Welcome to OCF, Kathy! You are in the very best place to get info and support. We have all been where you are and understand all too well the shocked deer in the headlights feeling.
Im not sure if I am reading this correctly? You were told you are Stage 1 by which doctor? Im pretty sure you are talking about the second ENT. If so, is the ENT someone who specializes in treating oral cancer patients? It sounds like they are as I took it to mean they are affiliated with the teaching hospital. A teaching hospital could be a Comprehensive Cancer Center (CCC). The CCCs are the best of the best in the US and have been scientifically proven to have the best results with cancer patients. Thats definitely where you will want to be if at all possible when you start talking about surgeries or your treatment plan. At a CCC they use a team based approach so all the specialists are working together to create an individual treatment plan at whats called a tumor board meeting. It sounds like the person who gave you the diagnosis may not be part of the teaching hospital if they just scheduled surgery without consulting other doctors. I'll explain more in a bit.
As far as the nurse friend, it really isnt something thats a necessity. Having them around will help give you moral support and hopefully help with asking the right questions of the right doctor. We can always use all the support we can get. Some of the bigger hospitals and CCCs have started using nurse navigators who get assigned patients and they walk them thru every single step from diagnosis thru a successful recovery. Now that would be a huge help!!! Im sure the person you mentioned was a great asset for your mother's care but unfortunately most medical personnel (unless we are talking about those who specifically treat oral cancer patients themselves) are not that familiar with oral cancer. Its not one of the major cancers where doctors constantly see patients. For example all doctors and nurses know about breast, testicular, lung and skin cancer. Oral cancer is NOT like other cancers! It cant be hidden with clothing or makeup and chemo alone will not eliminate it. OC negatively affects vital parts that in turn affect a patients everyday life. OC can give patients serious long lasting issues with eating, drinking, speaking, etc. For 2018 the US will see roughly 52,000 new oral cancer patients. Thats not alot considering its for the entire US. Even many regular dentists have never been involved with treating an oral cancer (OC) patient. For something thats so specific you may want to save that extra step and start by calling around for a second opinion.
Any reputable doctor will have no problem with their patient seeking a second opinion, they will encourage it to make sure their patient gets the very best medical care. I hope you can easily obtain copies of the biopsy results and any other office notes on file. Thats an important part of having another qualified doctor review your case. Im always a bit leery of any doctor who rushes the patient into surgery without giving them time to get another opinion. It sounds like you have already scheduled your surgery. Just remember.... surgeons cut and will always advise a patient to have surgery. Once its been removed, it can never be fully restored to exactly its original function and whats removed can never be put back.
I dont know if this is something that you will need but Im including it just in case. If you end up traveling for another opinion or treatment, there are free or very inexpensive ($10/night) places to stay near most of the CCCs. Hope lodge is one of the most common ones. There are even airlines that provide free seats for cancer patients who are traveling for their health. I dont know about availability but Id suspect these things would be in great demand. The link is below for that as well.
When people first hear of your illness dont be surprised when they offer all sorts of advice. Too often its second or third hand info which isnt relevant to your exact situation. It usually has things that someone learned from their "Great Aunt Sally" who had a neighbor that had a daughter with xyz cancer in 1999 and got thru it just fine because they rubbed apples on their armpits. Yes, that was meant to be funny!
But seriously, take the unsolicited advice with a grain of salt. Most people really are good hearted and do want to help when someone they know has cancer. When you talk to friends and relatives about your cancer, dont be surprised if they offer their help. Start making a list, take down their name and contact info then tell them when the times comes you will let them know what they can do to help. Theres a million little things that can make a difference for you when you arent feeling the best. Things like walking the dog, mowing the lawn, picking up prescriptions from the pharmacy, cleaning the cat litter, doing a load of laundry are all small things that can mean alot to someone who may not feel quite like their normal self. At this point it sounds to me like may you still have a ways to go before you have a complete treatment plan. Once you have seen all the right doctors, your treatment plan will be made and then a flurry of appointments will keep you on your toes. Im mentioning making a list of helpers so you will already have this completed by the time you go for surgery or start treatments. Its something positive you can do. It also helps to keep you busy so you dont focus on the "what if" way of thinking too much.
At some point everyone will need help. Unfortunately many patients do not like to ask anyone for help. I was overly independent when I was diagnosed in 2007. It took me a while for it to sink in and even longer to fully grasp the importance of having people to help get me thru everything. Without having a caregiver I suffered so much more than I should have. If you have someone to help you and be your caregiver you will need them at some point. Nobody gets thru this alone, we're here to lean on as much as you want.
Your mouth may be a little tender from the biopsies but do your best to start having all your favorite foods, desserts too. Dont concern yourself with calories and if you are on the slim side you should gain a few pounds. Most OC patients lose weight at some point during their treatment. Doctors prefer their patients to not lose a single pound, even for those who are overweight. When a patient has cancer, their body will burn up calories at a greatly increased rate. Patients going thru treatments or in the recovery phase will need to pay careful attention to what they take in. Every single day OC patients should strive to take in at least 2500 calories and 48-64 oz of water. It sounds like alot but its not! This is vitally important for those OC patients that will have radiation treatments. No matter what your treatment plan will be, Im pretty sure it will impact your ability to eat, drink, chew and swallow. For almost all patients that is only a temporary annoyance. I advise you to eat everything now so you dont go into this carrying any cravings.
Ive included several links below to help you learn more about your illness and just in case you need to find a second or third opinion hospital. There are many different topics available to read thru on our main OCF site. By learning more about your cancer it will help to make you a strong advocate for yourself.
Hopefully I havent overwhelmed you too much by overloading you with too much info. I know theres so much to learn! Feel free to ask any questions you have and we will do our best to get you the correct, up to date answers to everything. Remember, you found OCF. You are no longer alone or isolated in this. We are in your corner now, rooting for you. Hang in there!!!
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