Salivary Gland Cancer/Hard Palate

robert62
robert62 Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
Symptoms began with a lump in the roof of my mouth. Started out the size of my thumb nail and then started growing. This began around September, 2003. Went to the doctor in early October to an ENT specialist; who did a biopsy of the lump and then it really got aggrevated and filled up the whole top of my mouth. Of course it was malignant and I had no insurance. This diagnosis was made in Texas where I lived and I could not get anyone to touch it due to no insurance. I recently got married in November, 2003 and my stepdaughter, who lives in Pennsylvania contacted UPMC hospital there and told them the situation. They told her to get us here and they would take care of me. So, me and my new wife packed up everything and drove over 1400 miles to have surgery. I am currently still having radiation therapy to kill any remaining cancer cells. In the meantime, I have lost lots of weight due to not being able to eat. I no longer have a roof of the mouth and everything is all exposed in my mouth and sinus area up to my eyes. I am in hopes of someone else out there that can talk with me that has had anything simular. I am depressed and very weak.

Comments

  • Reggie13
    Reggie13 Member Posts: 9
    #2
    Der Robert,
    My heart goes out to you. I, too, am suffering from squamous cell carcinoma of the lower base of my tongue (stage 4). I have had both chemo and radiation treatments. I have completed my treatments (6 months to date). However, I still do not have any salivary glands. And I still have the peg tube in my stomach from 7 months ago.
    It's been 7 months since I've been able to eat by mouth. I am alive thanks to "Ensure".
    My doctors do not know when I will regain my salivary glands. I continue to remain FAITHFUL. And I ask that you do also. I will add you to my prayers. Please feel free to write back. I'm here for you. And if you hear of any promising news related to our type of cancer, I would appreciate it if you would share it with me. I'll do the same.
    Remember to remain Positive.

    Reggie
  • sita
    sita Member Posts: 2
    #3
    You've done great just surviving. I've just come back from England where they have a prosthesis called an obturator for maxillary cancer problems. Unfortunately, it was no good for me, as mine was mandibular. You might find someone here who knows how to make an obturator. Of course, money is the big issue here, whereas under the NHS it won't be; don't know if you have to be a British citizen though.
  • NEIL
    NEIL Member Posts: 3
    #4
    hi robert im neil, i had cancer of the soft palate in the roof of my mouth in2002, after 2 years the saliva glands get a little better and the eating think is some what better, i still have a sore throat and food seems to find a way up thru my nose some times but all this gets better as time goes on, my prayers are with u and dont give up, each day is a little bit beter.
  • joansie
    joansie Member Posts: 1
    #5
    sita said:

    You've done great just surviving. I've just come back from England where they have a prosthesis called an obturator for maxillary cancer problems. Unfortunately, it was no good for me, as mine was mandibular. You might find someone here who knows how to make an obturator. Of course, money is the big issue here, whereas under the NHS it won't be; don't know if you have to be a British citizen though.

    What is an "Obturator"? I have half a palate left after radical surgery (started as a sore on my gum, saw a dr. immediately but it was already stage 4). I have no salivary glands, can eat only bland soft foods and my mouth and tongue burn all the time. I have a prosthesis that was added to a denture (it's soft material for the roof, the teeth are like a natural denture). I don't sleep through at night as my mouth wakes me as it feels like cotton and my tongue is double the size. The original cancer was in 2002, followed by 6 weeks of radiation. I seemed to be doing very well then, 7 months later, a lump appeared on the same side but on my face. Saw the dr., he biospied, it was cancer, again. More surgery, 23 lymph nodes removed along with the tumor. 7 weeks of radiation and that's what has made what's left of my life, miserable. I've lost 35 pounds (don't care to eat, almost everything burns so I supplement with a nutritional drink). You're so right about money being the issue - I'm in the process of appealing Medicare's refusal to pay the dentist who is treating me (he made a beautiful prosthesis, unfortunately, because of the radiaton and burn, at night, when I can, I have to remove it so I can have some relief from the pain. I've been told that the salivary glands will probably never return and after all this time, they have not. This is rambling, I'm sorry but I didn't know where or how to start. What I'm asking besides what an "Obturator" is, are you experiencing some of the symptoms I do? Thanks for "listening".
  • lily5
    lily5 Member Posts: 4
    #6
    Im so glad i found ur blog.
    Im so glad i found ur blog. I just found out i have the same type of cancer. My symptoms are the same as yours, i found a lump on the roof of my mouth that started out small and just keeps growing.Since the biopsy its grown bigger and i was told it is malignant. Im in between jobs so i have no insurance. did it take you a while to find help getting it removed? is the recovery time long?
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #7
    lily5 said:

    Im so glad i found ur blog.
    Im so glad i found ur blog. I just found out i have the same type of cancer. My symptoms are the same as yours, i found a lump on the roof of my mouth that started out small and just keeps growing.Since the biopsy its grown bigger and i was told it is malignant. Im in between jobs so i have no insurance. did it take you a while to find help getting it removed? is the recovery time long?

    support
    You may not have noticed, lily, but the post you responded to is five years old. It may be that he is no longer coming in here. I do not recognize the name, for what that is worth.

    In any event, with respect to financial support, you might try the following:

    http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

    This site is put up by the National Institute of Health or some such, and is government-supported.

    Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

    Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

    Live Strong - www.livestrong.org - offers one-on-one support.

    American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

    Maybe you can find some help from among these resources. In the meantime, please do not take this lightly. While the survival rate for head/neck cancer is high when compared to many others, it is just as deadly as the next if not dealt with strongly and at once.

    Best wishes.

    Take care,

    Joe
  • dignity
    dignity Member Posts: 1
    #8
    soft palate cancer
    i was diagnosed with soft palate cancer in june 2009 i had surgery and now having radiation therapy going on five weeks my mouth is sore but still eating soft foods. thank God the cancer was only in the first stage.I am believing God for total healing following radiation therapy.
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator

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