How many patients trust what "experts" tell them

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.

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

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.

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.

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.

OKCnative 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..

MGC 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!

skidog 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. 

I did a second opinon at another large teaching hospital and received a slightly different treatment. I think that patients need to be knowledgeable and adovocate for ourselves.