Welcome to OCF, Paul! You are in a great place to get info and support.
Im very sorry you are having a tough time trying to decide which path you should take. It is definitely NOT an easy task trying to figure out and weigh all the risks vs the benefits. This is where second and third opinions at the very best medical facilities you can get to comes into play. If at all possible its a good plan to go to a Comprehensive Cancer Center (CCC) for at the very least a second opinion. The team based approach where all the specialists work together in a "tumor board meeting" to create each individual treatment plan for each individual patient helps patients hear from all the doctors involved and why they recommend what they do.
Im very sorry but at OCF, we do NOT advise anyone which treatment facility would be the best one for them. Since we do not have medical degrees, years of medical schooling, years of clinical patient experience, the patients complete medical history, plus the patient is not right in front of us to ask questions to as patients at treatment facilities have. Not that any of us would be able to know whats best for any patient even if we had some or all of those things anyway. Best thing we can do is to tell people to find the very best medical care they can, get at least one other opinion from a different facility than their first opinion and go with what they think is the best fit for them to permanently eliminate the cancer. A second or third opinion should be done before
doing any sort of treatment or surgery. Doctors do NOT like picking up in the middle of another doctors treatments. Another thing to remember is surgeons cut and will almost always advise for surgery... same goes for radiation oncologists, for them its rads most need. the questions you asked our members should be taken to your own medical team and every other place you go for another opinion. Such detailed medical choices we arent able to help you with. Anything you get from members is not intended to replace the advice of your own doctor.6 Our members are great at answering most questions about OC, treatment side effects, etc and for being here to support each other. We arent so great with having the in-depth medical knowledge to interpret test results, pathology reports, reading MRI, CT, PET exam results, or second guessing what or why doctors advise the things they do. Its simply not possible without medical training to provide that kind of assistance. Just be careful if you are considering anything you find online thats different than what your doctors, or other doctors opinions have been... if it sounds too good to be true it probably is, always stop and seriously consider the source before going with advice other than that from your doctors.
. Dr Google is NOT helpful either and should be avoided. Any "remedies" you find online to "cure" your cancer should be checked by quackwatch.org to ensure it is legitimate or just another hoax from unscrupulous sites trying to take money from sick patients.
Online or thru your insurance company you should be able to find help with rating doctors, treatment facilities, etc. These places all have their own criteria they use to compare the medical professionals and facilities. On websites that accept advertising they may not be giving people an unbiased look at what doctors/facilities are the best ones. At OCF, our members are OC survivors/patients and caregiver who do NOT know enough about each facility or doctor to help anyone make any sort of decision. We are NOT medical professionals. OCF uses scientifically proven info as the backbone of our organization providing only proven methods, treatments, etc. Always remember our members feedback does NOT replace that of your doctor/team which is further explained in the OCF rules all members agree to when joining. One thing to know is wherever you go, patients/caregivers will almost always say the facility they went to "saved their life" and is "the best ever", same for their doctor. This is an opinion
based on their own experiences, not on any sort of scale to properly compare doctors/facilities. As far as seeking similar patients goes... with every single patient being different (you will hear this alot around here,) its not possible to compare patients on an equal plane. To further explain ... take a group of patients who all have the same size and kind of tumor in the exact same body location, they all are the same age, from the same area/neighborhood living there for the same amount of time (and before that all from the same area again), have the same marital status, same sex, number of children, genealogy, genetics history, profession, hobbies, same basic medical history (ex... smoked one year in college, no drug use, occasional drinker), even all are the same religion, have the same doctor and treatment facility, same allergies and blood-type.... every single person on paper appears to be identical.... they still are NOT the same!!!! This is especially noticeable when looking at how other OC patients react to surgeries and rads/chemo... they do NOT all have the same side effects, treatment issues, not even the same or bothersome long term after effects of rads. Theres about 10% of patients who sail right thru rads barely noticing any ill effects recovering quickly and continuing on with their usual lifestyle never experiencing the long term medical issues. Those lucky patients are usually the ones who do the best with their daily intake, meeting their daily minimums in calories and hydration. Each patient will respond to treatments in their own individual way, this also goes for reactions to medication, procedures, recovery, etc. Each of us is still an individual and without having a medical background or degree we are not able to fully understand just how different we are from all those who "on paper" appear the same.
Im very sorry if I provided too much info!!! Theres too much to consider when trying to make difficult medical decisions. Maybe it would help if you could read more about your illness? Ive added a link to our main OCF site where you can read anything/everything about OC. In the Understanding section you will find the more you read and learn about your illness, the stronger an advocate you will be and making your tough decisions will become easier! I know included in the OCF Understanding section theres detailed info about rads and you can find scientifically proven info which carries more weight than an opinion or recommendation of another patient without a medical background or degree. If searching online, be extra aware of the websites credibility you are reading the info on.... OCF is one of the very few medical/cancer sites with the Health on the Net badge ensuring our medical info here is up to date and correct. Theres also links to the CCC and Best US Hospitals lists so you can further evaluate your options. Feel free to ask questions, hopefully we will be able to help you with them. Best wishes with your continued recovery!!!Main OCF Site, Understanding Oral Cancer sectionNCI list of CCCsUS News Best Hospitals List@ Paul
avoid any confusion Ive merged the majority of your second post to this thread. @Kristen
..... Thank you very much for clarifying which member you were replying to!!!! Welcome and FYI to all our newer OCF members
.... When more than one member is asking questions about their own case on the same group of posts (called a thread) it can become next to impossible to determine what any new replies are for which post. A good practice to avoid confusion and to help everyone obtain the help they're looking for from our members.... only ask questions pertaining to your own case on your own thread. Posting your questions to our members for your own situation takes away from BOTH members posts, there will be dramatically fewer responses. The member who began the original post, thats who all replies should go to. Members should start a new thread if most of what you're writing is about yourself or questions about your own individual situation. This used to be so common it even earned a name around here.... "hi-jacking"
(and boy what a Admin's nightmare to correct). If anyone has further questions or if theres any confusion please take some time to read our "Posting Etiquette"
posts in the very first part of the "New Posters read this FIRST", look for the big checkmark for the "START HERE"
section. These "Posting Etiquette"
posts are important and very informative. Many hours went into creating a kind of "cheat sheet" to help our newer members to quickly and easily learn how to navigate our online patient support forum. If theres still anything not understood please send me a private message (PM).... full directions to initiate a PM are included in the "Posting Etiquette"
thread. Whenever I can make the time, I will be sending PMs with the Posting Etiquette link to our newer members. Keep an eye out for a tiny flashing envelope for new PMs, its next to your name in the upper right of any page. Thank you