First Time diagnosed with Stage 1 SCC of tongue What to expect need help

Trust in your cancer team, lean on them. He's right pre-treatment we start we think a lot about what might be and worry-it doesn't help. Try to keep your mind off it and stay busy and take one day at a time. Like Dave said You're going to get thru this all right and live a long life. I had what they call a nurse navigator I was assigned to which was nice she was my go-to first call if I wasn't sure of something or needed help do you have a navigator or something similar. I had throat cancer in 2013 and went the whole routine for it 35 rads and 5 chemos and just last year I got a spot on my tongue-left front-that was sore and did not get better around May and a biopsy proved to be cancer. I had it operated on by my ENT and he removed tissue till I had clear margins. A small amount of tongue removed, maybe 1/4 at most. The worst part is your tongue looks awful till it heals. I quit looking at it and if it wasn't sore which it wasn't I figured everything was fine and I was going to my ENT regular and he was keeping an eye on it. I did call my ENT at one point about some concerns but was assured for this operation everything was progressing as normal. So take one day at a time, don't worry it doesn't help a thing, don't over think this, lean on and trust in your cancer team and trust in God for his many Blessings-Take Care

My husband had stage 1 tongue cancer. It was on the underside of his right tongue. It was also stage 1. That was back in 2015, and he is doing amazingly today. I hope for that for you too. He had a partial glossectomy and neck dissection too. During surgery, they made sure they got clean margins on the tongue tumor and took nodes. They will cut out enough tongue to get clean margins- my husband did not need a graft to repair the tongue. The nodes were tested for cancer after surgery- they were all negative (we got results in a few days). My husband spent like 2 days in the hospital and then came home. In fact, we went on a cruise (preplanned and with our doctor’s blessing) 3 weeks later before starting other treatment.

The testing on the tumor showed that it was HPV negative and that it had perineural invasion. If not for the perineural invasion- my husband would have been done treatment. But because of that and because my husband was only 40 at the time, they recommended chemo and radiation. That was tough but my husband made it. He did have a feeding tube put in before starting chemo and rads, but he had it taken out just 1 month after treatment ended. You would not know my husband ever had cancer if he didn’t tell you.  Stage 1 cancer especially is not a death sentence. The people on this board are amazing and will help get you through it. Sending hugs!

Sabrina23 said:

Thank you Swopoe a couple of questions

God Bless you and Your Husband my prayers are with you both.  I am so glad to hear the news that you cannot even tell he had cancer - can I ask you how long did he have radiation for - was it like a week??  What about chemo?  Was that like a week?  I just wanted to be able to guage the time on treatment..... did he have any bad side effects from radiation and chemo?  I don't want to lose my teeth I am so scared.... I don't want to lose my hair.... I don't know what to expect any further details you can share woudl be much appreciated.  My CT scan they did of my neck came back clear?  Is that good news?  Will it have any effect on my pet scan like if your CT scan is clear your pet scan will be too?  I have my pet scan tomorrow and surgery on June 3rd they said they are doing graft of mine from my thigh.... I pray I don't have to have one though since your husband did not - that gives me hope.... your post is really helpful and I apprecaite you sharing the information with me.  Sending hugs as well. 

He had radiation for 5 days a week for 6 weeks. Radiation itself is very quick. On days my husband had only radiation, he went to work afterwards. He had chemo once a week for 5 weeks. that is more of an all day process with hydration, etc. I went with my husband to each chemo session. Sometimes, he would do work on his work laptop, other times, we would watch Netflix on the iPad, or he would nap, or we would talk or read. One other day a week, he went in for a hydration session via IV. That was a few hours. I went to those too and we just passed the time. My husband had no major effects from the chemo- very minimal nausea and he only lost a little hair at the back of the hairline on the back of his neck. All of his numbers were good for all chemo sessions (they check bloodwork before each chemo to make sure you are ok to proceed). Th side effects from radiation are dry mouth, lack of saliva, trouble eating and swallowing, sore and red scarred skin in the radiated area, tiredness, etc. they vary from person to person, but there are remedies. My husband lost no teeth- he had fluoride trays made before he started, and he still uses them daily.

As for the scans, my husband had scans before surgery like you, and it is good they came back clear. But until actual pathology is done on the nodes, you wont know if they are truly clear or not. Stage 1 at this point means a small tumor, as someone else said, and that is great. If the nodes are really all clear, you will stay at stage 1, which will be awesome. Just hang in there and don’t get too far ahead of yourself. Part of cancer is the waiting. It stinks, but you have to get used to it. Hopefully everything goes well with surgery and that will be the end of your treatment.

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