Newly diagnosed with thyroid cancer and have 2 main concerns

Posted by hopeful23 @hopeful23, Apr 8, 2023

Hi all. I just got my biopsy results a few days ago. The 2.2 CM nodule in my right lobe was suspicious for Bethesda Cat 5 papillary carcinoma. I have an appointment on April 12th with the surgeon who will presumably operate on me. Until I meet with him, I won't know whether he'll recommend a thyroidectomy or lobectomy.

After reading these Q&As, I am particularly concerned about the hormonal changes that will occur after having my thyroid removed. People have described changes to their quality of life, lost relationships, and general misery. I am petrified of this outcome. I'm 65 years old and I was hoping to enjoy the next couple decades.

Secondly, it seems that some people have had good experiences with dessicated thyroid vs the typically prescribed Synthroid or Levo. Do endocrinologists generally disapprove of dessicated thyroid, or are they willing to prescribe it? Anyone have any insight into this debate, or can you tell me about your experience with either form of thyroid replacement? Do thyroid replacement drugs work for anyone, or is everyone miserable? Am I only seeing the horror stories?

Thanks in advance for any help or reassurance you can give me.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

hopeful23 | @hopeful23 | Apr 15, 2023

In reply to @lise01 "I was/am in the same situation. I have a 1.1 cm nodule which is also cat..." + (show)

@lise01

I was/am in the same situation. I have a 1.1 cm nodule which is also cat 5 suspicious for papillary carcinoma which we were doing active surveillance on. It had been .9 cm last December, but it is growing so my surgeon recommended lobectomy.

After my diagnosis I researched a lot of doctors and found one that I really trust and click with. His opinion is that there is a lot of overtreatment when it comes to lower risk papillary carcinomas, and he favors going for the least invasive/extreme treatment that he believes will be effective. He, and every doctor I have spoken to (and I consulted several), stressed to me that even if they have to go back in at a later date to remove the rest of it, the ultimate outcome will be the same. For a cancer like this, he assured me that I am not risking my survival by opting for lobectomy now. I guess the main downside is having to potentially go through more than one surgery (and face the risks associated with any surgery requiring anesthesia) and also with the lobectomy you can't monitor thyroglobulin levels to potentially detect recurrence.

So, I feel very comfortable with a lobectomy. There is a good chance that this could be (mostly) in my rear view mirror in a few months (my surgery is May 2). There's a good chance I will not need hormone supplementation. I like that there is less risk of recurrent laryngeal neck palsy and hypoparathyroidism.
Regardless of removing part of full I will be checking it for the rest of my life. But with the partial I feel like there is less potential risk to my quality of life and, fingers crossed, it may never pop up again. Trying to balance optimism and being realistic about the possibility that it might.

Everyone is different and there are so many factors that determine what action is best to take for the specific case/individual. I've been told by more than one doctor that in cases like mine there is no absolute right answer -- they defer to us to decide what we feel most comfortable moving forward and living with. I like to think that they wouldn't give us the option if they thought one of the routes was a bad decision.

Best of luck to you!

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Hi Lise,
Our cases do sound pretty similar, although my nodule is bigger. Did your surgeon mention doing a frozen section during your lobectomy? My surgeon is planning on it. From what I understand, if the frozen section confirms that the nodule is malignant, he'll do a full thyroidectomy. Your assessment of the situation mirrors mine. I am comfortable with the choice of lobectomy, however I'm (trying to be) mentally prepared in case things change and I need the full thyroidectomy or a later completion thyroidectomy. My surgery is April 25th, so I'll let you know how it goes. Wishing you and all the others in this group the best of luck!

lise01 | @lise01 | Apr 16, 2023

Hi @hopeful23, we are assuming this is malignant (between the biopsy results as well as the features from the ultrasound -- irregular margins and microcalcifications). There's a very small chance for it to turn out to be benign, though it does occasionally happen. My nodule is in the center of the left lobe, appears completely contained, is small and they see no evidence of spread to the lymph nodes, so he is confident that we can get it all out without taking the entire gland. That said, if he finds anything else suspicious when he is in there, like in the central compartment, they will test it and if cancer is detected I have agreed that he may proceed with a total thyroidectomy.

For me, understanding this (as much as a layperson can!) helps me -- diving into the practical, clinical side of things pulls me away from the "what-if" edge. I read the NCCN guidelines, which has been very informative, and his approach is consistent with their recommendations for treatment of nodules with the same characteristics as mine (and there is a choice between total thyroidectomy or lobectomy). If you haven't seen it yet and are interested, you can create an account as a patient at NCCN.org and select guidelines>treatment by cancer type>thyroid carcinoma for the clinical practice guidelines or you can select the patient resources link.

I would definitely like to hear how it goes for you! Wishing you the very best outcome and speedy recovery!

Lise

hopeful23 | @hopeful23 | Apr 17, 2023

In reply to @lise01 "Hi @hopeful23, we are assuming this is malignant (between the biopsy results as well as the..." + (show)

Lise, Thank you so much for sharing the NCCN.org info. It has everything I need to be able to understand the decision-making process. Like you, I try to learn as much as I can so I can understand the plan and the reasoning (and guidelines) behind it. I'll report back after 4/25.

sweettoothd | @sweettoothd | Apr 23, 2023

In reply to @hopeful23 "Thanks for your encouragement, Sweettoothd! I'm so impressed by your activity level and work schedule! I..." + (show)

Based on the biopsy we thought going into the partial that I "just" had papillary thyroid cancer, and my doctor wanted to prevent me from having to go on thyroid medication , so he did a partial. A week later, when the dissection of my partial came back, it indicated tall cell papillary thyroid cancer, which is more aggressive. So, I had the other half taken out!
I am scheduled for iodine radiation May 24th. I need it because of the the type of thyroid cancer I have......how are you doing now??

lise01 | @lise01 | Apr 26, 2023

In reply to @hopeful23 "Lise, Thank you so much for sharing the NCCN.org info. It has everything I need to..." + (show)

Hi @hopeful23 -- not expecting you to be on here so soon after surgery but have been thinking about you the last couple of days and hoping that your surgery went well and that you're having a smooth recovery! Look forward to hearing good news!

I'm up next, on Tuesday!

Lise

hopeful23 | @hopeful23 | Apr 26, 2023

In reply to @lise01 "Hi @hopeful23 -- not expecting you to be on here so soon after surgery but have..." + (show)

Hi Lise,
I'm back! Thanks for your well wishes. I am happy to report that my surgery went really well yesterday. I went in not knowing if I'd have a lobectomy or thyroidectomy and it turned out that the surgeon did just the lobectomy. I know he took some lymph nodes too. He also mentioned that one of my parathyroid glands lost blood supply and he tucked it into a muscle. I haven't seen my full surgery report yet, so I'm not sure if the parathyroid transplant was successful or not. I should get the pathology report in a week or so.

I didn't have much pain post surgery. My throat is still a bit sore from the intubation, and my neck feels like someone punched it, but the pain is quite manageable with Advil and Tylenol. They gave me a couple Oxycodone too, but I didn't need it. My incision was longer than I expected, maybe 2 1/2 inches, but it will eventually blend in with the creases in my neck. I've been referring to myself as "Frankenstein," but it's not that bad. I was able to eat normally when I got home- mostly soup, fruit, toast, and salad. And lots of ice cream!

I walked 2 miles today and felt fine. Even though my neck is sore, the rest of my body works just fine. I will be thinking of you on your surgery day too and hoping that all will go smoothly.

Take care and stay in touch. If you have any additional questions, feel free to ask.
Nan

lise01 | @lise01 | Apr 26, 2023

In reply to @hopeful23 "Hi Lise, I'm back! Thanks for your well wishes. I am happy to report that my..." + (show)

Hi Nan,

Wow, that all sounds really great! I'm so happy to hear that they did the lobectomy and not the full thyroidectomy. I hope your parathyroid is looking good when the report comes back. Are you waiting for the pathology on the nodule too or were they able to confirm it to be (or not be) malignant?

That's amazing that you were able to walk that distance today and that you're feeling so well, despite the soreness. Hearing all that definitely makes me feel a little less nervous about Tuesday.

The frankenstein thing is funny -- we've been joking about that too. My boyfriend is having too much fun coming up with really ridiculous ideas for tattoos I could get on it (not!). I'm too not concerned about the scar -- it'll take a bit of time but they do fade and blend in with the neck creases.

Again, so happy that you are doing so well! I'll definitely check back in after my surgery.

Lise

hopeful23 | @hopeful23 | Apr 29, 2023

Hi Lise,
To answer your question, I am still waiting for the pathology report on my nodule and lymph nodes. They said it might take a week, so that would be Tuesday. I can't really relax until I know what that report says. I assume it will determine whether I'll need more surgery and/or thyroid replacement therapy. I'm still feeling pretty good today, four days out. I've been doing lawn work, walking my dog, and eating normally. My scar is a new color every day. Today's it's featuring various hues of yellow and purple.
I'll be in touch.
Nan

cocha | @cocha | May 1, 2023

Hi @hopeful23 I also have a 2.2cm nodule on my right lobe and am scheduled for an FNA this week. I am curious about your symptoms prior to you noticing the nodule. Did you have any symptoms that made you go in for an ultrasound?
My CBC blood work is completely normal, as is my TSH. I noticed a nodule accidentally and mentioned it to my doctor who asked for an ultrasound. But I have no other symptoms, other than some acid reflux a few months ago which is also gone now.
Thanks!

hopeful23 | @hopeful23 | May 1, 2023

Hi Cocha,
I didn't have any symptoms. Last December, I went in for a CT scan for a neck injury and the next day, I got a call about scheduling a thyroid scan. I was baffled and called my PCP (in name only) to say "what the heck?" I had the thyroid scan and it showed the 2.2 cm nodule, among other nodules. I also had blood work and my TSH and Free T4 were both normal. My PCP referred me to an endocrinologist, but I couldn't get an appointment until April! When I finally went in on 4/4, I loved my new endocrinologist, but I had no idea he'd be doing the FNA that same day. He didn't use any lidocaine, but the needle is tiny and the main discomfort was from the pressure deep in the nodule. He inserted the needle 5 times (using ultrasound to guide him) and the whole thing was pretty quick. I have a low pain threshold and it really wasn't that bad. He called the next day to say that my nodule was Bethesda Cat V and I needed surgery. Fortunately, I was able to get an appointment with the surgeon a week later, and a surgery date of 4/25. Please feel free to ask me anything else. When is your FNA?
Nan

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