Medullary Thyroid Cancer Questions

May123
May123 Member Posts: 1
First, sorry for so many questions but I am curious as to symptoms others have had with this. I am new to this site and at this point there is only a suspicion of this Medullary Thyroid cancer and Pheochromocytoma...I have some questions and would very much appreciate any sharing of knowledge.

At time of diagnosis for Pheo- Did anyone have just elevated Metanephrines that were not 3-4 times the normal range?

How large was the Thyroid nodule at diagnosis? I have a 1.5 cm on left side along with two other smaller ones on each side but they say the two smaller ones are more cystic?

I was surprised that the larger nodule was more left middle as I have sensation of something in right side when I swallow?

Were blood tests for Chromogranin A and Calcitonin elevated at time of diagnosis?

Anyone with this have large sores on their back or fingernails with bumps?

Embarrasing to ask but, I have battled constipation entire life and what has really been strange is the fact here over past few months I have had episodes where I get severe stomach cramping and have bowl movements where it is like my entire colon is emptied at once(extremely large movement)anyone else?

Comments

  • sunnyaz
    sunnyaz Member Posts: 582
    Hi May123
    I really don't know much about Medullary Thyroid cancer, so I wish I could help. I am a Papillary survivor. How do they know it's Medullary? Did they do a Fine Needle Aspiration with a biopsy?

    I was never tested for levels of Metanephrines, Chromagranin A or Calcitonin. As far as the finger nail, I did have large lines that made them rough but no sores. A nodule can be present and cause discomfort anywhere in the neck depending on where it puts the most pressure and where the nerve endings are when you swallow. So, it may not cause pain or discomfort in the same area that it is located. I had the opposite problem with my bowels. I have always been plagued with diarrhea. Every once in a while I would get constipated but only after taking Vicodin (Hydrocodone) for pain. Maybe you could try taking a natural Fiber supplement. I take Metamucil every night before bedtime and it has really helped keep me regular. Fiber is one of those natural substances that helps with both sides of the equation, it's good for general colon health. Might also be a good idea to get an opinion from a Gastroenterologist just to be on the safe side. Pheochromocytoma can also cause abdominal cramping just in case nobody has told you.

    Are you scheduled for a Thyroidectomy?

    Blessings,
    Julie-SunnyAZ
  • THYGUY
    THYGUY Member Posts: 4
    May123

    I hear ya and yes severe stomach cramping and extreme bowel movements happen often as I have had MTC for about 3 years.  Swallowing and feeling something isn"t always related to the cancer but it could be.  I had pain at base of my neck for a year it actually felt like my chest bone at base of neck but it was my Thyroid expanded and full of Cancer.  Full neck dissection so far but Calcitonin numbers continue to climb even after second surgery.  I have spots that are constantly itchy so you are not alone.