<p>I am even more clueless than I realized (though, if one is clueless, I guess that goes without saying!) because I do not understand this:</p>
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</p>
<p>Now, I am not aware of any friends with lung cancer. But I do not understand why one’s reaction would be any different from, say, learning that a friend has multiple myeloma or brain cancer. What am I missing? Not a rhetorical question; any insights will be appreciated.</p>
<p>mimk6-</p>
<p>I believe that breast cancer came out of the closet in the US with Betty Ford’s openness about her own cancer.</p>
<p>LTS, forgive me if you already answered this, but did you ever get a clear answer on whether or not the supposed new uptake on your lung PET scan was actually cancer or something else?</p>
<p>Mafool, I don’t know how to describe it, except to say that lung cancer is quite accurately associated with smoking cigarettes, an addictive, self-destructive behavior. Furthermore, the advocacy group in Washington has on its main webpage a horrible visual = its founder who died of lung cancer, and unfortunately what jumps out at you about this photograph is the nicotine-stained teeth and the obvious peridontal (sp?) disease. No offense intended to this man or his family, but, that’s not going to provoke a lot of sympathy or even empathy. </p>
<p>I do not believe that Dana Reeve lived long enough to make any impact on lung cancer awareness, and, there are no or few “media digestable” candidates to advocate for this. I do know that in the past, interested parties have made a half-hearted effort to approach the families of famous or headline-worthy persons who have died of lung cancer, in hopes to get them to help with funding/awareness etc. but I do not know that any of these efforts have been successful. </p>
<p>If you think about it, if there is money available for cancer research, which group do you think will command the greatest share of the available funds?</p>
<ol>
<li> Childhood cancers</li>
<li> The Randy Pauschs of the world</li>
<li> Young women with breast or gynocological cancers</li>
<li> People who have chosen to smoke cigarettes, in spite of the well known health risks.</li>
</ol>
<p>Tobia_e, this is not resolved; we (meaning my new health team) are assuming it is actually active cancer. I am still sick - just got back from the doctor, his assessment is that I have had the flu all week; he said he can tell I have a lot of congestion. We discussed this at length and his opinion is that there is likelihood of BOTH situations going on - active infection/congestion as well as residual cancer. In any event, he gave me medicine for the congestion; chemotherapy is tomorrow, then we will do another cycle, and then scan, hopefully with no congestion.</p>
<p>Understood, LTS, thank you. You explain the societal stigma quite well.</p>
<p>But I still do not understand how, when we are talking about one’s friends, this particular diagnosis impacts friendships in a negative way. Oh well. This will remain a mystery.</p>
<p>LTS, if you have to be sick with an infection, I’m hoping your flu is a bacterial infection:</p>
<p>from today’s L.A. Times:</p>
<p>[Cancer</a> and the bacterial connection - Los Angeles Times](<a href=“http://www.latimes.com/features/health/la-he-lab18feb18,0,3038791.story]Cancer”>Cancer and the bacterial connection)</p>
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</p>
<p>and an excerpt:</p>
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</p>
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</p>
<p><a href=“http://www.nytimes.com/2008/02/17/magazine/17wwln-lede-t.html?scp=1&sq=shaman&st=nyt[/url]”>http://www.nytimes.com/2008/02/17/magazine/17wwln-lede-t.html?scp=1&sq=shaman&st=nyt</a></p>
<p>(Coincidentally, after posting something relating to the writer Susan Sontag yesterday, I then came across this piece today, which is from yesterday’s New York Times Magazine and is by Sontag’s son [a writer himself], who recently wrote a book about his mother and her death.)</p>
<p>LTS, thank you taking the time to respond. I appreciate it. I hope your congestion clears up, and your next scans show good news just as the last MRI did. You’re in my prayers.</p>
<p>I told a few friends and neighbors. Some dropped off the face of the earth. I always felt funny about telling people – “So how are you?” Me: “Well, I just was diagnosed with cancer!” It’s the worst-case answer to a question many of us REALLY don’t want to know the answer to… I’m pretty open about talking about it once people know, though, and I discuss it more here than anywhere else these days. I’m kind of burned out from the support lists.</p>
<p>Very, very few of my kids’ friends know. Just not something they wanted to share. They say it hasn’t affected their lives (which is total B.S.), but I can see how it has. I think because they were still fairly young when I was diagnosed, it just became absorbed into their reality, and we all keep truckin’ along. I’ve tried to not let it dominate our lives and to keep things as consistent and “what we had planned” as possible. I’m the one who does the adjusting. ;)</p>
<p>"Posh Tent Ladies don joggers in fight against cancer"</p>
<p>(love that headline)</p>
<p>
</p>
<p>[Posh</a> Tent Ladies don joggers in fight against cancer - Local - General - Northern Daily Leader](<a href=“http://tamworth.yourguide.com.au/news/local/general/posh-tent-ladies-don-joggers-in-fight-against-cancer/1184749.html]Posh”>http://tamworth.yourguide.com.au/news/local/general/posh-tent-ladies-don-joggers-in-fight-against-cancer/1184749.html)</p>
<p>Shortly before I was diagnosed with breast cancer, I was shopping with friends for Christmas. I was trying to buy an ipod clock/radio docking station for my husband. Wanted an inexpensive one, found a great deal but they were all pink!!! They were “breast cancer” support, money goes to research etc, etc. I said to my friend, I have had it with all the breast cancer stuff!!
What about all the other cancers. Look at Dana Reeves, did you know there are many women (and men) who die from lung cancer who have never smoked.
My friend thought this was quite radical of me especially since we had a very good friend who died of breast cancer several years ago.
My point to her was that while the research in breast cancer was needed and has benefited other cancers, that support is off and running. Maybe we need to step up for the other cancers now.
After I was diagnosed she said to me, “I’m sure you have changed your mind about that breast cancer stuff now”
Just the opposite. I have outlawed pink stuff in my house. I tell anyone who wants to donate in my name, to donate to lung or colon cancer causes, or to establish more breast centers around our state.
When I am done beating my cancer, I will find out what I can do to support research for lung cancer.</p>
<p>LTS wrote (back on post #1525):</p>
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</p>
<p>Congratulations on this piece of great news!!</p>
<p>Don’t forget to rest up as you recover from the flu so that you can continue battling your cancer with strength and resolve!</p>
<p>I just read a fascinating and very moving story: brilliant Duke freshman (Siemens/Westinghouse semifinalist) is diagnosed with a very rare cancer, decides to devote himself to finding a cure, learns that the only researcher in the country with a grant to study his disease is at Duke, devotes his time to research in this lab as well as addressing some structural problems that are hindering progress:</p>
<hr>
<p>In their research, they discover something surprising: The biggest obstacles to a cure aren’t necessarily scientific ones. They’re human.</p>
<p>Numerous researchers at Duke, in Boston and in Europe are ready to work on chordoma, but don’t have the cell lines they need. Meanwhile, the tumors needed to produce those lines are just being thrown away by the surgeons who remove them.</p>
<p>Doctors aren’t talking to one another. Various neurosurgeons, orthopedic surgeons, and others have experience removing chordoma and trying to treat it. But the groups have never sat down and compared notes.</p>
<p>Funding is certainly scarce. But there is also no basic infrastructure, not even a database of the disparate patients and doctors treating chordoma to organize a clinical trial.</p>
<p>Chordoma doesn’t need another lab assistant. It needs a field marshal.</p>
<hr>
<p>[Optimum</a> Online - News - AP News - College Student Fights His Own Cancer](<a href=“http://www.optimum.net/News/AP/Article?articleId=386474]Optimum”>http://www.optimum.net/News/AP/Article?articleId=386474)</p>
<p>Keymom, I am sorry about your breast cancer diagnosis and pray you will beat the beast, and quickly…</p>
<p>Regarding lung cancer, I have thought about this and researched it so long that my head hurts - literally. Part of the problem is that smokers who are diagnosed in many cases continue to smoke cigarettes right through treatment. Some survive; obviously, most, over 90%, don’t. So this just has to cause tremendous discouragement in the health care professions and communities of interest. But the other side of the issue is that more and more women, and more and more never-smokers, and younger, are being diagnosed than ever before. And patients on both ends of the spectrum are caught in the same group. </p>
<p>The best thing I can think of to do is to start by electing the right people to office, because improvements in lung cancer research funding and other cancer funding is simply dead on arrival without the political will to make it happen. This has to be followed and supported by adding policies that are environmentally friendly (there has to be a reason why cancer now strikes 1 of every 4 households and it has to have roots in environmental issues), and, I do not think it is going to be possible to fight lung cancer and fight for more research dollars for it without also fighting the tobacco companies. </p>
<p>Beyond that, hearing that there will supposedly be a shortage of oncologists in the country by 2011, and especially after listening to Clinton and Obama lately, it occurs to me, even if we could magically provide health insurance for everyone by the end of the next presidential term, where are the doctors going to come from to serve all of the poeple who are not currenty going to doctors because they lack insurance? Do we have anywhere near enough doctors to meet the need? I am worried that even if it is possible to increase funding for cancer research, there will be such a huge shortage of health care professionals that it will be difficult to leverage research wins.</p>
<p>Edited to add: I have also read that fewer than 5% of lung cancer patients participate in clinical trials. Now, for small cell, there are very few trials available to start with - however - patients are not making it to the trials. I am sure that a large part of the reason is access to the internet or to information to even know about the trials, but, the other issues are that trials cost money - you have to travel to the trial site, you have to be physically well enough to withstand the rigors of the travel and often must stay in a different city for weeks and a time, which can be very expensive. Also, often insurance doesn’t cover the trial, or it doesn’t cover enough of it, and the lung cancer patient often doesn’t have any spare funds. But trials HAVE to be conducted in order to get new drugs into the pipeline, and, trials need participants in order to be valid. Some of the long term survivors and I (once I beat this thing) are looking at ways that we can try to get lung cancer patients hooked into trials, either by soliciting funds to pay for their lodging, airfare, etc. But this is in the talking stages only and a long way off from anything concrete, and in any case, I need to win my battle first.</p>
<p>NYMomof2, thank you for posting that. It’s a very interesting article. The survivors of very challenging cancers for the most part seem to have had to cook up their own soup, so to speak. And it is very difficult to get information sometimes - I am getting a lot of information on trials by word of mouth, etc.</p>
<p>Curiousmother, thank you, I am recovering a lot but still not 100%. I have been put on exercise restriction - no more until I’m better, so, no more workouts in the gym for me for a while. Just feel weak and tired while simultaneously too keyed up and stimulated by current events, opportunities, interesting projects etc. to sleep - a goofy place to be - and, had chemotherapy yesterday, I don’t think it’s the chemotherapy as much as I think it’s the associated medicines they have to give me to protect against allergic reactions, nausea, etc.</p>
<p>" I am sure that a large part of the reason is access to the internet or to information to even know about the trials, but, the other issues are that trials cost money - you have to travel to the trial site, you have to be physically well enough to withstand the rigors of the travel and often must stay in a different city for weeks and a time, which can be very expensive. Also, often insurance doesn’t cover the trial, or it doesn’t cover enough of it, and the lung cancer patient often doesn’t have any spare funds."</p>
<p>I’m more than a bit confused now. When my husband was on a trial all costs, including parking, were paid for by the drug company. For those patients that had to travel to be on the trial the drug company covered travel and any housing costs. (They offered to cover our gas, but seriously, we lived 15 minutes away, it was like a grocery run…) Insurance was off the hook for any expenses. </p>
<p>As they looked for more trials, the other interesting thing that came up is if you are being treated at a facility that is known for trials, even trials that aren’t based at that facility can be administered at that facility if all the doctors are willing to cooperate. (Which is no easy feat, records need to be shared, protocols need to be followed to the letter even if the trial protocol does not sync with the local center protocol.) </p>
<p>I think this is where the system normally breaks down. There doesn’t seems to be anything other than comradery and handshakes among experts that allow patients into trials, even when they may not be local. The HIPAA laws, the strict protocols that are okayed by the insurance companies, all these have to be worked around, and some doctors don’t have the staff with the knowledge or patience to do that. And if you have a onocologist not associated with a research center, well you are just out of luck. There should be a way for onocologist at local hospitals to work with regional research centers, rather than have the patients move.</p>
<p>The other problem is sharing of information for research. To collect information from local hospitals on lymphoma, research doctors have to hire technicians to drive to various hospitals and look at records, as the records can’t be electronically sent back to the research center because the names are included in the records, and that would be against HIPAA. Our local onocologist applied for a research grant that would pay for this technician to collect information for two years, she was given enough for 3 months. Wouldn’t you think there would be a more efficient method, maybe a software programs that strips names and sends the information?</p>
<p>UCDAlum82, I trust all is well. I have been thinking of you…re who pays, I have not yet discovered a single trial for small cell lung cancer that did not require full payment just like any other health care service. The NIH is the single exception. Perhaps lung cancer is different here, too? In fact, I just gave some money to a family because they needed airfare to travel from New Jersey to Texas so that their mother could participate in a trial for liver mets…they didn’t have enough money to fly and driving would have of course been impossible.</p>
<p>As to the shortage of onocologists, I don’t understand the system, but I certainly understand why there won’t be enough onocologists. It’s just impossible to make a living as an onocologist. One that we worked with was a fellow working on a trial. He had four years of undergrad, four years of med school, residency, specialty residency, and was in his thirties with a wife and small child at home. He was making less than the phlebotimist, and had to pick up weekend shifts at a nearby hospital to make ends meet. And given his salary, I don’t think he was paying back college loans. Retired doctors I know do not push their kids to become doctors, as it does not make sense at all from a financial point of view. It would take forever to pay back the college costs. And a specialty like onocology takes more training.</p>
<p>LTS- most mere mortals feel as you are describing while recovering from inluenza. I never understood what this illness can do until husband and I were both felled by it several years ago. I’ll tell you this much: nothing except that which was related directly to survival was accomplished in our household for more than a week!</p>