Hi I'm Sharon. I am glad I found this site to connect with people and caregivers of oral cancer. My brother currently age 49 was recently diagnosed with advanced scc. He's scheduled to have this major surgery on Tuesday. I've been doing lots of research so I would know what to expect, prognosis et. It would be nice to talk to survivors and/or caregivers. I sounds like it's going to be a long recovery.

Hi Sharon,
I'm sorry you had to join this site but it will be very beneficial to you and your brother. It is hard to say how his recovery will go; we would need to know much more information about the primary site of the tumor, the size, any lymph node involvement, Chemo and Radiation plans, etc., as everyone's story is different. The most important thing right now and until he is unable to anymore, is that he eat everything that looks or sounds good. Forget the calories! Have his doctors mentioned him needing a PEG tube? A lot of OC patients end up needing this device because it becomes very difficult to eat or even drink. My husband had a PEG and still lost 60 pounds during his first treatment. Will you be your brother's main caregiver? It is a hard job, but he truly will need someone to go to appointments with him, and physically help him with his symptoms, medications, etc. I'm sure you will get more good advice from many others here. Ask any questions you may have and someone will answer. We are here for you.
Lori

Hi Lori -

I'm so sorry to hear about your husband:((

Thanks so much for responding! I really appreciate it. My brother dx is T3N2MO. He's having an all day surgery this Tuesday that involves removal of part of his tongue, neck dissection, etc. and reconstruction at the same time. So, it sounds like a lot!!! He will have a feeding tube for a couple of weeks at least, and when he comes out the hospital he will have a trach. I will be his caregiver as he is staying with me since his diagnosis. I've been managing all appointments, tests, and communicated with his doctor. His doctor says it's treatable and he has a 5 year survival rate of 50%...so I just want to connect with people who have either gone through this with someone as you have, or is going through this. Look forward to hearing back from you.

O and he is scheduled to have radiation afther his surgery but I don't have all the details of that. He has a 4.1cm lump in his neck and his diagnosis is oral cavity carcinoma.

I think you'll find that people on this site, both caregivers and those who have been dealing with oral cancer of some type personally, will be very helpful, informational, and encouraging. Sometimes there's tough love too, when it's needed!

Hi there and welcome

you have a long journey ahead of you but be thankful that you found your way here before it has really started.The support you will get makes it seem less lonely and much less scary.
Drop in as often as you can and let us know how its going.


good luck on tuesday that will be one long day

love liz

Yes, many here have completed the same surgery and while he will look scary for a while he will recovery nicely. Do fatten him up post surgery going into the rad and I assume chemo.

welcome to this site as it will prove to be the most valuable tool in your arsenal, outside of your doctors that is.

Hi Sharon,

All that stuff you wrote regarding your brother's diagnosis and surgery can be put in your profile(see bottom of each post) so you don't have to repeat it each time in your posts...we all look at it to give you the best answers based on the info there.

Go to top of page "My Stuff" then "Profile" and you will need to fill in the info at the bottom.

Your road ahead as a caregiver is going to be rocky, but it is so important for your brother's outcome....makes all the difference. This website is full of information and it will behoove you to take the time to read as much as possible...Information is Power.

I wish you and your brother strength in the coming weeks,

Deb

Welcome Sharon,

Sorry about your brother, and happy that you found OCF. You will receive .much support here! Good luck to you and your brother this upcoming Tuesday

Sharon,
your brother is very lucky to have you by his side.
After he recovers from his surgery, you can still have several different opinions about the course of treatment, do not hesitate to listen to as many doctors as you feel is necessary. Also, regardless of whether or not he will need a peg tube (I didn't have one), it's crucial to meet with a speech and swallow specialist or just at least to have someone walk him through the exercises necessary to maintain his ability to swallow as even if he doesn't have a peg, he'll have a nasal tube for a bit, plus he will only be swallowing liquids.

And also, things will get better as he recovers from surgery, and then much worse as he is hit by radiation and possibly chemo, and from there the road to recovery is veeeerrrryyy slow. But he needs to eat, drink, brush his teeth, and not shy away from pain medication.

I'm not a frequent poster on this site, but I'm a frequent reader. With rare exceptions, everything I was looking for, I was able to find here.

Get your brother a bunch of notepads and pencils because for a while it will be his only way to communicate with doctors, nurses, and family. My friends gave me a iPod touch so that I could keep in touch via email while in the hospital.

I hope your brother's surgery goes smoothly. Mine was 11 hours long, it's exhausting for everyone involved. So be prepared.