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