FVPTC - RAI or not?

gmthul
gmthul Member Posts: 19
edited March 2014 in Thyroid Cancer #1
Hi, everyone.
I am 29 and diagnosed with FVPTC (follicular variant papillary) in June. I had a total thyroidectomy on the table when the biopsy results came back (I had another nodule in the other side that was also FVPTC). Now I have recurrent growth in the thyroid bed and one lymph node although my nodes came back clean after the surgery. Although my primary tumor was 4.1 cm, had capsular invasion, and was multifocal (1.2 cm tumor in other side), the team at Mayo has recommended to follow me with ultrasound only, no RAI. However, the team that did my second opinion feels that the recurrence, size, capsular invasion and multifocal nature make me a good candidate for RAI even though my MISCA score is only 4.something. Does anyone have any experience getting differing opinions? How did you make the decision about RAI? I am currently breastfeeding my last child (I have four under 5) and it would be difficult to be gone that long. But I am very nervous about how aggressive the cancer seems to be and from what I have been reading it is better to nip it in the bud with the RAI than go back and treat the recurrence later (although the lymph node is only 1 cm and the growth in the thyroid bed is <1 cm).

Any thoughts or resources/links would be greatly appreciated! I am so glad I found an online community. Believe it or not, my team leader at Mayo told me to beware of online communities because they would "scare me" into getting treatment I don't need. I am not sure what to think!

Gen

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    #2
    American Cancer Society
    Hello,

    You may want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day to assist you with your questions. They can be reached at 1-800-227-2345.

    We wish you the best on your treatment.

    Kind regards,
    Your CSN Staff
  • gmthul
    gmthul Member Posts: 19
    #3
    Your CSN Support Team said:

    American Cancer Society
    Hello,

    You may want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day to assist you with your questions. They can be reached at 1-800-227-2345.

    We wish you the best on your treatment.

    Kind regards,
    Your CSN Staff

    thanks, I followed your
    thanks, I followed your advice and they helped me locate the most appropriate hospital for a second opinion. I will be going to the University of Chicago later this month, and a pathologist in Pennsylvania is reviewing my tumor samples.
  • peadledoo
    peadledoo Member Posts: 1
    #4
    gmthul said:

    thanks, I followed your
    thanks, I followed your advice and they helped me locate the most appropriate hospital for a second opinion. I will be going to the University of Chicago later this month, and a pathologist in Pennsylvania is reviewing my tumor samples.

    Please Help
    Can you please tell me what you decided to do. I am in the same boat as you- 2 small children, breastfeeding one. I have one nodule - less than 1 cm that came back cancerous. Had a total thyroidectomy a few days ago. I am thinking RAI is not as needed in my case...
  • jcvolt
    jcvolt Member Posts: 69
    #5
    yea
    My surgeon wanted me to have rai but I had pretty much decided against it before I saw my endo. She agreed that it could do more harm than good and was not worth the risk.

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