Newly diagnosed with thyroid cancer and have 2 main concerns

Hey all, I finally had a chance to catch up on everyone's latest.
@lise01 Sorry to hear about the lymph node situation. If you need help researching anything. let me know. I feel like no matter how many questions I ask, I never get a clear answer.
@cocha I assume that a definite carcinoma means it was Bethesda Cat VI, which is 99% chance of malignancy. Still very treatable and survivable. Of all the things I was worried about when I thought I had thyroid cancer, dying early because of it was not one of them.
@koh Let us know how it goes with your next blood work. I hope you start feeling more like yourself soon.
I think we could all use a crystal ball right about now JUST to help guide our decision-making. We all have so many questions for which the answers seem pretty elusive. TT or Lobectomy? RAI? Lymph nodes or no?

I'm still frustrated by the lack of communication, information, and follow-up on my surgeon's part. First he had a nurse call me with my path report (benign, as you know), but she couldn't answer any of my other questions. Then he had a PA call me last week for my follow-up appointment (when I was expecting to hear from the surgeon himself). The PA knew very little about my case, however, she noticed while talking to me that my labs from a month ago showed a high calcium level and high PTH (Serum parathyroid hormone) which pointed to hyperparathyroidism in my LEFT lobe that was left alone after my right lobectomy. I remembered my surgeon mentioning an enlarged parathyroid gland at some point, but he never brought it up again. I decided that I had to speak to him personally and we finally spoke today. He seemed to minimize my high parathyroid levels, but then casually added, "You'll need to get your lab work rechecked and if your calcium and PTH levels are still high, we'll just have to operate." I can't help but feel that IF he had seen my labs AND put that info together with the ultrasound he did prior to my surgery, maybe, just maybe, he could have gone in and grabbed the enlarged parathyroid gland and removed it during my first surgery. I would really rather not go through a second surgery so soon, but as with most of our journeys, only time will tell. More waiting. I tried to book a blood test for early June, but my surgeon's office said my endocrinologist should do it and my endocrinologist's office said they can only book labs associated with appointments and mine isn't until JULY. I don't know what people do who can't advocate for themselves. We must speak up for ourselves at every juncture until every last question is answered.

Great tips about the lymph nodes, @lise01 . I'll remember to ask that.

@hopeful23 sorry to see you go through all this. The surgeon and their team's attitude seems unprofessional and careless!

I had thyroid cancer thyroidectomy in 1990. I have had many scans through the years and never had to receive any ablation or radiation other than what is given for the scans. I also felt what you describe for a long time after, until they found the right dosage for me.

I have found with no thyroid, the difference between generic and name brand thyroid meds can make a difference. While generics do use the same active ingredient, there can be small variations in quantity and differences in inactive ingredients. My insurance has mail order drugs, and if I order through them I get the name brand regardless of my doctor allowing generics. The best thyroid doctors I have had all insist on brand name drugs.

Some doctors do not stress the importance of avoiding as much iodine as you can prior to the test. Read up on this if you don’t understand, and frankly even if you think you do. Iodine is potential in all processed and restaurant food; those need to be off the table when you prepare for the scan.

For many years my doctors have had me on a high cancer suppressive dose. Over the past 5 years they have been lowering my dose and I feel a lot better. It may be too soon for you to do that but continually check to see if you can get lower and still be at a safe suppression.

The short answer is you will have to be very aggressive with your medical team to make sure they know exactly how you are feeling. You may have to insist they either justify the need so you can accept the drawbacks, or convince them to deal with the issues issues.

In regard to natural thyroid meds. The issue with these is they are made from animal thyroid. Animal tissue is not as consistent, which can be a real problem with 100% of what you need comes from that source. I have never been offered those types of options, nor would I accept if they were.

Hey @hopeful23 thank you! I appreciate that. I am so sorry that you are dealing with all of this. I would be having the same reaction as you -- I totally empathize. I was expressing similar feeling to my mother yesterday, who is also a little disappointed in my surgeon. We were so impressed by his credentials but in the end I think he has too much on his plate (he's the director of oncology at the cancer center and on several boards -- just totally over-extended). It feels like he has been really dismissive of my little "unimpressive" microcarcinoma and that he may have skipped some steps that may have spared me from being in this position now. I had to insist that I get another ultrasound before we tried active surveillance (and that changed his mind to recommending surgery) ... and then I don't think he even looked at my ultrasound before surgery -- he just read the report (I asked him about my neck scan and he said that he didn't think the tech had scanned my neck, but I know for a fact he did because he was talking me through what he was taking images of on both sides, up to my ears). I have now read some papers that actually point out that even these small cancers can and do spread to lymph nodes, so why didn't he probe a little more? I know this process is not foolproof -- I just wish he would have been more attentive through this.

Are you thinking at all about consulting with another otolaryngologist about your parathyroid? I am trying to get a second opinion about where I am at now and what to do next, but it's hard to get an appointment. My surgeon actually asked me to consult with the first surgeon I had spoken to, to see what he would do. I guess its good his ego isn't too big to admit he'd like a colleague's input, but at the same time I feel less confidence now in him.

It is so frustrating to be in a position where you feel like you are doing all the research and getting educated, asking all the questions, taking the all the right steps, evaluating surgeons ... and then end up feeling like you didn't get the best care in the end. The thought of having another surgery soon is such a bummer -- especially when you feel things could have been done to possibly prevent that during the first one. To your point, you have to be proactive and advocate for yourself, but even when you are it can still go wrong. I can't get in to see an endocrinologist soon either -- my appointment is in August. Put health care system is really stressed, I know, but waiting 2-3 months is just too long.

Ugh!!!

Hi @lise01
A couple of follow-up questions for you...
Did your surgeon intend to take out your parathyroid gland when he removed your lobe, or did it just happen to be removed (along with the hitchhiking lymph nodes)? I don't think my surgeon even took out any of my lymph nodes. I think the plan was that he would take any that looked enlarged. I am SO foggy on this.

Are you thinking you'll need a second surgery to check more lymph nodes for cancer? Is that the question you want a second opinion for? I can't imagine my surgeon suggesting I ask someone else, then again, I can't imagine him doing ANYTHING. I have never met a more blasé doctor. I feel like I'm on a surgical assembly line...NEXT!!

My plan is to see my new endocrinologist in July and talk all of this over with him. He's the ONLY one so far who has given me the time of day and shown a bit of empathy. By then, I'll have new labs and he can help me consider next steps. I don't think I'll try to find an otolaryngologist for a second opinion. If my endocrinologist strongly feels that I might have a parathyroid tumor, I'll (begrudgingly) go back to the same surgeon and have him do it (I THINK).

Here if you need me.
Nan

@hopeful23 I completely agree with your "surgical assembly line" metaphor and with @lise01's experience of things going awry even when you have been very diligent with your research.

I have met 2 surgeons so far. The first one had not even looked at my ultrasound images carefully and did not conduct an ultrasound himself either, yet was very upbeat about my outcome. He seemed more like a salesman to me who was more interested in me doing the surgery with him.
The second surgeon, a very highly regarded specialist with stellar credentials, came with a retinue of 4 to the consultation. But he does seem maxed out and I'm afraid he and his team could miss out on some glaring issues which have already shown up in earlier scans/reports. They don't seem to be reading existing reports very carefully. Neither of them checked my prior medical history records or asked for them. It was just what I could tell them in 5-10 minutes of the 40 minute visit.
One surgeon recommended a laryngoscopy pre-op procedure and the other did not.

Well, I guess this is how the medical system is now. Everyone is maxed out. One has to rely on some amount of luck as well for a successful outcome.

He did not intend to take it. I actually had an appointment two days ago with one of his colleagues (he was out sick so colleague covered for him) who said that 10-15% of the time a parathyroid gland accidentally gets removed with the thyroid tissue. He added that since I have 3 more it shouldn't be a problem but shared that, for the surgeon, it's a little ego blow when one of them is lost on their watch. Um ... ok ... ?? I am seeing my surgeon again next week but not getting my hopes up that he'll put me at ease in any way.

Second opinion would be about further surgery -- whether it be removing the other lobe and all lymph nodes in the central compartment (and maybe RAI) or just removing more lymph nodes to get pathology on ... not sure if they would just do that? I know Clayman Thyroid Center often tests some lymph nodes prior to surgery (another FNA-like test) to see if any cancer is detected to help them navigate what to take. Not sure if that is a possibility.

My gut is telling me that if one hitchhiker node out of two had microscopic bits of cancer in it, that wasn't the only one. Both my surgeon and the one I saw two days ago said the traditional route would be to remove everything and maybe RAI, but these days they try to take the least aggressive approach and just watch. That doesn't really make me so comfortable as that approach is what got me here.

Wish you could get in sooner than July -- are you on their cancellation list?

Ditto on here if you need anything or want to vent. Lise

@cocha and @lise01
Part of me just wants to scream out of frustration at this whole health care FIASCO. It shouldn't be this hard to get docs to thoroughly review everything before they cut into our bodies, or to get better answers to our myriad of questions. Just knowing what I've gone through and what you two and others are going through makes me so mad. End of vent.

@cocha I felt like my surgeon very quickly scanned over my records and ultrasound report as well and I had to remind him of things that we had discussed previously. I ultimately brushed it off, telling myself that he has seen so many of these things, he knows what he's looking at here. I figured, at some point, you have to put your trust in them and let them do what they do. Moving forward, I'm going to listen to my gut about these observations, when something doesn't quite feel right and ask more questions and voice my concern if I feel like they aren't registering or hearing something I think is important.

BTW, I have gotten two laryngoscopies now, one before surgery and one after -- it's an odd sensation but not that bad at all. I actually felt relieved after they looked in there and confirmed that things looked healthy and were functioning properly.