Medullary Thyroid Cancer Survivor

leolove
leolove Member Posts: 3
edited March 2014 in Thyroid Cancer #1
Hi! Just wondering if there are any other Medullary Thyroid Cancer survivors out there. I was diagnosed at 23 and I am a 50 yr. old female. I had 2 thyroid surgeries and was sent to MD Anderson Cancer Hospital for a bilateral neck dissection (3rd operation) followed by 6 weeks radiation back in 1983. I had localized lympth node involvement. I still have elevated calcitonin but with yearly followup no spread has ever been found. I am extremely thankful for that. I thank God every day for my recovery and the wonderful doctors at MD Anderson!
I do experience long standing side effects from the radiation though including leukepenia, sinus problems, dental, problems swallowing, history of vocal cord nodules and bleeding, upper body weakness, numbness and neck pain, tiredness, memory loss and sensitivity to heat.
I have lead a happy, relatively normal life. I am married with 2 grown children. I taught school for 21 years and had to retire due to luekepenia and vocal cord issues a few years back. Have others had these types of side effects and are there other effects?

Since Medullary Thyroid Cancer is fairly rare, I would love to hear from others with same condition. Thanks! :)

Comments

  • alapah
    alapah Member Posts: 287
    #2
    Not a medullary survivor...
    but I just wanted to say that it is so heartening to read your story. Mine was papillary with follicular variant but due to the tumor being unencapsulated and adhering to my trachea, I went through 6 weeks of EBR in addition to RAI. Sorry to hear you have lingering side effects but it's great you've made it through. I hope other Medullary survivors come forward for you.
  • sfl67
    sfl67 Member Posts: 55
    #3
    alapah said:

    Not a medullary survivor...
    but I just wanted to say that it is so heartening to read your story. Mine was papillary with follicular variant but due to the tumor being unencapsulated and adhering to my trachea, I went through 6 weeks of EBR in addition to RAI. Sorry to hear you have lingering side effects but it's great you've made it through. I hope other Medullary survivors come forward for you.

    alapah
    I was diagnosed with Hurthle Cell in July 09, was told after surgery my tumor had also attached to my trachea as well as embedding in my throat. I was given RAI-131 in September followed by the full body scan. My recent ultrasound showed no new nodule or tumor, but I continue to have discomfort in the trachea area along with a persistent cough. I wondered if you have any residual side effects? Any information you could share would be appreciated. Thank you
  • alapah
    alapah Member Posts: 287
    #4
    sfl67 said:

    alapah
    I was diagnosed with Hurthle Cell in July 09, was told after surgery my tumor had also attached to my trachea as well as embedding in my throat. I was given RAI-131 in September followed by the full body scan. My recent ultrasound showed no new nodule or tumor, but I continue to have discomfort in the trachea area along with a persistent cough. I wondered if you have any residual side effects? Any information you could share would be appreciated. Thank you

    sfl67
    I almost was going to start a new thread cause i didn't want to appear to hijack this one but i see the OP has responded to/joined another longer recent thread re medullary cancer survivors so now i don't quite feel so bad about posting here.

    I haven't had many residual side effects from the tracheal invasion. I did end up with right vocal cord paralysis, not due to the surgeon but because the tumor had encased the nerve and it could not be saved. I have impacts from that including breathing issues (minor at this point) and vocal issues (breathy voice, raspy sometimes, higher pitch). I had a swallow evalution prior to my EBR and in October 09 and then just had another in follow up visits last week and, fortunately, my swallowing is not adversely impacted by the vocal cord paralysis. I have seen CTs and scope xrays of my trachea and it is permanently deformed from the tumor - it is D shaped for a bit of its run.

    Can they tell you why you have discomfort? BTW, we have similar timelines - my TT was in June 09 and RAI in September.
  • sfl67
    sfl67 Member Posts: 55
    #5
    alapah said:

    sfl67
    I almost was going to start a new thread cause i didn't want to appear to hijack this one but i see the OP has responded to/joined another longer recent thread re medullary cancer survivors so now i don't quite feel so bad about posting here.

    I haven't had many residual side effects from the tracheal invasion. I did end up with right vocal cord paralysis, not due to the surgeon but because the tumor had encased the nerve and it could not be saved. I have impacts from that including breathing issues (minor at this point) and vocal issues (breathy voice, raspy sometimes, higher pitch). I had a swallow evalution prior to my EBR and in October 09 and then just had another in follow up visits last week and, fortunately, my swallowing is not adversely impacted by the vocal cord paralysis. I have seen CTs and scope xrays of my trachea and it is permanently deformed from the tumor - it is D shaped for a bit of its run.

    Can they tell you why you have discomfort? BTW, we have similar timelines - my TT was in June 09 and RAI in September.

    alapah
    Thank you for responding!
    My endo is not familiar with my cancer, so the surgeon has decided to take my case completely and can order the tests he thinks necessary to monitor my TSH levels along with the thyroglobulin. He has only told me that my cancer was minimally invasive, no lymph nodes, vascular or nerve invasion present at surgery. My tumor was 3.5 centimeters and pathology did not show clear margins on the trachea, but the surgeon feels confident that he was able to get all of the tumor. He did the surgery microscopically and I still have some degree of swelling in the surgical area; he also did what he called a modified throat dissection at the time. He thinks part of the discomfort is scar tissue along with nerve endings and possibly salivary gland damage from the radioiodine. I was given the maximum dosage due to the aggressive nature of this cancer and its ability to reoccur and spread. I failed to ask about vocal cord damage, my speaking voice is fine but am unable to carry a tune. My ability to swallow is fine and numbness in my extremities from the parathyroid lasted only a few days following surgery. My recent ultrasound was thyroid bed only and there has been no follow up of my trachea.

    I was anxious to respond due to the fact your case is similar to mine with the trachea involvement, and I appreciate greatly you sharing your story, maybe we can keep in touch. I, like many others, am glad I found this site, I don't know anyone going through this experience presently and the Hurthle Cell Carcinoma is not a common form and is difficult to treat. I want to be an informed patient and learn what I can for myself.

    I wish you well and continued recovery.
  • alapah
    alapah Member Posts: 287
    #6
    sfl67 said:

    alapah
    Thank you for responding!
    My endo is not familiar with my cancer, so the surgeon has decided to take my case completely and can order the tests he thinks necessary to monitor my TSH levels along with the thyroglobulin. He has only told me that my cancer was minimally invasive, no lymph nodes, vascular or nerve invasion present at surgery. My tumor was 3.5 centimeters and pathology did not show clear margins on the trachea, but the surgeon feels confident that he was able to get all of the tumor. He did the surgery microscopically and I still have some degree of swelling in the surgical area; he also did what he called a modified throat dissection at the time. He thinks part of the discomfort is scar tissue along with nerve endings and possibly salivary gland damage from the radioiodine. I was given the maximum dosage due to the aggressive nature of this cancer and its ability to reoccur and spread. I failed to ask about vocal cord damage, my speaking voice is fine but am unable to carry a tune. My ability to swallow is fine and numbness in my extremities from the parathyroid lasted only a few days following surgery. My recent ultrasound was thyroid bed only and there has been no follow up of my trachea.

    I was anxious to respond due to the fact your case is similar to mine with the trachea involvement, and I appreciate greatly you sharing your story, maybe we can keep in touch. I, like many others, am glad I found this site, I don't know anyone going through this experience presently and the Hurthle Cell Carcinoma is not a common form and is difficult to treat. I want to be an informed patient and learn what I can for myself.

    I wish you well and continued recovery.

    I've 'friended' you so
    I've 'friended' you so hopefully you'll get that message. My tumor measured 3.4x2cm. The surgeon did do some scraping but there was, no doubt, a bit of lingering tissue. My pap with follicular variant seemed to be an aggressive form and they treat it as such. Apparently there was no positive lymph node involvement but one questionable one (for some reason pathology was inconclusive). I was T2M0Nx. I have heard that scarring can cause that sort of discomfort. I did have about two weeks with a feeling of a lump in my throat back in January - my endo ordered an U/S and all looked good. It hasn't returned. Might have been due to reflux.
  • MaryBath
    MaryBath Member Posts: 1
    #7
    MTC
    Hi Meddie Friend -

    You may want to check out ThyCa (Thyroid Cancer Survivors Assoc). They have a very active e-mail support group for "meddies" as we refer to those with medullary thyroid carcinoma. You can sign up through their website here: http://www.thyca.org/email.htm#medullary

    They also have workshops and an annual 3-day conference in Oct where meddies gather from around the globe, but mostly from the U.S. It's a unique event as I don't believe there are any other times when that many meddies and their families are in one location. You will feel an instant kinship if you go to the conference. It's just a wonderfully supportive group. This year, the conference is in Dallas, so maybe it will be close to you? There are many MTC physicians who come to speak. Maybe you know some of them from your experience at MD Anderson.

    All the information about the workshops and conferences and the e-mail support group can be found at the ThyCa web site. Welcome, welcome!!

    A Meddie Friend from Virginia
  • Mom333
    Mom333 Member Posts: 2
    #8
    It really made my day to
    It really made my day to read this. I am on my way to MD for a check up. I have had 2 neck dissections and still have residual. To hear you have over come this gives me so much hope. I have 2 small girls and fight everyday to be here with them. Thank you for sharing!
  • Mom333
    Mom333 Member Posts: 2
    #9
    It really made my day to
    It really made my day to read this. I am on my way to MD for a check up. I have had 2 neck dissections and still have residual. To hear you have over come this gives me so much hope. I have 2 small girls and fight everyday to be here with them. Thank you for sharing!
  • jaxonwalker
    jaxonwalker Member Posts: 2
    #10
    sfl67 said:

    alapah
    I was diagnosed with Hurthle Cell in July 09, was told after surgery my tumor had also attached to my trachea as well as embedding in my throat. I was given RAI-131 in September followed by the full body scan. My recent ultrasound showed no new nodule or tumor, but I continue to have discomfort in the trachea area along with a persistent cough. I wondered if you have any residual side effects? Any information you could share would be appreciated. Thank you

    hurthle cell
    I was diagnosed with hurthle in jan 2009. I have had 4 surgery's. the last 3-23-11 hurthle is not curable, it is treatable, meaning you may not die from it, but you will die with it. I was told this at MD Anderson on 4-21-11 It will eventually get you. iodine 131 did me no good at all, maybe it helped you thank GOD.

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