My father-in-law was diagnosed with oral cancer over 8 years ago. He continues to battle it today, but even though he has been through several surgeries, cannot speak well, now has a g-tube and has had chemotherapy - he leads a relatively normal life. The cancer has spread around his mouth over the years but thankfully has not spread anywhere else in his body. My own father was diagnosed with oral cancer a few weeks ago. He has always gone to the doctor regularly, so I believe they caught it early. I'm not too sure of some of the details of his diagnosis, but I plan on going to the doctor with him next week. He underwent surgery yesterday to remove the place under his tongue and also lymphnodes on one side of his neck. I'm not sure if the cancer was present in the lymphnodes or just likely to spread there. His doctor seemed optimistic about removing it all and recommended no chemotherapy or radiation. They think his speech will remain normal and should be able to maintain a normal diet after recovery. I was wondering how much more serious it becomes when the lymphnodes are involved. After watching my father-in-law, I felt pretty good about my father's prognosis, but after reading some things about oral cancer, I've become more concerned. I'm sure I don't have all of the information that I need to make my own assumptions, but getting information out of my father about his health is like pulling teeth. I hope he agrees to let me accompany him to his post-op dr appt. as I have many questions to ask. If anyone knows of things I should ask about, please let me know. Also, I was wondering about alternatives such as vitamin supplements, organic foods or anything else that might help boost the immune system and/or fight off the cancer. I am a firm believer that a positive attitude has a definite impact on a person's outcome. Any thoughts or advice would be helpful.

Welcome to OCF. Here you will find tons of helpful info. Its a great idea for you to accompany your father to his appointments. Take a notepad and write down your questions along with the answers so you can remember.

As far as supplements go, do not start giving him anything until you check with his doctor. That could be your excuse to get him to allow you access to his appointments. Some vitamins arent helpful at all, but that could only be for those of us who had chemo and radiation. Im not sure so really cant advise you on that. As far as something out there that fights off cancer, I dont have faith in that being available. A balanced diet is the best I can tell you. Attitude is something I also believe in, being positive will help him.

You may want to ask if the margins were clear and how big they were. That means around the tumor if the doc got all the cancer. Check if he needs to do any mouth exercises. How often he will need to get rechecked. What kind of doctor has treated your father? Was this at a Comprehensive Cancer Center? Your Father in law has struggled for 8 years with oral cancer? I would be concerned at how and where he is being treated.

I wish you and both your father and father in law the best with their struggles.

Ask for a copy of the pathology report on the post-surgery biopsy to get the exact scoop on the margins, plus the type and extent of everything examined -- Your father will have to ask for it or sign something for you to get it.

In fact, it is a good idea to get a copy of all the reports and the scans that may have been done -- This would all be handy if you need a second opinion at some time in the future.

Thank you for your reply and encouragement. I'm not sure about the doctor who is treating my father, his surgery was at a regular surgery center in a small town in central IN (although my father said he is very good and has been treating oral cancer patients for a long time). I've always wondered about the treatment my father-in-law has been recieving (in an even smaller town in central IN), but he doesn't seem interested in seeking second opinions and seems satisfied with the care he is recieving. Maybe if my father can overcome this it will give my father-in-law encouragement in taking a more active role in his own care. Thank you for giving me some ideas for questions to ask and I also wish you the best.

Thank you so much for your reply. I didn't even think about getting the pathology reports, but that is a great idea. Thank you very much and I wish you the best.

There are basically 3 approaches in treating oral cancer. Surgery, chemo and radiation. Sometimes all three are used but mostly the latter 2 are used concurrently. The idea is to kill the cancer with minimal side effects to the patient. Granted that's hard to do with only those treatment options. Most CCC's, Comprehensive Cancer Centers, try to avoid the surgery when they can, especially Neck Dissections, going right for the chemo/radiation but their decision is obviously dependent upon many many patient and cancer factors. I had 5 different opinions and 3 out of the first 4 included surgery. When I finally got to a CCC. Moffitt, I felt that they had the best plan for me which excluded surgery initially but leaving the option open if needed post Tx.

Before we can be most effective it would help if we knew:

1. How was the cancer found?

2. Did they do a biopsy of the tongue?

3. Did they do a biopsy of any node before surgery?

4. How many nodes were taken and how many tested positive?

5. Did anyone Stage his cancer?

6. What name did they give his cancer?

Thank you for the reply. My father was referred by his primary dr to another dr, but I'm not even sure if it was an oncologist, ENT, or what. His surgery was done at a surgery center at a local hospital. At first I thought surgery was a good thing and no chemo must be good, but I'm beginning to wonder. He only saw one dr and the decision to have surgery was made very quickly with no second opinion or second thoughts. He found a spot under his tongue and it was biopsied and was positive for cancer. He then had an MRI on his head and neck and I guess something must have been found in his lymph nodes because the decision was made to remove those too. No biopsy was done on the nodes at all. I don't know the stage or name of his cancer but he might have that information. I wish I would have found this website before we went to surgery, but hopefully this was the best thing for him. We'll see what the pathology report says at his visit next week. Thank you so much for giving me some ideas of what to ask the drs. I really had no idea. Also, how could I find out how to find a CCC? I guess with cancer, you need to have the opinions of many people so you can make an informed decision about your own healthcare. Again, thank you and congratulations on your recovery. Sounds like you're doing great and still helping out others like me.

I was wondering, didi they do any PET scan?

PET scans are expensive and not available in this area, however my Cancer Clinic had a portable one in a Semi-truck trailer brought into the parking lot on some Saturdays.

Be Well,

UncleVern

[quote=daughterkel] Also, how could I find out how to find a CCC? [/quote]
Where do you live, or what large city are you near? Perhaps posters here could offer recommendations based on their experience.

You could start with the institutions that belong to the National Comprehensive Cancer Network -- an alliance of 21 cancer centers across the country that offer state-of-the-art treatment. Every year, the NCCN publishes treatment protocols for many types of cancer, based on their stage and spread (if any). You can find the 2008 head and neck cancer information here.

Additional information on treatment centers is available here on the main part of the OCF site.

As most commonly used here, the phrase "comprehensive cancer center" or CCC refers to an institution that brings physicians and other medical personnel from a variety of specialties together to consider each case and make treatment recommendations. This ensures that the doctors are working together and are on the same page, rather than requiring the patient to find a surgeon, then find someone else for radiation therapy, then find someone else for chemo -- and then hope that they will all talk with each other. Because this type of cancer can affect so many important functions, communication and trust among the medical personnel are critical.

Here's another list of CCC's (Nat'l Cancer Institute designated) from this forum:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

The CCC's have to earn and keep up that designation, it's more than just putting more than one discipline under one roof, things like establishing a tumor board and having it meet at least once a week to discuss individual cases and make recommendations.

What is "skip effect"?

I had numerous biopsies showing leukoplakia and dysplasia across 15 years before a tumor actually started growing at that site on my tongue, so it can be a long process. None of the ENTs or oral surgeons would say that cancer would occur, just that I had to be watchful for any changes in that site.

I don't believe any PET scan was done. I don't believe much of anything was done. I did find out that his dr is an oncologist that specializes in ear, nose and throat.

We are from central IN. Indianapolis is the closest city, but I guess Chicago would be the closest major city. Thank you for the information. This forum makes it much easier to find information, especially when you're like me and aren't even sure what it is you're looking for. Thank you Leslie B and Pete D and everyone else who has replied and given me suggestions. You don't realize what a great help this has been.

[quote=UncleVern]PET scans are expensive and not available in this area, however my Cancer Clinic had a portable one in a Semi-truck trailer brought into the parking lot on some Saturdays.[/quote]
I think both of my PET scans were done with the portable vans, although the clinics concerned had their own CT and MRI machines.

PET seems to be used primarily with a coordinated CT scan, so each slice has an image in both systems -- If PET shows a 'hot spot', the reviewer can then switch to the CT view of the same slice to check it out.

I didn't even realize that the IU med center had a cancer center here in Indiana. You guys are so helpful. We'll see what the drs have to say on Tuesday when we go to his post op, but I think we will be looking into the Cancer center at the IU med center. Thank you so much.

If you check the lists that Pete and I linked to above, you'll see that Indiana University is a NCI-designated cancer center and has a head and neck oncology program. If you don't want to travel far, you could start there. Several posters here were treated at the University of Chicago, and others at Ohio State. What's important is to get to someplace that sees many cases and where the personnel are the most familiar with this disease.

[Oops -- Daughterkel, your comment about the IU med center hadn't shown up when I opened the reply form to write this post. I won't change my post, though, as the link might help others.}

Pete: The term "skip effect" was used in the pathology report of my husband's initial biopsy, indicating that cancer was not present in the small bit of tissue sampled but could be present elsewhere. The sample was examined by a lab that does only oral pathology, so I guess the pathologist picked up on something that raised his suspicions: When an ENT did an excisional biopsy that removed the whole leukoplakia, SCC in situ was found.

Pete!

It's a good thing U ain't my neightbor, there would be kissing going on! LOL

The Doctors twitch, the "Giant Cancer Accociation" tossed me out and people think I am nuts for repeating the 1988 Cancer guess I got from an ENT. They even forced the poor man into retirement for standing his ground and trying to get tests for me.

He told me it could take many years, but to watch out for that first fast growing tumor, saved my life I think.

Just Wrong ...

UncleVern

I think the questions suggested are all great ones. Make sure you make a list of these questions and write down the answers while you are there. Otherwise you are likley to forget. I wouldn't worry too much about having surgery before a second opinion but I would go for one. Where in the US are you? I think a CCC is the best way to go. All they do is cancer and I know that makes me feel better. I go to Fox Chase Cancer Center in PA.

Feel free to ask as many questions as you want. Everyone here is so helpful and full of knowledge. Good luck to you.

Suzanne

I forgot to mention one thing....as far as alternative medicines...I'm afraid they don't exist. I see a nutritionist and I think he gives me tips on just making my body a healthier place. As far as curing cancer...no way. I wish. But doing that makes me feel like I am doing something for meself. I eat better and exercise and take vitamins and hopefully that helps my immune system. But cancer is all about our own makeup and body chemistry. Why did it happen to me? I don't smoke or drink heavily. It just is. Having a positive attitude is very important and it seems you already have that. Does your Dad? How is he handling all of this?

I didn't really think there was much in alternative medicines, but we've discussed his nutrition and things that will help keep his immune system in tip-top shape. I think he's on board if we can just get recovered from this surgery so he can eat real food again. At first, I think he was just faking a positive attitude. He was really down, but since the surgery, he seems to have a much more positive perspective. I think my interest, research and willingness to get him better have helped, along with the support from family and friends. This website has been a great source and continues to be much help. Thank you all and best of luck! I told him about this website, but I don't know if he'll visit it himself or just refer to me.

Kelli

I've noticed in my friends that there seems to be a need to push me into doing normal things, as if the appearance of normalcy somehow makes the cancer gone, and eating "real food" is one of those things -- Be sure that in your efforts to return him to normal in terms of how he ingests food, you don't cheat him out of getting all the nutrition he actually needs.

Eating can be hard work and it may be difficult to get enough calories of the right stuf inside, whereas the canned stuf contains all one needs in terms of both calories and additives -- Nutritionist told me that three cans of the 1.2 density stuf would give me all the vitamins, etc., for the daily requirements of a normal adult -- Some people are on a life-time diet of the canned food, so it's more than just a stop-gap measure.

Thank you for your comments. It's things like that that those of us who are not going through it ourselves sometimes don't realize or may forget. My father-in-law (who was diagnosed in 2000 and has had several surgeries) relies completely on Ensure through his PEG for his nutrients to stay alive. He doesn't suffer from weight loss or malnutrition and seems unphased by the extreme change of lifestyle. Although they made him a plate for the roof of his mouth, he says it gags him and is extremely uncomfortable. He seems to have no interest in eating ever again. My father doesn't have a PEG, but I don't want him to loose the desire to eat, especially if he has the ability. Thank you again. You are a wonderful source of support, encouragement, and information and I am sure you are helping many, many people.

Carnation Instant Breakfast VHC was my friend for over a year post TX. I drank it with every meal when eating was so so boring just to make sure I was getting enough nutritionally balanced calories.