Daughter Diagnosed with PTC - What is Next?

mamamia1962
mamamia1962 Member Posts: 8 Member
edited November 2022 in Thyroid Cancer #1

My daughter just found out Halloween 2022 she has PTC. Endo has referred her to surgeon in Miami with recommendation for removal of thyroid. My daughter just moved to Florida a few months ago and so we don't have a lot of knowledge of the medical community here. I'm looking for advice and guidance on what to think about, what to make sure we do and what we should not do. What do you look for in a good surgeon? It sounds like the recommended doc performs high volume procedures and patient comments are very positive. Should we visit with more than one doctor? What should we expect after the surgery? I have been reading all your comments and stories and I admire everyone for your strength and positive focus and your experiences and knowledge. Bless everyone with health and happiness.

Comments

  • Still Surviving
    Still Surviving Member Posts: 13 Member

    Hi. There is some excellent information on VeryWell Health on How to Find a Top Thyroid Surgeon. Having discussed this with several friends over the years who needed thyroid surgery it makes sense to use a general surgeon who does this surgery on a regular basis or an ENT surgeon. In my case 69 years ago I had no say in the matter as I was only 6 years old but my mother was an RN and we knew to have a skilled general surgeon do the operations. Talk to a couple surgeons on the matter and be very upfront with the questions so you are comfortable with their answers and them in general. Knowing what I know now I would ask: how long is the operation, how will you know if all the cancerous tissue was removed, complications, is there a need to biopsy the lymph nodes, is radio iodine treatment needed after surgery…

  • kiran254
    kiran254 Member Posts: 2 Member
    edited November 2022 #3

    Hi there! Had my surgery in 2019. They removed the right first (to save the left thyroid) but it had a malignant nodule so had to do a second surgery after 3 days! It does not take long. After the surgery, when it will have healed to some extent, an ultrasound will be done to check if there is any thyroid tissues left (of course very fine details cannot be spotted). This is when you will go for radioiodine ablation/diagnostic scan. If there will be a tracer uptake it means some thyroid tissues are there (was my case) then you go for a higher does of radioiodine therapy which will destroy all thyroid tissues both good and bad. Once done, after some months you will redo the radioiodine diagnostic scan (at this point mine had no uptake hence no thyroid tissues). [Content removed by CSN Support Team]

  • Still Surviving
    Still Surviving Member Posts: 13 Member

    Pretty much the same process I went through 60 years ago when I was 6 except surgeries were about 5 months apart! I also had a couple lymph nodes removed. Hope you are doing well.

  • kiran254
    kiran254 Member Posts: 2 Member

    Awww. I hope all is well for you.

    I am doing a radioiodine diagnostic scan next week as a follow up after 3 yrs (thanks to covid). After how long do you do that, if you do it?

    I struggle with tingling sensation and numbness (muscle spasms) especially the hands and legs. Anything that can help? It frustrates me!

    I have constant anxiety and stress. I barely get a good restful sleep.

  • Still Surviving
    Still Surviving Member Posts: 13 Member

    I was originally on Proloid which is a desiccated hormone replacement medicine. It is still available but most people who do well with the desiccated medicine use the Armour Thyroid. I did not do well with it so my endo put me on Synthroid (levothyroxine) now under the brand name EUTHYROX, 150 mcg/day. It works very well for me. Some tiredness but not much else. I learned the hard way that it is very important to take the med as prescribed - in my case 1 hour before breakfast with a glass of water. Eating too soon after taking the med inhibits absorption into your system and stomach acids that are produced when you eat food can reduce the medicines effectiveness.

    As for the tingling and numbness, About 20 years ago I found I was deficient in B1, B6 and B12 mainly due to diet. I Took a supplement for awhile then started to eat foods high in B vitamins which helped quite a bit. I sleep pretty well but occasionally go a day or two waking up early mainly because I'm thinking about something too much. I experience very few side effects when my TSH and free T4 levels are within range. In 60 years I have gone out of range maybe 4 times and needed the dosage tweaked.

    My dosage has been pretty steady for many years now. Its important to work with a good endocrinologist or PCP who understands endocrinology and doesn't treat you like a science experiment on two legs! It's also important to give any dosage change 6 - 8 weeks to settle in before deciding if it is doing what you want.

  • mamamia1962
    mamamia1962 Member Posts: 8 Member

    Thank you for sharing your information. I'm so glad your story is a happy one - thank you for that encouragement. We met with 1st surgeon who is very skilled and does a couple hundred procedures a year. He is on the fence about doing a lobectomy even though the mass is on right side only, it doesn't have a well defined shape and may have some risk of a 2nd procedure once they get the results from what they take out. He is also concerned there may be some spread to the lymph nodes. He is leaving it up to my daughter to decide. We meet with a 2nd surgeon who specializes in scarless thyroid surgery using robotics and going thru the armpit rather than the neck. He also does hundred of surgeries a year. I think we found the right doc no matter which one we go with, but wanted to know if anyone else faced making the decision to do just the Lobectomy with the risk of a 2nd surgery to remove the 2nd lobe.