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.

Thanks @hopeful23 .

My FNA is scheduled for tomorrow. I had a few more questions -
I picked the first endocrinologist who had an appointment available. I do not know how skilled she is. For an FNA does the skill level of the doctor matter? Can there be adverse side effects if it's done inaccurately?

I do have another highly regarded endocrinology group (at UCSF) close by, but it will take time to get an appointment there. Should I just go with the first available for an FNA and choose surgery (if it comes to that) with the experts in the UCSF group mentioned above?

Thanks for any advice you can provide! (I have been in great health all my life and am blindsided by the discovery of this nodule.)

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Hi again,
If it makes you feel any better, I didn't shop around for endocrinologists either. I was assigned to the first one (and the youngest) in the practice my PCP referred me to who had an appointment, and as I said, even that took 4 months. I never had a chance to ask about his skill level. What I loved about him was his bedside manner and his compassionate approach to care. When he told me he'd be doing the biopsy RIGHT THEN, I didn't have time to worry about the procedure. He took 5 different samples, presumably so that at least one or two would be in the right places to get the best sample from the nodule. That's why they use ultrasound during the FNA, to guide where the needles are placed. I don't think there's a high risk of side effects from an FNA. I think the most important thing is zeroing in on the right areas to get the samples.

As for surgeons, I have read that one of the best predictors of a good outcome from a lobectomy or thyroidectomy is the volume of these procedures a surgeon does in a year. I had a general surgeon who supposedly did a high volume of thyroidectomies. So when it comes to choosing a surgeon, it's quite reasonable to ask about the volume of procedures done in the practice. Because thyroid tumors are usually slow growing, I personally would wait for the most highly recommended surgeon(s).

I totally understand where you're coming from. I've always been in great health too, and this threw me for a loop!
Good luck tomorrow!

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@hopeful23

Hi again,
If it makes you feel any better, I didn't shop around for endocrinologists either. I was assigned to the first one (and the youngest) in the practice my PCP referred me to who had an appointment, and as I said, even that took 4 months. I never had a chance to ask about his skill level. What I loved about him was his bedside manner and his compassionate approach to care. When he told me he'd be doing the biopsy RIGHT THEN, I didn't have time to worry about the procedure. He took 5 different samples, presumably so that at least one or two would be in the right places to get the best sample from the nodule. That's why they use ultrasound during the FNA, to guide where the needles are placed. I don't think there's a high risk of side effects from an FNA. I think the most important thing is zeroing in on the right areas to get the samples.

As for surgeons, I have read that one of the best predictors of a good outcome from a lobectomy or thyroidectomy is the volume of these procedures a surgeon does in a year. I had a general surgeon who supposedly did a high volume of thyroidectomies. So when it comes to choosing a surgeon, it's quite reasonable to ask about the volume of procedures done in the practice. Because thyroid tumors are usually slow growing, I personally would wait for the most highly recommended surgeon(s).

I totally understand where you're coming from. I've always been in great health too, and this threw me for a loop!
Good luck tomorrow!

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Thank you so much for this detailed response! And great advice on picking a surgeon.

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@lise01

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

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Hi Lise,
I’ll be thinking of you tomorrow. I’m sure all will go well.
Nan

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@hopeful23

Hi Lise,
I’ll be thinking of you tomorrow. I’m sure all will go well.
Nan

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Hi Nan,

Thank you! Trying to stay calm and positive.

I'm so glad to hear you are continuing to do well, and hope you don't have to wait too much longer for your pathology results.

Reading the most recent conversation with @cocha -- I was also asymptomatic and it was only discovered incidentally for follow up on whiplash in a car accident. I am also very healthy ... vegetarian, eat organic, don't drink, am a competitive endurance athlete ... and there's zero incident of cancer in my family. So I was really blindsided by this too.

Thanks again for checking in! I'll post once I'm back online!

Lise

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Hi Nan,

Just following up on surgery yesterday. Surgery went perfectly. Nodule was small and totally contained in the left lobe -- no lymph nodes or anything else involved. So barring any surprises with pathology, which my surgeon isn't expecting, this should be it. He said he see's no reason to remove the right side. That was a huge relief.

I feel much like how you described your day after -- neck is sore/a bit of a sore throat, particularly when swallowing, but I feel myself overall. Did a nice walk today too -- making myself take it easy though. The most irritating thing now is I am experiencing hot flushing of my face and chest. Not sure if it's reaction to anesthesia in my system still or hormone levels acting up because of the trauma yesterday.

And my incision has shifted from pink to a lovely deep plum color today. 🙂

How are you holding up? Any word yet on pathology results?

Lise

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Yay Lise!
I was hoping to hear good news from you! So glad it went well and that you're likely done with it.
Now that you mention it, my face was quite red for a day or so. I didn't feel flushed, but it looked like I had a sunburn. It must have been from the anesthesia. You're smart to take it easy. I think I was so excited to feel well that I overdid it a bit.

I called my surgeon's office today to ask about path results and there was nothing. I'll have to put it out of my mind for now. Other than feeling like I'm in limbo, I'm fine. Still sore, but getting a little better every day.

I'm so glad your surgery is behind you. Here's to smooth sailing ahead!
Nan

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Great to hear that, @lise01!!

@hopeful23 and @lise01 Please keep us posted on progress.

Wishing you all a very smooth recovery!

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@cocha

Great to hear that, @lise01!!

@hopeful23 and @lise01 Please keep us posted on progress.

Wishing you all a very smooth recovery!

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Thanks for well wishes @cocha! Did you have your FNA yet? I've been a little distracted by surgery the past few days, but please feel free to reach out to if you have any questions at all about anything at all.

Lise

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@hopeful23

Yay Lise!
I was hoping to hear good news from you! So glad it went well and that you're likely done with it.
Now that you mention it, my face was quite red for a day or so. I didn't feel flushed, but it looked like I had a sunburn. It must have been from the anesthesia. You're smart to take it easy. I think I was so excited to feel well that I overdid it a bit.

I called my surgeon's office today to ask about path results and there was nothing. I'll have to put it out of my mind for now. Other than feeling like I'm in limbo, I'm fine. Still sore, but getting a little better every day.

I'm so glad your surgery is behind you. Here's to smooth sailing ahead!
Nan

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Hey Nan, sorry you're continuing to have to wait ... all the waiting, for me, has been one of the hardest parts of his whole process. I hope you get some more answers soon.

I think I may have overdid it a little yesterday too -- I felt really good when I woke up so ran errands, etc. ... but definitely feeling more sore and swollen today. Still, it could be a lot worse -- just have to be better about resting, which I am not good at!

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