Welcome to OCF, Noel! You are no longer lost!!! We have been where you are and completely understand what you are facing and will help as much as possible. Im sorry you have a need for our assistance! Getting a SCC diagnosis can be a terrifying time full of unknowns that can easily become overwhelming. Dont worry, you're in the very best place to connect with oral cancer (OC) patients/survivors and caregivers who have been down the same path. We're able to provide you with important, honest and correct medical info along with the support everyone needs when facing cancer.
One of the very first things you will learn about OC (it actually applies to all medical conditions), is that everybodys different!
. No matter how much patients appear on paper to be similar, no two patients will ever be exactly the same due to soooo many variables... its impossible. What one patient struggles with may barely affect another patient even when the two patients seems to be very similar. Every patient will respond to medications, treatments, procedures, recovery, etc in their own unique way. So many variables within a rare type of cancer diagnosis makes it difficult to compare or predict what could happen.
If you havent yet gotten a second opinion, you may want to consider getting one prior to starting any type of treatment. Always remember, surgeons cut and when something is removed it can never be returned to 100% functionality. Surgeons recommend surgery and radiation oncologists advise rads. All the info newly diagnosed patients are learning can be overwhelming!!! Back when I was first diagnosed I had no idea there was such a thing as oral cancer or someone could end up having cancer in their mouth, Id only heard about the most common cancers like lung, prostrate, ovarian, pancreas, etc. All this was shocking to me who had never had anyone with cancer in my family or known anything or anyone who had it. Sorry for getting off track, I t3end to do that and I dont mean to intentionally be confusing. In the US, comprehensive cancer centers (CCC's) are the top cancer facilities where the best of the best work with a team based approach with the newest proven techniques, medicines, etc. This is not to be confused with some lesser strictly for profit facilities which include the words "cancer center"' in their name but they pick and choose which patients that fit their own criteria only taking patients with certain types of cancer if they are easily cured. Another option is very important and might be easiest to get done thru the internet. Some CCCs patients can send their medical records to receive their opinion thru email which works great for patients who live a great distance from the CCC. Theres assistance with flights/transportation, lodging, financial aid and many other things but if you dont speak up to be your own advocate or have your caregiver do it then you will not automatically get info on all available options. Please dont let location be the deciding factor for your fate!!!
Right now, take it day by day. Every single day make it a goal to stay busy doing positive things, eat as much as possible especially if you are average or slim sized, and line up some helpers. Unfortunately not everyone is able to deal with facing close friends and/or relatives cancer diagnosis and head for the hills, but others less close to you will surprisingly step up to the plate and become the support every cancer patient needs. If you dont already have someone to help you, its necessary to select someone to be your caregiver. Everyone needs help and its not easy for some people to accept it but it is a necessity. I cant stress enough just how vitally important intake is!!! Make sure you eat all your favorite foods and have dessert too. Almost every oral cancer patient has their ability to eat, taste, swallow, etc temporarily compromised when they have oral cancer. For most its just temporary and a major annoyance! At the very least OC patients need 2500 calories and 48-64 oz of water every single day for at least a year, possibly 2 years as many who have complex cases have long recoveries where extra nutrition is necessary to heal. I'll go into more detail another time, as you read thru posts you will see I can be quite a nag about intake. After being hospitalized a few times for malnutrition and dehydration where I was so sick and debilitated I could barely walk by myself, talk or let alone have the mental stamina to carry on a conversation. I felt soooo horrible that I thought i was in the beginning stages of dying! Thankfully I was not dying!!! I was dehydrated and malnourished which led to my feeling so bad. I hate to see anyone else on that same path so I try to prevent other OC patients from experiencing it by nagging about intake.
At this time along with eating and drinking all your favorites, make a list of contact info for everyone who offers their assistance to you when they learn of your OC diagnosis. You may want to select one person to be who keeps everyone informed of your progress. Be prepared to hear a million stories and advice from people who have no idea about what they're telling you. Everyone suddenly becomes an authority and just has to share it with the cancer patient and/or their caregiver. Theres tons of fake cures quack doctors promote from 3rd world countries backwoods secret clinics. They sure can sound convincing as they recant their stories of their neighbors brother who 5 years ago worked with someone whose mothers lawn maintenance person had cancer in 1996 and took XYZ every day and POOF! their cancer was magically cured and today they are in perfect health and enjoying their new life after winning the lottery for the 3rd time. Kinda extreme but Im sure you get the point
Im sending you a private message (PM) so watch for the tiny blinking envelope next to your name near the upper right of any page and click on it. That PM will include a link you need to click on to get something written for new members who are beginners with the most commonly needed assistance to make navigating the forum easier. Theres also tons of valuable info on the main OCF pages as well. Its a different set up there, without having the individual input of other members who can answer your questions. On the main OCF site, you will see many articles and excerpts from vetted medical resources so rest assured OCF ONLY provides correct, up to date medical info from verifiable science based resources. Monitoring is one very important major difference that sets OCF apart, our site is one of very few sites that does internal monitoring plus has several other behind the scenes individuals and organizations overseeing our forum and main site. Health on the Net has awarded their coveted badge which is assuring OCF always follows their strict guidelines with ONLY giving factual science based info and operates above and beyond other websites.
Any questions, please feel free to ask and we will try our best to help. Below are several links you should find helpful. Hang in there!!! Now you have us to help get you thru whatever path your cancer takes you on. Its ok to lean on us for help, we completely understand what you are going thru and will assist you as much as possible... you're part of our online family now NCI list of CCCsUS News Best Hospitals ListMain OCF Site, Understanding Oral CancerMain OCF Site, Financial help for OC patients including flights, lodging, etc