My husband Bob was diagnosed with stage three left retromolar trigone & alveolar ridge SCC T2N1MO on Sept. 16 2010. Life has been on stand still since. I found your forum and it seems like just what I have been looking for. We have been through so much just trying to get seen by the right doctor. Today was just another day of a let down.
A little history my husband is retired military, we will have to go through VA. Because of where Bobs tumor is he has to have a Emory specialist the one we will eventually see is just that. He does a lot of work at the VA but we can't see him till november 4th.
My fear is how much will it grow between now and then. A week ago you couldn't feel the lympnode by hand now you can, and when he first went to the doctor the tumor was less then 2cm now it is 3.6cm .We have had no treatmeant so far.The only he has had is pain medicine. Any advise would be great

Mine was very agressive and caused extreme pain, I am 28 and had surgery on the 16th. I had SCC of left lateral tongue stage II then possible III at surgery. Just try and keep him calm but as well put a foot on it, You have come to the perfect place for support, I dont know what I would do without OCF. If my opinion does not help any I am sure someone else will know much more. Brian is always a huge help!

Your Friend
Nathan

Thanks it does help to have people to talk to that understand how I feel .I do my best to stay calm for him. He has always been my rock now it is my turn. Good luck to you. Do you have to take any treatments. like I said this is all new to me so if I ask to much please let me know

Hi Deb,

I know how you feel. Waiting a month seems like an eternity. The thing is with these surgeries it is pretty complex. They have to put a team together and plan it out. Nov 4th is a month. I had to wait a month too. It was terrible as you just want this horrible thing gone from your body forever.

They won't do radiation or chemo before because it will be too hard on him to do that and then have surgery. He'd probably have to wait longer to heal up from that.

Get the best Dr. you can. A lot of what you may think is the tumor growing is just more swelling because the body wants it gone... but I know its troublesome that it is growing... See what you can do to move up the date but I'd stick with getting the best Dr. you can versus getting an earlier date.

Hang in there!

Deb/Bob:
Hello, and welcome. This website and forum is a wealth of assistance as you go through this journey. Every second counts but as mentioned above the pre-treatment stages take a little time and planning. Just get the best team you can find and then ACT on it! Ask questions, take good notes, do your homework, trust your heart. Everyone here is a wonderful support system.
Stay in touch and best wishes to you,
Steve

Welcome to OCF!

Deb,

I would be that squeaky wheel and call them often, every day, to let them know it's growth history and to always remind them that you are available for a cancellation or after hours. Beg if you have to. Crying can't hurt. Not that familiar with the VA but I would also call whoever is in charge of the case and keep after them. I personally would not want to wait another month just to see this doc.

The 1st Oncologist and ENT I saw told me I needed rads and chemo. Naw, I wanted other opinions and went to 2 bigger and better known hospitals for their opinion. WRONG. Listen to what advice you get from the people here.

Deb,

I am currently in the post surgery and " get ready for radiation " stage of treatment. Like said by others, I felt like I was never going to get to surgery and that the possibility of a cancellation may happen. Do what you feel is right in your heart and for Bob, because the first set of doctors I met were a bit nerdy and dingy, lol. But I tell you when the big bad boss came in, his presence was felt and he treated my disease like the enemy and I felt he cared about me. My decision was made and I let my mother and fiancee know that I did not want to search anymore and I had no insurance anyway, had surgery the 16th and I am just living it up and getting fat for surgery.

Your Friend,

Nathan

IT is great to have all this advise. I called today and they moved Bobs app.up to the 19 of oct. I am greatful for that. We have never been through a illness where getting the right help has been so hard.I do believe we are on the right path though. Once you get in to VA and the first doctor see's you "I have heard if it is critical you move right along". I hope that is right. My next question is how to help Bob through this. I am a strong person so I hate to let people see me cry. Bob is the one person that I do lean on, now that it is his illness I need to be there for him. I don't want to scare him but I am the person on this internet I know what he is about to endure. I just don't know what information he can handel. Should I just leave it to the professionals.

Try and get him to visit this site OR as some have done in the past, print out selected posts and leave them for him to find and read when alone.

He doesn't get on the internet much but I do like your Idea of printing out notes from this forum and leaving them for him to find. Thank You
How can I find out some of the different terminology used I look up as many words but some times the abbeviations are not out there

Deb

Here is a thread here on OCF, FAQ that has some common abbreviations Cancer Abbreviations - OCF forum
Plus the search box on the right of the screen will pull up old posts on subjects that you want to learn more about.
Sorry you had to find us, we used to say this was a club you did not want to join although when I think about it, it's the opposite as we here at OCF are part of a very elite club: cancer survivors, and that is a club that every cancer patient wants to join

charm

This is a list of abbreviations I put together some time ago from those mentioned on this forum, in case it helps:
http://web.utk.edu/~aalix/abbreviations.html

I know how you feel about waiting. I first found my cancer in november, and doctors kept insisting it was everything but cancer cuz i was too young for cancer. But they finally biopsied it in march and it came back as stage 3. At that point i think it was 3 weeks later and i had my surgery, and then 7 weeks after surgery i started radiation.
I am glad that your husband has you, i know i wouldn't have made it through if not for my boyfriend. You just being there for him, and helping him out as much as you can, will make a world of difference for him. Even when my boyfriend would break down and cry and just want to hold me, it still meant the world to me, cuz he was by my side. All you have to do is be there for him. I am sure he's seen you cry before, and it won't phase him if you cried now, as long as you are there with him.
I am glad they bumped the date up for bob. Hopefully this will move right along for him from there.
I know i don't have the same location of cancer, but i did have positive lymph nodes, so i know about neck dissection. If you have any questions, just ask.
Also for me, i didn't want to know before i went into surgery what it was going to be like, but i almost wish i found this site before surgery. For me surgery was a big slap in the face, day before surgery and day of, you are normal, and doing fine, other then the pain from the cancer. After surgery, it's like your world is turned upside down. I honestly wasn't expecting it to be that big of a deal. So maybe talk to him about it and ask if he wants some more info on it so he will be better prepared.

I wish you both for a quick as smooth as possible recovery!

Hi Deb and welcome to the OCF forum. Everyone here is so helpful and the shared wisdom and experience will help you to help Bob. While he may not be ready to explore what he is about to experience I'm so glad you are here learning about the illness and preparing yourself for treatments. Both the patients and caregivers here will walk with you through the next few weeks and months. Feel free to ask any question, fuss, cry, whatever.

Bless you

Dodie

Well now our appt. has been moved up to oct.12. I know it is just a fisrt time visit but knowing the doctor that we really need to see is in this group of doctors lets me know that we are on our way to treatment finally. Now the next question is what kind of treatment will he have. The last doctor said he would do surgery first. He said it was so close to the bone that it might need to be cut in some way and he didn't do that. He also said that was his opinion, this doctor might want to do radiation and chemo. But whatever the start of the treatment is, it is a start.

If it is a CCC where you are going, they will have a team of Drs to make the decisions as to what they will do. Good Luck to you both.

Deb and Bob, welcome to OCF. There are some x-military people here who may be able to give you advice about how to navigate the insurance to get the most out of it. Make sure whoever you are seeing next week is familiar with oral cancer. Dont be afraid to ask how many OC patients they see. A cancer center usually is the optimum place to go for treatment.

Is Bob prepared for surgery or treatments to begin? He should be eating all he can right now. Eat all his favorites and then eat more! Bob should be enjoying everything spicy like mexican or chinese, things like steaks, ribs, and breads. Its ok to gain weight, he probably will lose some weight during his treatments. His taste and mouth functions will change weather he has surgery or radiation. It will become more difficult to eat. Many including myself have had to depend on a feeding tube to get thru this. While nobody wants one of those, it can be a necessity.

Here are a few links to important info to help you begin this battle. You are very fortunate to have found OCF to guide you thru this battle.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=65994#Post65994
http://www.oralcancerfoundation.org/board_images/GTI_draft.pdf


Wishing you both all the best. Please post an update after the appointment.

I am very greatful to have found the OCF. Learning everything I can about this cancer is of the up most important thing I can do for Bob. I am surprised at the number of people who have oral cancer. As surprised as I am about this I am even more greatful to see the amount of survivors. Please know the words I hear from all of you help me deal with this new reality of Bob's and my life. I am having Bob drink all the ensures he can, he has been hurting for quite awhile now so I am concentrating on soft food with as many calories as possible. He has lost about 25lbs already. All this with no treatment. Even though he hasn't wanted to talk about it much, he knows he might need a feeding tube when it all begins.
I hate to ask this next question but the reality of Bob not working has come in to play. Due to the economy He lost his job for lack of work and had just begun this one 4 months ago, then cancer came into our lives. Will he be eligible for social security disability and if so when should we begin that process.

Welcome Deb!

I'm so glad you found this site and you are getting everything in order so that you are more equipped once treatment begins.

I like the idea of printing out little posts here and there for Bob to read.

Make sure to take some time for yourself as well.

I would start the disability process right away!

Deb - When you and Bob go to your appointment, it might be helpful if you bring someone else with you. Often when we are under stress it's not easy to remember everything the doctors have said and having someone else with you will help you compare notes about what was said or recommended. It's good your appointment got moved up. Also write down all your questions so you can get them answered. When I went to my son's first appointment with the ENT, my daughter was with me and later appointments other people came, too. They can provide support and encouragement just being there. It helps to get names of people that you talk to so you can call them later if you have to. It's good that Bob has such a caring person as you by his side. You can get through this!

I think he needs to be unemployed due to illness for at least 6 months before he applies. I could be wrong but I know there is a timetable he must meet to be eligible. Please dont think of it as something he wont bounce back from. I returned to work every time I had OC. It just seemed to take me longer and longer to bounce back after each episode. Think positive, this is a temporary bump in the road and next year this time he will be wonderful

Here is a list of soft foods that might help.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Bob and I had a long talk last night, with many tears. He is ready to get this started. We made a list of a few questions that I know are on a personal level and that each person will handle a little different. With that being said a general idea of what to expect would be greatly appreciated.
First, What are the side effects of radiation? How long do they last? Are there any side effects that probably wont go away?
With that being asked, What can we do to manage these side effects?
As for a feeding tube I am sure he will need one, will it always be uncomfortable as it sounds?
I know ther is some type of mucosa (if I am spelling and saying it right), Will he have a hard time with this, and is it a lasting side effect , and if it is Bob said to ask how often will this mucosa will come out in a days time?
These are hard questions to ask but like Bob and I talked about last night better to be prepared then to scramble at the last minute. If there is anything elce you all can offer before next week starts please let me know. THANK YOU is not enough but it comes from my heart so THANK YOU

Deb,
Keep that list going and take it with you to the doctor. The effects of radiation are different for everyone. I had radiation before my surgery at a local hospital where they determined that my growth was compromising critical organs, ears, eyes,etc. I was referred to a CCC after radiation & chemo and both the PS & ENT are skeptical of that original decision to do radiation. They both wish I had seen them first because the damage from radiation has made their job more difficult than it should have been and the outcome would have been so much better. I was too scared and too uninformed to ask about a 2nd opinion. Side effects vary and can last for years. For me, trismus has become a big issue only recently after my last surgery. The inability to heal quickly is another side effect that many of us suffer from. I also lost a lot of weight from the combination of chemo & rad., but he will gain it back.
As with all your questions, everyone has a different experience. For me, the feeding tube wasn't so bad the first year. I had it replaced after more than a year and the 2nd time, it was botched. (The CCC insisted I go back to the local hospital that initially put it in...big mistake! I won't go back again to have it fixed.) More importantly is how much Bob is eating now and going forward. You mentioned giving him Ensure but I don't believe there are enough calories in Ensure alone. He should be getting a least 3000 calories a day. There are others in OCF who are more well versed on this than I am.
As for disability and any other services or benefits you might be entitled to, apply for them all now! It can't hurt and you might be surprised. The hospital might also be able to help you or suggest things you don't even know about.

Like so many others in the forum, I believe your best course would be to go to a CCC and I have to believe the VA will refer you if you ask. I didn't think I was "eligible" because I am a charity case. It was only after my local hospital couldn't help any further that they referred me to a CCC, my point being that if I had known, I would have asked for a 2nd opinion prior to radiation.

Best wishes and keep those questions coming!
Pat

Hi there,

The PEG tube hurt initially when I first got it in but it faded after a few days and once I got used to it - it wasn't so bad. You definitely lose your appetite during radiation and chme so it made me a feel so much better because I could get nutrition in. Eating was a chore because I was learning to eat again and it really hurt my throat- so it was pretty unappealing at that time.

Radiation to the head and neck area is very difficult. It was a slow decline for me and somewhere around 3-4 weeks in I felt the effects more strongly. The lining of your mouth and throat basicially sheds off creating a thick mucuous.
Its kind of like what happens in ghost busters when they kill a ghost... its just this sticky stringy mucous. Its kind of nuisance and uncomfortable. At one point it made me very sick to my stomach.. swallowing the mucous but it didn't last too too long. Like I said it was uncomfortable for several weeks. I was tired and worn down after the radiation finished for about 2 weeks and then things started getting better.

It wasn't fun but it wasn't as bad as I had anticipated. The doctors will be monitoring him closely. When I got too dehydrated and weak they would bring me in and just hydrate me which made me feel 1000 times better.

It is very very important to just power through the treatments and be strong. The first chance is the best chance you have to beat this disease once and for all.
When this cancer reoccurs it can be difficult to get rid of again. If you can iradicate it from the system completely the first time its much better.

Hang in there. I know this is a shock but it can be done. A year from now he will be doing lots better.

As for long term effects. i have some broken capilaries on my neck from the radiation and my neck was very very very stiff for a long long time. I've been working with a chiropractor and do yoga and get massages regularly. All of these things have all helped tremendously. This year (3.5 years later) I've really made major strides towards almost feeling like my old self again (accept for my speech- which is OK).
I have a lot better range of motion with my neck.

Life will be good again for you both soon.
Take care and be strong.

so radiation has side effects, but the affect everyone differently. Some people get all of them, some people get none of them and some people are in the middle. Also time wise of when they happen is different with everyone as well.

The side effects he will almost certainly experience is loss of hair in the area radiated, sores in mouth/throat, thick saliva, dry mouth, peeling/sunburnt looking skin in radiated area.

For these there isn't much you can do about hair loss. I lost it in the back of my head and i just got my hair trimmed so it stopped falling out so much. Sores in mouth/throat, well for sores in the mouth, they suggest you use water, salt, baking soda mix and it helps with relieving some of the pain from the sores, helps make your saliva not so acidic, and also helps thin out mucous for a little while. Thick saliva (sometimes referred to as mucous) starts when your salivary glands functioning starts to slow down. When they radiate your mouth, it almost always affects your salivary glands below your tongue, and they start to dry up and that's when you get the dry mouth, then thick saliva. Anyways for that they do sometimes say mucinex helps, it's a over the counter medication, but can also be prescribed, otherwise if he keeps drinking as much water as he can and rinsing with the rinse it helps too, but nothing clears it up completely. I was nauseated the last 4 weeks of radiation, but everyone is different.

He will also experience different levels and types of pain from radiation, but the doctors should be monitoring him and helping him manage the pain with medications. Common pain meds used during radiation are fetanyl patch, percoset, oxycodone, and dilated, but it depends on the doctor and what they prefer to use or think will work best.

As for disability. I had my surgery in april and in may as soon as I could get an appointment, I applied for social security disability and social security insurance. I found out around end of august that I was approved, but I had to fill out a bunch of paperwork before that and after I applied.

He should apply for both ssi and ssdi because ssi won't start for 5 months, they will start paying the 6th month but it will technically be 5th month payment. ssi will pay usually a lump sum of money to cover the months before ssdi paid for, but it's a lesser amount. I got my ssi end of august/early september and then started receiving disability october 1st.

Usually a social worker in the hospital can help you get the ball rolling on these and other applications, like for medical insurance programs if you don't have any and stuff like that. But if you are like me, and the social worker didn't even stop in to see you while you were in the hospital, then you can call the social security office near you and set up an appointment to do the application, or can do it over the phone sometimes.

I hope this helps a little bit at least. Hope the appointment today went smoothly and you and bob got more info and feel a little better about what will be happening here and soon. I know once I knew what was going to happen I felt better a little bit, it was better then waiting to find out.