Papillary Thyroid Cancer with Follicular Variant

[twinmom0403]

I am a 35yr old mother of twins.  I was diagnosed after having lft lobe removed to take out 3.8cm nodule and they found cancer 2.6cm(clustered mass).  I have to have a 2nd surgery to remove right lobe and radioactive iodine.  I am scared of what this all will mean for insurance.  Also, Mom had breast cancer and I have had two breast biopsies.  Wondering if I should push for a PET scan.  I am also a Hashimoto's patient diagnosed at 18 yrs.  Help or Advice???

[cynlynne]

I'm sorry about your diagnoses and having to go through surgery twice.  I had a TT about a month ago and the pathology report came back with cancer.  I was glad that my surgeon suggested removing the entire glad, which I'm happy that I listened to him.

I'm not an expect on any of this, but I'm slowly learning.  Let ask a few questions.  Has the cancer has spread beyond the thyroid or was it contained?  What did the breast biopsies say?  As far as the PET scan I would talk to your endo and see what they say.  If they say no, I'd ask why.  

I think I can relate to how scared you must be feeling.  My mom, her sister (my aunt), and my cousin (on my mom's side) have all had breast cancer.  I also have a two different breast biopsied and one lump removed.  I'm going in this Wednesday to have another lump looked at through a diagnostic mammogram.  Just knowing that your body has successfully created cancer makes you scared, but adding in family history makes you terrified!  I keep telling myself to calm down and breath.  I need to listen to doctors and what my "gut" tells me to do.  I come home after a doctors appointment and think through what has been said and try look at all sides.  So my advice would be to take a deep breath and know that just because you've had thyroid cancer doesn't mean that you have other cancers.  I'd just be aware of you body and any changes that you notice.  Good luck and know that you aren't alone.

[twinmom0403]

Thank You for your thoughts.  I don't know if the TC has spread, but they want to do Radioactive Iodine anyway and said that would get it???  I might opt to see a gynetic counselor and then go from there on what to do about a PET scan.  My surgeon says he understands, just don't pile on the radiation to close together.  Surgery 2 is tomorrow, here's to "let's hope all goes well;-)

Regrads,
Kristin

[cynlynne]

Just wanted to wish you luck with this second surgery.  I hope everything goes well for you!  :)

[twinmom0403]

Thank You.  Second surgery is today 10/14 at noon.  No sleep of course, but I believe all will be ok. Just a bump int he road;-)

[monica148]

HI,
I am sorry to hear you are going through your second surgery for thyroid cancer but it is good they are going back to get more of the cancer out.  I had a total thyroidectomy in June, and they wanted to wait about six weeks for the radioactive iodine so the surgery site could heal first.  Before the RAI, you are taken off your thyroid medicine and have to go on a low iodine diet.  I did not have any problems with either, except for feeling tired.

You may want to speak with a genetic counselor as there is a possible connection between breast and thyroid cancer called Cowden's syndrome.  I have had both types of cancer within the past year, and am now being tested (blood test) for Cowden's syndrome.

You mention what this will mean for your insurance...I don't know what type of insurance you have, but if Obama's health insurance plan is passed, the insurance agencies will not be able to prevent you from getting health insurance due to a prior condition.

Best of luck, and let us know how you are doing.  How old are your twins?  

Monica

[twinmom0403]

Thank you all for the info.  Surgery 2 went ok.  My calcium stayed level and I came home the next night.  I will have post-op in 2 weeks and then to the radiation oncologist.  I am ok, however I have allot of preesure and fullness in the neck area.  Almost feels like I am gaging when I lie down.  Sleep patterns are still off after 2 surgeries in 3 wks.  Doctor said the right and final lobe they took out had a weird shape, but no cancer or nodules.  I feel frustrated b/c it was healthy, but I guess it had to go to take the iodine.  I will check on the Cowden syndrome thing.  What a  journey
Regards,
Kristin

[monica148]

I felt the fullness in my throat when I swallowed after surgery also.  I also couldn't talk the first two days and had to whisper...now, four months later, I still occasionally have a hoarse voice and do feel a small bit of fullness when I swallow.  

Keep in touch, and let us know how it goes when you see the radiation oncologist.