Welcome to OCF, Kathy! Im very sorry you have been recently diagnosed with oral cancer (OC). I know your head must be spinning after just being diagnosed. You are in the right place for help to get moral support and info to make everything you are facing much easier.

When first diagnosis, it can feel like a ton of bricks was dumped on you. Soooo many questions, then come the ".... what if's???" which causes patients so much unneeded stress. Running around from appointment to appointment can make your head spin from info overload. Being diagnosed can bring many other difficult worries as well. Many patients and their caregivers need help from a therapist and/or need anxiety meds to help get thru everything. For most its a temporary tool to help make everything easier. When I first was diagnosed, I was fortunate to have discovered this site. I quickly learned lots of important things about OC. I suggest reading both here and one the main OCF site. An informed patient makes for a strong advocate. Ive added helpful links below. By reading thru forum posts you will see thru first hand posts what some other OC patients go thru. Just remember, everybodys different and we all respond to treatments, medications, etc in our own unique way. Learning about OC and learning about it helps to make you a better advocate for yourself.

Finding the best medical team or the best medical care you can isnt always easy. A second opinion (at a different facility) is a good idea, especially before surgeries. If at all possible going to a comprehensive cancer center (CCC) would be a great choice for your treatments. At CCCs, they use a team based approach so all doctors are working together, they should be the most experienced in treating (OC). All the specialists get together at whats called the tumor board meeting (patients as well as their caregivers can attend too) to discuss each individual case creating a treatment plan together. Having all specialists on the same page makes for much better open communication with all the doctors who are treating each patient. CCCs also attract the brightest and most skilled physicians, they use the newest equipment and facilities.

The best thing you can is to focus on what is within your control.... your intake. Every single day from now thru at the very least she hits her first year after finishing whatever treatment she has she will need to take in a minimum of 2500 calories and 48-64 oz of water. The better you do with your daily minimums, the easier this will be.

Most people are good hearted and truly want to help when someone they know gets a cancer diagnosis. Often they simply do not know what to do. When people offer their assistance, take down their name and contact info, make a list. Down the road having people that can help will be a huge relief. Theres a million little things that to someone going thru cancer treatments are a big deal and will make this easier.

Good luck with everything!!!

Main OCF Site... Understanding section

NCI list of CCCs

US News Best Hospitals List


Christine
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 smile