Hi Susie! I cant believe I missed your post yesterday, Im very sorry!!! Im also very sorry to read about what your BF will be going thru. Im sure you both are quite shocked. Unfortunately, there are many others who have no known cause for their OC. My guess is about 5-8% of OC cases have their cause as unknown. Regardless of why he became sick, he needs to get it taken care of so he can go on to live a long, happy and healthy life.

Has your BF gotten a second opinion? Just asking since surgeons always recommend surgery, radiation docs say rads is the way to go, etc. Once its taken out there is no putting it back. Of course thats what you want with cancer to eliminate it as soon as possible. But at the same time, you also want it done right the first time. At a comprehensive cancer center (CCC) they use a team based approach so all the specialists work together on each case. Their meeting the patient is allowed to attend, its called the tumor board meeting. If your BF hasnt been seen at a CCC and its possible to be seen at one, I strongly suggest you to at least go to hear what they have to say.

Being at a top CCC, there will be tools and methods used which smaller local hospitals arent as familiar with. The surgery will be a long one and waiting will feel like torture. His hospital stay will likely be at least a week. Being treated at a CCC, there should be speech therapists available to help him adjust to all the changes if he needs help. You can even ask if they have a visiting nurse program to stop by and check on him when he first goes home after surgery. Regardless of whatever treatment facility your BF selects its important for him to put his faith in his medical team and go with it, not looking back.

Please take some time to read and educate yourself so you can be a strong advocate for your BF. He should eat all his favorite foods now, before the surgery. His ability to eat could be compromised for hopefully only a very short time. But you never know how fast he will bounce back from surgery and if other treatments like radiation would be necessary. If so, there would likely be a much longer time frame of eating challenges. If your BF is on the slim side he should try to put on a few pounds prior to any treatments.

Hang in there! Its always a scary time when waiting for surgery and also while waiting for your loved one who is in having the surgery. Most patients get nervous and begin to worry about every single thing, especially the unknown and things beyond their control. For caregivers its even harder. They have the same worries but they try to hide their concerns and put on a smiling face and act upbeat even though inside they are struggling too. Stay busy and work on learning about your BFs illness. If he is having problems dealing with this or feeling overly anxious (completely normal for many OC patients), consult a therapist or doctor to help you manage the anxiety. Many caregivers also struggle too and reach out for some temporary help. If medication is prescribed it usually takes some time before results are seen so try not to put this off if you feel its necessary. Remember its only another tool to help get the patient and/or caregiver thru the rough parts. As a caregiver, take time for yourself once in a while so its not so much weighing on your shoulders. We will be here to help you as much as we can.

Anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help. Make sure to write everyones name down and contact info for later. Down the road if you are overloaded with calls and texts you can "assign" someone the job of passing along updates. With a long hospital stay and not knowing if your BF will be able to speak right away you probably will want to arrange to have someone stay with him as much as possible while he is in the hospital. Not being able to talk is horrible when you are alone and the staff keeps asking questions and expecting a reply. I always got trays of food delivered even though I was unable to eat even a bite. That was horrible having the tray sit there and smell the food when I was laying there in pain and starving. There are so many small things you may need help with during and after rads. Over the years working on the forum, Ive seen most people genuinely want to help but many dont know what they can do so dont be shy if you need help... ask.

To prepare, if he hasnt already seen his dentist, try to make an appointment immediately. He may go thru radiation 6-8 weeks after surgery so he needs to take care of dental issues before the surgery. He should have a thorough check up, deep cleaning and ask the doc if he should get flouride trays made for rads. Anyone who undergoes radiation for head and neck cancer should wear fluoride trays on their teeth. This helps prevent major dental issues after rads. Also using a waterpik, having impeccable daily dental maintenance and getting regular (if not more frequent) dental cleanings.
Make sure your BF gets a full blood workup done including thyroid levels, men also should get testosterone levels tested too. If having rads, he may have problems years down the road with his thyroid. A blood test now ensures he will know what his regular baseline thyroid levels should be. Taking a pill a day to manage the thyroid isnt a big deal, but getting the baseline level is.

Best wishes with everything!!!

List of CCCs


PS... Welcome Jay! Please begin a new thread so we can all welcome you aboard.


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