Welcome to OCF, Keilani!
Im sorry to read you are going thru this terrible disease with your mother. Children that are their parents caregiver have a difficult job! My son helped me go thru it and even as an adult almost 15 years later, he still gets a little nervous walking thru a hospital hearing all the patients alarms beeping. Definitely NOT an easy task!!! Your mom is lucky to have you on her side. Make certain no matter how hectic it becomes, make sure to take time to walk away, clear your head, time thats devoted just for you.
Best thing you can do is to read, both thru posts here and on the main OCF pages. OCF is one of the very few medical type support public message groups thats not only monitored to ensure correct, up to date info is given, OCF members are anonymous which encourages more open communication. By educating yourself more about oral cancer you will become a better, more knowledgeable caregiver who can advocate for your mother when necessary. Im very glad you found OCF and posted.... we will help you and your mom as much as we can. Unfortunately, sometimes we can only answer so many things and refer members to their medical team to get further clarification. We try but please remember, were just like you... our members are just regular people without years of medical school, hands on clinical experience and training, etc. Our info is first handed.. What I mean by that is its obtained by either going thru it as the patient or being a patients caregiver.
If your mother has not yet gone for a second opinion, that would be a very good place to start. The top Comprehensive Cancer Centers (CCC's) are the preferred treatment centers for many who are lucky enough to have one nearby or can "commute" across country. The CCCs have the best of the best, top physicians who use a team based approach in state of the arts centers using the latest and most effective techniques and treatments. All the specialists meet together to discuss each case at whats called a tumor board. The patient is able to attend and ask questions there as well so it really can be a very important meeting usually treatment plans are addressed at one of the first meetings. If you would like the list of CCCs I can do a search or you and any other members can make use of the search function up near the top right of any page.
I have several important tips to help you and your mom...One of the biggest things I can pass along is to get your mother to eat and drink (water!!!). She may not feel like it but her sense of taste and ability to chew and swallow will probably be affected at some point making eating nearly impossible. If your mother is on the average or slim side she should try her best to put on a few extra pounds. Fighting cancer takes more out of you than people imagine!!! Getting thru treatments and recovery is NOT the time for weight loss but unfortunately almost every patient struggles with this and ends up suffering much more than if they took in at the very least 2500 calories every single day. Since your mothers treatments are likely to include surgery, radiation and possibly chemo as well those things require lots of extra calories plus your moms body is fighting the cancer and trying to rebuild the damage it creates. Especially important is eating all her favorite foods now, having seconds and desserts as well to hopefully build her up before beginning any treatment or surgery. Now is the time to eat and drink everything, all your moms favorites without concern about calories, weight, or worry too much about balanced nutrition... if your mom likes it then she should eat it. No way would anyone want to start out doing rads having cravings and then they're not physically able to eat the favorites. Plus most will temporarily have a very different experience when foods lose their flavor and taste burnt, like cardboard or nothing at all. Without somethings regular flavor that makes it very hard to eat too. She should drink a minimum of 64 oz of water every single day.... this is vitally important for those getting rads with or without chemo!!!
Another item to add to the every growing long list.... the dentist! Your mom should get a thorough check up at the dentist and if radiation is in your moms future then she should have fluoride trays made to protect her teeth. Any dental extractions needs to be done prior to treatment and waiting about 4-6 weeks afterwards to have her mouth heal before the cancer is treated. I know this can be overwhelming and seem like its impossible. Many patients and quite a few caregivers need help to get thru everything. Suddenly, out of the blue, a cancer diagnosis brings people to face their (or their loved one if a caregiver) own mortality which can be quite shocking to most. There is nothing to be ashamed of or embarrassed by if you, your mom or anyone else thats close needs therapy and meds to help with the anxiety and overwhelming worries. As with everything here.... sooner is better than later so if you think you and/or your mom needs that type of help ask her to ask at the treatment center, her docs or nurses and get that going asap. Sorry about giving so much info!!! Thats just the tip of the iceberg too... OC is quite a life changing experience that will surprise you with the positives that can come along with the diagnosis. Do your best to see everything in a positive way, the therapist if used would be a huge resource for this!!! The best thing I can share is to avoid focusing on negatives by limiting the time spent on things out of yoru control.... those what ifs will get you down every time so when you start thinking along those lines give yourself only a few minutes before you "change the channel". What I mean by that is to physically get up, walk away from whatever you were doing when the what ifs started and go do something positive. Once I learned this trick I felt so much better about my situation and was able to accomplish incredible amount of household chores Id put off. Instead of the what if worrying, Id go clean out closets, when I ran out of closets I had to find something else positive to keep me busy so I moved onto rearranging dresser drawers, going thru all the clothes me and my children hadn't worn for a while and donated them, rearranging the pantry, all my kitchen drawers and shelves. I even organized the garage and outdoor sheds. I wasnt the best at changing the channel so I needed varying tasks to hold my attention and focus on only the positives which meant I would read complex books with great plots, watching mystery movies that make you pay close attention, played wii with my teenagers and did alot more family activities too. I really hope I havent overwhelmed you with overloading you with alot of things the docs and nurses dont go into or if they do its briefly with how much they legally must tell everyone.
Hang in there!!!! You can lean on us, we completely understand what you and your mom are going thru and we can help make it a little easier.
PS... Its best when starting out as a new member to begin your own thread for your own specific topics. This particular thread is almost 2 years old. The original posting member hasn't been on here for many months so its highly unlikely you will receive an update or even though the odds are slim if an update reply is posted, comparing patients to each other never is an accurate comparison. Every single person is their own unique individual with exposure to a million different things in their lifetime, its not possible even if on paper the patients appear alike.... they arent! No two tumors are exactly alike, they could be anywhere in a persons head or neck areas with size, shape, and even different types of cancer impacting every single thing. Patients never will be the same age, sex, live in the same area, work the same type of job, have the same family history including exact number of children, family history going back decades exactly like another patient and thats just to name only a very few of the hundreds of things that will impact affect any cancer patient, how they adapt, recover, have a recurrence (hopefully not!!!). Hopefully you can better understand just how much of an individual each of us are. For now, I will leave your post here on the slim chance the person you asked questions to would reply. After a week or 2, I'll move it to its on its own thread to avoid confusion and it wont take away from whats already been written or confuse anyone reading 2 different members questions, replies etc as that can easily confuse our newer members.
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive