Newly diagnosed with thyroid cancer and have 2 main concerns

The first surgeon I met said he looked at all my reports (ultrasound and blood work) and felt that I would be just fine. He seemed unreasonably upbeat to me. I'm not sure if that is normal? But I am going to compare that discussion with the other two I'm meeting next week.

Any tips on how to assess a surgeon would be highly appreciated! And what were the questions you all asked?

Hi @cocha , did he indicate what treatment he would want to pursue? I experienced a similar attitude with the endocrinologist and otolaryngologists/surgeons I have spoken to -- I think because these common papillary cancers are so treatable and have such a high survival rate (approx 98%) -- they just see a solution -- they see positive outcome. It's still scary to us and impactful to our lives, but to them I think it's pretty routine.

As far as choosing a surgeon, #1 is how many they do of these a year and what their complication rates are. Like @hopeful23 mentioned before, you want someone who does a high volume of these things.

Aside from the task at hand, removing any traces of cancer/suspicious tissue, there's a lot of sensitive stuff in there. I was most concerned about all laryngeal nerves, but particularly the recurrent laryngeal nerves. They can be tricky to work around as, from the way my surgeon described it, they can sometimes be almost stuck (I am paraphrasing) to the thyroid tissue. I am a singer so was particularly concerned about damage -- so it was upfront in his mind to preserve it. So that is something I would ask about -- their success rate with preserving both superior and recurrent laryngeal nerves.

I'm not sure if you are being given an option between lobectomy and thyroidectomy -- understanding the pros and cons of both is good to know, as they sometimes give you the option. (For instance, when a complete thyroidectomy is done they can do a blood test to monitor thyroglobulin levels and better detect possible recurrence. But with a lobectomy since only one side is being messed with, even if parathyroid glands, nerves are damaged you still have the other side intact and you may not need hormone supplementation.) Get them to list out all the pros/cons and share what, in their clinical experience, they think would be the best course of treatment for your particular case.

I will be asking this tomorrow at my post-surgical follow up appointment -- at what point and how do they determine that all the cancer has been removed -- particularly if they are finding any in lymph nodes. I've done a lot of research and it's still hard for me to wrap my head around completely. I'll share what I find out but I think it's a good thing to ask and have explained. I know they can't know if the cancer will recur, but at what point can one be confidently told they are cancer-free?

There are really so many questions -- but as hard as it was for me to ask doctors about complication rates, it's important to know. I actually had a hard time choosing between two otolaryngologists because they both have been doing these surgeries a lot for a long time and are highly regarded by their peers, had fellowships at the top cancer hospitals, do thyroid cancer research -- they are both just totally immersed in this. I went with the one who could do it sooner. I know some people go to general surgeons for these surgeries, which I think is fine if they do a lot of them, but I really wanted an otolaryngologist and specifically one associated with a teaching/research hospital so that I could feel confident that they are really on the front edge of research and treatment.

Advocating for yourself is so important too. If something doesn't register right, get on them about it. I bugged my doctor to do a follow-up ultrasound a few months early because I felt uncomfortable waiting. I had a not so great experience with the medical facility that first detected the nodule and wanted my doctor to get another ultrasound, and once he did he changed his mind about active surveillance and we did the surgery and found it had locally metastasized. I am so glad I went with my gut.

Anyway -- I could go on and on (there are so many moving parts to this) and not sure if any of this is addressing your concerns. If you have any specific questions please do ask!

Lise

Hello,

I was diagnosed with papillary thyroid cancer and had my whole thyroid removed, received radioactive iodine therapy, and am now taking 250mcg of levothyroxine for thyroid replacement therapy. I was diagnosed/ had thyroid surgically removed in February and feel like I am really tired. Find myself getting winded even just walking the mall. From what I am told this can persist up to two years and to keep pushing through to gain lost strength and stamina back up. My TSH levels dropped this month, hence the increase from 225mcg to 250mcg. The hardest part for me is waiting for the follow up scan to see if the radioactive iodine therapy did the job in killing the remnant cancer tissues or if I will need additional therapy to do the job. Best of luck on your journey.

I'm sorry you are going through that @erickauch . I am bracing myself for the possibility of a similar course of treatment. I know it can take a while to get the thyroid replacement dialed in -- and I really hope that happens sooner than later for you. I know a couple of very competitive endurance athletes who struggled with the same after thyroidectomy (and one who also had RAI) and it took a little time but they are back to competing and even winning. So there is hope!

Good luck with your follow up scan.

Hi @erickauch, the surgeon is also recommending a thyroidectomy for me. Do you mind sharing your symptoms prior to your diagnosis? What made the surgeon do a thyroidectomy as opposed to a lobectomy?

Quite frankly, I had no symptoms. Mine was caught by an MRI after having been rear ended in a car accident last November. During the MRI, they measured a mass that measured 2.9cm on the right lobe in January. I went in to Mayo around Valentine’s Day and had an ultrasound and biopsy done, and two days later was in surgery for the complete thyroidectomy. Once out the pathologist confirmed the diagnosis of papillary thyroid cancer with not one, but seven different tumors measuring 46mm in length. I had no problems or issues breathing other than my sleep apnea (been diagnosed for 12 years). Pain was minimal after the surgery, but highly recommend resting as much as possible. I had to have a subsequent surgery due to four post-operative bleeds caused by nausea after being sent home. I highly recommend having the anesthesiologist add anti nausea meds to your cocktail as it will save you the pain later. Pics post op and healed for reference.

Thank you so much, @lise01 - that helps a lot!

I am also checking out 2 surgeons locally who are both at premier teaching/research hospitals. One of them is recommending thyroidectomy even though they have found the problem only on one side and absolutely nothing on the other. But they are also giving me the option of going with a lobectomy if I feel very strongly about it.

Did they monitor you for a day at the hospital or let you go home the same day?

Thanks for the information @erickauch
I'll remember the anti-nausea meds!

Best of luck to you. You’re in good hands.

They let me go home shortly after I woke up. I felt pretty good -- pain was minimal (didn't even really need the hydrocodone they prescribed). I thought I would sleep the rest of the day but was up hanging with family and watching movies until a fairly normal bedtime.

One addition to what I had posted earlier, in case you haven't already planned to ask -- I would ask the surgeons if they would plan to remove any lymph nodes to send to pathology, and if so, how they would make the determination of which ones and from where. I bring this up because I learned yesterday that the two lymph nodes that were removed during my surgery were hitchhikers on the parathyroid gland that was removed with my left lobe. They were so small (.02 cm!) that the surgeon didn't even see them. One of them had a small amount of cancer in it. Since he did not take any other lymph nodes (I presume because he thought my little nodule was so contained) we have no way of knowing if that one tiny lymph node was the only one with cancer cells in it or if there are others still in there. So now I may need to have a second surgery.

So bottom line, since its not uncommon for spread to the lymph nodes, is there anything they will do beyond the removal (or partial removal) of the gland to maximize the chances of removing all of the cancer the first time around? Do they only take them if they look suspicious or do they spot check lymph nodes to be safe? Are there any other diagnostic tests/scans that can help them rule out that any lymph nodes are involved? I wish I had asked more of these questions before surgery. It may be a non-issue for you, but I think having this information could contribute to peace of mind post-surgery.

To @erickauch 's point, definitely yes on the anti-nausea meds in the cocktail. They did it for me and I was not sick afterward.