My brither (57) has just been diagnosed with oral cancer after having a biopsy this last Monday. He's going to have a PET scan and a CT scan of the neck next Tuesday. He started having problems with mouth last fall, and had seen an ENT for it. He had/has a couple of nodules under his tongue and also had inflammation of tissue. At that time was Dx as lichens plantens, he also had a biopsy at that time which was negative. He had steroidal mouth rinses and maybe an oral course of steroids. He had quit cigar smoking at that time. To got better, then worse, better, but never went away. About 3 wks ago, it got worse, as he had difficulty swallowing, and a sore throat with pain into his ear also. He saw his dentist at that time who reccomended he get another opnion, and he was able to get seen at the Mayo Clinic in Rochester, Mn by an oral surgeon. He lives and works in the Rochester ara. Thanks to a great NP he was able to be seen quickly after explaining the pain and discomfort that he has been n, otherwise would have been several weeks before biopsy. They took out about a quarter sized piece of tissue from his tongue and floor of mouth; and came back in 20 min's and gave him the news that he had sqamous cell cancer. He'll see the surgeon after the tests, the dr has already said that he'll probably have part of his tongue removed and a neck dissection. I know that he is in good hands now. I'm just upset that he was under care of an ENT for the last nine months and just now getting this diagnosis, though it may be possible it was a recent change in condition. I've read a little bit of the postings, having just registered, and it helps to see that a lot of folks are surviving after having later staged cancer diagnosis and major surgery, radiation, an chemotherapy. He is "numb" at this point in his feelings with the situation. So I'm just trying to learn about what lies ahead for him, and what I can do to help support him and his family. Thanks much for any advice that you can give me.

Welcome to OCF, Steve. You will find lots of helpful info and support here to help your brother and entire family. Your brother is lucky to have you by his side thru this. We will help you all.

Oral cancer and its treatments can be a long road. Im glad your brother was seen and diagnosed quickly when the pain started getting bad. Im not making excuses but not all ENT's are specialists in oral cancer. Better to look forward than trying to understand why the previous doc didnt diagnose him. All water under the bridge now.

If your brother is able to eat he should try to have all his favorite foods now prior to any radiation treatments. His sense of taste and swallowing will change. Better to go into this without any cravings. During treatment and for at least the first year afterwards, he will need a minimum of 2500 calories and 48-64 oz of water every single day. This is the one thing patients have control over but most will struggle with. I know it sounds like alot. His body is going thru so much fighting the cancer and trying to rebuild itself from the surgery he burns up calories and an incredible rate.

He will also want to see his dentist to have a thorough check up and flouride trays made. If he has any cavities or teeth that are questionable those should get taken care of now. A full blood panel including thyroid and testosterone will need to get done first too.

It takes a village to get someone thru OC treatments and recovery. It would be a good idea if your brother or someone in his household joined our group too. Anyone who offers to help them should get told they will get notified later when the time comes. Take down their contact info in a little address book specifically for this. Not everyone is lucky enough to have the same friends still standing by their side when everything is over so your support Im sure is much appreciated.

Best wishes!

Sorry for the Dx. Can't help re the surgery and let's hope they won't need to recommend any further Tx post surgery. Do keep us posted as you learn more.

Hi Steve - welcome to the family. You will get the information and support you need here to get through this new journey.

It would probably be a good idea if you could get your brother to join the forum too. I'm sure you will make a great caregiver and educate him on what he needs to know, but him reading this stuff himself will make him think of many questions on his own that he wants answered. The more he can learn about this disease and it's treatment, the better advocate he will be during and after treatment.

That way he will have two people fighting for him.

Good luck with all this, we will be here to help every step of the way.

Tony

Neck dissection will cause a radical change in appearance immediately after the surgery - but it will subside. I was scared to death looking in the mirror when I first saw myself. A good surgeon will put the scar in a crease in the neck. It helps camouflage the surgical site a bit.

Welcome Steve,
It sounds like things are going well now and on track. Keep reading and getting informed to assist your brother. The more you know the more you can help guide him through this journey. It is going to be difficult so read and post as you desire. Good luck, Don