Welcome to OCF, Les! Im sorry you have a need for our group but dont worry, we'll do our best to help you get thru everything you're facing. As oral cancer (OC) patients/survivors and caregivers, we have been thru what you will need to get done. Its not a picnic but its doable and unfortunately necessary. Read thru posts here and also on the main OCF site to learn about your illness. An informed patient makes for a strong advocate!

As far as selecting the best treatment facility and doctor, you may need to get a few different opinions before you decide where to get treated. Just please dont take too long in deciding, you do not want the cancer to continue to grow and become harder to treat. At OCF, we have members from all over the world who have been treated at many different places. If you would ask anyone you know who had cancer whats "the best" doctor/facility, they will probably tell you it was the place they went which isnt anything to go by either. I know this is very confusing, but picking the right place and doctor is very important! Dont let distance or travel decide your medical team, theres many places to stay near the large centers for free or very little (like $5 or $10 a night they'll feed you too) even free airfare to get back and forth to treatments. With only 1 oncologist in your area, that tells me they are knowledgeable about many things but probably not an expert with any one particular cancer. Please be smart and use caution, OC is NOT something that sort of doc would see frequently, certainly not every day, month, or even year like a large top cancer treatment center would be.

The very best places to get treated would be at one of the top Comprehensive Cancer Centers (CCC's). These facilities use state of the art info, procedures, etc and have the best survival rates over the smaller local facilities who probably are NOT that familiar with OC. The CCCs use a team based approach so all the specialists are on the same page meeting at their "tumor board" meeting to create every patients individual treatment plan. Its much better to have a surgeon who does 20 similar surgeries a month than someone who might get one every couple years. OC is one of the rare cancers but dont let being rare fool you... its a horrific deadly disease that has only about a 50% survival rate for patients at the 5 year mark. CCCs also attract the brightest and most skilled physicians and use the newest equipment and facilities. Ive included links to lists of the top US facilities and the main OCF site for even more info.

As far as using a plastic surgeon goes, its definitely up to you whoever you choose but when talking about cancer you should be treated by a oncologist not someone who does cosmetic surgeries (just my opinion). Im probably the wrong one to answer this question after what Ive been thru which was way more than I ever imagined could happen to a cancer patient. Ive learned along the way far more than Ive ever wanted to know about a disease I was diagnosed with but I had never heard of. One huge life lesson I learned the hard way.... looks arent everything (even the most attractive people age and lose their good looks) when it comes down to survival vs looks, survival should be top priority. In my case it was, its been a very long hard road but looking back I wouldnt have changed a thing as with the prognosis I was given, I would not have beat the odds and survived.

Hope I havent overwhelmed you with too much info. Feel free to ask question and we will do our best to answer. As fellow OC patients and caregivers we do not have medical backgrounds so we may not always know all the intricate details or procedures but we can at least point you in the right direction. For now read, learn and absorb everything. Oh yeah, I almost forgot... eat ALL you favorite foods as much as you want, even desserts. Good luck with everything!!!


NCI list of CCCs

US News Best Hospitals List

OCF main site --- Diagnosis

OCF main site --- Treatment


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