scared

mscott10
mscott10 Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
Hello, my name is Mike. I just went through 10 weeks of radiation treatment and I have to say it was the hardest thing I ever had to endure in my life! I'm sure we all agree. My wife found this site and has been such a tremendous help to me through my ordeal. I have always been a health conscious person and was shocked/devastated when I was told that I had cancer. After the operation a lymph node on the right side of my neck swelled up and that was when it was deemed neccessary for radiation therapy. I have all the sypmtoms from the treatments and it has been miserable. I'm scared that the cancer will come back. I have nightmares about it all the time. I have a question.... does anyone out there have localized swelling? Under my chin I have this puffy area that doesn't hurt and is not hard. It makes me look like I have a double chin. I hope to meet others on this discussion site that I can talk to to relieve my fears. Thank you.

Comments

  • garyr
    garyr Member Posts: 27
    #2
    Hi Mike, I also went through 63 radiation treatments and did a lot of suffering. The swelling is normal and goes away gradualy. I think that we all fear that the cancer will come back, but we just have to go on with our lives. I finished my treatment in the fall of 1999 and am living a fairly normal life. Hang in there, it will get better.

    Gary
  • mscott10
    mscott10 Member Posts: 7
    #3
    garyr said:

    Hi Mike, I also went through 63 radiation treatments and did a lot of suffering. The swelling is normal and goes away gradualy. I think that we all fear that the cancer will come back, but we just have to go on with our lives. I finished my treatment in the fall of 1999 and am living a fairly normal life. Hang in there, it will get better.

    Gary

    Gary,
    Thanks for the encouragement. I'm glad I have someone who has gone through what I have gone through to talk to. Seems everyone else changes the subject when I bring it up around my circle of friends. I will hang in there. I have started going to the gym and working out. I've also quit drinking alcohol (beer). I believe that maybe it was the cause of this cancer? Thank you once again for writing to me. Helps out alot.
    Mike
  • ilevin
    ilevin Member Posts: 24
    #4
    Be prepared for what I call terminal paranoia. I had my first bought with tongue cancer 14 years ago and I was sure I wouldn't live long. Well the cancer did eventually come back after 13 years. Now I'm going through the worry all over again wondering if (or more often WHEN) it will return this time.
    I also have some swelling in my face. Although I've lost a lot of weight from not being able to eat my face looks puffy and full. The doctors don't seem to think that anything is wrong. Have you had any difficulty opening your mouth? Scar tissue forms and I can't open my mouth as far as I used to be able to. My doctor prescribed a Therabite which is a device to help regain some of the lost movement. It does help. I agree that radiation is the hardest thing I've ever done. I had a terrible reaction and was sick for months afterward.
  • mscott10
    mscott10 Member Posts: 7
    #5
    ilevin said:

    Be prepared for what I call terminal paranoia. I had my first bought with tongue cancer 14 years ago and I was sure I wouldn't live long. Well the cancer did eventually come back after 13 years. Now I'm going through the worry all over again wondering if (or more often WHEN) it will return this time.
    I also have some swelling in my face. Although I've lost a lot of weight from not being able to eat my face looks puffy and full. The doctors don't seem to think that anything is wrong. Have you had any difficulty opening your mouth? Scar tissue forms and I can't open my mouth as far as I used to be able to. My doctor prescribed a Therabite which is a device to help regain some of the lost movement. It does help. I agree that radiation is the hardest thing I've ever done. I had a terrible reaction and was sick for months afterward.

    Hello Ilevin. Thanks for your experiences. The swelling and puufiness under my chin has not gone away yet. I also have a hard time opening my mouth also. The muscles on the side of my face always hurt. I will inquire about the Therabite with my doctor and see if I can get some myself.
  • mscott10
    mscott10 Member Posts: 7
    #6
    garyr said:

    Hi Mike, I also went through 63 radiation treatments and did a lot of suffering. The swelling is normal and goes away gradualy. I think that we all fear that the cancer will come back, but we just have to go on with our lives. I finished my treatment in the fall of 1999 and am living a fairly normal life. Hang in there, it will get better.

    Gary

    Gary,
    Thanks for writing a reply to my help quest! I'm still finding out new side effects from the radiation treatments. Now when I look down (bending my head down) I have tingling sensations from the mid back down and in my hands. According to my doctor.., nerves in the back of my neck have been damaged from the radiation and that it could be permenant. Are you having the same symptoms? Are there other effects from the treatments to look out for in the future? I have my Petscan this April to check if everything is gone. Been praying so much. God Bless. Hope all is well for you!
    Mike
  • mscott10
    mscott10 Member Posts: 7
    #7
    ilevin said:

    Be prepared for what I call terminal paranoia. I had my first bought with tongue cancer 14 years ago and I was sure I wouldn't live long. Well the cancer did eventually come back after 13 years. Now I'm going through the worry all over again wondering if (or more often WHEN) it will return this time.
    I also have some swelling in my face. Although I've lost a lot of weight from not being able to eat my face looks puffy and full. The doctors don't seem to think that anything is wrong. Have you had any difficulty opening your mouth? Scar tissue forms and I can't open my mouth as far as I used to be able to. My doctor prescribed a Therabite which is a device to help regain some of the lost movement. It does help. I agree that radiation is the hardest thing I've ever done. I had a terrible reaction and was sick for months afterward.

    Yes..., I do have difficulty opening my mouth. I've been stretching it as much as I can. Painful. The puffiness under my chin and on my cheeks has been determined as just swelling. My doctor has stressed lots of fruits and vegetables everyday. I do eat alot of them and I hope it works. Did you go through radiation treatments again 13 years later? Hope your doing better these days.
    Mike
  • garyr
    garyr Member Posts: 27
    #8
    mscott10 said:

    Gary,
    Thanks for writing a reply to my help quest! I'm still finding out new side effects from the radiation treatments. Now when I look down (bending my head down) I have tingling sensations from the mid back down and in my hands. According to my doctor.., nerves in the back of my neck have been damaged from the radiation and that it could be permenant. Are you having the same symptoms? Are there other effects from the treatments to look out for in the future? I have my Petscan this April to check if everything is gone. Been praying so much. God Bless. Hope all is well for you!
    Mike

    Hi Mike,
    No I do not have the problem with tingling. But they took out a nerve on the left side of my neck so that is numb and part of my left shoulder. I have not had any other symptoms from the radiation once I healed. I will never be able to open my mouth as wide, but no big deal. Hope your Petscan goes well. Praying seems to help. I now go back every 6 months for a check-up.

    Gary
  • mscott10
    mscott10 Member Posts: 7
    #9
    garyr said:

    Hi Mike,
    No I do not have the problem with tingling. But they took out a nerve on the left side of my neck so that is numb and part of my left shoulder. I have not had any other symptoms from the radiation once I healed. I will never be able to open my mouth as wide, but no big deal. Hope your Petscan goes well. Praying seems to help. I now go back every 6 months for a check-up.

    Gary

    Gary, Did your drymouth go away as well? Its been pretty rough with mine. How long did it take for you to heal from your radiation treatments? Thanks again for writing! God Bless you and your family.
    MIke
  • garyr
    garyr Member Posts: 27
    #10
    mscott10 said:

    Gary, Did your drymouth go away as well? Its been pretty rough with mine. How long did it take for you to heal from your radiation treatments? Thanks again for writing! God Bless you and your family.
    MIke

    Mike, I don't think the dry mouth will ever go away but it is not as bad as it was in the beginning. They set me up with trays to apply "Gel-Cam" to my teeth at night to prevent decay, and that seems to stimulate some saliva. My mouth does not get dry at night and I have not had any cavities. I would guess that it took 6 months to get over the radiation.
    Gary
  • goldy
    goldy Member Posts: 1
    #11
    ilevin said:

    Be prepared for what I call terminal paranoia. I had my first bought with tongue cancer 14 years ago and I was sure I wouldn't live long. Well the cancer did eventually come back after 13 years. Now I'm going through the worry all over again wondering if (or more often WHEN) it will return this time.
    I also have some swelling in my face. Although I've lost a lot of weight from not being able to eat my face looks puffy and full. The doctors don't seem to think that anything is wrong. Have you had any difficulty opening your mouth? Scar tissue forms and I can't open my mouth as far as I used to be able to. My doctor prescribed a Therabite which is a device to help regain some of the lost movement. It does help. I agree that radiation is the hardest thing I've ever done. I had a terrible reaction and was sick for months afterward.

    Hello ilevin;
    Been following your discussions. You truly have a purpose. I admire your resilient attitude. Please keep helping. I'm the daughter of an 81 year old tongue cancer patient, who I might add is an extreamly sharp lady. (She went back to school at 75 to get her GED) She is receiving 30 radiation treatments that are taking a toll on her. Just wondered if you or anyone else that you have contacted have had problems with nausea from tube feedings. Also, she has a extreme problem with itching. I've tried over the counter meds, but nothing helps. Doctors answer is "gee don't know why". I just wondered if it could by the Salegin? Well like I said, thanks and hang in there.
  • mscott10
    mscott10 Member Posts: 7
    #12
    goldy said:

    Hello ilevin;
    Been following your discussions. You truly have a purpose. I admire your resilient attitude. Please keep helping. I'm the daughter of an 81 year old tongue cancer patient, who I might add is an extreamly sharp lady. (She went back to school at 75 to get her GED) She is receiving 30 radiation treatments that are taking a toll on her. Just wondered if you or anyone else that you have contacted have had problems with nausea from tube feedings. Also, she has a extreme problem with itching. I've tried over the counter meds, but nothing helps. Doctors answer is "gee don't know why". I just wondered if it could by the Salegin? Well like I said, thanks and hang in there.

    Goldy,
    I ran across the note to ilevin and I hope you don't mind my two cents. I went through radiation and tube feeding myself very recently. I lost alot of weight and couldn't eat because of the mouth pain and sores. The empty stomach and the mucous made me very nauseous. I believe the mucous on an empty stomach was what made me throw up all the time. It came to a point where nothing would stay down. I had to be put on medication for nausea via suppository because I couldn't swallow and keep anything down. A combination of radiation, weakness from it and lack of food weakened me to the point where just looking at food made me sick. I hope your mom is doing better and hangs in there. By the way...., cold papaya is really soothing to the throat. See if she can try some of that and keep it down. I couldn't handle the salagen because it made me very hot and itchy also. I just drink lots of water and chew sugar free bubble gum (Trident) because all the other gums burn.
    Take care and God bless, Michael
  • psdtx
    psdtx Member Posts: 5
    #13
    Hey Mike,
    In 1987 I was diagnosed w/ terminal cancer and given 3 months to live.So I understand completely what it is to be scared.I also know cancer and fear can be beaten.During the course of my treatments I rediscovered my faith.What I learned and still believe is there is a higher power that answers prayer and works miracles.Attending church,studying the bible,and praying as a believer makes all the difference.Wish you well
    In Jesus Name
    Pat D

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