • http://www.wtflungcancer.com/ Jennifer Windrum

        Thanks Cindy. I do have a response from ACS regarding Dr. Epstein and will be sharing it very soon.  Thanks so much. 

  • Guest

    What am I missing here? You said his quote was that LCA says “screw breast cancer.” NOT that HE believes that. If you are well prepared to speak to us about this then get clear about what your point is because I sure can’t figure it out.

    • http://www.wtflungcancer.com/ Jennifer Windrum

      Are you really OK with the CMO of the speaking like this? The “screw breast cancer” comment was Dr. Brawley giving his very own view on lung cancer foundations and the LCA. These are his words, no one else’s. I am more than prepared to speak to you, whoever you are, about this further. Thanks for your comment. Jen 

      • Guest

        Please listen again to YOUR quote of what he said. You CLEARLY state that he is saying that LCA and other lung cancer organizations are saying “screw breast cancer.” There is NOTHING in your video that indicates that that he believes “screw breast cancer.” While I do not know whether his opinion has any factual validity, I do think he’s making a strong point about cancer organizations not working together to find cures for all cancers and I do not find that opinion offensive. IF it is true that lung cancer organizations ONLY care about a cure for lung cancer, and not other cancers then his opinion has basis in fact. If not, then his statement may alienate other organizations such as yours, but I’m having a tough time understanding why you’re so upset about this.

        • http://www.wtflungcancer.com/ Jennifer Windrum

          It’s very true that many cancer orgs do not work together. Very true and very sad…and ACS is one of those organizations. Unfortunately, the largest cancer org out there that could possibly be of help in wiping away cancer as a whole.  I’m sorry you can’t see the complete lack of professionalism in Dr. Brawley’s comments. They are a disgrace….and sadly reflect how ACS feels about lung cancer and its myopic and paultry strategy to eradicate it.  

  • http://twitter.com/jodyms Jody Schoger

    To this day, when  I want a straight read on cancer studies and information I will pull an ACS report.  They are clear, concise, and well written.  Most science/health reporters that I follow start there as well.   There are few organizations I trust to deal more evenly with data than the American Cancer Society.  Others are NCI Bulletin, Livestrong, and Cure_Magazine. 

    I have learned a lot from both Dr. Brawley and David Sampson.  Why?  Because I’ve engaged in conversations and gone to school on the science.  I still do.   It always goes back to the science, and the language of science.  Talking to doctors – who are deeply engaged in their work, as oncologists are — is different.  Preparation involves more than asking questions.  It involves an understanding of how they think and talk.  Preparation involves a willingness to listen.  If you have an agenda  you will not be able to hear them.  Talking science and talking bedside manner are two completely different things.   
     
    What I’ve enjoyed with my conversations (two) with Dr. Brawley is that he is straight forward, honest, and tells it like it is. I far prefer that to a doctor that toes the political line to the point they say in effect – nothing.  What I hear from Dr. Brawley in this is that the science does not support screening for lung cancer.  That is the truth.  And he is not going to say otherwise.  

    Was my breast cancer bad luck?  It might have been.  My husbands three-melanomas?  He carries no genetic markers, is a superb athlete, doesn’t drink or smoke.   Yes, that probably was bad luck too.  What about the inflammatory breast cancer of two lovely young friends of mine?  Yes, that was hideous, disgustingly bad luck.  If I were talking to Dr. Brawley about that I wouldn’t expect him to comfort me on those losses, or feel badly for me.   I would want to ask why the etiology of the disease is so difficult to grasp.  Callous is absolutely the last word I’d use to describe him.  Dedicated, occasionally terse, and succinct, absolutely.  But I’ll tell you something else:  if I were (heaven forbid) diagnosed again with cancer he’d be at the top of my list to call.  And my sense if that he would respond as a compassionate physician. 

    I admired your energy and passion  in putting lung cancer on a bigger platform.  The time is right.  We need that.  But I’m also a proponent for advocacy based on facts.  Separating emotion in reporting is the the first place to start.  If you’re going to speak as a journalist you have to be prepared to listen and report as one.

    jms

    • http://www.wtflungcancer.com/ Jennifer Windrum

      Jody…you know I love and respect you.  I want to make it clear that I did not have an agenda when I interviewed him. I honestly wanted to understand. And, I don’t think he would have spent 2 hours on the phone with me if he didn’t think I was trying to understand and listening.  I learned a lot, which I will be sharing with the WTF community regarding research and the language of science in upcoming posts. We aren’t as familiar any of this as we should be. However, the lack of science and $$$ being devoted to lung cancer , along with Dr. Brawley’s callous, yes, callous remarks….it is more than sad and completely defeating feeling. When you’r e#1 in the cancer world (in not a good way) and legitimately try to understand how an organization works, but are suddenly diverted due to a tremendous shift in behavior and tone from the ACS CMO…..as a reporter, THAT is what will get reported first. I wouldn’t be doing my job if I didn’t. He created that story himself. I didn’t even ask about lung cancer foundations, etc. I was asking how the “one pot” system works because I wanted to understand, so I could better help others understand. I’m a straight-shooter myself, as you know, so I appreciate fellow straight-shooters….but not in this capacity whatsoever. It is unprofessional to say the least.  Thanks for sharing your thoughts. I truly appreciate it. 

  • Tami

    Hi my name is Tami and I just got to say  I love the info you share concerning Lung Cancer. My mom is in stage 4 of lung cancer I know I will not have her with us for long and even shorter if I can not find funding so we can get her the natural treatment she needs so badly. This saddens me that I have tried looking for funding for her early on so she can get the Natural treatment she needed so bad because she could not do Chemo because it almost killed her at just 3 treatments. I am financial hurting beyond belief to the point of going to be living on the streets because of giving everything I had to my mother just so she could have a place to stay and food to eat during her treatments at the beginning she was forced to have to get treatment 2.5 hrs away from her home. I am still not giving up to raise money for her and the family. She needs natural treatment and she needs it NOW… But the cost is so crazy … People are so naive when it comes to lung cancer.. even if you smoked for years and you are up in age do you not realize that people 30 years ago believed in the advertisement that the tobacco companies were putting out there back then you could not advertise a lie on TV it was a big NO NO so they lead the public to believe 30 yrs ago is nothing like today.. My mother was addicted to smoking over 30 yrs ago and has been smoke free for 6 years but just diagnosed this year with lung cancer and had to of had it at least 8 months prior. She did not have it before that because she went through a complete check up since she had a quadruple bi-pass heart surgery 6 yrs ago. But my point I was making is there were no warnings on any packaging, they were saying it was safe, they were no different as we are today when advertisements tell us it is safe most of us believe it is safe or why would they say it is right.. The Tobacco companies do they donate to Lung Cancer research? I believe that the Tobacco companies should pay for all treatment to those who were affected by their product before they started putting a warning on the product and changed their advertisements. Because it was too late for most … If you know anything about smoking you would know how addicting it is. Everyone needs to stop smoking but this is crazy and easy to say for us who don’t smoke because as an ex-smoker my self I understand the difficulty it is to stop smoking .. Stop smoking groups just like AA need to be developed because it is an addiction and the longer you used the harder the quite. I am needing funds to help my mother and save us as a family from ended up on the streets as well because of this horrible disease and lack of funding out there. And as for ACS article you have written, I just have to say… well we got a little help from them but we got turned down more then we got help …LUNG CANCER patients are not treated the same at all… My aunt also had breast cancer, I have friends who have had breast cancer and they are treated much nicer and funds thrown at them and their families to help offset the cost of cancer treatments. Thank you again for keeping me updated on the Lung Cancer fight for equal treatment and awareness…

    • http://www.wtflungcancer.com/ Jennifer Windrum

      Hi Tami. Thanks for your message. It is, indeed, a huge mess out there for lung cancer patients. I am very sorry to hear about your mom, too. Have you tried contacting the Lung Cancer Alliance to check into possible funding options? I think they could possibly be of help to you or be able to steer you in the right direction.  Keep fighting and give you mom a humongous hug from me….and give yourself one too. <3

  • http://pharmastrategyblog.com maverickny

    Given that we don’t know how most cancers are caused, whether they be lung cancers in non-smokers or the childhood cancer I was unfortunately diagnosed with, bad luck is not an unreasonable way to describe it.  Personally, I don’t see what is unprofessional about that at all.  It’s a truthful answer given that we don’t know.  One of the meanest things I have heard people say is, “you must have done something to cause your cancer” when nothing could be further from the truth.  Why was I diagnosed aged 12 and not my brother, we will never know, but I have often put it down to bad luck that it afflicted me.  Thank goodness I’m still here to tell the tale though!

    Sadly, there is very little evidence in favour of broad population screening for any cancer that I know of.  It is certainly isn’t ‘proven’ in the general sense that it helps, although many might like to feel more reassured by doing so from a piece of mind perspective.  Where there is value and utility is in screening and testing for known mutations in patients already diagnosed with some cancers, in order to determine appropriate treatment or eligibility for clinical trials, for example.

    I should add that I have actually met Dr Otis several times, and while occasionally gruff or brusque, I have never considered him unprofessional, quite the opposite in fact.

    • http://www.wtflungcancer.com/ Jennifer Windrum

      Hi there and thanks so much for your input. And, I too, am very happy you are here!!! We don’t know for certain why certain people get cancer, but we are learning more. Wouldn’t it be great…or “even” if lung cancer had the same amount of $$$ devoted to learning about these mutations?  We are making some progress. I’m not saying the money has to be given to lung cancer research or denoted as such specifically, as I know the benefit of general cancer research, but there has to be a shift of focus somewhere. How do we get more investigators interested in wanting to do LC research? 
      Did my mom or 22 year-old Jill Costello simply have bad luck? When we are learning a bit more about why smokers and now non-smokers are getting lung cancer….and have a serious need to do so, it is NOT just bad alone. ACS only wants to focus on smoking cessation and lung cancer has moved beyond smoking. ACS doesn’t see the need to research this. Simply wrong. Thanks again and I wish you continued good health.   

      • http://pharmastrategyblog.com maverickny

        The best way to answer why don’t we know how people get cancer is, “It’s complicated!” ;)

        Still, there is some excellent news this morning – the National Lung Cancer Screening trial data is in at last and has just been published in the NEJM: http://www.nejm.org/doi/full/10.1056/NEJMoa1102873?query=featured_home&#t=abstract

        At least we can hope for earlier detection and diagnosis going forward, while being mindful of the number of false positives too.

        • http://www.wtflungcancer.com/ Jennifer Windrum

          Absolutely….it definitely is “complicated.”  And, yes…..wonderful news about the CT scans. Let’s keep it coming!  Hugs to you. 

  • Karen Munro

    Unless you or someone you love have lung cancer you will never truely understand how very different lung cancer is. I was competing at the world masters track cycling championships in October 2009 and in Feb 2010 was diagnosed with stage IV lung cancer. I was the fittest I had ever been, no breathing issues at all, in fact if I looked at a LC checklist I wouldn’t of ticked any of the boxes! I found out I had LC because I had a sore hip, my sore hip was considered to be a sports injury by many specialists and I insisted on an MRI as I also thought it was sports related and I wanted it fixed so I could win more races lol. That’s when I found out that I had cancer. The thing with this is I wasn’t considered at risk, never been a smoker, fit and healthy and I found out that I had cancer by pushing for further testing. There is no way that I could of discoved this earlier, unless I had a fall and they x-rayed?

    For me the stigma attached to LC is our main problem with getting funding. And I blame the cancer council for this. I live in Australia but I can assure you that it’s exactly the same here as it is in America. I have gone head to head with the cancer council about the quit campaigns on several occassions and it’s like beating your head against the wall. They use LC to get people to quit at the expense of LC patients and this needs to change. Basically the general public are led to believe that LC is caused by smoking so if you don’t smoke then you are fine and if you do smoke then you caused your own cancer. People that don’t smoke don’t look for signs of lung cancer and end up being diagnosed when it’s too late all because we are led to believe that we are not at risk. I just wish they would tell the whole story and not just the bits that suit their cause.

    The whole sytem is corrupt as far as I am concerned. I’m not convinced we will ever find a cure for cancer, why would they distroy a multi billion dollar buisness? And do they really want people to stop smoking? I mean if smoking is so bad for you then why don’t they make them illegal? Well the government make billions out of smokers that’s why! So when the say they are trying to stop people smoking with their quit campaigns I just see that as a token gesture to look like they are trying to do something.

    For me education is the answer. While the general public have their heads in the sand about LC we will never get their support and without their support we will never get the funding that we need and deserve. We could ask the goverment for more money but why would they give it to LC when LC is a self inflicted cancer that nobody cares about????  Let’s face it breast cancer will win then an election where as LC would lose them the election….Sad but true.

    • http://www.wtflungcancer.com/ Jennifer Windrum

      Bingo, Karen. Couldn’t have said it better. If we are ALL keeping it real….THIS is it.  How are you doing?  Undergoing any treatments currently?  Major hugs to you. 

      • Karen Munro

        I am doing great! When I was diagnosed my hip was very sore, to the point that I couldn’t stand on one leg and could hardly walk. But I have an amazing oncologist who tested me to see if I was EGFR+ which I was so I went on Iressa as a first line of treatment. Iressa isn’t approved as a first line of treatment but my oncologist got me on it through the special access scheme.

        My first scan after starting Iressa showed that I had over 50% shrinkage in my lung tumor, they couldn’t tell from the CT scan what was going on with my bones because where the cancer is or was there is just a big black hole so they can only see if it has got bigger. But I knew after 3 days that the Iressa was working as my pain was better and it continued to get better and now I would consider it to be almost normal. It get’s a bit achy in the colder weather or if I do to much but otherwise it’s pretty good. The second scan also showed a bit more improvement. The third scan showed that the tumor in my lung had started growing again, it was 1mm bigger. This trend continued for the next few scans and we discussed switching to chemo. By the time I started chemo my tumor was almost back to it’s original size. I have 1 tumor in my top right of my lung which was originally 4.8cm, 2 in my pelvis and one in my spine. The one that gives me the grief in my pelvis is 4cm and the other one was large as well not sure exactly how big but that’s never given me any trouble. The one in my spine is only small and hasn’t given me any pain either.

        So it was decided that I would have 4 rounds of carboplatin / alimta first scan showed that the lung tumor had shrunk again this time by 25% and the second scan showed that it had shrunk a small amount again. I now have alimta for maintenance.

        My oncologist has mentioned a couple of times that we MIGHT consider operating. This is definitily not normal and the reason they would even think about it is that I am young and very healthy, but mainly because since diagnoses 16 months ago there are no new tumors and my mets are all stable and I only have one tumor on my lung which seems to have some resistant cells. Something to consider but I wont rush into anything.

        I have also been having zometa for my bones which I researched early on and asked my oncologist about. He said it wasn’t something they normally give but the following month when I went to see him he said that he looked into it and had got it for me again on the special access scheme.

        Since I was diagnosed I have been doing lot’s of thing’s to raise awareness and money. I have raised over $30,000 for the Australian Lung Foundation so far. I rode from Adelaide to Melbourne after the Tour Down Under which is about 800km, I met Lance Armstrong twice only briefly but long enough to get photos. I have had auctions and spinroom team events to name a few and there is plenty more to come!

        I have also started going to the gym and doing a bit of boxing. I don’t let the cancer rule my life but I try to be smart about it all the same. I wont go out riding if it’s really cold or wet now, instead if I want to ride I will jump on my excerice bike which is inside.

        I decided to do a ride on the weekend in Melbourne (I don’t usually ride in Melbourne as I am from the country and hate the traffic etc) Well I had a fall lol…We have trams in Melbourne and I hit the tram tracks on to much of an angle and I got spat off! Landed face first broke a tooth and ended up with 3 stitches in my chin….But I was sooooo happy because I landed on my face and not my hip so no broken bones!!!!!!

        Here is a link to my website if you are interested http://www.ridehardtobreatheeasy.com.au

  • http://twitter.com/shiab72 Teshia Birts, CAE

    Wow…this is a medical doctor with these types of comments?  Clearly we’ve all been touched by some form of cancer.  Personally, I have lost love ones to breast and pancreatic cancer as well as leukemia.  My grandfather died a few days short of my mom’s fifth birthday.  It is not uncommon for individual foundations to establish goals for THEIR mission in particular. That’s why these non-profits are formed…HELLO!?! 

    And I completely agree with your comment about Komen — it took many years (I suspect) and very aggressive goals for that organization to have the ability to create a fund for general cancer research; much more goes into it like public relations and public awareness efforts which shines more of a spotlight on an issue, but that did not happen over the night.

    I’m just appalled really.  If Dr. Brawley dismissed the seriousness of the interview or he was just unsure of how to handle the questions, he could have at least covered a bit better than he did.

    Thank you for all you do, Jennifer!

  • Pingback: Ending the Stigma & Increasing Funding for Lung Cancer | Medivizor