CSN Login
Members Online: 8

FVPTC - RAI or not?

gmthul's picture
gmthul
Posts: 19
Joined: Sep 2008

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

Your CSN Staff's picture
Your CSN Staff
Posts: 200
Joined: May 2008

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's picture
gmthul
Posts: 19
Joined: Sep 2008

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
Posts: 1
Joined: Jul 2009

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
Posts: 69
Joined: Mar 2009

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.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network