How many patients trust what "experts" tell them
I am curious how many/what percentage of people follow what doctors; radiologists; chemotherapists tell them is best for their cancer; without researching it themself?
Do you think if there was something else available, other than chemotherapy or radiation that had equal effacacy; they would tell you?
Have you ever googled medical literature and found it was never mentioned to you by a doctor, as if they don't keep up with the latest discoveries?
Did you ever take your car in for service; and they tell you that they can fix your misfire, but several other things on the car will not work the same afterwarfds, or at all?
Comments
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Pretty much all the regulars
Pretty much all the regulars posting here are still doing so because they did listen to their experts. It beats a lingering agonizing death caused by ignorance and stupidity. You have not and will not find a miraculous alternative to conventional cancer treatment. If you actually have cancer every day that you delay treatment allows the malignant cells to further multiply, increasing the chance that you will successfully develop a truly fatal disease. That money obscessed science that you reject is now rather successful at treating and curing many of the diverse forms of the disease if it is caught in the early stages. They know this thru the empirical method, which drives the highly successful scientific process. You, not so much.
But feel free to treat yours with ground apricot pits, or marijuana, or liquified Kale, or Chinese Sichuan cooking. In the sake of efficiency, rather than reading self-reenforcing dillusional literature I suggest you start consulting with your local hospice services. You'll need them eventually anyway.
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Here is person with ideas not yet ventured
npoe,
Believe me, I get rather wordy on the H&N forum, but I never understand the need to support or defend a position such as yours by bringing other cancer patients down to your level. This forum does not claim to have ALL the CORRECT answers for treating H&N cancers successfully. Many times we have no good answers to the questions as presented by our members and their questions may go unanswered by the H&N forum.
I imagine that many members do trust their doctors to make decisions for them without researching everything themselves. I can’t imagine it working any other w ay. Cancer treatment and trust go hand-in-hand on this site. How anal do you want to become? Is my radiation too much or too little, is my magic mouth wash the correct formula, should I get a PEG or not? We, the sincere H&N members know about these questions and many others.
For some members their history almost demands a 2nd and a 3rd opinion. That is why we say to get a 2nd and a 3rd opinion. Not all radiation oncologists, chemotherapy oncologists, ENT’s ,etc. Are created equal, some are (just) better than others.
You are a funny bird, sent here to infiltrate our ranks and cause discomfort. Now you just flyaway home or fall into a more productive and honest dialog and learn what the H&N forum is all about.
Now it is time for Matt’s lunch. I wonder what wbcgaruss (Russell) has gotten himself into today.
Matt
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Why are you Here
So far you have asked questions and stated things that make me wonder what your motives are. You seem to intimate that you are a researcher or maybe a cancer patient but then again have not stated your position or situation with any facts or statements. If you are really here to research or for help feel free, to be honest, and state your position for in my opinion this is the most giving, sharing, group of folks around you will find anywhere and are happy to help. Till then you will probably remain an enigma at best. And hey Matt I learned my lesson I'm keeping my nose clean and a low profile-wbcgaruss
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Experts
Most Experts are Experts for a reason. Multiple opinions and home research is a must during and prior to treatment. I have a few gallons of snake oil to sell if you are interested?
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I'll bite. But I'm not going
I'll bite. But I'm not going to assume you are just promoting "alternative medicine" (aka, quackery).
In general, "no", I do not blindly think that just because you've earned the title of "Doctor" that you are the end all, know all for what is best for me or anyone else. A "doctor" is certainly highly educated and has more experience, but that doesn't make them always right.
I've posted many times that I choose to listen to my doctor's advice, but to then take control of my medical care and go a (slightly) different route.
When my primary care doctor was unconcerned about my enlarged neck node (because I don't drink or smoke and had just had minor cosmetic surgery on my chin and neck), I insisted on being referred to a specialist (thank God). However, that specialist wanted to do a neck dissection and robotic surgery on my tongue - so, I fired him and went to the local cancer center. The cancer center wanted to start treatment only a couple of days after my tongue biopsy - I said "no" and insisted on waiting 10 days for the biopsy site to heal. Doctors insisted on a PEG tube and chemo port - again, I said "thanks, but no thanks." Doctors told me to stay home and rest during treatment, but I insisted on working most of the time. Doctors wanted to put me on several powerful opioids, but I instead relied on illegally obtaining and using recreational grade THC. Oncologist told me after my first post-treatment PET scan that "This is very bad, your lungs are full of disease, the cancer has spread to your heart and lungs" - that turned out to be 100% false. My wife's primary care doc had no idea how long HPV lies dormant and literally told my wife that my diagnosis must mean I cheated on her since we've been married for 19 years. As most of us know here, that's completely false and, like my oncologist told my wife, I probably contracted HPV in my teenage years.
Most recently, my oncologist wants yet another PET scan, I've decided not to go that route and will instead just go forward with routine CT Scans every few months.
These are just the examples that come to mind off the top of my head. I don't regret a single time I told my doctors "thank you, but I'm going to do something different." That said, I did my research and knew chemo and radiation were my best bet. I had tons of people recommending all kinds of bizarre treatments. But I knew the science has proven that traditional treatment has resulted in cure rates over 80%.
That said, there are many routes within traditional treatment and each patient is different in what works best for them. As for me, I am very glad with each decision I made that differed from what my doctors recommended. Less than a year later I am back to 100% pre-diagnosis.0 -
good for you OKCnativeOKCnative said:I'll bite. But I'm not going
I'll bite. But I'm not going to assume you are just promoting "alternative medicine" (aka, quackery).
In general, "no", I do not blindly think that just because you've earned the title of "Doctor" that you are the end all, know all for what is best for me or anyone else. A "doctor" is certainly highly educated and has more experience, but that doesn't make them always right.
I've posted many times that I choose to listen to my doctor's advice, but to then take control of my medical care and go a (slightly) different route.
When my primary care doctor was unconcerned about my enlarged neck node (because I don't drink or smoke and had just had minor cosmetic surgery on my chin and neck), I insisted on being referred to a specialist (thank God). However, that specialist wanted to do a neck dissection and robotic surgery on my tongue - so, I fired him and went to the local cancer center. The cancer center wanted to start treatment only a couple of days after my tongue biopsy - I said "no" and insisted on waiting 10 days for the biopsy site to heal. Doctors insisted on a PEG tube and chemo port - again, I said "thanks, but no thanks." Doctors told me to stay home and rest during treatment, but I insisted on working most of the time. Doctors wanted to put me on several powerful opioids, but I instead relied on illegally obtaining and using recreational grade THC. Oncologist told me after my first post-treatment PET scan that "This is very bad, your lungs are full of disease, the cancer has spread to your heart and lungs" - that turned out to be 100% false. My wife's primary care doc had no idea how long HPV lies dormant and literally told my wife that my diagnosis must mean I cheated on her since we've been married for 19 years. As most of us know here, that's completely false and, like my oncologist told my wife, I probably contracted HPV in my teenage years.
Most recently, my oncologist wants yet another PET scan, I've decided not to go that route and will instead just go forward with routine CT Scans every few months.
These are just the examples that come to mind off the top of my head. I don't regret a single time I told my doctors "thank you, but I'm going to do something different." That said, I did my research and knew chemo and radiation were my best bet. I had tons of people recommending all kinds of bizarre treatments. But I knew the science has proven that traditional treatment has resulted in cure rates over 80%.
That said, there are many routes within traditional treatment and each patient is different in what works best for them. As for me, I am very glad with each decision I made that differed from what my doctors recommended. Less than a year later I am back to 100% pre-diagnosis.Glad you decided against the PET scan. I'm 10 days out from proton rads treatment for Tonsil and Lymph node (right side only) and I agree. Mayo wants to do a PET at 3 months...and I'm not sure that makes any sense based on what I have heard and read....lots of false reads from these PET's.
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Turpentine and Porcupine Saliva For Anal Itch..Suggested to me..AnotherSurvivor said:Pretty much all the regulars
Pretty much all the regulars posting here are still doing so because they did listen to their experts. It beats a lingering agonizing death caused by ignorance and stupidity. You have not and will not find a miraculous alternative to conventional cancer treatment. If you actually have cancer every day that you delay treatment allows the malignant cells to further multiply, increasing the chance that you will successfully develop a truly fatal disease. That money obscessed science that you reject is now rather successful at treating and curing many of the diverse forms of the disease if it is caught in the early stages. They know this thru the empirical method, which drives the highly successful scientific process. You, not so much.
But feel free to treat yours with ground apricot pits, or marijuana, or liquified Kale, or Chinese Sichuan cooking. In the sake of efficiency, rather than reading self-reenforcing dillusional literature I suggest you start consulting with your local hospice services. You'll need them eventually anyway.
Dr. Google Stay away from...Listen to your Doc only..not even the nurses. Had bad advice from them now.
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Increasing lack of trust?
Seems like this sort of post is seen more often than before. Maybe it's related to the general state of our society and not knowing who or what to believe anymore.
With respect to advice/recommendations offered by board certified doctors. If you don't trust your doctor/team, go find another. Your life depends on what happens so it is essential you believe your team is doing all they can to do the best for you. Others have sought second opinions and go do that until you find the right team.
I was fortunate to have total trust in my doctors and zero trust in myself about the science and treatment of this disease. Putting this bluntly, if you think you know more than your doctors you are dillusional. I did learn here about facilities using tumor board to collectively review your case. I asked to attend my review and recollect vividly sitting down and looking around a room full of doctors all intently focused on my case. I remember repeating to myself how awesome it was to have over two hundreds years of medical expertise and knowledge all wanting to offer their best opinions and anaysis.
Any cancer patient that thinks they know better is sadly mistaken. Now, different facilities have their preferred methods. Some have tendencies to recommend surgery, chemo, and radiation differently which is fine as these are proven approaches to kill cancer. Any treatment plan not including at least one of these from your doctor, even if you trust it, go get another opinion. So trust alone is not the sole criteria.
A proven treatment plan from a trusted team is the winning formula, simple as that. well a few more details, you get the point.
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I'm with all of the above experts
Dr Google was REALLY bad, I could have died of shock with some of the cr** I read.
The ONLY thing I read on the internet that I trusted (well the first thing) was who to go and see. I researched the hell out of Drs near me and chose mine over all other options.
The second thing I trusted? The people here - fellow travelers on this road, people who have been there before, whose knowing footsteps I followed.
Given the choice - I'd skip Dr Google and save myself the grief.
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We all wish there were better
We all wish there were better alternative treatments for this dreaded disease. I researched all my husband options and alternative treatment, we both came to the same conclusion, to eliminating any part of his treatment recomended by his doctors, was just to risky. I can honestly say we left no stone unturned and move forward with no regrets.
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WowOKCnative said:I'll bite. But I'm not going
I'll bite. But I'm not going to assume you are just promoting "alternative medicine" (aka, quackery).
In general, "no", I do not blindly think that just because you've earned the title of "Doctor" that you are the end all, know all for what is best for me or anyone else. A "doctor" is certainly highly educated and has more experience, but that doesn't make them always right.
I've posted many times that I choose to listen to my doctor's advice, but to then take control of my medical care and go a (slightly) different route.
When my primary care doctor was unconcerned about my enlarged neck node (because I don't drink or smoke and had just had minor cosmetic surgery on my chin and neck), I insisted on being referred to a specialist (thank God). However, that specialist wanted to do a neck dissection and robotic surgery on my tongue - so, I fired him and went to the local cancer center. The cancer center wanted to start treatment only a couple of days after my tongue biopsy - I said "no" and insisted on waiting 10 days for the biopsy site to heal. Doctors insisted on a PEG tube and chemo port - again, I said "thanks, but no thanks." Doctors told me to stay home and rest during treatment, but I insisted on working most of the time. Doctors wanted to put me on several powerful opioids, but I instead relied on illegally obtaining and using recreational grade THC. Oncologist told me after my first post-treatment PET scan that "This is very bad, your lungs are full of disease, the cancer has spread to your heart and lungs" - that turned out to be 100% false. My wife's primary care doc had no idea how long HPV lies dormant and literally told my wife that my diagnosis must mean I cheated on her since we've been married for 19 years. As most of us know here, that's completely false and, like my oncologist told my wife, I probably contracted HPV in my teenage years.
Most recently, my oncologist wants yet another PET scan, I've decided not to go that route and will instead just go forward with routine CT Scans every few months.
These are just the examples that come to mind off the top of my head. I don't regret a single time I told my doctors "thank you, but I'm going to do something different." That said, I did my research and knew chemo and radiation were my best bet. I had tons of people recommending all kinds of bizarre treatments. But I knew the science has proven that traditional treatment has resulted in cure rates over 80%.
That said, there are many routes within traditional treatment and each patient is different in what works best for them. As for me, I am very glad with each decision I made that differed from what my doctors recommended. Less than a year later I am back to 100% pre-diagnosis.Just Unreal your doctor care.
The most important thing i have learned on these boards in 8 years is how much quackery is going on out there. Its just insane. Doctors chop and cut before they even know what the heck is really going on..
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I totally agree. More fundingMGC said:Doctors
The thing I hate the most is driving 430 miles to my Doctor. The alternative is having care the likes of what I have seen here. its just scarry. If you have cancer you need to get to a large cancer center
I totally agree. More funding for more clinics to help people closer to home is what we need! . I was a bit more fortunate, my cancer center was only a 3 hr drive away..but I do live on an island. I have to say, my treatment center is so incredibly top notch, i would drive forever to get to them. I am honoured to of had the privilege of meeting so many incredibly compassionate people. Made my journey do-able. I would not be here without them. My unsung heros!
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Everyone has a different
Everyone has a different perspective of what might work for them. Where I live, radiation and chemo are the first line of treatment. Surgery if that doesn't work. I have a friend in another part of the country that surgery was first, it worked for her. As my treatment did for me..
you just have to be comfortable, have some trust, and a bit of? ( faith, hope, tenacity) whatever it takes to get you thru..i think a lot of family/friend support goes a long way too. Didnt realize it at the time, but looking back. ...
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False PET only after Recoveryskidog said:good for you OKCnative
Glad you decided against the PET scan. I'm 10 days out from proton rads treatment for Tonsil and Lymph node (right side only) and I agree. Mayo wants to do a PET at 3 months...and I'm not sure that makes any sense based on what I have heard and read....lots of false reads from these PET's.
Hello Skidog,
I'm just curious if the PET SCAN can be false positive when first finding out you have a tumor? My doctor told me when I had my Biopsy that he has seen some readings where it say they have cancer and it's ends up not being cancer and sometimes they can tell you you don't have it and later it shows up. Just curious. In the beginning I was convinced I had an infection almost for sure. My tong somehow had bumps and some discoloration and swelling up to the point if I just talk I would bite my tung. This lasted for about three weeks. One side healed and then the other side same thing. I was experiencing pain from one of my lower teeth that when I flossed it felt like I had a sharp knife slicing my nerves. My dentist took x-rays and asid no cavities. That news shocked me considering every time I get x-rays I almost always have a cavity or two. Three years prior I had an infection in my mouth that infected 2 teeth which eventually were beyond root canals. This happen again about one year later and another 2 teeth gone. So right now I'm a little worried about if there is something else that they can't see or if I have treatment will I also loose theeth.
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Donfoodonfoo said:Increasing lack of trust?
Seems like this sort of post is seen more often than before. Maybe it's related to the general state of our society and not knowing who or what to believe anymore.
With respect to advice/recommendations offered by board certified doctors. If you don't trust your doctor/team, go find another. Your life depends on what happens so it is essential you believe your team is doing all they can to do the best for you. Others have sought second opinions and go do that until you find the right team.
I was fortunate to have total trust in my doctors and zero trust in myself about the science and treatment of this disease. Putting this bluntly, if you think you know more than your doctors you are dillusional. I did learn here about facilities using tumor board to collectively review your case. I asked to attend my review and recollect vividly sitting down and looking around a room full of doctors all intently focused on my case. I remember repeating to myself how awesome it was to have over two hundreds years of medical expertise and knowledge all wanting to offer their best opinions and anaysis.
Any cancer patient that thinks they know better is sadly mistaken. Now, different facilities have their preferred methods. Some have tendencies to recommend surgery, chemo, and radiation differently which is fine as these are proven approaches to kill cancer. Any treatment plan not including at least one of these from your doctor, even if you trust it, go get another opinion. So trust alone is not the sole criteria.
A proven treatment plan from a trusted team is the winning formula, simple as that. well a few more details, you get the point.
what do you do if you get overwhelmed by DX & pushed so fast to respond? I now know I should have put the brakes on and gotton a second opinion by a bigger clinic. I still feel they over did it for what they DX but at the time knew nothing & only learned things as soon as I found this site. Than ressearched as each new ailment from treatment occurred & searched out other Drs opinions. Thankfully My ENT was kind & answered questions that I wish We would have discussed before treatment I trusted Drs tho given very little info & occasional snide comments from My a Rad Oncologist. But to be this sick for 3 yrs since finishing treatments, now having to go to Mayo in Jacksonvill, Fla for help, makes Me question Drs where I live. All I hear is your fine, or take this prescription med tho I usually feel worse from the side effects, or brings on more problems. Tho I’ve tried to accept & stay positive, waking up each day after 4 - 5 hrs of sleep, facing another day of No saliva, can’t eat ( I see feeding tube again in My future) I get very frustrated. Ok very lucky No recurrence in 3 yrs, but I know you can’t kill Cancer it can come back as the original or a new version, you manage it like any disease without a cure, and just keep plugging along. My best recommendation is always get 2-3rd opinions & go to larger, more team orientated Center. Depending on just 2 Onocologists is not enough, you need a team approach. I only had a small spot on left tonsil skin, no lymph involvement, no tongue but Pet thought there was, not There in follow up CTs. Never seen in scopes. One tiny spot, HPV 16+, every patient is different & what they can tolerate, should be reviewed that way & you do have a right to say No.
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