Newly diagnosed with thyroid cancer and have 2 main concerns

@ Cocha, it sounds like things looked better than doctor thought since lymph nodes didn’t need to be removed…. that sounds good.
I read that a lot of people are given levothyroxine after surgery while the body adjusts and then later down the line the doctor can try and wean you off it.
Good luck

Make sure you massage the scar and use scar cream for 3 months every day. It works. I have no scar.

Thanks for the tip @mikaylar
How often do you massage the scar? Is there a scar cream that you recommend?

Hi @lise01, regarding your surgeon's stand on the microscopic traces of cancer cells in the central compartment - I have been reading the same in the literature around thyroid cancer, in the recent guidelines as well as in the WCTC 23 (world congress on thyroid cancer) talks. I know it's easier said than done but I would not worry about it. Hope your endocrinologist can weigh in on this soon. Good luck!

@hopeful23 how have you been doing?

Hi @cocha Sorry again for delay. It's been a crazy couple of weeks. I had a lot of not identified on my report as well -- what I read when trying to interpret my report was "Negative findings are usually reported as not identified rather than absent because absence of evidence is not evidence of absence and acknowledging the insight that in medicine the latter can rarely be provided." So ... I am taking those as negative, knowing that it is always possible that something was missed/not involved in the sample they had. It does seem good that once they got in there they did not see a need to do anything more surgically aggressive -- have you been able to get any elucidation on the statement they made about possible ETE, why they ultimately chose not to remove any lymph nodes, or anything else that might clarify things for you (and hopefully put you at ease)?

I had an appointment with a new GP yesterday who was telling me that the endocrinologist will help me with managing thyroid function and hormone levels but that they would not be the ones to do any sort of lymph node mapping or assess any possible remaining lymph node involvement, so she actually got me an appointment with the head of oncology there to talk to about my situation. I think you are right about your comment about microscopic traces of cancer cells -- what my surgeon found could very well be clinically insignificant, but she agreed better safe than sorry to get an oncologist's eyes on things. So I see him at the end of July.

I did have my THS level checked this week and it was at 3.1 ulU/mL -- so normal range, though higher than it's ever been (it historically always comes in under 1.5 and was at 1.2 a week after surgery). GP said that I wouldn't be put on Levothyroxine unless it were significantly higher than 3.1, but she reiterated what my surgeon said -- that levels would most certainly be fluctuating for quite a while after surgery and that it's totally normal to be experiencing some symptoms despite the test result.

I am not happy about gaining a solid 4-5 lbs over the last 8 weeks, but I guess vanity needs to take a back seat for a while. 🙁 Yay elastic waistbands!

Hope everyone is doing well.

Lise

HELLO @lise01, @cocha, @koh and any other friends I've met here.
Did you think I dropped off the face of the earth? Actually, I made a very impulsive decision and bought a house in VT on June 8th, then sold my house in Maine 19 days later on June 27th. Those 19 days were absolutely insane as I prepared my house to be listed in about 3 days. I'm still recovering from that whole process while beginning to pack and move to VT in August. ANYWAY, I finally had a chance to catch up with your posts between then and now.

Lise, I had the exact same experience post-surgery (April 25). I couldn't get an appt with my endocrinologist until July 10 and no one wanted to order blood tests for me because I was between two practices, my surgeon's and my endocrinologist's, but I wanted/needed to know what my labs showed, so I forced my surgeon’s office to order labs. Looks like I probably have hypothyroidism, just based on the fact that my TSH went from 2.13 to 3.96 in 6 months. T3 and T4 are also quite low. Sooo, I’ll see what my endocrinologist says in 9 days. Then, I’ll likely need to find a new endocrinologist when I move to VT. I’m hoping they’ll take a wait and see approach before putting me on Levo right away, but who knows? I don’t have many symptoms, although it’s hard to tell if my exhaustion and joint pain is related to my buying/selling spree or my thyroid hormone levels. I barely had time to eat during the last few weeks, so I’ve actually lost a few pounds.

So that’s where I’m at. I’m still planning to follow you all and see how you’re doing.
Hang in there!

Nan

@hopeful123 . Sounds great! Good luck with the packing and move….. it sounds like a very exciting time… enjoy!

I have had 2 thyroid surgical removal for thyroid malignancy. One was over 20 years ago for total removal. However according to the doctor sometimes pieces of the thyroid are left and it grows back. So I had it removed again. I am 87, and have had no problems with the surgery and have been taking Synthroid (brand not levothyroxine] ever since, There are several types of thyroid cancer so you need to find out exactly what type you have as it determines your medication or treatment you receive. I didn't know that on 1st surgery.

Hi there. I was diagnosed with thyroid cancer at 26. I’m 34 now. I had half of my thyroid removed. I have tried both the OTC thyroid supplements and levothyroxine. I prefer levothyroxine as I feel it works better, but that’s just my opinion. As for the quality of life after thyroid removal, you will have ups and downs. My biggest complaint is no energy and a constant battle to regulate the amount of thyroid medication I am taking.

The dosage can really snowball into too much or too little pretty quickly. I stopped taking birth control and didn’t realize it would increase my absorption of my thyroid meds. So, I began to lose weight without trying (I thought this was great at first), but then as I lost weight, my dosage was too high because my body weight was decreasing, which made me lose more weight and continued to snow ball. I ended up going to the doctor for heart rate irregularities and flutters. My T3 was 0.03 and my hands would shake and my vision would go blurry. I am on a better dose now but you have to pay close attention to your body and get help if you notice changes.

I suppose the same thing could happen in reverse where you are on too small of a dose and gain weight then you need even more meds but are under medicated and keep gaining weight.

I personally deal with heat intolerance now and I live in the desert and work outside. I have gone to pass out on multiple occasions. Again, I have to pay close attention to how I’m feeling and learn to listen to my body.

Overall, I live a normal life but I wish I had more energy. It’s hard to know what ailments are related to your thyroid and what is just from getting older. It starts to feel like every time you notice something that doesn’t feel good you wonder if it’s linked. It’s all just a part of adjusting to a life without a thyroid. But, I will say that I live a normal, healthy life and enjoy all the things that I always have. You will be just fine.

Hi @lise01, @hopeful23, @koh - it's been a while since I posted here. Thank you all for your updates and tips!

@lise01 good to know that you found a new GP and good luck with the oncologist appointment. I am waiting to get my TSH levels tested next week to see if there is much change from the thyroid hormone test a week after the surgery. I haven't gained any weight so far, but the scar is a thick dark line more than a month after the surgery. I am not sure if that is normal or if something else is going on. I am applying scar cream and silicone scar sheets and have never exposed the scar to sunlight, but there is no change yet.

@hopeful23 congratulations on the move! Hope you are enjoying the new place. Any updates on the thyroid hormone testing?

And how are you all feeling overall after the surgery? Are there major changes that you see?
For me, more than anything else, my GERD/Acid Reflux is completely out of control right now. (For the last year, that is the only other medical issue I have had and the PTC diagnosis came out of nowhere because I was thinking something with my colon or esophagus would show up in the tests I had.) I am at my wits' end and I wonder if the acid reflux has become worse because of changes in the thyroid hormone levels?