Welcome to OCF, Marjatta! Im very sorry you are going thru so much with your recent oral cancer (OC) diagnosis! Its definitely NOT an easy road!!! You are in the best place to get info and support to help you get thru whatever your future holds.

I was surprised to read your husband also had OC! Its extremely unusual having a couple both develop OC. In my 13 years since being diagnosed with OC, I havent heard of a couple where they each had OC. In the US, theres only around 53,000 patients who are newly diagnosed with OC this year. Being both a caregiver and now the OC patient is something I cant even imagine. It must be very difficult for you both.

A feeding tube is something many patients try to avoid. I did too but way back then I was very lucky to have had the wisdom of OCF members help me to understand the feeding tube is just another tool to help get me thru some very difficult days/weeks ahead. In 2007 when I was asked if I wanted to have a feeding tube I was so surprised I was given a say in something, I said no just because I was finally given a choice instead of being told what would happen. None of us liked or wanted to have the tube but it really does make getting the necessary daily nutrition so much easier. Thats the key to this whole thing... your intake!!! The better you do with taking in enough calories and hydration the easier rads will be for you. At the very least you should take in 2500 calories and 48-64 oz of water... every single day from now right thru til you hit your first year post rads (at the very least, if you can keep it up til you are 2 years post rads thats even better). Thats the bare minimums every day, if you are losing weight then your minimums will need to be higher like 3000 or 3500 calories daily. Right now before treatments begin, try your best to eat all your favorite foods desserts too. You do not want to go into this having cravings when you arent able to eat them.

Since you have other medical issues your docs may have you see a pain management doc to help you better handle your current issues and any additional problems you have once your doing rads. I would suggest talking to your doc about all the specialists you need to get set up. If your treatment center is one of the comprehensive cancer centers (CCC's are the US's top cancer treatment facilities) they use a team based approach with all specialists meeting together (at the tumor board meeting) to discuss and map out plans for each patient. You as the patient and your caregiver are also allowed to attend the tumor board meetings too so you can ask questions and learn first hand what the plans for your "case" are.

Feel free to ask questions and we will try to help as much as possible. We've been thru it ourselves or as caregivers so hopefully we will be able to help guide you. Its not an easy journey but with our help we'll try to make it easier to get thru. Hang in there!!!


PS... Great job on your signature!!! Thank you!!!





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