My dentist saved my life. At an oral exam, he found a lesion. I just learned this week that I have squamous cell carcinoma of the left lateral side of my tongue after a biopsy was done by an Oral Surgeon last Thurs. Already I have had three consultations by ENT surgeons(one at USC, one at private UCLA trained dr, another at a Cancer Center). Tomorrow I have a PET/CT scan and meet with the last surgeon to dicuss my options. He is leaning towards removal of lesion, possible graft of the tongue. He doesn't think that neck disection is necessary unless the PET/CT scan "lights-up." The other surgeons wanted to definitely remove the first three zones of lymph nodes. I'm confused to say the least!!!
I have 10 year old twins and a very busy life. At some point I just need to decide neck dissection both sides or not. I guess the time is for me to focus on me. My twins will survive.

Hi Mom of Twins, welcome to the Board. You will find many of us have had similar experiences. Sounds like things were caught at an early stage which is great for working towards a cure.

You will hear from many people about whether to do neck dissection or not. Both times I was diagnosed the lymph nodes did not show up on a cat scan, but 2 had microscopic amounts of cancer cells in them that were only detected by pathology. Perhaps a PET scan is more accurate?? You may want to discuss this with your doctors. The neck dissection itself is not a big deal - surgeons are very skilled and any scar is usually hidden in the normal folds of your face/neck. Dependent on your PET scan results, personally I would opt for the neck dissection - just to be sure.


Regardless, we'll be here for you as you go through all of this. Although I go by the handle of "Pandora" due to the message of Hope that myth denotes, my name is Donna. Your name??

Hope to chat soon.

Donna

Hi and Welcome!
My initial diagnosis was the same as yours but the lesion was smaller (T1). This was completely removed with my first biopsy. At that stage it was also recommended that since my margins were good and PET/CT scans clear that I wouldn't need a neck dissection, just very close monitoring. As you will see by my signature I have had the works since.
My Drs think that the spread to my lymph node was due to a second malignancy behind my rear left molar which was removed 6 months after the tongue lesion. I can't see the need for a dissection on both sides if the tumor is restricted to the left side of your tongue. From what I've read and learned here that would be an unlikely course of action unless of course the PET/CT shows something on the right side.
There are arguments for and against dissections -v- close monitoring and I may have been saved radiation (which is every bit as bad as everyone says it is) and chemotherapy (which for me was okay), had I had the dissection initially. But who really knows - this disease takes so many twists and turns that there is not much point looking backwards and second guessing. I have lost about a third of my tongue and have not had a graft. I can eat, speak and do everything (except lick my lips and teeth) that I did before. (I can't eat spicy food or drink alcohol, though because it still hurts my mouth - but that is more a side effect of the radiation than my surgeries)
Given the age of your children I'm guessing that you're fairly young to have 'oral cancer'. I was first diagnosed at 48 when my kids were 14 and 16 and I thought I was young. There are now several people on this site that are in their early 20s - that is so cruel and unfair. Good luck with your decision making, I don't think that there is any clear cut right or wrong way to go. Just gather all the advice you can and work with Doctors that you like, trust and have good reputations.

Sue G.

I'm traveling for OCF right now and can only post a brief message late tonight. I hope that tomorrow morning other OCF posters will expand on what I am going to say, as we have many, very informed, and personally experienced posters here that will understand right away what I am going to say to you, and explore the idea and reasoning further.

First of all you have been seen at some good places. UCLA's cancer center is in the top ten in the US of ALL centers, and it is multidisciplinary. Having said that, you have said some "buzz" things in your first posting.

First, you are getting all your opinions from surgeons. All of them regardless of institution, are trained in the same discipline of the three possibilities for treatment - which also includes radiation, and chemo. (Those two usually used in tandem) I STRONGLY suggest before anyone decides what they are going to do with you as far as treatment goes, you are put before a multidisciplinary treatment tumor board. This will allow people from different backgrounds and ways of approaching this disease to, TOGETHER, decide what is the best thing for you to have done to beat this disease. The best long term outcomes do not come from single discipline treatments. The NCCI guidelines and standards of care are all about combined methods of getting you from where you are to "cancer free".

I have never met a surgeon that does not choose that as his first way of treating this disease. Ditto people from other diciplines. If all you have is a hammer, everything looks like a nail.....

FELLOW POSTERS AND SURVIVORS. Please chime in here and take this idea to the full explanation. It is late I have been lecturing all day, and I have to be up at 4 AM for my next flight. MOT, I will check in on your thread again tomorrow night at the next hotel. You are right in southern CA where I usually am as well. If you wish to talk on the phone come Friday, please get my number off of the main web site and call me. I would be pleased to talk to you about your options, and answer your questions the best I can. But I am really confident that tomorrow you will see other postings here that will be of great help in getting your thoughts in order, your fighters attitude up to speed, and learning what you need to know to get through this for yourself and your family. Chance favors the prepared mind. Welcome to the OCF family. No one gets through this alone.

Donna,
When my Lymph Node first popped up it showed up clearly as being abnormal on the CT scan, but a subsequent PET scan and ultrasound guided FNA were clear. The FNA showed normal cells and a necrotic centre, but no cancer cells (this is not unusual because they can't sample all of the node). I'm not sure why the PET was negative but none of these tests seem infallible. A neck dissection is probably the only way of knowing for certain.

Sue

Welcome. You are so right. You must take the time to focus on you, so you can be in good shape for the twins' teen years approaching soon I have a 3 yr old and trust me it has been hard to focus on me as needed, when everyone else needs me too...

any diagnosis can be very alarming and confusing. Take good notes, ask a lot of questions and never give up!

I wish you the very best and hope your journey is successful and that your goals are quickly accomplished.

I went to 5 different cancer doctors. The first 4 wanted to do surgery because that's what they were, surgeons. The last "doctor" I went to was Moffitt and there I had a team of specialists meet together and decided that even though I was a Stage IV and had at least 2 cancerous nodes, that they didn't recommend a Neck Dissection and said that I needed concurrent chemo and radiation and IF, and they didn't think I would need it, the Tx didn't work in getting rid of the cancer not only in my mouth (Primary BOT) but the nodes as well then they could always perform the surgery post Tx.

So far so good.

Thank you for responding. I'm so sorry to hear of your struggle with such a little one at home. I too am a grandmother of two,5&1. I have a 24 year old who is married and the 10 year old b/g twins. My life has been for my family.

I feel so rushed in making this decision. Xmas is next Wed., and the kids are home for two weeks. I haven't told them yet. I don't really want to tell them I have cancer but I don't know if I can protect them or even if it is right to do so. The doctors and staff are focussed on the holidays. I can't believe the timing!

So many questions!!! I pray for peace and clarity.

Everyone around you is going to base their reactions off you. At least that's how it worked in my case. I held it together quite nicely, I think, and because of that, everyone else around me did as well - I made a no crying, no sympathy policy from the start. Your family will be stronger than you think and hopefully step up for you in this time so it is only right to let them know - just maybe not on Christmas day or anything.

As for what Brian said about the tumor board and multidiscipline team, I second that. I only got one opinion (and not from a CCC - I live life on the wild side, what can I say) but my ENT brought my case to the tumor board the day after my first appointment with her and she and my radiation oncologist were on the phone with MD Anderson several times discussing treatment plans, so I was very comfortable with the plan I was given because so many people had been a part of making it.

Hello and welcome to OCF.

My cancer became very aggressive. My pet scan lit up and I had 14 lymph nodes removed that came back clean. But, they were very large, it literally felt like I had marbles in my neck. My recommended plan of attack for my situation was surgery and then radiation but no chemo. I would have had chemo if my nodes came back positive. My tumor board was an ENT, MO and an RO...of course I saw an oral surgeon, a dentist an periodontist and my family doctor, not to mention second opinions...it gets busy, so take notes.

Make sure your teeth and gums are checked by a dentist that is familiar with possible radiation treatments...it might not hurt to get fluoride trays made now..it wouldn't hurt to start early. And if you don't need radiation--fluoride txs still can't hurt.

good luck and let us know what's happening

Hello and welcome to OCF. Please ask many questions and update your signature when you have time. It will help to answer your questions. There are many here who will help to guide you thru this with medical info and moral support.

Being a mom myself, I hope I can give you some helpful advice. First luckily your children are old enough to understand and are able to be helpful. Although they are young, dont underestimate their understanding levels. You will not get thru this without telling them you are sick. I know thats not what you want to hear, and believe me it sure wasnt easy to tell my kids. I cried and cried when I told them and saw the shocked look on their faces. Its a very hard thing to do, telling your children. Might want to delay it til after the holidays.

You didnt mention being married, or maybe I missed it, do you have a husband or significant other in your life to help you? Now is the time to start lining people up to help you. Even if it only to take your kids out for the day to the movies or to a friends house. Maybe do a load of laundry or grocery shop, babysit or pick up meds from the pharmacy.

It sounds like things are falling into place for treatment. Once the PET scan is done you will know the stage and get a better idea of how it can be treated. Being seen only by surgeons might not be the best approach. Surgeons do surgery, thats their job. If I had only seen surgeons then right now I would look completely different. A surgeon would have removed my jaw and reconstructed 1/2 of my face. Instead I did chemo and radiation. I did get cancer again and this time was surgery but only for a small lump, nothing like what it would have been.

As an example for you, my team of doctors is a very long list. I have an ENT who is also a surgeon, oral surgeon, radiation oncologist, chemo oncologist, nutritionist, prosthodontist, family doctor, regular dentist, and finally my hyperbaric oxygen wound care specialist doctor. They work together and consult to find the best treatment personalized for me.

Its a very scary time when you first start out. Try to relax and enjoy the holidays. Eat like crazy right now and dont worry at all about gaining weight. Hope this info was helpful to you.

Here is an article on todays CNN website. Although it is about a child having cancer, it could help you as a guide to talk to your children about it.

http://www.cnn.com/2008/HEALTH/12/18/ep.children.bad.diagnosis/index.html

I'm one of those rare individuals where my Head & Neck surgeon advised against surgery. He felt the mortality rate for me would be improved by not having surgery. I am an advanced stage tonsil cancer survivor, had radiation and chemo and I am almost 6 years cancer fee.

Your decision is one of the most difficult to make. You wouldn't be human if you weren't scared to death and many jump to the idea of "just getting this thing out of my body" as quickly as possible. Compounding the problem is typically you have to make these decisions in days. But there is more to it than that - quality of life issues factor in as well. What Brian stated about having a multidisciplinary team and tumor board is something that I can't emphasize strongly enough.

Staging and differentiation are major components of the decision making process - both by you and the doctors. Ultimately you will have to decide what weapons you want to employ from the arsenal to fight the cancer. My PET only lit up where the tumor was but they went ahead and radiated many different areas, such as lymph nodes since my RO knew that these were likely places for the cancer to show up, especially if it wasn't really detectable at the time of the scans and tests. They also bilaterally radiated the left tonsil as well. Having an experienced RO in H&N cancer is critical if you go the radiation route. Your best bet for this is at a CCC.

You are very fortunate that your dentist caught this. If it's an early stage a simple surgical resection may be all you need.
Get a consult with an RO and MO as well, preferably from the same institution and a CCC would be my first choice.

From your original post it sounds to me like you want to make as informaed a decision as you can and also be your own advocate. We are here to help you in that regard.

I would also recommend that you bring someone with you to take detailed notes of every word the doctors tell you. Record it if you can - ask permission to do that first.

All I want to say is CCC can be tricky too. I went to 4 Hospitas, 3 of them CCC . One told me I should have rads and chemo then surgery with a left neck dissection, one wanted to make what seemed to be invalid time for me. The one I chose did a dissection and removed part of my tongue on the left side. One of the local Drs called my hose and even sent 3 registered letters to contact him because my margins were too close and the OC would return. Was biopsied again at the one I had the surgery at and OC was there. He took another piece of tongue from theright side and said I needed chemo and Rads.I went to the Dr that had called me and he had all of my teeth taken out, got me rads and chemo and then put radiations seeed implants in my tongue. No fun at all but I am alive. Go for the gold mom of twins . We are all behind you and will pray for you.

I can certainly understand how difficult it is to be able to comprehend everything that you are going through but I would definitely get several professional opinions so as you can decide the best "plan of attack" that is suitable to you and that you are confident with.

Unless you have as much information as you possibly can from the professionals, there is no way that you can make informed decisions about YOUR future.

In my opinion, some surgeons think chopping up someone is the only course of action to take, but that is not always the case.

It is too late to go back once surgery has been done, so please make sure that you are confident with their plan of action.

Karen

Mine was Base of Tongue (BOT) I went to two CCC for opinions, they were almost identical treatment plans. They decided to do Chemo/ Rads and then see how things progressed after those treatments. The team (radiation oncologist, chemo oncologist, ENT) agreed on this treatment. If fact the RO was the "lead dog" . It was their opinion that expertly crafted Rad treatment with Chemo was crucial for success. The ENT was in complete agreement. After all Rads and Chemo I did have a modified neck disection after all treatments. This was a precautionary and if I remember correctly due to the size of the tumor. All clear.

I am not an expert, but it seems that treatments vary with the location and staging. I know it seems like there is so much information and it can be a challenge to comprehend. Howver asks questions when you are not clear. The people on this site are very helpful and well informed. The more informed you are the better questions you can ask.

Take someone with you to write notes, have your questions written down before yopu go see the Drs.

Mom,

First of all kudos to your dentist for finding your cancer. As a dentist, the lack of thorough oral cancer screenings being done in dental offices, makes me very angry.

You will see by my signature that I had left lateral border scc and a neck dissection. No chemo, no radiation. This decision was not taken lightly and was made at a CCC by me and a surgeon and a radiation oncologist together. I'm sure that you have realized by now, that almost no two people here were treated exactly the same way.

Some of the points made by others are well taken and I agree wholeheartedly. Surgeons want to do surgery, so a team of at least two doctors from different disciplines should be involved in the decision making. I also wonder why a bilateral neck dissection would be indicated in your situation.

Keep the questions coming, here and at the doctors and you should make sure you have at least another set of ears at you appointments. It's also a good idea to take a pad and pen or a recorder with you to your appointments.

Jerry