Hi, I am new here too. I am surprised to see so many people here dealing with what I have been dealing with for years. I found this site thru MD Anderson. Ok... for my history I am into my 8th year of remission for SSC of the base of the tongue. I was 39 at the time of DX.. It has spread bilaterally to the lymph nodes. It was a t-3 and N-2 and I was told it was a class 4 andhad little chance of survival. They wanted to do tongue removal and neck ressection and I said no at first and my oncologist said we could always do that later.. so I had three cycles of inpatient cystplatnum and 5FU and then had 49 radiation treatments. I have alot of side effects of the treatment.. but all in all .. everything was well until the last three months when I lost my voice. My normal ENT missed a tumor but I went to MD Anderson and they removed a two inch by one inch section of my laynx. I am unable to talk right now and don't really know if and or when I will talk.. that is not my concern. I feel lucky I went there and also feel lucky that is wasn't a spread of the original cancer. My question for any of you that may know is .. I was told this is a radiation nodule. Can any of you give me any more info on that? Is that another squaomus cell cancer? The surgeon has me returning in a month for a re check but I of course am trying to find out all I can now. They say I am not going to have any chemo or need further surgery unless I get another one. Anyone else had one of these? Thanks.. sorry to say hello and ask a question all at the same time. The few posts I have read so far have really inspired me to what a strong group of people this is. THanks

Welcome, Beth. You are one tough survivor and I mean that in the nicest sense. You may not be able to talk right now, but we hear you loud and clear. I don't have a clue about radiation nodules, but I am sure every one of us who has had radiation is interested. I will see what I can find out, and you can bet someone here will have some information. I am so glad you came here. We need to have 8 year survivors among us!
Joanna

Hi Beth, I am in awe at your story. As Joanna said, you ARE one tough survivor. I had almost the same treatment as you and I am also concerned about long term effects from the radiation. I used to work for Siemens Medical labs which manufactured medical linear particle beam accelerators (ironically the same brand I was treated on). We knew at the time (back in the 70's) that in some cases, radiation can cause cancer. Whether or not it is SCC, I don't know, but I would think not. It's probably a cell that was mutated by the radiation that the bodies immune system couldn't take out and it grew to be a tumor or nodule. They used to call this the "oncogene theory". I really don't know if this is valid science today. Maybe some of the doctors on the list can elaborate.

Hi and thanks for the welcome. I have never even met anyone with my kind of cancer before. When I got the Dx.. I had a huge swollen lymph node on my left side. I went thru the usual misdiagnosis.. but not real long.. I finally called my neurologist. I also have MS. He said it had nothing to do with the MS but sent me to his ENT.. and that is where I had a needle biopsy. It came back necrotic so I had to go back for another.. and when I did, it was blown on the other side. We were all thinking it was lymphoma.. and so surprised to see it was squamous cell ca of the tongue. They did several biopsies of the tongue until they found it was midline at the very back where the tongue connects to the base. The surgeon recommended surgery.. and it was all just a blurr... I remember telling them.. Hey.. I already have a disease.. my plate is FULL!! I have mulitple sclerosis.. how can I have cancer? I am only in my 30's?? I might add that I rarely smoked.. and hardly drank because of the MS. DIdn't matter..I had to deal with it anyway. Then I got a stoke of luck and was sent to an awesome oncologist. The surgeon had told me I had a 3-5 % chance for 5 years IF I had surgery. My oncologist told me that really what that meant was.. Three to FIVE people out of a hundred LIVED. And even if it was one percent.. he was going to save me. I was young and healthy.. and I was going to be the one that made it. Well that was all I needed to hear!! I jumped on that like a liferaft and started to paddle. They put me in the hospital for the chemo.. 13 days in and 13 days at home. I lost my hearing.. or rather I should say the BUZZING began on day three. It sounds as loud as anyone talking. I thought I would go mad with that. My dad talked with the oncologist and he told him that the chemo might put my MS in remission.. so everyone was grabbing onto that too! I had a fiance who married me the day before my first chemo. My 16 year old son came up to the hopsital every night to have supper with me ( I watched.. they ate ha ha ) On the second cycle I asked them to knock me out. I did a twighlight sleep.. and it helped so much.. it was easier to take and to this day I don't remember all that much . I did alot of meditation..I thought of the chemo as an army of soldiers marching down the line.. fighting the cancer cells. I got into it sooo much I could even hear them shooting and sending off grenades.. I pictured every single part of my tongue and spent hours fighting it mentally. I had a son who grew up playing army.. and he always played with sounds and all the guns.. so I could do this without alot of effort.. I could hear my son in my head shooting. Man.. I never told anyone this stuff before. Anyway I realized.. it wasn't enough to just KILL it.. I wanted it out of my body. So I pictured a big backpack vacuum on me.. and I spent all day sucking up dead cancer cells. And I mean to tell you I spent all day doing this.. I pictured every single part of that tongue and my neck. I was real upset when my hair didn't fall out right away.. everyone else was worring about being bald.. I was worried that if it didn't even kill the hair.. it wasn't working. The nurses showed me tapes of Bernie Siegal and he is totally into the power of positive thinking. And it helped me soo much. I figured that this battle was up to me and I wasn't about to lose. I never once thought I would die.. not from cancer anyway. I decided that I needed to be around for my family.. my son.. and especially for my grandson who I knew was coming one day ( and I am glad to say he is now here and worth waiting for! ) I figured radiation would be a piece of cake compared to the chemo and boy.. what a surprise that was.. I had NO CLUE what I was in for.. but that is another book. I am not sure of your rules here.. but I feel like I just found a precious gift. No one knows what all I have really dealt with. Like I said.. I have never even met anyone with this kind of cancer.. I mean this in a good way.. but I feel so lucky to have found you all. I have so much to tell you about surviving.. and hope and dreams. I have started reading the stories here and starting to realize how absolutely incredable it is that I didn't have surgery. My origianl dr. always said I was a miracle.. I just had nothing to compare it to.. I have been on this journey alone.. The only other cancer patients I have met were at support groups and they all could not understand what mouth radiation was like.. 49 treatments was pure hell. If I go on too much please stop me.. I can't speak so I guess I am rambling with my fingers. So NICE to meet you all. I am just sorry there are so many of you.. I wouldn't wish this on my worst enemy. Beth ps..

Wow! My dear lady, you can serve as a shining beacon of hope for every person who needs one. WHAT a fantastic attitude and sense of humor you have! I, too, did some mental image stuff, and have told no one, but I completely understand. Whatever helps is allowed (grin). I hope the chemo did put your MS in remission. That would almost make it worth the price, yes? You come back often, Beth. I think those who are just facing diagnosis have a great need to hear from people like you. I repeat: Wow!
Joanna

Hi Joanna.. thanks for the response. No the chemo only shrunk the lymph nodes to a certain point and then no more so I did 49 radiation treatments. 39 regular and ten booster. The whole time I had radiation.. I had no idea what to expect. I had some very difficult times. About day 13 was the beginning of it all.. everything had started to taste like cardboard. Then about the 13th day things literally heated up. Sores on my tongue, roof of my mouth, lips, everywhere. I would lay down at night and cough. and cough and cough. Coughing led to vomiting and it only got worse. I tried to figure out how to eat. I was starving.. and watching my family eat. I remember I couldn't even cook for them because I couldn't taste the food and see if it was right.. I never even thought about that at the beginning. I kept choking so my sister and I figured out if I used a straw, I could suck down a sip of Insure and bypass the tongue. It took all day to get down a little can. I sure don't like remembering these times.. but the hardest part was no one knew what to do. My radiologist was a real jerk. I went down to 90 then 85 pounds.. I would go in crying.. I was bald, lines drawn on my neck. bleeding. Thank God I had a good friend for a dentist.. He came to see me and brought back some numbing gel for my mouth. I remember it burned like hell fire to put it on but it lasted almost a half hour so I would sit and look at the tube and decide if I had the guts to put it on. I usually did. They gave me nothing for pain.. I couldn't swollow it anyway. But the outcome was it killed the cancer. No one wants to do any of the things we have to do but it KILLS THE CANCER.. so there you have it. One of the hardest things was the guy in front of me in the radiation line didn't come one day. I usually could say an our father, hail mary and a glory be and it would be over.. this time it lasted for three sets.. I got nervous and started to pound my legs on the table.. they came in and I looked up and his plate was up on the machine instead of mine.. they had lined them all up and when he didn't show up, no one pulled the plate. I started to cry. They told me oh no..he has prostate cancer. and when I got home I had burns all over my back. I tried to tell the dr. the next day and he called me'confused'. They had to stop treatment for almost a week because I got so sick from that. Eventually I ended up at 72 pounds with all my clothes on and at the ER.. my dad took me in after he came to visit. My mom demanded a feeding tube and they said they couldn't do one at this late time. They called a priest and did last rights. I told my mom I was ready to go.. I couldn't take the pain. Then the er doc put some meds in my port ... and I finally felt like I might be able to hang in there. AMazing what drugs can do. He couldn't believe that I had done it without meds.. but I couldn't swollow . He gave me some syrup but it also burned. Everything has alcohol in it! Anyway.. the radiation put me in remission. My lastest deal here now eight years later is a radiation nodule.. and they told me that 80 % of people who have radiation get them between 6 months and nine years. That is what I am trying to learn more about. I am just amazed to find people who had this cancer after all this time. I went to MDACC to have it removed and I could not believe how many people were there. I had an excellent surgeon and am now one week post op. I feel so very lucky to be home.. when I left here I had no idea what it was, what they would do.. or when I would ever come home. I feel very lucky indeed.. you think you have trouble until you see an entire cancer hospital with everyone doing battle and having it worse than you. I have to go back in a month and I really am so glad I went there at all.. Beth

If anyone finds out what a 'radiation nodule' is and how they determine it is one, I would sure like to know. I am now a total laryngectomee thanks to a tiny tumor on my larynx in the only spot they couldn't get a laser that showed upon 4 years after I had radiation for an unknown primary. I have always wondered whether or not this might have been caused by the radiation.

Eileen