Newly diagnosed with thyroid cancer and have 2 main concerns
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.
Good luck with your upcoming appt!
As for Synthroid…. It is hard to get regulated. The side effects are similar to other issues so it’s hard to know if it’s the Synthroid, the thyroid, a vitamin deficiency, age, or some other cause.
I am currently with a new endocrinologist who is looking into lowering the dose I had….. unfortunately as I tapered down, I started having issues ( leg cramps, burning mouth, pins and needles, headaches, etc. ) I have to wait and see if things level off before jumping to conclusions on the lower dose. I am going to start researching the other options for medications so I don’t know about the more natural medications…. My cardiologist recently asked me if I had considered trying them.
The way I see it, you have to due diligence and make the best decisions for yourself. I like reading the feedback from people to see if it is something that might help me, however reading the research and gathering info is helpful to make decisions that will hopefully help you..
This is my first time commenting. I had my entire thyroid removed over 20 years ago. After surgery I went on the standard thyroid hormone, synthroid, then later levothyroxine. I felt better on the thyroid hormone after surgery than I did before surgery with my own thyroid. My doc has kept track of my T3/T4 levels and over all I've done well. She explained that when taking dessicated hormone the levels are very hard to control. I've been lucky that my body has been able to make the conversion. Good luck to you!
Thanks so much for your response, Bevr. I had just read so many negative reports about thyroid replacement drugs that it made me a bit worried. I appreciate hearing about your positive experience!
Thanks for writing, Koh. From what little I've read, most conventional endocrinologists don't like dessicated thyroid meds, so it's interesting that your cardiologist asked about them. I shouldn't assume I'll have problems before I even begin treatment. I am definitely doing a lot of research and trying to educate myself so I can ask all the right questions.
I am also 65 years old, and had first a partial, then a full thyroidectomy. I was put on levothyroxine post surgery. I did have significant side effects, but after my first bloodwork (6 weeks out), I told my endocrinologist all my symptoms (leg cramps, racing heart, night sweats, emotionality and anxiety…) and she lowered my dose. I feel MUCH better, and walk 2-3 miles/day, work 32 hours /week, and basically feel good. I am facing iodine radiation very soon- we'll see how that goes…..but advocate for yourself, and make sure your doctors really listen to you! You'll be okay!!
Thanks for your encouragement, Sweettoothd! I'm so impressed by your activity level and work schedule! I typically walk about 2-3 miles a day, too, but only work about 10-15 hours/week. If you're willing, I'm curious about the choice of partial vs full thyroidectomy and whether you wish you'd had the "full monty" the first time around. I've read a number of stories about people who had to have a full thyroidectomy after a partial. I'm sure my surgeon will have something to say about this, but before then, I'm trying to do my research. And how long after your surgery did you need the iodine radiation? Is that common? Thanks in advance.
Hi there.. I’m hopeful your surgery went well!❤️
I had a modified neck resection years ago.. significant metastasis to lymph nodes. Just prior to this surgery I had nerve repair for a severed accessory nerve, so everything was complicated. I can remember feeling terrible with surgery pain and even more from lack of thyroid. The meds took quite sometime to kick in and I felt achy, cold, major leg pain and just plain awful! It took several YEARS to get things adjusted. I still am not always on the right dose so at times needs adjustment. Pharmacy told me it’s a fine science. Be patient and do your research, don’t be put off by your Dr saying levels are normal range, if you are not feeling well, dosage may need adjustment. Best of luck in your recovery.
WELL, I met with my surgeon yesterday. The thing that blew me away was that he left it up to ME to decide whether to have a lobectomy or full thyroidectomy. I thought he'd have a strong feeling one way or the other. I've been researching the heck out of this and I'm leaning towards a lobectomy, but I'll tell ya, a crystal ball would come in very handy right about now. It feels like such a crapshoot, a gamble, a rolling of the dice, and I'm someone who sees things in black and white and doesn't deal well with gray. Any thoughts? I know each case is different, but was anyone else left to make this decision themselves?
I also was told that the decision was mine. Both my doctor and surgeon told me it was a personal decision but thought that the lobectomy was a viable option given my nodule size. they told me that if I was comfortable with close monitoring of the other lobe, then the lobectomy is the way to go. I plan on doing that but of course I am still second guessing it.
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!