Hi, sadly I am no new to forums , my husband has melanoma stage 4 and I have gained so much knowledge and strength from that forum. We just found out my brother in law has been diagnosed w oral cancer. So new , we still know so little. He sees oncologist today and more testing. What we know is 1.5 cm floor of mouth. Testing for nodal activity and any metastatis to othe areas. No staging yet. Frankly , the surgery to floor of mouth frightens me - with melanoma they take such wide excision so for clear margins. I pray results will show early stage. If so , is that typically surgery then potential chemo? Are the new immunology drugs so exciting now for melanoma also used for oral cancer?? What questions should they be asking oncologist? They are at Mass General. Any insight on surgery recovery and what eating/ talking is afterwards?


Thanks - sorry , I jam packed a lot into this introduction!

Rita

Welcome to OCF, Rita! Im glad you have found our site to help get your brother thru his upcoming battle. Stick with us and you will learn all kinds of tips the medical professionals may not mention.

Unfortunately all the new things available for melanoma are not available for oral cancer. Sadly, OC is not one of the "big 5" cancers that gets lots of notice which means not so many research dollars. OC is treated with surgery and/or radiation with or without chemo. By itself chemo is only used to try to shrink tumors or for palliative care. The link below has page after page of detailed info about treatments for OC.

Treatment---from the main OCF pages

If your brother hasnt already done blood tests, make certain they are testing both current thyroid and testosterone levels. If doing 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 your thyroid or testosterone isnt a big deal, but getting the baseline level is.

Take someone along to appointments, and a notebook to keep notes. Often after hearing the bad news, a patient tunes out anything else said so having someone along will greatly help.

He should also have a good dental exam. He may need to have some teeth pulled prior to surgery.

Line up friends and relatives to stay with him as much as possible while he is in the hospital. Make sure you tell him anyone who offers to help he should tell them when the time comes he will let them know what they can do. Write down everyones info so someone can reach out for help when necessary. Its easiest if he has only one point of contact so everyone who wants updates will ask this one person. When he isnt feeling the best he probably wont want to be bothered by a million texts, posts and emails.

After surgery, he may be unable to speak so others can understand him. Take a dry erase board to the hospital, and a little bell too so your brother can easily get someones attention if he is alone and needs help. This is also why someone should stay with him as much as possible. In the hospital a million people will be in and out of the room, most wont know he isnt able to talk and will expect him to speak to them.

Right now he should begin to concentrate on his intake. A major surgery like what he will most probably go thru will affect his ability to eat most foods for at least a few weeks. Then if doing rads, his sense of taste and swallowing ability could be compromised. Tell your brother to eat all his favorites now so he wont go into this with any cravings.

I could go on and on with way too many tiny little tips. Until a treatment plan is developed you wont know what the treatment will be. But, if I had to guess I would say dont be surprised to see the surgery followed up with about 35 radiation treatments, depending on staging also adding chemo.

Diagnosis--- from main OCF pages

Please take your time to read thru the links, this will help you to better understand oral cancer and how it differs from other cancers. Send your brother and his spouse if married info to also join our site and educate themselves about oral cancer. If he isnt one to do research, print out the posts and pass them along to him. An informed patient and caregiver make for strong advocates.

Best wishes!!!

PS... I replied to your private message (PM). There another important link there too

My oral cancer was in a different part of the mouth, so what I learned might not apply to you. But as for general stuff:

I took my scans and photos and went to a different hospital and got a second opinion. Even though both hospitals suggested the same treatment, I learned along the way that some places are still doing an older method that would have caused me more disability. So you could ask them if there are other approaches, and you could research those.

Also, even though OCF has been my best source for help, I also got a few good tips from SPOHNC, including their book "We Have Walked in your Shoes." And the American Cancer Society helped me out with one thing.

Christine,

I while ago you shared wonderful information with me, and thank you. It's hard to counsel someone from miles away...especially as we grapple with my husband's melanoma treatments. As you mentioned - oral cancer is a different animal - a scary beast.

My brother in law had surgery at Mass Eye & Ear - he had surgery 2 weeks ago and lymph node dissection. Of the nodules that were removed with the neck lymph nodes, three were cancerous. The surgeon recommends a six-week (five days of week) course of radiation treatment of the mouth and neck, interspersed with chemotherapy. It would begin later this month. While the surgeon believes that he removed all the cancer from mouth and neck area, he stated “the research” indicates that a course of radiation combined with chemo lessens the possibility of a recurrence.

Over the last year, I feel I have read read and learned so much about melanoma, but what I have learned is that each patient needs to be an advocate. They haven't asked to have the records and have not had a second opinion yet.....not sure they even know what stage.

Sorry for so much info - is the radiation and chemo the standard of care? Do you know of any recommendations for specialists in the Boston area that you can offer for second opinions?? Sorry - this is a lot - and my info is second hand, but I thought that I might be able to help them long distance. I did recommend they register for this forum, I have gained so much from the melanoma patient forum, but I think that they are still wobbly with shock and some of the details on the forum are too scray still.

Any additional insight you can share would be great - promise not to write so much next time!

Rita

Its not always easy to switch physicians after already starting a treatment plan. Ive responded on your other post with more info about CCCs.

The treatment plan your BIL has is the NCI standard of care. This is what most of us here have been thru. Surgery, radiation with or without chemo are the only scientifically proven ways to eliminate oral cancer. So to me, it sounds like he is on the right path.

Wishing you all the best with this!

Hello Rita,
Your Family is so lucky to have you and your help, even if from afar.
If this was my husband I would be very happy with the treatment plan. This fact that he has positive nodes, even though now removed, means he should be treated with chemo and radiation. As Christine has stated above this follows the NCI guidelines.. This is an aggressive cancer and needs to be hit hard from the get go. You do not want to be facing a recurrence within a short time because you dont like the idea of chemo or rads. His Doctors"research" is correct.
I hope all goes well,
Tammy