For nearly 18 months now, I’ve been trying to write about complex medical issues in an accessible way that still covers the difficult nuances and shades of gray of these topics. I try to show and weigh the evidence, and when I don’t have an evidence-based answer, I offer my thoughts with the caveat that there are other views and judgment is required. And you know what? Plenty of people seem to be happy to get more sophisticated answers than just the fluff sound bite coverage of a topic.
So what would be the opposite of OncTalk? A grossly underqualified person who provides a glib, wildly oversimplified and sensationalized distillaton of a complex topic into a digestible candy morsel of information. I think that the teaser on the 11 pm news about every “new breakthrough for cancer” because someone killed cancer cells in a test tube by drowning them in ketchup is a real problem. These snippets are so from being a useful treatment that it leads people to have unrealistic expectations and distracts them from the real and useful information that consumers should be gathering. I think it’s a tragic disservice to sensationalize and oversimplify health care information, especially about major issues like cancer, that lead to false hope and misunderstanding of options among difficult medical choices.
An article today that came from a source called HealthDay blared “Frying Tumors Can Boost Lung Cancer Survival“, and this was picked up by several mass media franchises (member dadawg001 asked about it here). Now, I imagine that Amanda Gardner, the reporter who sings the praises of radiofrequency ablation (RFA) here, is a nice person, but this is a silly piece of puffery. Moreover, I haven’t seen her at any of the cancer meetings, and I would love to know what qualifications she has to education the general public on how to treat their cancer. The report isn’t about a trial comparing people who were randomized to receive either RFA to surgery or radiation, which would be more conventional approaches. It was (as far as I can tell, with almost no actual content provided) just a single institution trial of some number of patients, who very well might have had the same or better survival with no treatment at all or with standard radiation. The comments that followed are by Dr. Damian Dupuy, who has done more of this work than just about anyone else (see prior post). That makes him the single person who I would predict to be more biased in favor of RFA than anyone else in North America. He suggests that the medical establishment is way behind the times in not recommending this approach routinely. I think my kids are beautiful too.
By the way, this work is being presented at the annual meeting of the Society for Interventional Radiology, so basically the people who make money by doing RFA think RFA should be done more often. Hmmm — why didn’t I didn’t read anything in all this about the FDA warning on the basis of the excess numbers of deaths they’ve had reported from people doing RFA on lung tumors (see prior post)?
Don’t I administer chemo for a living? Sure, but this site is dripping with evidence from comparative trials to support what we’re doing, and I happen to spend a huge portion of my waking life trying to provide a thoughtful perspective to people here, for no financial gain. Let’s keep the PR marketing out of this. It annoys me when companies push out press releases about their new wonder drug being the cure for cancer based on a study with 40 patients, or people make unjustified claims about Mangosteen, or the newspaper runs a sound bite about the next great thing.
It’s not that I don’t think RFA could be helpful. It just needs to be studied carefully, and if it proves to be better than what we’re doing, I’ll be the first to publicize and recommend it. But poor readers might presume that HealthDay actually knows something about health and not just hyping the latest story, or that the reporter for this article is remotely qualified to discuss this topic.
I’ve actually been thinking that GRACE should give out honorary awards for the most idiotic news reports each year, like the Razzies that award the worst actors and movies each year. This would be a way to try to elevate the level of discussion by highlighting and embarassing the people who have done the greatest disservice each year to the cancer community by irresponsible journalism.
Sorry to rant. It’s just that the whole mission of what we’re doing is to try to provide detailed education, and garbage fluff news reports are like painting over a nice neighborhood mural with graffiti. Sure, it’s more paint, but is it better?
We’ll probably never do something as caustic (but cool) as the Annual Most Irresponsible Medical Journalism Awards. We don’t have time to sift through the many choices anyway.
posted by Dr. West @ 8:16 pm link to this post
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March 18th, 2008 at 8:41 pm
well, you can call it a rant or not, I call it saying it the way it is
thank you so much for being there, as always.
March 18th, 2008 at 10:27 pm
I am going to make a counter argument.
I think that doctors/oncologists/researchers need to expand their minds a bit. The treatment options have not been successful for lung cancer over the past 15+ years. We are not seeing large enough improvements in survival. We are beating Cisplatin to death in cancer trials, let’s try something different. How about some trials without Cisplatin? Maybe RFA, proton therapy, cyberknife, etc. all could be better alternatives to conventional radiotherapy, yet we keep focusing on chemicals. We won’t know if the are until we try.
I am not sure that the staging system that occurs in treatment for cancer is of any benefit to a patient. This system pigeon-holes patients into categories, and it decides treatment options and ultimately survival % ranges. We base these treatment options on carefully based studies, but we don’t ever consider these studies comparable to one another, only against a control group -so why should these treatment plans pertain to a specific individual? I feel that we are limiting a patients full cure potential by trying to fit them into a “Stage.”
If we keep expecting to see 15% 5 year survivals for lung cancer, and we continue to catergorize and we continue to base treatment options on these “Stages”, guess what is going to happen? We are going to continue to see 15% 5 year survival rates.
Doctors are so quick to dismiss early detection for lung cancer via CT Scanning because IELCAP did not have a control group. Yet we now have MRIs for breast cancer, virtual colonscopies CT Scans, and still watchful waiting for lung cancer.
Think about this fact - if we cannot compare IELCAP study with it’s 92% cure rate VS 15% general population current cure, let look at the benefit of all other major cancers:
http://tinyurl.com/2qx8bx
IN TOTAL for breat, prostate, and colon cancer, the survival percentage has increased 58% or about 20% per cancer. In comarison, IELCAP had a 77% increase (10 year survival) in survival alone for the deadliest cancer on this planet.
Either 1 of 2 things are happening, we are making barely any progress on the oncology front at all, and we are just detecting cancer earlier now vs the past which is accounting for our increased survival in the other 3 cancers (lead time bias). OR, and I think more likely, 77% spread is a significant amount in improvement of survival for lung cancer, with or without a control group, and we need implement CT Scanning immediately for higher risk patients.
As for the argument of all the extra radiation exposure from CT Scanning - we will have a better way to do this screening someday, maybe 1 or maybe 10 years from now, so let’s save the people that we can right now - they will never accumulate enough risk over the next 10 years to worry about the radiation exposure.
And I would challenge anyone to quantify the number of people currently with lung cancer because of over-use of CT Scanning. I have yet to see a post in a forum with someone stating that they obtained their lung cancer because of all the CT Scanning that they’ve received because they were high risk. I don’t believe that there has been a single documented lung cancer death due to over exposure from lung CT scanning. But I’d bet my own life that there have been a whole bunch of deaths because we are not scanning.
Better yet, how about quantifying the number of patients who potentially could have been positive outcomes, but the numerous CT Scans turned those cases into negative outcomes. Why don’t I see studies compaing outcomes for difference arms using the same treatments, but different diagnostic measurements (CT vs MRI perhaps.) Who knows, all these CT Scans could be what is causing all of the negative outcomes.
Who asked for these new contraptions to be made if they are not going to improve outcomes? I think if we want to make more progress than we have seen in the past 15 years, every new idea needs to be taken seriously, and it needs to be acted on quickly to determine effectiveness.
The news stories are more of a function of the lack of progress that we have seen for so very long in lung cancer, and the on-going quest for hope. These stories will go away once progress is made. We don’t ever hear news about the latest developments against the war on nearsightedness, we already have solutions to that.
Jim
March 19th, 2008 at 6:03 am
Lung cancer has much less favorable statistics because it’s lung cancer, which is far less responsive to treatment than breast or prostate cancer. Yes, we don’t have a screening system yet, and even though I think screening could well prove helpful, that 92% cure rate is absolutely NOT for the same kind of cancers that most people here have. Many of these are the cancers I see that are indolent BACs. I think you’d likely see an incease in cure rate, but it absolutely wouldn’t be 92%. That increase could partly be from finding bad cancers early, but it would also be because we find an extra 10,000 - 20,000 or maybe more new cases of slow-growing BAC as 6 mm nodules that we remove and congratulate ourselves for, and I-ELCAP says are miraculous saves, even though many of those patients might have gone 40 years, or longer, before being directly impacted by the cancer.
I think PSA screening for prostate cancer may be an apt analogy for CT screening. Let me clarify that I favor PSA screening and think it has contributed to fewer prostate cancer deaths in some men who would have had a threatening version of the disease. But it picks up a HUGE percentage of men with a very indolent prostate cancer that would have never bothered them, who now undergo a surgery and become impotent and/or have urinary incontinence, for a cancer that would not affect their survival. Those people are a big part of why prostate cancer is by far the leading cancer diagnosed in men but not the leading killer — you find a lot of irrelevant cancers. We could implement a screening program for lung cancer tomorrow and diagnose way more cancers, increase the cure rate, but it would be a combination of curing some people who were really threatened and others who didn’t really need to be cured.
You can point to how bad lung cancer is and say that it merits a free for all. Fine: good luck with that — you can do what you want. But I started this site to educate people about what appears to be best, and you can’t do that when you just make it all up as you go along.
If you ask why these new techniques exist, I can assure you it wasn’t by people with cancer who needed new treatments. In capitalist USA people make money for developing new techniques, and people make money for giving them. And to think that RFA, cyberknife, chemo, etc. would succeed if they weren’t profitable is naive.
By the way, I agree with the Lung Cancer Alliance that lung cancer is a terrible disease and is criminally underfunded. But I didn’t see them come out with an official declaration to abandon current treatment modalities and just start over with a “let’s throw it against the wall and see if it sticks” philosophy. I realize LCA is monomaniacal about screening, but that won’t be the end of the lung cancer story, and there’s plenty still to focus on after someone’s had a CT scan. I would loveto see them spend more time and effort on the big picture of destigmatizing lung cancer and getting more funding — which is something they do, but I wish they were more concerned about that and less about becoming a military force to demand CT screening.
It’s easy to say “we should study ___”, but many people doing work with devices, which are less well regulated than drugs, are less interested in studying something than in marketing it to the public today. And studying something takes money and actual careful planning, not just a sentiment that “someone should get on that.” Sure, we should just study everything, but are you going to actually pay for it?
And I don’t undestand what you’re saying about CT scans contributing to negative outcomes. You’re wildly in favor of CT scans for screening everyone, but CT scan are bad for diagnostic measurements? Do you just want to change everything to see what happens because you think we couldn’t do worse?
-Dr. West
March 19th, 2008 at 7:54 am
I thought of a useful analogy for these issues. When I lived in Boston, there were times when I’d face an evening rush hour commute that was painfully slow on the usual, direct route to my home. Now, being an incredibly impatient person, occasionally I’d be so frustrated with the slow pace of progress that I would get off the highway and just drive on a road that was clear, even if I didn’t know where I was going exactly, and even if it wasn’t necessarily in the right direction. I wanted to be moving faster, even if I didn’t get to my destination faster. More often than not, I’d get a little lost, or the other routes were slow too, and ended up taking longer than if I had followed the direct but slow path.
The pace of clinical research in lung cancer is maddeningly slow, but if done right, it’s deliberate and in the right direction all the time. You can be in a big hurry to just be moving faster, to do something different, but getting off the route for which you have good directions can lead you in a lot of wrong directions, and the people putting up the signs advertising the alternate routes are often the ones with fast food joints on that road, hoping to sell you something. They aren’t people calling in from a helicopter with a view of traffic patterns and the right way home.
It’s possible that one of those side routes will be a great short cut, but I think there’s a very strong chance that people will end up on an unintended detour. Do what you want to do, but don’t expect other people to pay your for your gas with our pooled rising insurance premiums and medicare funding. That money should be prioritized for things that have some evidence that they actually are better than other options.
I’ll keep offering the best map I can find. Someone else can offer the wild driving adventure.
-Dr. West
March 19th, 2008 at 8:56 am
I for one greatly appreciate your thoughtful comments and your dedication. I am one of those who not only reads every news article on lung cancer treatment I can find on the web but check pubmed and other medical websites daily. Your site has helped keep me grounded in reality. The comment above about trying everything reminds me of an article I read about a new method of determining what combination of drugs would be most effective for a particular medical condition. They said (something like) with 6 drugs the number of possible combinations was in the thousands. Obviously it would be insane to randomly try different treatments on people and just hope you have the right one. In the rare case it works you would not know if it was truly effective or what part of the combo may have been effective and the rest not necessary. Until we can individually genetically analyze people’s cancer and treat accordingly the clinical trial method is the best we can do. We feel fortunate my wife does not have one of the rarer cancers where treatment is essentially guesswork. Obviously we all wish more progress had been made in treating lung cancer but obviously some cancers are more difficult to treat than others. I suspect that part of the problem is that, more than most other cancers, lung cancer is largely tied to smoking and therefore more mutated and “tougher” than many other cancers. This is not to put blame on smokers but just a comment on the biology at work.
March 19th, 2008 at 12:38 pm
Dr. West, Please rant away when you feel the need. You are no different than the rest of us in feeling the frustrations of dealing with disease on any level.
I absolutely applaud the efforts you continually make to help us not medically trained to sort good from bad information. Who else do we have besides our medical professionals to help us with that? Sometimes people do not know what to ask their own doctors- you help us by providing information for us to consider and take back to our docs. The more concurrent opinions I see about certain treatments or protocols, based on information available, the better I feel about my own course of treatment.
I also do not feel you are anti- progress either- you give careful consideration to new things that come up and have always appeared extremely open-minded to me. I respect your sticking to reality too. I dont want false hope and promises. When I am not sure, that is the time I take things to my own doc, and discuss in light of my own history and needs.
It is hard enough to not want to second guess what decisions we make, but the news that makes headlines whenever there is anything remotely promising, no matter how untested or how far into the future, and presented as a cure for now makes me crazy too. These are nothing more than what we used to call sensationalism to sell papers and ads. Yes, people have a right to know the news. But present it in the proper context to get closer to the truth, be responsible journalists.
Yes, there are advances here and there. Yes, with my dx of BAC, maybe years ago they would have recommended chemo or watch and wait. Today there is Tarceva. Just an example. Who knows long term how that will work out, but as we continue to gather and share information, we do learn.
It is sad to think too that there is no one answer for everyone and it makes it very difficult to get specialized research or targeted drugs manufactured at reasonable costs when there is clearly no profit for pharmaceutical companies to make. They are not making money on being altruistic. It seems all to often that only public opinion changes things - like when certain famous people get a particular disease, then suddenly there are research dollars available. This sends very mixed messages to the rest of us.
And yes, there are what I think of as old school doctors and new school- those who dictate protocol as opposed to those who work with their patients as a team. There are docs who can also relate better to people and those who cannot. Finding that right doctor patient mix is difficult, and often there are not many choices because of things like insurance, finance, location.
Dr West, you are one of the few medical professionals I have seen that not only goes all out for his own patients, but for countless others who are NOT your patients. You deal with highly complex issues that have no one answer. There are so many considerations that I find it a miracle that you can even keep it all straight. I wish there were more professionals like you.
My own oncologist, Dr Gillenwater, highly recommended you. She has since left the UVA cancer center so that is very disheartening- it makes me grateful to read your thoughtful posts while I get used to another onco. At least I feel that I am as on top of things as can be reasonably expected.
You do us all such a service that there are almost no words except thank you. My own father was a radiologist, and I understand where you are coming from as far as being careful in what you say and how you say it because so many read your posts, but the fact that you are here at all says volumes about your sincere efforts on our behalf.
There will always be pros and cons on any issue, but at least it appears to me that you try to give a very considered opinion on what you do present. I like that you do not underestimate your readership- we are not stupid or unintelligent. You point us in better directions than just looking up data without meaning.
Thank you thank you.
Peace,
Cath
March 19th, 2008 at 6:23 pm
DR West,
I can only second what “hubbie” and “cath1123″ have said above. Anecdotally, I can add that I have used information from your posts to initiate discussions with my oncologist, for whom I have great respect. Largely because of these discussion we have developed a good relationship. He accepts and appreciates that I want to know the details.
I see him every 3 weeks now as we work through a 6 cycle round of chemo. At some point during each of our visits he will undoubtedly ask, “What do you hear from the West Coast?”
Thank you!!!!
March 19th, 2008 at 8:40 pm
Thank you all. I found writing that post cathartic.
I must say that I wonder what other docs think when patients of theirs come armed with very current information from here. I know that as a profession, docs can feel a little threatened and/or annoyed when someone comes in with lots of clippings from the internet or newspaper articles. But I think that the more frustrating part is having to be the wet blanket that says “whoa, that oversimplified article didn’t say that this drug has only been tested in mice at this point”, etc., or counter the fantasy image from a commercial that shows cancer patients dancing in fields (”if you have cancer and aren’t able to run a marathon right now, tell your doctor you need our (minimally effective and $800/month) energy pill!”).
I think doctors can and should be able to collaborate productively with patients who are armed with good information about the pros and cons, and who are realistic about the options. I hope I can corroborate or supplement what a good oncologist would be talking with their patient about. I’m relieved if there are oncologists out there who think that this approach is a constructive and non-threatening resource, and that better educated patients can also be very gratifying.
-Dr. West
March 20th, 2008 at 3:34 pm
Hi Dr West,
I have been following your work for about 2 years now and have stage 4 BAC which is curently being treated successfully with Alimta and Avastin, I also live in Australia.
I loved your post, I do alot of ranting and raving myself to my friends who think that as I look well I must be well and thus survive. Many simply dont understand how this cancer works.
My point is I have had many fellow cancer sufferers listen only to naturopaths and other unqualified people (when it comes to oncology) and follow purely alternative means, quackery and otherwise. As a result most of these people believe these “snippets” or fads such as xango, noni, MMS, goji and die as a result, many of them having only had a first line treatment let alone any of the wonderful targeted agents we now have, such as alimta/avastin/tarceva etc.
I am all for your site and as much as I hate chemo it has kept me alive for 30 months with a stage 4 diagnosis….not bad I reckon.
And with regard to obtaning a 92% cure rate, I agree with you, this disease is too nasty to reach that goal unless we too can produce a vaccine against it in the first place. re HPV vaccine for cervical.
Please keep up your good work as you are cherished and listened to buy so many.
cheers
matt
March 21st, 2008 at 8:12 am
Dr. West,
I feel very strongly about this topic. My view:
The seriously ill are among the most vulnerable among all of us. The absolutely only responsible and compassionate approach is to shed light on facts and information for those who want it in a careful, considered, and evidence based way. To shed no light is negligent, and to put out dubious information lacking in evidence is exploitative, maybe even cruel.
Onctalk is a careful, conscientious, and humane effort to help people. To me, this is the only acceptable response to the sometimes desparate needs of people who want very much to live.
Onctalk has been a key tool in helping me to fulfill my obligation to provide guidance to my husband on his medical care. This is my role in our situation, and I take it very seriously. I refuse to use anything but the most substantive resources, and I learned very early in this game how to sort the wheat from the shaft.
To me, the exploitative efforts that we all see in the media and elsewhere are simply inexcusable in are in violation of a principle that we should all live by….to do no harm.
Mary