Welcome to OCF, Karla! Im so sorry reading what you have already been thru. You must be overwhelmed by so much happening in such a short amount of time. Luckily you found our site to help you with info and support.
We have been where you are and fully understand what you are going thru. You arent alone in having none of the most common causes for oral cancer (OC). Roughly 10% of OC patients/survivors have no known cause. I know quite a few people in the same situation. I guess not knowing exactly what happened makes it much harder to come to terms where you can eventually move past the why and onto accepting your situation. Im not sure how I would feel if I hadnt known what happened to cause the cancer? Im kind of embarrassed to say, I smoked and since have accepted the guilt of knowing I did this to myself. Regardless of what caused it, you may never know??? You are here now and taking steps to eliminate the cancer so you are heading in the right direction. Reading and learning more about OC will help to make you a better advocate for yourself. Theres tons of first hand info in posts and also page after page of in depth OC info on the main OCF site.
Whenever you tell people about your diagnosis, you will be asked questions and often people want to help but dont quite know to do. Start a list by taking down every single person who offers to help you full contact info and tell them you will let them know when the time comes. Down the road theres a million things that may seem minor or insignificant but for someone not feeling the best all those little things can add up to be alot to manage. For example mowing the grass, raking leaves (its almost that season
), taking the dog for a walk, taking out the trash, picking up/dropping off dry cleaning, if you have young children taking them out for the day so you can rest, cooking the family a nice home-cooked dinner, taking the kids to the movies or out to the playground, helping kids with homework or a school project, doing a load of laundry, picking up prescriptions from the pharmacy, grocery shopping (or now most grocery stores will shop for you and you just pick it up), shoveling snow in the winter, etc are tasks others can do to help. You may want to consider making one person your contact person so you only need to tell one person updates and that person can be in charge of sharing whatever you want people to know. It can be overwhelming and take a great amount of energy to continually update several people instead of telling just your one contact person.
Now is the time to start eating all your favorite foods as much as you can before any treatment begins. You are likely to get to a point where your ability to eat is temporarily compromised. It always seems like if whenever someone is unable to eat, thats when the food cravings happen the most. Enjoy eating now without being concerned about calories, weight gain or if something is healthy or a nutritional nightmare. Gaining a few pounds is alright. Especially if you are average or on the slim side, you should put on a few pounds to have a little buffer in case you lose weight from treatments or run into eating difficulties which unfortunately is something almost every person going thru this does.
Its NOT easy for everyone to handle the mental aspects of having cancer. We get it and its ok to lean on us if you need to. If you are having trouble processing everything its ok, most treatment facilities have therapists trained to deal with the challenges a cancer diagnosis brings as well as tips on how to overcome worrying. For me, I found staying super busy helped to pass the time. Whenever I started thinking negatively I would allow myself a few minutes to reflect then I physically got up and "changed the channel" by going to another room and doing something positive like cleaning out the closet. This became such a habit of avoiding "going there" that by the time I began treatments all the closets in my house were cleaned and organized. I even had such an abundance of time after doing the closets that I tackled all the dressers next. Time goes by quickly if you read a book that holds your interest, pick up a new hobby, watch a movie that requires you to pay strict attention to the plot, or any number of activities that require you to focus.
If you havent already done so a second opinion at a comprehensive cancer center (CCC) would be a smart move. Just remember, surgeons cut. Thats their job so a surgeon will always say surgery is the best choice just like any other specialist will recommend their services. If for nothing else, the second opinion would help to confirm what your original team of doctors suggested. Its perfectly fine and encouraged to put your faith in your medical team. Just be smart and get another specialists input prior to getting anything done.
Im sure there are tons of other things I could add on but I dont want to overwhelm you and more than you already are. Feel free to ask questions and we will try to answer as best as we can. As a group of patients/survivors and caregivers (without years of medical education, or degrees) we may not always know the answer but we always will try our best to help you as much as possible.
