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

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Sabrina23
Sabrina23 Member Posts: 103 Member

I am 57 years old female - first time diagnosed with Stage 1 SCC of tongue.  I am having a partial glossectomy and they said they are going to reconstruct my tongue with a thigh graft.  I will have a feeding tube and neck dissection as well to take out lymph nodes.  Can anyone tell me what to expect - do the tubes stay in for a long time? How soon can I swallow on my own and start eating soft foods?  Does anyone have any experience with that I am trying to prepare myself for surgery on June 3rd.  I am going to University of Miami Hospital.  How long do you stay in the hospital for is it like a day or two?  Do you come home with the feeding tube and neck tubes.  My twin sister is scared and Mom on what to do with my aftercare they are worried they won't be able to handle the situation and manage the tubes and such.  Will I be able to swallow?  Will I be able to talk? Can someone let me know on their experiences in going thru this for first time.  Is Stage 1 catching it early? Do you I have a good prognosis.  I want to live a long normal life.  Do you think I will need radiation? I am so sorry for asking so many questions.  My mind is just so scattered with all kinds of thoughts.  I read on internet life expectancy is less than 5 years and it is scary reading such stuff....is that true....I don't want to die.  Will I come out of the surgery okay? Wil there ever come a day that I would be able to have a beer or glass of wine?  Or should I abstain from alcohol completely? Any insights to anything I am mentioning woudl be much appreciated.  Will they cut out alot of my tongue?  Will I be disfigured? I am so worried.  Is having tongue cancer a death sentence? Will the pathology of my lymph nodes be done in the opertion room?  Will they know right away if it is negative or positive? I want to know after surgery what the neck dissection determined or do you have to wait for results. I hate waiting it is excruciating.  I have a pet scan scheduled for next week with barium swallow test as well.  Is this all standard procedure? 

Any insights anyone can share with me would be much appreciated as I pray for everyone on this board.  I know they are guardian angels. I have a strong faith in God and want to be 100% cured.  Have them cut out the cancer and that be it.  I just want it over and done with.  I am sorry for writing so much but my thoughts are many and my concerns are great. 

 

 

 

 

 

Comments

  • Logan51
    Logan51 Member Posts: 465 Member
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    Sabrina23

    Stage-1 is catching it in the earliest stage- which is good. My C was NPC- not the tongue, though the Rads did a number on my tongue.

    I had the old fashioned G-tube, which I used for some 3+ months. When you can get the nutrition you need by mouth you will no longer need. Op. may have you in Hospital a while, but any Rads and/or Chemo is outpatient on daily basis. I kept my G-tube for 15 months, just in case, and got rid of due to monthly flushings. Was not that big of a deal for me, but do know women have a more unpleasant time when they are first installed- suspect it may have to do with body differences between the genders.

    A word of advice: take it easy. Your C-team will help you all the way thru this. You are, in fact, experiencing the worst of times we all go thru: between diagnosis and start of tx. Nothing to do but worry, so to speak. You're going to get thru this all right and live a long life. Believe, Sabrina, and it will be so. Just be open with your C-team on how you are doing/handling what they are doing, and they'll do everything they can to make it tolerable. And at stage-1= very few on this forum have been able to say their's was found that early, and all wish their's was. You've just come upon a bump in the road of life, Sabrina, which will take you a little time to drive over.

  • wbcgaruss
    wbcgaruss Member Posts: 2,308 Member
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    Sabrina23 I'm With Dave K on This

    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

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
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    wbcgaruss said:

    Sabrina23 I'm With Dave K on This

    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

    Thank you Dave K and WBCGaruss

    Thank you both my heros for sharing your experience and insight with me.  I don't honestly know what I would do without these boards and the people helping respond to questions like yourself and Dave K.  God Bless you both and keep you in his care. I am full of questions and concerns as you can imagine I am sure.  I am sure I will be writing more so please stay with me and keep my motivated.  I want to live a long long life with my twin sister and my mom.  We are 3 live together and my twin - we work together always have been together.  I am struggling and scared but people like you give me hope.  Thank you again. 

  • swopoe
    swopoe Member Posts: 492
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    My husband had stage 1 tongue

    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
    Sabrina23 Member Posts: 103 Member
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    swopoe said:

    My husband had stage 1 tongue

    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!

    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. 

  • swopoe
    swopoe Member Posts: 492
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    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

    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.

  • OKCnative
    OKCnative Member Posts: 326 Member
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    I'll be 2 years post

    I'll be 2 years post treatment in Sept. for stage 3 base of tongue SCC HPV+. Simply put, the treatment is hell. On a positive note, it's a relatively short treatment of usually 7-10 weeks. Your mind has a way of erasing that time too. I remember I hated it. I remember the tears, but I also remember why I continued to fight. Best of all, the time is really insignificant when compared to how much life it affords you when it's all said and done.

    I was back to basically 100% within weeks of treatment ending. I just spent this last weekend working in the garden, tending to my bees and I'm back in school just to check that off my bucket list.

    I credit my ability to get through treatment and recover so quickly because I educated myself on this disease, I focused on the positive and I found humor in every step along the way.

    My office even made me a "Happy Cancer Cake" and catered Tongue Tacos for lunch as my 'last meal.' Cancer doesn't define you, you causes you to give pause and re-evaluate what's most important.

  • OKCnative
    OKCnative Member Posts: 326 Member
    edited June 2019 #9
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    I'll be 2 years post

    double post