The last 3 weeks have been a roller coaster ride ever since my first appt. with the ENT. I had a gut feeling that this was not going to be good. My husband Joe, and I have been doing a lot of research online about base tongue cancers. Knowledge is power! I found a lump in my neck about 2 inches below my R. ear the middle of April. I got an appt. right away with my G.P. in Jacksonville, Fl. He sent me for an ultra sound and, after viewing that, ordered a CT scan. We were leaving in 2 days for St. Croix and our wedding. The imaging facility couldn't get me in that soon. Two days after we returned, the movers came to haul our stuff to Hendersonville, N.C. So no opportunity to get the scan done at that time. I was told by my dr's office to just get it done as soon as I could. No real sense of urgency from them and, as a matter of fact, I was sort of led to believe this was a "complex cyst". Didn't sound too scary. Due to several clitches in getting our insurance changed from coverage in Fl. to N.C., I wasn't able to get the CT scan done until June. Then to find a doctor on our new plan took more time. Finally an appt. on, of all days, July, Friday the 13th! After many questions (have you ever smoked, NO!), sticking his fingers down my throat and looking at the CT scan, he looked me in the eye and said, this is not a cyst, this is a tumor. You all know what a shock that is. I was thinking, see the doc, get the cyst drained, go home and pack for our w/e camping trip. Instead I had an hour drive to think about how I was going to tell my husband. I had the impression right from the start that even though this doctor was trying to be objective, he was sort of giving me the "preparation" speech. My poor husband was shattered. I had my biopsy done on 7/18 and breezed through that. Just a couple of Tylenol and back to normal food in one day. Actually went for a 2 mile power walk the next morning. I feel great! Today was the big day. We went together to see the doc and finally find out what we're dealing with. I was very prepared for the bad news and handled it quite well. I had questions and knew that falling apart wasn't going to do any good. I think that Joe was still harboring hope as he looked sort of pale and shaken. I felt sorry for the doc. This guy probably just sees kids with ear and nose issues. Here he's facing this very healthy looking woman who has had no risk factors, actually somewhat of a health nut, and having to tell her she has a "large" cancerous growth on the back of her tongue. We all know "large" is not a good thing. It's somewhat hopeful, but not positive, that this has not spread to the lymph nodes. That sure would help. I'm being referred to a facility in Charleston, SC. where, this doctor told me, he would go if this was him. The next best place according to him, is in Houston. We did read about the Houston facility and it sounded top notch. He had already spoken to the doctor he's referring me to about my case. Just waiting for the call to set up my appt. In the meantime, I'm going out to the backyard to shovel mulch. Sorry this was pretty long, but I needed to get this off my mind so I don't just freeze up here. Joe and I have already decided that we can't let cancer be our life. I would love to hear from anyone with advice that they wish they had had as they started down this road. As a relative newcomer to the Asheville/Hendersonville NC area, it would be great to find a buddy (or more) to share with.

Hi, Katey, Glad you have found OCF as youall will get alot of support here. As soon as you have a treatment plan sorted out, please post it so we can keep up with you. In the meantime, remember to take a notebook [ or a tape recorder] with you to all appts coming up so that one of you can write down what is being talked about. Sometimes we get overloaded with information at the beginning and some of it sounds like a foreign language. Ask questions about anything that you don't quite understand at these early appts. Congratulations on your marriage and both of you stay positive. Amy in the Ozarks

Kate,

If I were you I would also get them to test your slides for HPV as I would bet that's what caused your cancer which I will assume is Squamous Cell Carcinoma. Has anyone done a Pet Scan? Has anyone mentioned nodal involvement?

David - with respect for your advocacy and passion that you have developed for the cause, not to mention your regular aid to others here, I have to ask why you always ask each new person with a positive diagnosis to get tested for HPV. In the future treatment for HPV positive tumors may become different, but it is not now. What are they going to do with the information that they are or are not owners of a positive tumor? For me it wouldn't change anything, I would still retain the same fears and apprehensions, have the same questions about the treatments, and all that goes along with this disease. If you are recruiting people to send tissues to a tissue bank like JH or whatever for future study (they are collecting samples with appropriate demographic data) I would understand that, but otherwise I'm not sure I understand your reason.

I had a long discussion with Dr. Gillison today about many things. Part of this was the social implications of being HPV+. Of course she clearly states that we don't even know for sure if this is a virus that persists, goes dormant, is so ubiquitous that people are just constantly reinfected with it etc. We don't know if it can be transmitted by casual contacts like kissing. All this question might do is give them a why me answer, and even that when it comes to being positive for the virus, still leaves the question... why me?

Sorry to hijack the thread. Please feel free to email me or answer me in another area. If I have missed something important, that newcomers should understand please post it here.

Hello Kate,
I'm now recovering from treatment after a diagnosis of scc of the tongue in November of last year. I am now 37 and also felt healthy and was deeply shocked to find I wasn't. My tumour was large and had in my case begun to spread into the lymph.
I won't pretend that it has been easy or that, as a family, myself, my husband and our daughter haven't faced some difficult times over the last few months, but I can say that the surgery and subsequent treatments were 'do-able'. Now I am feeling great and the light I wasn't sure I could see back in the dark days of winter is most definitely shining every single day (despite the worst summer weather we have ever had here in the UK!)
So many people, family, friends and here helped me to face things, to answer questions, to stay positive (this latter one seemed so difficult for the first few days, but I worked hard to turn that around and I really feel it helps so much). People will advise you of many things and sometimes you'll feel unsure about their advice, so I suppose I would say, go with what you feel, but make informed choices:) Oops, advice again! - The advice from Amy about writing things down is excellent though, I had to get my husband to repeat so much to me after those first appointments, as my mind was whirling.
Wishing you the smoothest of paths back to full health.
Georgia

Hi Katey,
Welcome to the board. You didn't say what facility you are being referred to. Is a Comprehensive Cancer Center. You can find these in the Resource Section of the Main part of this web site. Be certain when you meet your new doctors to point out this was first discovered in April. You don't want them 'dragging their heels' on a treatment plan. Take someone with you to all the appts because it is hard to digest all this when it is so scary and new. Keeps us posted.

Take care,
Eileen

"I felt sorry for the doc. This guy probably just sees kids with ear and nose issues. Here he's facing this very healthy looking woman who has had no risk factors, actually somewhat of a health nut, and having to tell her she has a "large" cancerous growth on the back of her tongue."

Katey, Because the small city I live in has a hospital with radiation medicine affliated with a cancer center, I didn't have to go to another cancer center for treatment. But my ENT here, though he's had some special training in oncology, also has a bread and butter business in putting tubes in kids ears because this is a small city--way too small to just specialize in oncology. Still I think any ENT that has practiced for a while has had experience telling people they have oral cancer--including young healthy looking people with no risk factors. Especially these days when people meeting that description are making up more and more of oral cancer patients/survivors.

Anyway, you have found a place here whee you can get a lot of your questions answered as you go through this. I agree with Eileen you need to point out to the docs you se that this has been around for a while and get moving on a treatment plan quickly.

Nelie

thank all of you who responded so much for your comments. I can't tell you how much it means to me to know there are people out there like me who are willing to reach out to me. The ENT who diagnosed me and his office staff were absolutely great. So compassionate and caring. I thought the young nurse who was with us when he told us was going to start crying. Before we were out of the hallway, the receptionist was on the phone to the Hollings Cancer Center in Charleston, S.C. We've looked this up online and are very impressed. My dr. said that if this was happening to him, this is where he would want to go! I got a call this morning, spoke to a very efficient nurse who has set me up with several appts starting on Aug 5. She said she would work real hard to see if she could get all the tests, etc done in 2 days. She told me about all the doctors that would be involved and made me feel part of the "team". I really liked that. This has given me my first glimmer of hope. At least I feel that there are people there that will do the best they can to help me. I don't really know just what my diagnosis is. I see on everyones posting that they have this down. I do know that there is a "large" tumor on the base of my tongue and a lump in my neck. Not good. I'm actually feeling calmer now than I have the last 3 wks. As you all have experienced, not knowing is miserable. Once again, if there is anyone in the Hendersonville, NC area that would like to get in touch you can email me directly at: [email protected] Know that there is one more person out there sending good thoughts your way. Katie

Kate,
does your story sound familiar! I too went to the ENT scared to death of having a big old needle stuck my throat to drain an abcess and fainted, yes fainted, when he rather bluntly got angry with me for wating so long to come in and that I had a very advanced cancer and get my affairs in order. I visit his office yearly just to remind him that some some people actually DO survive this (and go on to lead productive and supercharged lives). I attribute my survival not to him but because I went to a comprehensive cancer center like the one in Houston (which must be MD Anderson) GO THERE! Get the best care you can. Base of tongue cancer is tough and aggressive. No node involvement is great - you may get away with radiation and chemo only. I handled it much like you did and became a "doctor". Didn't sleep for weeks while I researched every aspect of treatment and what options were avaible. Drove the doctors nuts with highly technical questions but I am alive almost 5 years later. It will be tough sledding for a while but you can get through this. We're all pulling for you.

There is a list of CC's and CCC's in the resources section of the main page page. Check out the local CCC or CC's site and make sure that H&N cancer is specifically mentioned as one of their specialties. Sorry Eileen I just duplicated your excellent advice.