I was diagnosed just over 2 weeks ago with stage 2 SCC. Right maxilla, lesion is getting bigger and deeper. Had 2 teeth extracted prior to being diagnosed. Noticed changes starting end of February, so it took approx. 4.5 until I was diagnosed. Had consult yesterday with local surgeon, going to Philadelphia (UPenn) for consult with another surgeon next Monday. Huge surgery ahead. Lots of bone loss, sinuses are affected, PETscan clean but having nodes removed as precaution. Confused and scared. Just want it out of me and it never to come back. I'm 45 female, had lichen Planus since age 14. Smoked but never will again. Moderate drinker. Looking for success stories to encourage me. I'm a fighter and I WILL get through this. It just seems like when ppl hear you say you have 'C' it means a death sentence... This IS treatable, right???!

Welcome to OCF! Im so sorry to hear of your situation! We will help get you thru the next few months. We have been where you are and understand the stress and confusion you are going thru.

Your cancer was caught early (Stage II). This means you have a much better chance of survival. Seeking out the very best medical care you can is the best thing you can do, and get a second opinion too. Just remember... surgeons cut, radiologists advise radiation. Once they cur and remove tissue, they will always take a wide margin around the tumor. They can not replace what they take, at least not exactly.

Im not sure if where you are going is a comprehensive cancer center (CCC) or not. I know Fox chase, sloan Kettering and Johns Hopkins areBut here are lists of both CCC's and the top US hospitals.



CCC List

US News Best Hospitals List

People will change when advised of your illness. Not everyone can handle it and some will run for the hills. Others will surprise you and be there thru thick or thin. Try not to take it personally, its them NOT you! They have issues facing their own mortality which makes them afraid of your situation. Anyone who does offer their help, tell them when the time comes you will let them know what they can do. Write down their name and number for later. You never know how things are going to turn out so its always a good idea to have some back up helpers.

Best wishes!

Hi Dawn - welcome to the family. We all share your problem, either having the "C" ourselves or as caregiver to someone who does. You will get the support you need here, from people who understand what you are going through.

Get ready for a whole new "normal" in your life. Many things have already changed for you and many more will change along the way. Just one of those things is having to get used to everyone you know now looking at you in a new and different way. They don't know cancer, so their ignorance is what makes them think it's a death sentence. Their reaction is completely predictable and understandable. You don't have to educate them, that would take way too much time and effort on your part. But, what you can do is to show them that this disease is not getting the best of you. And, the way you do that is by maintaining a cheery, upbeat attitude; as close to the old you as possible. Continuing to stay busy and active in the things you like instead of staying at home, inactive tells the world you are beating this thing.

I was lucky, I had very few symptoms during treatment, so it was easy to be upbeat and to continue doing all the things that I normally do. I really didn't have to stop anything. My friends were amazed that I could stay active through treatment. Again, their ignorance made them assume I would be bed-ridden and at death's door the whole time. They were shocked to see it isn't that way for everyone.

But, it is that way for some, and if you happen to be one of them, so be it. You have some rather complicated surgeries coming up, so recovery for you will be harder than it was for me. But all that means is you just have to fight a little harder. You say you are a fighter. Your mettle is about to get tested. You are about to find out what you are made of.

Some days will be easier than others. When times get the hardest for you, that's the time to get on the forum and write, even if you hurt and don't feel like it. Talk about your problems, talk about your pain, talk about your friends, both the ones who are helping you and the ones who aren't. We have all had friends of both types. We are here to listen and to respond. Maybe most important of all is we have traveled your road before you, so we know what you face.

A line from an old movie pretty much sums it all up - "put on your mask, this is gonna be a gunfight. "

Let us hear from you,

Tony

Glad you found this site. We have posters that have been there and done what you are about to do and our main goal is to get you thru this treatment and on the road to recovery. Please ask as many questions and post as often as you wish.

Hi, Dawn. My cancer started with lichen planus too. I've really suffered because my dentist and an oral surgeon assumed the lesion on my tongue was just lichen planus ... for years. Too late for regrets now though.

In spite of the surgery and radiation being a real ordeal, surgeons and radiation oncologists get people through the process with amazing skill and technology.

This site has plenty of amazing survival stories to inspire you and lots of kind people who will give you support as you go through the treatment. Some of us have even posted from our hospital beds:)

Wishing you well,
Maureen

Welcome Dawn! The road ahead can be a bumpy one, and most of us have driven over the same bumps. Share what you like, ask what you like, we will give you all the support we can.

Hi there. Mine had lichen planus as a dx but there was an area that was concerning and yes it was SCC. you're in good company here. Do the surgery and based on the involvement I would be thinking they might want to radiate after the pathology on your nodes comes back. Hugs and good luck.

Hi Dawn, yes I was diagnosed in my 30's with lichen planus for years looking worse and worse. Then in 2005 I got SCC on the floor of my mouth, had the floor of my mouth removed and full neck dissection. In 2009 it returned on top of my tongue, had tumor removed and did radiation. Five years now no cancer but teeth are decaying and had three teeth removed. No Cancer, but very slow to heal. So hang in there, if any questions, I am here to listen, welcome, Michele

Christine,
Thank you so much for your response. The hospital and surgeon that I chose (University of Pennsylvania)are not on the CCC list, but are on the US News Best Hospitals List. Ranked #2 in PA and #1 in Philly, Nationallly ranked #11 in cancer. I'm feeling much more confident now.
Yesterday impressions were taken for an obturator and was consulted on pre-radiation oral care. I'm having an MRI of the orbits and brain tomorrow. My PET scan was clear. My nodes are being removed as a precaution. Your history is quite humbling... you sure seem to have been through a lot. I'm very happy for you that made it... you must be a tough lady! and I noticed your age... that, in a strange way, makes me feel so not all alone.

Hi Tony - Thank you so much for your response. I can tell already this forum is going to be a saving grace. I am currently maintaining my upbeat attitude. I have been described as "bubbly"... and besides the 5 days of crying and being in a state of shock, I am holding my head high and carrying on. My surgery should be taking place in about 3 weeks. I was fitted for an obturator yesterday and have 2 MRIs tomorrow. My PET was clear but having nodes removed as precaution. My surgeon is suggesting 7 weeks of radiation. I have been educated by many on the wonderful world of radiation and my daughter starts school for Radiation therapy next week. In no way has anyone sugar-coated it, so I have a pretty good idea of what could lie ahead. I have my wonderful support team in place. I havve weeded out the ones that will truly be with me every step of the way and the others that make me feel depressed/helpless or they pity me. There are a few other "friends" that have fallen by the side, breaking dates, not keeping in touch since the diagnoses and I'm alright with that. I only need the positive in my life right now! Thank you for being one of them.

Dawn --

Just FYI, HUP's Abramson Cancer Center is indeed on the list of NCI-designated CCCs. Several OCF members have been seen there.

Wishing you all the best as things move forward.