Scc in Gums

Im 22 years old. Diagnosed with SCC in my gums. Doctors did surgery and i was doing pretty great. They couldn't decide if it was stage 2 or 3. Recommended radiation But didnt require it. I started radiation but since i started getting symptoms of chemo patients the doctor said that was very unusual not normal. I want to quit it because I really think its unnecessary to put me on a feeding tube because I have a yeast infection in my mouth and irritation from the radiation at the top of my mouth which wont allow me to drink or eat. I mean the substitute doctor told me that if i dont get radiation that my cancer is going to come back stronger and painful and that Im going to die a horrible and painful death. those were her exact words too. I know radiation helps but sometimes it doesn't. I'm wondering if i should completely stop or find another radiation doctor because i dont know what to do anymore. It hurts so bad. I have my child starting school soon and dad works and all my family works. What am i supposed to do? I really re to know if their are survivors who didnt take radiation? Or anything. Please help.

Comments

  • Jazyecm
    Jazyecm Member Posts: 5
    ^^

    I forgot to mention that i had a petscan/ MRI/ 3 biopsies done before radiation to make sure their wasnt any cancer lingering around and they found nothing in my lymph nodes or anywhere else on my body.

  • wmc
    wmc Member Posts: 1,804
    WOW, I just find that so hard to hear.

    First I will say i'm sorry you need to be hear, but welcome to the group. Now I am not a doctor, but I can not write what I would have told that doctor, and I would report the doctor to the medical board with a formal complant.

    For any one to say,"the substitute doctor told me that if i dont get radiation that my cancer is going to come back stronger and painful and that Im going to die a horrible and painful death" is full of s*#@ and needs his butt kicked and his medical license revoked.  Please get a second opion. I had surgery and was told they got it all and they do not recomend radiation as they feel I don't need it. If I do want it they will ste it up for me to have it. I asked my surgen did he think I neded it? He said NO, so I never had it. I am 64 and smoked for 42 years 1 1/2 packs a day, so my odds should be good to have it return you would think. They are 75% that it will NOT RETURN. Now if I did continued to use tobacco my odds would go up to about 90% it would. I am almost two years out and there is no sign of it returning. NO doctor should ever talk to you like that. I would be so mad you could see steam coming from the top of my head.

    Get a second opnion and see what they say and you can and should get a copy of your PET/CT scan. They will put on a CD for you and keep it and make a copy to take to the new doctor. Best of luck and just take a big deep breath.

    Bill

  • hwt
    hwt Member Posts: 2,328 Member
    wmc said:

    WOW, I just find that so hard to hear.

    First I will say i'm sorry you need to be hear, but welcome to the group. Now I am not a doctor, but I can not write what I would have told that doctor, and I would report the doctor to the medical board with a formal complant.

    For any one to say,"the substitute doctor told me that if i dont get radiation that my cancer is going to come back stronger and painful and that Im going to die a horrible and painful death" is full of s*#@ and needs his butt kicked and his medical license revoked.  Please get a second opion. I had surgery and was told they got it all and they do not recomend radiation as they feel I don't need it. If I do want it they will ste it up for me to have it. I asked my surgen did he think I neded it? He said NO, so I never had it. I am 64 and smoked for 42 years 1 1/2 packs a day, so my odds should be good to have it return you would think. They are 75% that it will NOT RETURN. Now if I did continued to use tobacco my odds would go up to about 90% it would. I am almost two years out and there is no sign of it returning. NO doctor should ever talk to you like that. I would be so mad you could see steam coming from the top of my head.

    Get a second opnion and see what they say and you can and should get a copy of your PET/CT scan. They will put on a CD for you and keep it and make a copy to take to the new doctor. Best of luck and just take a big deep breath.

    Bill

    Second opinion

    A lot to lose by not getting a second opinion.  Radiation is brutal and can greatly impact quality of life long term. Get that second and even third opinion if in doubt. And, shame on that doctor for talking to you like that!

  • Jazyecm
    Jazyecm Member Posts: 5
    Much appreciated

    Yes my parents were furious as well, we are all going down to talk to them because I know she scared my husband into thinking I May not have a chance. My surgeon is goig to talk to me and Im going to get a second opinion as well. I seriously thought that if radiation is too emotionally and physically hard that it needs to be stopped but I also dont want to risk my life by not doing it. Funny thig is I dont drink or smoke at all. All responds are amazingly what I was expecting! I'm going to report the doctor because it was really unnecessary for what was said.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Jazyecm said:

    ^^

    I forgot to mention that i had a petscan/ MRI/ 3 biopsies done before radiation to make sure their wasnt any cancer lingering around and they found nothing in my lymph nodes or anywhere else on my body.

    Jazy, welcome to the family

    Jazy, welcome to the family although it breaks my heart that you need to join.  it always makes me sad to get new family members but especially when they're as young as you.  as for your doctor saying that, he had NO right!!  how dare anyone say that to you because for one, they DON'T know that.  I agree with the others, get a second opinion.  If fact, if it were me, i'd get a new doctor.  i would NOT let someone treat me who has such a terrible outlook for me.  He does not deserve to be your doctor.  And here's the thing, I had radiation in 2009 and my cancer came back in 2012.  So, radiation works great for most but not for all.  there is NO guarantee the radiation will keep the cancer from coming back.  With cancer there are NO guarantees.  I'm so sorry you're going through this and that you have that doctor.  Please try to get a second opinion.  I will be praying for you.

    God bless you,

    dj

  • MrsBD
    MrsBD Member Posts: 615 Member
    Radiation

    I'm so sorry you were treated with such lack of compassion. Another opinion is definitely in order, especially if you are working with doctors who are not that familiar with oral cancers. Some of the side effects of radiation are just like those of chemo, so I don't know why your doctor would be surprised. There are medications to take care of thrush and lots of ways for dealing with the sore mouth. Hang in there and keep swallowing whatever fluids and nutrition you can manage. This is a very tough road, but you will feel better in a few weeks. If you ask, you'll find people willing to lend a hand. Check with the social worker at your hospital for rides to treatment when you are too tired. Maybe someone at school could give your child a ride. People at church may make meals for your family. I am keeping you in my prayers. 

  • littlemisskitty
    littlemisskitty Member Posts: 35
    SCC in gums

    My mom also had SCC in her gums. They removed her upper left hand jaw because the first doctor wanted to watch it grow. She did not have radiation the first time when they successfully removed it. It had its margains all around and they tested her 9 months later and nothing had formed there. So we feel we are glad she didn't go through radiation. They did remove her lymph nodes on that side during that surgery as well as a precaution. All noncancerous but we still felt strongly he did the right thing.

    On the other hand, at the 9 month mark while the mouth was clear, it had spread to her opposite side lymph nodes. She had had a pet scan done after surgery and it was clear yet 9 months later it appeared in a different location on the opposite side. I'm not trying to scare you but the point is, everyone is different. I'd go get a second opinion. It sounds like you are having a horrible time. Radiation in the mouth is a terrible time. The side effects of radiating the mouth are tough. They are just like chemo patients. We were told thrush, mouth sores, trouble opening your mouth, trouble swallowing and even hair loss so that's exactly what you would expect. We were given magic mouthwash, and told antibiotics for thrush, while a tube can help, so far my mom has not needed one but some do. Your current doctor should have expected these side effects and made you aware of the possibility of having them. Your doctor being surprised and not knowing that concerns me.

    I think you should definitely seek a second opinion from someone you trust. That other doctor had no right to say what he did. He is not in charge of what happens to you. Everyone is different. Some who have radiation have it come back, others who don't, don't have it come back. Some have it spread, some have it never return. There is no way of knowing what will happen. We only do the best treatment we can when we can and pray and trust God that it's enough. So don't give up but don't listen to that doctor who told you what will happen to you and made it sound awful. For all he knows, you are going to live a happy, healthy life and never have the cancer return. You are young and have your whole life ahead of you so fight for it. 

  • stephenaudrey
    stephenaudrey Member Posts: 32
    Jazyecm said:

    Much appreciated

    Yes my parents were furious as well, we are all going down to talk to them because I know she scared my husband into thinking I May not have a chance. My surgeon is goig to talk to me and Im going to get a second opinion as well. I seriously thought that if radiation is too emotionally and physically hard that it needs to be stopped but I also dont want to risk my life by not doing it. Funny thig is I dont drink or smoke at all. All responds are amazingly what I was expecting! I'm going to report the doctor because it was really unnecessary for what was said.

    My advice would be to get to

    My advice would be to get to the best cancer hospital in your state.  It shouldn't be unclear what the treatment you need is.  I hope you don't need radiation because its pretty bad but someone your age certainly needs to do all they can to get better.

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    to rad or not to rad

    Jazyecm,

    Welcome to the H&N forum, very sorry to see you here.

    Too bad you had to see substitute Dr. Scary, in my case I saw the great Dr. Fantastic, a much better choice.

    Your first, second and third opinion(s) should have valid reason to recommend or not recommend radiation at this time.

    It is generally never easy to go through radiation treatments, that is why we call it your “new normal” .

    Whatever path you take I wish you the best of luck.

    Matt

  • Jazyecm
    Jazyecm Member Posts: 5
    I think

    I do appreciate every comment on here and am grateful for that. I havent heard back from my surgeon yet but I really think Im leaning towards not doing it anymore. I could say its because Ill have no one to watch my son because I double checked already but I just really dont want to. For 2 weeks I felt horrible and got infections and i still have it plus I'm losing half of my hair and its still coming off. Yes of course I know radiation makes you feel horrible but only after 2 weeks? Yes I know that with everyone is different but I had so many breakdowns and I didnt want to get out of bed to eat or anything and Im sure its happened to some people too but they also had people to take care of them and Im not about to hire a nurse to take care of me or cut my stomach so i can have a feeding tube, its just so unnecessary to me. Besides radiation doesn't guarantee that i wont get it back. Ill just have to see what life brings me without radiation but I have faith that it wont come back! God is greater than Cancer!

  • rcaulder
    rcaulder Member Posts: 70
    Jazyecm said:

    I think

    I do appreciate every comment on here and am grateful for that. I havent heard back from my surgeon yet but I really think Im leaning towards not doing it anymore. I could say its because Ill have no one to watch my son because I double checked already but I just really dont want to. For 2 weeks I felt horrible and got infections and i still have it plus I'm losing half of my hair and its still coming off. Yes of course I know radiation makes you feel horrible but only after 2 weeks? Yes I know that with everyone is different but I had so many breakdowns and I didnt want to get out of bed to eat or anything and Im sure its happened to some people too but they also had people to take care of them and Im not about to hire a nurse to take care of me or cut my stomach so i can have a feeding tube, its just so unnecessary to me. Besides radiation doesn't guarantee that i wont get it back. Ill just have to see what life brings me without radiation but I have faith that it wont come back! God is greater than Cancer!

    Faith

    I prayed God would help you make the right decision. Your gut seems to be saying something. Yes God is greater than cancer. I having a feeling your recognition of God and His greatness everything is going to be simply ok. <><

  • avisemi
    avisemi Member Posts: 172
    Jazyecm,
    how are you feeling

    Jazyecm,

    how are you feeling now without the radiation?  Sorry you are going through this. I pray that God will show you the way and that His Spirit will help you make this decision. Pray for wisdom, pray for clarity and pray for peace once you make that decision. 

    My husband was 37 when he got diagnosed last year. He had induction chemo (horrible). After he had 35 rads with weekly carboplatin. And because this wasn't fun enough, He finished with 2 sessions of CyberKnifE. 

    When he started the doctor told us that the side effects of the radiation will be sometimes similar to the chemo. This got frustrating to me because we would go talk with the chemo doc and he would say it was a chemo thing but then we would mention it to the rad doc and he would say it was a radiation thing. Most of the time they could not say if a side effect was caused by the chemo or the radiation. Because of this I'm surprised to hear your doctors comment about this being unusual. What side effects did you have?

     

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Jazyecm said:

    I think

    I do appreciate every comment on here and am grateful for that. I havent heard back from my surgeon yet but I really think Im leaning towards not doing it anymore. I could say its because Ill have no one to watch my son because I double checked already but I just really dont want to. For 2 weeks I felt horrible and got infections and i still have it plus I'm losing half of my hair and its still coming off. Yes of course I know radiation makes you feel horrible but only after 2 weeks? Yes I know that with everyone is different but I had so many breakdowns and I didnt want to get out of bed to eat or anything and Im sure its happened to some people too but they also had people to take care of them and Im not about to hire a nurse to take care of me or cut my stomach so i can have a feeding tube, its just so unnecessary to me. Besides radiation doesn't guarantee that i wont get it back. Ill just have to see what life brings me without radiation but I have faith that it wont come back! God is greater than Cancer!

    I'm so sorry for what you're going through

    I also had a VERY tough time with rads.  My oncologist said my body reacted like I was allergic to it!  I had terrible symptoms within THREE DAYS of starting.  I ended up getting a CT scan on day two because I was so sick and swollen that quickly.  Rads were recommended by my surgeon and oncologist but I wanted to stop them.  I couldn't stop vomiting, I was dehydrated no matter how much water I drank, my hair was falling out in clumps, I was physically drained and I HURT all over.  I did end up with a PEG (and outpatient surgery to get it put in) and it truly saved my life. It was me and my teenage son at home during the day and treatments.  I got to the point that I didn't WANT anyone around, I wanted to handle it all on my own.  My hubby works a lot and helped me all that he could.  I prayed, was prayed for, and relied on my faith more than anything.  The wonderful people on this site encouraged me like no one ever had, and I finished the treatments.  It was tough.  I hated it.  But when I got the "cancer free" call from my doctor, it was the best feeling in the world!  I had surgery prior to rads and was able to get clear margins that way, but the rads were a precaution since it took two surgeries to get the clear margins.  I also had no lymph node involvement. My original rad onc was awful.  He had no caring nature, no sympathy, and no bedside manner.  He was on the brink of retirement and I demanded to see his assistant.  What a change!  It made things so much better for me!  My main trust is in God, but I had to think that God was giving these doctors the knowledge of what would be best for me overall.  I wanted to quit.  I begged to quit.  I came on here and told everyone that I was DONE.  This family of CSN'ers wanted the best for me and they respected my wishes, but encouraged me to fight, fight, fight.  I am over 2 years cancer free and loving life!  I had to let go of a lot of control (which is very difficult for me) and let the doctors do what they do.  Yes, I have side effects from the rads.  Yes, things are different now.  Yes, I am still finding my new normal, but I know that I gave it all I have and I fought as hard as I could to kill the disease inside of my face.  I wish you ONLY the best.  If you continue to fight....we are here cheering you on.  Either way, you are in our prayers and we hope you will stay with this awesome CSN family :)