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    Barbara asked a questionHead & Neck/Throat Cancer

    Has anyone ever heard of or dealt with fibroid dysplasia?

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    • Barbara's Avatar
      Barbara

      Thanks, Nancy. I do mean 'fibrous dysplagia' The information I finally found says it mainly occurs in childhood but is also a rare complication of radiation and occurs mainly in persons 60 years of age or older. This 'lump' started after the completion of radiation on September 14, 2011. It was accompanied by lymphadema bujt was verhy sore and so we waited 'until it wasn'sore to work on getting rid of the lymphadema. The soreness amd the lymphadema have never gone away but the lump has gotten bigger. I have been advised to ;perhaps have an ray of that area of the jaw to see if this fiberoid mass has attached itself to the bone. Will see what other info I can find. If you find anything else, let me know.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      Barbara,

      Did you have any surgery? If so, another thing you might want to look into is if it might be a seroma, which is a fluid pocket that can occur due to either surgery or radiation or even an injury, like a fall. I had them after my mastectomy and plastic surgery that was needed to close the wound. It was diagnosed with a sonagram and drained by needle aspiration, but has since refilled.

      over 4 years ago
    • Barbara's Avatar
      Barbara

      The seroma is certainly a possibility. I actually had two surgeries to remove the tumor under my tongue.............the one done in November of 2010, was done through my mouth, the second one done in May of 2011 when the tumor returned in the same spot, was done from the outside of my throat on the right side under my jaw and resulted in two large scars. This time I had to have 30 treatments of radiation and that's where some of the trouble began.....loss of hearing in my right ear, damage to the thyroid gland, real damage to the swallowing technique ( part of that had been done in the first surgery when I had 1/3 of my tongue removed.) I did have major lymphadema under my right jaw which made me look like a turkey! That has been pretty well taken care of with massage treatments. You mentioned a sonagram . Haven 't heard of that yet so I might suggest that to my speech pathologist. Thanks for the suggestion! Hope you are doing okay now.

      over 4 years ago
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    Barbara posted an update

    It's been aover a year since I had the cancer surgery for a tumor under my tongue. I completed radiation on September 14 and the after-effects of both the surgery keep me both upset and somewhat angry. I have lost the hearing in my right ear from the radiation, have contiually worked with a speech patholgist to try to restore my ability to swallow and get rid of the feeding tube, went through VitalStim treatments which didn't accomplish much, had an EGD which discovered esophagus and stomach ulcers mainly frolm Aleve and baby aspirin, am still working with an occupational therapist to reduce the lymphadema under my jaw, and the hair I lost along my neckline is coming back in EBONY Black against the rest of my hair which is snow-white. Two problems which have been with me since the radiation are mucositis and fibrosis on my right jaw. None of the myriad doctors have any solution to either problem. The fibrosis is a lsrge, sore 'lump' on my jaw. I have done MUCH research on what this actually is and finally found the term, 'fibroid dysplasia..rare complication of radiation'. Has anyone ever run into this? If so, how was it dealt with?

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    • DaveWaz's Avatar
      DaveWaz

      Barbara, you have certainly had a rough time. Sending you a big hug. I am not familiar with fibroid dysplasia, but you might want to ask this in the Questions section. You can do this by clicking on Questions int he blue bar above. Have you spoke to your doctor about this condition as something you may have? Stay strong!

      over 4 years ago
  • Barbara's Avatar

    Barbara posted an update

    Any advice or help for friend with major expenses for cancer treatments--surgery, chemo, and radiation?

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  • Barbara's Avatar

    Barbara posted an update

    Have a friend with breast cancer. After surgery, chemo, and now radiation her breast continues to fill with fluid. Doctors do minor surgery to remove the fluid but it comes back. Any one have this happen to them?

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    • DaveWaz's Avatar
      DaveWaz

      This is a good question and one you might want to post in the Questions section by clicking on "Questions" in the blue bar above.

      over 4 years ago
  • Barbara's Avatar

    Barbara posted an update

    I forgot how to ansswer wuestions that are sent to me. Help!

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    • DaveWaz's Avatar
      DaveWaz

      Hi Barbara,

      No worries! Just click on the link within the email message and the link should take you directly to the question. This should work. If not, please email us at contactus (at) whatnext (dot) com and we'll help you out.

      Thanks.

      over 4 years ago