Patients turn to the internet when we do not have enough access to or interest from our doctors. I've routinely experienced ten minute appointments with doctors who seem busy and distracted and genuinely unconcerned even as I've been having alarming symptoms. A recent doctor overlooked a serious kidney issue that led me to gain 30 lbs of water weight in one week. The doctor spent less than five minutes with me, seemed completely bored, chalked my symptoms up to my menstrual cycle and refused to run any tests even after I asked him to check my kidneys. I spent a lot of time with Dr. Google in the week that followed. Unfortunately, much of the information online is scary. And I recognise that it's incomplete and that I lack the necessary information to parse through it all in a meaningful way. I'd much rather have access to a doctor who has the time to consider what I'm describing, who thinks about about it and shares their opinion and their rationale with me. It's also very alarming that doctors seem unconcerned with discovering the cause of problems. They provide pills that treat the symptoms but seem content to name the problem "idiopathic" and move on. Finding a doctor with the time and interest to take their patients seriously is surprisingly difficult.
I dont think anyone is qualified to comment on this unless they have actually had cancer, and only then do you know how this feels to be overwhelmed with doctors, websites, books and any other form of information you may look to.....Of course it is helpful to do your own homework, but in the end you must rely on the doctor and his/her knowledge to get you the best treatment for your cancer....It is unfortunate that in this country's medical system those doctors are so overworked with too many patients that they cannot give each patient the time and answers needed to ensure you understand the path of treatment, you cannot blame the doctors for this but an extremely broken medical system that our current President does not want to fix!!
2
Why do cancer patients resort to the Internet to know about their illness .. because they can! when you are diagnosed with cancer you are at a loss to understand why and how you got sick, and doctors will not volunteer to give information or explain the illness unless you ask questions... but most of the time you do not know what questions to ask... to keep things short, good or bad it is a good thing that people now have other sources of information than their oncologist or doctors.
6
@Sabine Thuilleaux I totally agree. I feel like getting diagnosed with cancer is such a life-changing moment no matter how sure it is that you can beat it. People are always afraid of getting it and I think for the most part people are most likely to assume the absolute worst. This doesn't help when they start reading conspiracies about how the treatments are worse for you than the cancer and so on. I think it can be pretty easy for people to go down a path that is very unhealthy when they are just looking for answers.
1
The sites recommended are excellent. Also Sloan-Kettering, Mayo Clinic and other medical sites.
And,of course, The New York Times.
You have to have a doctor but you can educate yourself on the issues which helps.
2
On one extreme, there are quacks and charlatans pretending they can cure any disease and ripping people off. On the other extreme there are ridged, know-it-all, self-righteous MD’s who are not capable of communicating well with patients or understanding the limitations of their knowledge. As a 33 year medical malpractice attorney, when I sit across from a physician in a deposition who allegedly has injury or death (according to medical studies medical malpractice is now the third leading cause of death behind coronary disease and cancer) I often hear as a defense: “ medicine is an art, not a science. And thats why we call it the practice of medicine.”
My next question is usually usually along the lines of: “ why didn’t you tell the patient that at the beginning so he could make an informed decision?” My experience teaches me that no one knows all the answers as to how illness begins, how to heal or how to treat a disease and that humility and openness are key attributes in the practice of medicine and life. More knowledge and more information is generally preferable to the opposite.
8
One of the points that is always missed is patients are the captain of their own medical ships. As a patient with Lupus and a very rare form of cancer, if I did not do my homework I may not still be alive today.
The patient has to do their homework so they can have an intelligent conversation with the medical staff they interact with and ask appropriate questions for their own sake and survival.
19
I personally think the internet is useful for obtaining medical information as long as you use it as a starting point. Ironically, I find that some doctors aren’t interested in going into detail about diagnoses, procedures, etc. even if you are asking intelligent questions based on information found online. My father a former scientist, has cancer and is being treated at a prestigious hospital by doctors who are very knowledgeable. Still, my family has the sometimes unwelcome reputation for peppering doctors with questions.
I believe my role as a patient is to help my doctor think about how best to treat me. Asking thoughtful questions has the potential to effect outcomes so even if you ruffle feathers in the process, it’s well worth it.
13
You have to take control of your medical issues. Medical websites and doctors and reading up on the subjects
is the only way to go and make your own decisions. The doctors are not the ultimate decision makers.
You are.
9
Up To Date is NOT a free site
2
@Chelsea The patient version is. The link in the article takes you to the patient version where you can search topics and get an MD-curated explanation geared to patients. You also have the option of subscribing for a week or a month so if you get a diagnosis and want to learn about the latest info that the MDs have you could do that too.
2
@DMH--The free version contains very limited information. The paid version is excellent.
As a women who was just diagnosed with early stage breast cancer- the website in article and the information obtained from the article is priceless. All I can say is “Thank You”!
5
@JPG Breastcancer.org is a very thoughtful and helpful site.
Searching the web, even sanctioned establishment websites without understanding the language can increase the anxiety level for the patient and their families. I have written a guide book (Diagnosis Cancer! What happens next?) specifically to demystify the process and language, provide the basis for treatment decisions, not to provide treatment recommendations. That way, patients can make more educated searches.
4
"Unfortunately, Dr. Google doesn’t always know what’s best." Equally unfortunately, neither does your doctor. Doctors are just people. People can and do make mistakes, make honest errors of judgment, misinterpret test results, be influenced by factors other than what the actual evidence shows. Doctors disagree. That's why many insurance companies require getting a second opinion before embarking on certain procedures. Sure there's lots of nonsense, frauds, charlatans, and worse, on the Internet. There's also lots of good information, found on the Web sites of major health organizations, as some other commentators have listed. Those Web sites are on the Internet, folks! So please don't tell me to avoid the Internet and then give me a list of five Web sites to go to. The very scientific studies on which much genuine and medically sound advice is based are on the Internet. The trick is to separate the quacks from the evidence-based. That's not such a difficult thing to do. Use your common sense. And by all means use the Internet. Just do so wisely, with due care and caution.
15
I have chronic myeloid leukemia (CML) which has a great prognosis with the oral chemotherapy (TKI) available. While I would not use the net for deciding my medical treatment (I have a great oncologist), I have found it particularly good for two things. Both were gleaned from sites where patients shared experience and suggestions. The first was learning about the symptoms that they had rationalized away prior to their diagnosis. I had a bunch of these minor symptoms like night sweats, bruising, and a weird rashy sort of thing that I was afraid were bed bug bites, although no bed bugs, shortness of breath lying on one side. The more important thing was how to deal with side-effects of the TKI. I had nausea for a couple of months before I read a suggestion about how to structure taking the med. I have never had a day of nausea since. Even my oncologist was interested in this. They also had info about other side-effects so I was prepared and was ready to ask my doc for a diuretic (and knew it wasn't something unusual) when I had pitting edema. No more swelling. Same thing with leg cramps. The net, and other patients willing to share, has been a god-send for me.
20
A month ago, a CT scan revealed a likely cancerous growth in my body. I was told that the next available appointment with a specialist was this week: four weeks after being told I probably had cancer. There were no earlier appointments at the practice, no one to whom to ask questions. Looking things up on the internet did indeed scare me, but in the absence of access to a doctor, it was impossible to go through four weeks of complete ignorance. Balancing using the internet to allay anxiety rather than feed it is a tricky negotiation, but sometimes, it's worth the risk.
28
Isn't it correct that a simple blood test for cancer markings CA 125 can inform whether or not your physical issue is cancer?
@Terry Carr
No, life is not that simple.
CA 125 is a blood test associated with Ovary Cancer.
When a patient has ovary cancer and the CA 125 is elevated, the test can help monitor the activity of the disease.
For women with "physical issue(s)" which suggest ovary cancer, examination, imaging and blood tests all put together can help reach an answer.
A normal blood test in the presence of symptoms does not prove there is no cancer. An abnormal blood test does not prove there is cancer present.
Doctors have tried to use the test to screen for ovary cancer in women without symptoms. This has not worked. Getting the CA 125 test in healthy women stirred up more harm than good. (Healthy women were put through un-needed testing and procedures).
Doctors are still looking for a good screening test for ovary cancer.
The CA 125 is used primarily to monitor disease activity when a known cancer is being treated.
1
@Terry Carr--Nope. If only.
1
The best advice I received the day of my cancer diagnosis was stay off the Internet.
As a Professor of Biology with a PhD in genetics from a medical school one would think that I could handle the comments and information on the many patient blog sites. They drove me crazy with worry. I soon realized they lacked information and were either anecdotal or fiction.
Please stay on the curated sites .edu or .gov sites.
When a friend or friend of a friend reaches out to me because I am a cancer survivor I give them words of encouragement and give them lists of safe web sites.
America Cancer Society
Breast Cancer.org
Mayo Clinic
Dana Fabre
NIH.gov
9
@Liza Please add Memorial Sloan Kettering to your list of safe web sites, they do an amazing job.
4
Please also add M.D. Anderson Cancer Center at the University of Texas in Houston to your list. It is the U.S. News and World Report #1 cancer hospital. Even though I live in the eastern part of the country, I am eternally grateful I ended up at MDA for my cancer treatment. The care, respect, and stellar medical care I received there was exceptional. The doctors there saved my life.
1
As someone more familiar with cancer than I would prefer to be, I can make several sound recommendations for sources of information about cancer.
The National Cancer Institute has been publishing its PDQ® Cancer Information website for some time. There's a professional version which oncologists use, and a public version that's simplified. Both are readable and quite helpful.
Also, many leading oncologists collaborate on a cancer guide, Everyone's Guide to Cancer Therapy. Its clear, and collects in one place much of the information in the PDQ.
These sources aren't the last word on all cancer treatments - see, for example, the Times' series of articles over the past several years on harnessing the immune system to fight cancer - but they're good places to start. Ideally your physician could talk with you as long as you like, and take just the approach that you need, but for different reasons that doesn't happen too often.
10
When I was diagnosed with breast cancer my oncologist had one strong suggestion: stay off the internet.
1
@Victoria Browning Wyeth
Was she/he frightened of what you could learn from reputable sites (look at those recommended in other comments and in the article).
There was a study some years ago (sorry i cant provide a link) showing that folks who did some research on their condition and communicated with support groups to glean more info on others experiences, had a better chance at survival.
I wouldn't trust that oncologist, he seems insecure. Get a second opinion.
1
I generally agree with what the good doctor said in this article. The only thing I would add is to ensure, as best one can, that your treating oncologist is receptive to your research finds and not adverse to your talking about them with her or her staff. My husband was diagnosed a year ago with stage 4 prostate cancer, currently a terminal diagnosis. Our general oncologist is very kind and a "by the book" physician. Our specialist at the big city teaching hospital is not only kind but receptive to discussing my "latest research finds." Both offer good treatment but different perspectives. It's important for patients and their families to keep looking until they find the team that will be open to their style of understanding/research. This is especially true when the cancer under treatment is so deadly that searching for the impossible feels like an imperative.
16
Several years ago my daughter gave me a coffee cup that said Don’t confuse your Google search with my training and board certification. There is too much misinformation on the web and several times when I could not convince the patient to follow my advice, I needed to have them see someone else.
I have not felt that any doctor has cared or taken a sufficient interest in me or my mother in years. Support groups often have so much more information than any doctor has given me and they care about quality of life. Without a support group, I would never have known that protein interferes with my mother’s RX. It is not in the RX insert or pointed out by the pharmacist or the doctor. Meds are thrown around with no explanation. Despite many attempts to stop it, Oxycontin was prescribed and repeatedly refilled for my mother. The doctor would not shut it off, even a year after a knee replacement. I have lost a lot of faith in MDs. They know one path and it is paved with money.
16
Treatments for cancer
Generally barbaric
Patients become sicker and then maybe against odds better for a time.
Then the treatments cause future health problems including more cancer spreading with a vengeance.
Big Pharma via oncologist and their drugs have taken over and if you hear the diagnosis and it is about you .....
Yes internet searches and blog reviews are warranted.
Many reading this advice know the quest for answers that would suggest anything but our current treatment modalities.
If you passed your statistics and research courses in college and have been assigned to do research in school
Then u can certainly judge which sites are useful.
Sometimes moving out from the medical model is advantageous but scary for people with cancer.
9
@nurse Jacki . I am amazed (not really) that you got nine Recommends.
Traditional medicine treatments may be "barbaric". Dying from cancer is considerably more barbaric. Modern medicine works quite well. I'm twenty years post treatment for Stage Three throat cancer. Doing fine, thanks. Have sore throats sometimes, how ghastly. Mom survived, incredibly, 51 years after a Stage 4 diagnosis in the Forties.
Please don't prattle this nonsense. Sick and desperate people may believe it.
1
I hope Jane Brody (who I like and respect) reads these comments. The medical establishment is not always right or free of self-serving interests.
24
There is more knowledge in the world than there are facts.
4
Then there's the scenario when you get a concerning result from a mammogram, your doctor never talks to you about it, the technician (not even the radiologist) says you need a surgical biopsy to determine if it's cancer, and no other options are mentioned, let alone discussed.
You find out the biopsy will in reality be a partial mastectomy. Within days, an appointment is made for you with a surgeon who has very little experience in breast procedures. No one wants to hear you had severe complications from an unrelated surgery the year before (massive inflammatory response) that makes you more than a little leery to have your chest opened up, especially by a nonspecialist.
All for something that research online reveals is an incredibly controversial diagnosis and not a slam dunk at all. Of course I'm going to research it. I was left on my own to figure out the best course for me.
20
@LoraineF
Usually, they do a needle biopsy first. That is no picnic either! The radiologist can tell by the appearance of the lump whether it is likely to be malignant. I find breastcancer.org a useful site, and Susan Love's book about breasts. The problem is--doctors consider the biopsy routine and minor but it doesn't feel that way to patients.
13
@roxana You're right they usually do a needle biopsy first, but didn't offer that to me because the tiny spot in question was near the chest wall. The second surgeon did offer it, however, plus watchful waiting. There isn't any lump, and radiologists disagree frequently. Mine certainly did.
Btw, I loved Susan Love's book. :)
1
Loraine,
Hi, I think what Jane Brody is saying here is that you should go to sites that have reliable information, not that you should not get a second opinion from other doctors.
When I got my cancer diagnosis I got second opinions.
Then I made my decision based on that.
I hope your health has improved.
3
Like everything else in life, moderation is key. When I have had troubling symptoms, I would be drawn to the internet, (even though sometimes I tried to avoid it). Many times, symptoms can either be this or that, sometimes harmful and sometimes not. I read the information from a few reputable sources, absorb it, but then let my doctor(s) make the call.
3
A friend’s psychiatrist lectured her to not look up information online. After a dramatic worsening of her condition, due to denied side effects- she googled and found that not only were side effects real, he had active disciplinary actions against his license: he was on probation. Also, did not disclose industry ties. Some doctors are hiding something.
15
Don't do it. I 100% agree with this article. while waiting in excruciating limbo between my pathology report and first appointment with my new oncologist I made the mistake of entering my report data into a survival rate internet program. it spit out I had a less than 20% chance of surviving five years or my 44th birthday. I seriously considered killing myself I was in such despair. turns out the faulty site was using old information. the miracle drug herceptin had completely reversed my diagnosis I had an 80% chance of survival. I caused myself so much trauma for no reason.
16
I appreciate the sentiments to rely on your doctor rather than the internet however-especially when the doctor is advising a drug therapy —Big Pharma mis-information and complicit doctors have done significant damage to their reputations.
The intentional manufacturer-peddled misinformation that OxyContin was less habit forming than similar drugs has had wide spread devastating consequences. Also industry funded research (highly prejudicial), researchers compromised by industry funded “advisory” roles and speaking gigs at plush resorts and a lack of critical assessments by peers and industry journals taints the entire pipeline of professionals supposedly tasked with creating cures and better medicine.
Until the Pharma community, the medical and research communities and federal regulators make accuracy, efficacy and patient safety a priority over quarterly profits I will remain highly skeptical of all claims of miracle drug solutions.
13
“She also suggested that patients not be pressured to research their cancers until and unless they are emotionally and intellectually ready to deal with the information they uncover.” We have been grappling with my daughter’s cancer recurrence for two years now, and have waded through countless web sites, blogs, support group pages, and scientific literature from well respected organizations. Armed with all this knowledge didn’t change the course of treatment nor provide any clearer path forward. With the latest scan results, however, I have neither the strength nor the emotional capacity to hunt for answers to my fearful questions. We’re choosing instead to save our questions for when we meet with the specialist next week. We have put her health care into the hands of others who are trained and experienced in this type of cancer. I don’t know what else to do but that.
15
@DG--I'm wishing the best for you and your daughter. Sounds like a terrible time. So sorry for you all.
2
It's easy to argue that cancer patients should listen to their oncologists. . . but cancer is a disease that is common and well-funded. For unknown diseases, like PSP or Cortico-basal Syndrome, it's easy to have the expert neurologist have seen exactly ZERO previous patients. Patient groups have the information, pooling information from around the world, everyone reporting what their neurologists or specialty centers have tried. The secret, though, is moderated groups.
9
@CK "Cancer is a disease that is common and well-funded." No. Cancer is hundreds (if not thousands) of diseases, some well-funded and well-known, some not. In my own case, consulting Dr. Google after an ultrasound and MRI at a local medical center indicated a possible sarcoma, I found out through the Sarcoma Alliance and Sarcoma Foundation the importance of being treated at a high-volume sarcoma center, rather than local practice. Sarcomas are rare, about 1% of adult cancers. Would I be approaching five years cancer-free if I had not switched to the nearest sarcoma center for treatment? Who knows-- but a couple years ago, in talking with my sister-in-law's local oncologist, he said my oncologist "sees more sarcoma patients before lunch on Monday than I do in a year." So I agree, patient groups and organizations dedicated to specific conditions can be WONDERFUL resources. Even if they are on the internet!
3
Like any good research project, the user needs to check his/her authorities. If it published by a major teaching hospital, it probably is based in established science; if it comes from a chat room, check it out. Even when you quote a reputable source (e.g. NIH), a doctor can be frustrated that what you have read is at odds with their direction.
10
Major medical centers also tend to have good, dependable information online, e.g., Mayo Clinic, Vanderbilt...
11
I don't expect to be able to replace my doctor by reading information on a site, but googling diagnoses and possible courses of action has allowed me to ask my doctors better questions.
50
My husband relied on his doctor through a travesty of back pain misdiagnosis.... unfortunately, there's only one outcome when the treatment offered for bladder cancer is ibuprofen and physical therapy.
There's enough exhaustion, indifference and ineptitude in the medical professions that cross-checking with a back-up resource is a good plan.
55
If I hadn’t consulted the Internet, I would surely have died of my cancer. Three specialists had missed it, in spite of my symptoms (this was in the USA). One suggested cutting gluten out of my diet, another told me to eat more fiber.
I realized that something was very wrong and was getting worse. I found the American Cancer Society website and a list of cancer symptoms, some of which were exactly what I was experiencing. I then insisted that my GP prescribe a colonoscopy, after which I was diagnosed with stage 3 anal cancer.
I have heard many similar stories from other cancer survivors. The Internet can save your life.
64
You said of Dr. Schapira, "She also suggested that patients not be pressured to research their cancers until and unless they are emotionally and intellectually ready to deal with the information they uncover."
That's going to sound condescending to many, but as a cancer patient with a grim diagnosis, I agree. I did much research both online and in books available at my local library at the beginning of my disease, but I've backed off on it recently and am leaving it to medical professionals and major stories to inform me in the event of a breakthrough. Reducing stress is a valuable goal when your body is under attack, and good for your psyche at all times. A time comes when re-reading bad news does little good.
completeandtotalloser.blogspot.com
14
What a shame that Jane Brody does not include some extremely valuable and scientific resources online, like Dr. Michael Greger's nutritionfacts.org, and pcrm.org (physician's committee for responsible medicine). These are excellent resources where one can find out how nutrition can support fighting cancer. Unlike cancer.net, these websites do not receive money from drug companies. WAKE UP Jane!
15
Internet based information should not be used instead of seeing a doctor but as an adjunct both before and after a physician visit. This allows the patient to come better prepared for a discussion with their doctor and the ability to cross check or validate what is learned.
With regard to sources the initial value proposition of the web was that there might be relevant information for a specific health concern not listed on an .edu or .org site which were easily found before. Cancer patients in particular are often looking for clinical trials ane more innovative treatments and these are often found on sites other than .org (many of which only offer trailing edge standard of care info) or through interacting with social groups. I for example have found the Cancer Connect and Inspire social groups very helpful-more helpful than information sites in learning about treatment options and complications from individuals being treated at major cancer centers. Harvard Dana Farber, Beth Israel, Ohio State, Roswell Park and others use the Cancer Connect social community and being able to learn what patients are experiencing at these world class cancer centers has been invaluable to me. CancerConnect is a .com, not a .edu or.org.
9
Perhaps Jane Brody's article is a response to the revolutionary impact of Thomas S. Kuhn's "Disruptive Science". The Internet Age has empowered the autonomous E-Patient with online medical information. "Social media" has empowered individuals to create and manage their own version of a "broadcasting station". The Internet Renaissance gives access to previously protected information, which is then "goes viral". Not only is information shared, a new type of "medical information" can be newly created by collaborative groups of E-patients working together. Jan Brody brings up the problem of veracity on the internet, the issue of differentiating truth from falsehood, evidence based science from quackery? How does the e-patient know who to believe and trust when swimming in an ocean of unverified information? Unfortunately, during my medical school days in 1976, this topic was not covered, nor was it even even imagined. For more see: https://jeffreydachmd.com/predicting-the-future-of-medicine/
3
I am going to have to disagree with this editorial. Patient groups can be very informed and knowledgeable, with members who have advanced education in fields relevant to cancer biology--members who can read the scientific publications and attend medical conferences and UNDERSTAND the information--and relay it ACCURATELY to other patient/caregiver members of the group. I know because I am such a person--and Google is an important tool for me to find information or to link me to PubMed, or clinicaltrials.gov or to find an academician's contact information. A well run patient group can be the best way to learn where to find the most promising clinical trials, where to find the academic clinician experts, how to apply for financial assistance for the various drugs. And patient groups are experts at personal support for other patients. Google and patient groups are excellent at dispelling the snake oil salesman, explaining quackery, etc. Sorry but I couldn't disagree more with Jane Brody on this one. Unclear what her credentials are.
37
@Marina
And some patient groups, funded by such as Big Pharma, push just one agenda - take the medicine. It's all about sales, and a pill taking point of view, while there are often other avenues available that have no side effects and better outcomes.
2
A patient has to be her/his own best advocate.
46
I wouldn't be here today if not for the internet. Several doctors dismissed my abdominal pain and didn't order proper imaging. Turns out I had a rare cancer syndrome. Piecing together info on the web I was able to get life saving surgery. I am now involved with my syndrome's support group, also found on the web.
46
The one approach that Ms. Brody doesn't mention is the disease-specific, patient-led community (group) approach that is favored by a growing community of patients....once they learn of it. Our approach is also favored by the leading oncologists because our design (community, medical literacy-focused, service, authenticity, members vetted) actually brings more patients to their clinical meetings ready to find their very best treatment. Not only that, those top-line oncologists are joining in with our 24/7 clinical discussions in our community and guiding us with the most recent scientific information.
One of the best-know oncologists told a patient not long ago..."..those patients in COLONTOWN know more than we do about what is going on with drug discoveries and trials."
Another one gleefully names us THE PATIENT POWERHOUSE,
COLONTOWN is the name that rolls off the tongue of our best providers and institutions when someone is newly diagnosed with colorectal cancers.
Why? We satisfy a huge human need: knowing that we are not alone in our achingly difficult situation. We feel welcomed, and we know that we have a way to "FIND OUR PEOPLE" in the best model for patient support that exists. We enable connection between survivors who have had the very same experiences with the same disease.
Founded by a patient, the patient voice is now beginning to be represented at the "table" of the discussions about treating and curing cancer.
And it's about time.
30
Agreed, it's important to be careful with what you read on the internet, especially with life-threatening medical problems.
But having dealt with serious medical issues (though not cancer), I've also learned to be careful with what your doctor tells you. I would have been far worse off without Dr. Google.
30
What do you do if mainstream cancer theory is based upon wrong hypothesis? This is how I encountered the question after many years of so-called "internet research". I have received hundreds hours of lectures from researchers and doctors over 5 years. MY Take is that current 'gene mutation causality hypothesis' is wrong or outdated. Gene mutation is the downstream event after mtochondria became incapable to make ATP energy by oxidation anymore. Cancer cells then start fermentation of glucose or glutamine. In this process, weakened mitochondria of cancer cells produce lots of free radicals from ROS to damage genes, according to prof. Thomas Seyfried. "Cancer as a metabolic disease" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2845135/ Furthermore, regardless of the theories, current 'standard of care', such as surgery, chemotherapy, radiation is very dangerous to our body, though it sometimes removes cancer risk.
On the other hand, his ketogenic and hyperbolic oxygen therapies are safe and effective for cancer treatment as we can see from his reports from Turkey and Egypt. Unfortunately we can't receive his protocol therapies in this country.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884883/
12
Besides credible cancer-specific websites, I have found that websites run by medical centers of excellence like the Mayo Clinic (/www.mayoclinic.org), Harvard University (www.health.harvard.edu) and the Cleveland Clinic (my.clevelandclinic.org/health) provide excellent guidance on what symptoms may be caused by as well as guiding the reader to specific diseases like cancer.
27
There's a lot of bad information out there in cyberspace, but a lot of good info, too. When the quack-doctor at my mother's nursing home had no idea what was causing three fingers on her right hand to curl, I spent 30 minutes on the Internet typing in symptoms and finally came up with the answer: Dupuytren's contracture. (This was 10 years ago, long before the TV ads for Dupuytren's began airing.) When I began having brain fog and other symptoms, I found an online discussion board where dozens of people described similar symptoms from the same medication I was taking. I found a different med (through online searches) with fewer such side effects, printed out the info, and took it to my doctor. She changed my prescription.
My cousin was recently diagnosed with esophageal cancer and has already been told that they want him to undergo radiation/chemo, before the cancer's stage has even been determined. I took care of his brother and my own brother during lung cancer treatments, and discovered that oncologists seem to routinely prescribe radiation/chemo even to patients in advanced stages, causing untold suffering in order to extend life by a few weeks or months. In the case of my cousin with lung cancer, he finally died due to an undiagnosed brain tumor. He underwent routine scans of his chest, but the doctor (at a leading university cancer center) never once thought to scan the rest of him.
I know that docs don't like self-diagnosis, but that is a first line of defense.
68
My neighbor's Yahoo! Groups support group has a DDS and several PhDs on-board. Very lucky, get solid feedback.
And if physicians explained matters more completely, there'd be a lot less Dr. Google. It seems, they rush in, then rush out.
17
As a two time young cancer survivor (having had the full complement of treatments), I am sorry for your family/friends facing cancer and, especially, the ones losing the battle. My Mum died early of an aggressive cancer - while it was never going to cure her, she had palliative chemo (it’s a thing) to combat the sheer agony of cancer spread through her liver, pancreas and spine. Perhaps they didn’t explain to you that chemo serves different functions? At the end of the day, anecdotal examples do not an argument make...
To the inevitable commenters pooh-poohing western treatment for cancer, there is room for a breadth of treatments and my cancer center not just encourages, but has set up for me, acupuncture, a naturopath, meditation and so on. But, guess why I’m here with my family today? (Hint, it’s not because of the acupuncture). One of my chemo infusions, Docetaxel, is derived from the bark of a tree in the northwest. Western medicine has its place (look at the survival stats).
Literally the first thing I recommend to newly diagnosed cancer patients is, “For the love of god, do not consult Dr Google!”. The general internet seems full of misinformation and hypochondriacs. My hospital makes sure to recommend to us what sites are trustworthy for consultation. This article is excellent and accurate.
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The author recommends picking sites that have a .gov or a .edu web address over others. Ironically one of the web sites recommended in the article is the American Cancer Society, which is a .org for non profit. I think that this recommendation is short changing many of the disease specific non profits out there that work hard to provide patients with vetted information and support. Many of us are updating our online presence every week, with peer reviewed and published information, something you won't find at a .gov site, (which we also recommend people vist). We are also co-funding some of the cutting edge research conducted at multiple universities and cancer institutions in the US, and change our data as often as the ideas change, which in the world of cancer for instance is very quickly. That siad we also tell people not to ask Dr. Google much as interpreting what is found for the average person is problematic. I agree with other previous posts that state that many people cannot even discern a "trusted credible source" from the nonsense that permiates the web. We have huge disparities in healthcare in our country, web based information about risk factors and early signs and symptoms that might drive someone to seek professional help are important. If carefully written they can aid in early discovery and self referral.
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I like to read the literature. I find certain vocabulary words make the doctor think you are a more informed patient and you get more thoughtful responses.
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@Sw Very true, though it shouldn't be. I find that I tend to dress more formally on the days I see the doctor in charge instead of the techs administering my treatments.
If doctors are worried about patients going to Dr Google, then they need to have specific recommendations for quality websites to which they can refer their patients. I am a breast cancer survivor who would have been lost without the medical information and community support I found on the award winning website breastcancer.org. Fortunately I had a wonderful oncologist who steered me to that website.
The days of doctors being the sole providers of medical information to patients are over. Patients will go to the internet looking for information whether doctors like it or not. Doctors need to be ready to work with patients by giving them referrals to solid websites with medically accurate information.
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@Mary E
I also highly recommend breastcancer.org. Its medical information is excellent, but the biggest value to me was the forums that allowed me to find women who were being treated for the same type of cancer I had (based on hormone receptor and HER2 status, and TNM* staging) and the same chemotherapy regimen I was on.
The forums helped me deal everything from diagnosis, through chemo and radiation, and adjusting to the hated "new normal". They let me see that what I was experiencing was passing and could be endured, and provided helpful tips and support for getting through in the meantime.
Perhaps most important, the forums provided support for discussing all of these things with my doctors rather than "not wanting to bother them". This allowed my doctors to provide help with alleviating some symptoms and adjusting treatment for others.
Breastcancer.org was a lifesaver.
_______
* https://www.breastcancer.org/symptoms/diagnosis/staging
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@Marcy
I second that! I took a list of questions to my surgeon gleaned from breastcancer.org that I would not have thought of. Good docs welcome your questions. Bad docs give you the brush-off. It's a very bad system, really, to have to choose a surgeon you may only meet for 15 minutes. How can you judge someone with such limited contact? I spent longer with mechanics.
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I also maintain my sanity because of breast cancer.org. I highly recommend it.
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In 2017, the NYT had a story about cancer treatments performed by medical professionals with "good scientifically vetted information", as Dr. Schapira calls it.
I quote from the story.
https://www.nytimes.com/2017/11/20/health/dermatology-skin-cancer.html
"The Times analysis found a marked increase in the number of skin biopsies per Medicare beneficiary in the past decade; a sharp rise in the number of physician assistants, mostly unsupervised, performing dermatologic procedures; and large numbers of invasive dermatologic procedures performed on elderly patients near the end of life."
"In 2015, the most recent year for which data was available, the number of skin biopsies performed on patients in the traditional Medicare Part B program had risen 55 percent from a decade earlier — despite a slight decrease in the program’s enrollment over all."
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I have to admit being surprised by the assumption of this piece that at this stage of the Internet, most people still cannot distinguish among sites that are likely to be well-sourced, knowledgeable, and accurate from those that are not.
Then, again, H. L. Mencken did claim that no one ever went broke underestimating the taste of the American people.
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@Glenn Ribotsky Unfortunately, I think this is still a valid assumption. I'm a former medical librarian who got my PhD and became a professor 15 years ago in part because I wanted to do research and teach about consumers finding health information for themselves -- without the intermediary librarians who had been necessary before 1994. (They're still necessary for some people a lot of the time; main problem is a lot of people don't realize that). I teach a course every year in "digital health" which is full of digital natives under 21, often bristling with tech, who never think to ask who wrote the advice they're ingesting, or what the motives of the writer might be.
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@Glenn Ribotsky
When someone is overtaken by fear their reasoning and critical thinking skills can disappear quite quickly. My Mom, an otherwise rational and intelligent women, went overboard on Dr. Google after her breast cancer diagnosis. She believed every quack doctor and blog she could find that promised even the smallest sliver of hope.
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Ok, but what is the level of education for your students?
Patronizing essays about “Dr Google” (like this one) tend to apparently assume their readers are a homogenous mass of unsophisticated imbeciles, incapable of assessing quality of their sources.
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It's best to discuss all medical issues with doctors, but that's not always possible, so other options need to be looked into. And the suggestion to discuss with your doctor some alternative to recommended treatment is not easily done. The office visit when diagnosis and treatment plans are spelled out is intimidating and frightening. The unsettled patient is not likely to say, "Hey doc, let's try a different approach."
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@William
What about when you're in the doctor's office discussing a new drug, treatment, etc. and his/her assistant opens the door and announces "you're behind schedule, your next patient is waiting for you?"
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Time to find another doctor!
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