Avatar universal

ongoing thyroid cancer saga - what to do next?

I have recently had a thyroid lobectomy for a nodule that was suspicious for lobectomy.  I have multinodular goiter, caused by Hashimoto's, and the original pathology was difficult to diagnose because had some but not all indicators of cancer, so they sent it off for an outside opinion.  I was told that even if it is cancer, it's gone, so I won't need anymore surgery!

I got the results back from Cleveland Clinic today - apparently 3 of my nodules (not just my one suspicious one) have tested positive for papillary thyroid cancer, thank goodness none are invasive, but I have a feeling this doesn't bode well for my remaining left thyroid lobe which has lots of its own nodules (as well as my isthmus which has a nodule).

The report reads:

Right thyroid lobe, excision:
-Multiple nodules of papillary thyroid carcinoma:
      - Encapsulated oncocytic variant of papillary thyroid carcinoma, 1.1 cm.
      - Noninvasive encapsulated follicular variant of papillary thyroid carcinoma, 0.9cm.
      - Oncocytic follicular variant of papillary thyroid carcinoma, 0.9cm.
-Chronic lymphocytic thyroiditis with multinodular hyperplasia
-No parathyroid gland tissue seen.

Right level 6 lymph node excision:
- One lymph node, negative for metastasis.

Right neck level 6, possible parathyroid, excision:
- Lymph node, negative for metastasis.
-No parathyroid gland tissue identified.

I have talked to my nurse practitioner (PCP) but not my ENT/surgeon yet about these results.  (And my NP called before I saw them, so when she said it was positive I was all "I know, I thought the suspicious one might be, but now it's gone."  I didn't know it was 3 nodules).    I'm not overall concerned about metastasis at this point since none of the results suggest it has spread, and I know papillary thyroid cancer is easily treatable and now that it is out it is most likely cured.

My concern is that my remaining left thyroid is very lumpy (one nodule is 2.9cm), and because 3 out of the 8 on my right were positive for cancer I am worried about my left.  Should I push for my ENT to get the remaining lobe (and isthmus since that has a nodule as well) out?  Should I try to get her to let me start taking thyroid hormone now to slow down further growth?  Do you think she is going to want to just leave the left lobe in?

Last (and only) time my TSH was tested it was at 3.44, and I have many hypo symptoms, but am not (or before surgery was not) "out of range" with free T3 and free T4 so my ENT didn't want me to start thyroid hormone.

Ugh... wish it was just one nodule with cancer but my thyroid is packed full of surprises for me this year.

5 Responses
Avatar universal
and by "suspicious for lobectomy" I mean "suspicious for neoplasm/cancer"... was taken by surprise this afternoon and a little too hasty clicking submit.  Sorry!
Oh and there's more info on the cancer:

Thank you for sending this challenging case in consultation.
The thyroid shows a background of chronic lymphocytic thyroiditis and nodular hyperplastic changes with background variable nonspecific cytologic atypia.  Sections show three distinct nodules with diagnostic nuclear features of papillary thyroid carcinoma such as crowding, elongation and enlargement, irregular nuclear folds, pallor and nuclear grooves.  One nodule (well seen on slides B4 and B5) measures 1.1cm microscopically.  This nodule shows an oncocytic follicular neoplasm with pronounced nuclear features of papillary thyroid carcinoma, dense colloid, and a partially infiltrative border.  This nodule is located adjacent to an oncocytic neoplasm with solid, follicular and papillary architecture, a thick capsule and nuclear features diagnostic of papillary thyroid carcinoma.  Dense colloid is seen.  The capsule on this nodule shows distinct linear/columnar interruptions in the capsule that surround the neoplasm.  Because the tumor intrusions on the capsule do not penetrate all the way through it, I am unable to classify these as true capsular invasion.  Also, the shape and configuration of these capsular foci raise consideration of biopsy/fine-needle aspiration effect.  A third nodule, best seen on slide B3, shows a noninvasive encapsulated follicular variant of papillary thyroid carcinoma, microscopically measuring 0.9cm.  This nodule shows rare true papillae.  None of these nodules are associating with angiolymphatic invasion or perithyroidal tissue invasion, and they do not approximate the inked surface.  Due to at least one exclusionary criteria for each nodule (e.g. size, true papillae, oncocytic changes, and infiltrative contour), these are not classified as NIFTP.  I have also shown this case to my colleague on the Head and Neck service (named here), who agrees with this interpretation.  

My thoughts:  
The most "infiltrative" one is the original, suspected neoplasm that is 1.1 cm with a partially infiltrative border.  That nodule was hypoechoic on ultrasound (the only one in my whole thyroid) and was starting to infiltrate the border, and it's gone now so that's good.

The other two are 0.9cm each which is small, the one adjacent to the 1.1cm has distinct linear interruptions which they think may be "biopsy effect" - my suspicious nodule was posterior, so they had to go through the front of the lobe to get to it, and this suggests they went through this nodule - we had to do 4 biopsies on the one nodule because we sent material for Afirma testing, so probably lots of columns there.  

None of the nodules were associated with angiolymphatic invasion (lymph system or blood stream), which is good, and none "approximate" the inked surface which I believe means all are fully contained in the thyroid, which is good.

Avatar universal

While I was typing out that last comment, my ENT called to let me know what was going on (so great responsiveness from my ENT!)

My hospital should have faxed the results to the ENT first and not my PCP... my ENT had no idea the results were back until I messaged her and had to request they be faxed over... but she read them right away and called me to make sure I understood what everything meant ...

She is pushing me to get the left half out because she doesn't want to take the risk that there is cancer in there and give it a chance to grow more/invade, which is good.  She also said that technically only two of the nodules were cancerous since one was fully encapsulated and according to changes in definitions 5 years ago it means one of the three is not cancer, but then said she wants the rest of my thyroid out.

I may have to undergo radioactive iodine uptake tests etc. depending on what they find on the left side.  So far nothing seems to have gotten out of the thyroid, but maybe multiple 1cm sized cancers will trigger a radioactive iodine uptake test regardless to make sure nothing has spread??

I have not scheduled surgery yet, but she said she thinks her 1st available will be first week in August, so hopefully I get this all out of the way sooner rather than later (will schedule in a couple of days since the office is closed on July 4th, and she called me after 5pm so too late to schedule with the scheduler today).

I am relieved we are both on the same page about the next step, and now that I've had one surgery and recovery is going really well, I feel less anxious about the next surgery.  My ENT said that my remaining right parathyroids (which are still in there after the first surgery because they weren't on the pathology report) should have enough time to heal and should be functioning ok when the left side is removed, but I won't be released from hospital until she checks calcium levels.  (Still might not be an overnight stay).  I am feeling less anxious about this second surgery because I handled the anesthesia fine, woke up alert and coherent and with it, and I kind of know what to expect.  It's not great to "have cancer", but so far nothing is sending serious alarm bells off in my head, just a "get it out before it can do any real damage" feeling, and I feel so much better now that I know what the next step is.

For anyone who is reading this ongoing saga and thinks "wow there's a lot going on with this woman's thyroid", according to my ENT, I have long term untreated Hashimoto's and this is a very unusual case.  I'm glad my doctor is on the same page as me for treating it.  My grandmother had her whole thyroid removed when she was 47 in 1975, and we don't know if she had cancer or not but it is quite possible she had something similar to me.  

Thanks to everyone who has been so supportive with all my posts - I tend to get anxious when I don't understand what is going on/ when I'm not sure what the next step is in treatment, and it's great to have people who have been through similar situations and can offer guidance.

649848 tn?1534633700
It's probably not wise to speculate as to whether your doctor will want to leave in the left lobe, but I'm guessing she will or she'd have done a TT instead of a partial... so we'll go from there...

Was there an FNA done on the left lobe of your thyroid when the original biopsy was done on the left lobe?  If not, that would be the first thing I'd want done since you also have nodules there and on the isthmus.  2.9 cm is big, so I can't imagine she would not have done an FNA on that.  If there was FNA done and/or there was nothing suspicious at the time, I'd insist on regular ultrasounds relatively close together to make sure things aren't changing.  And if those nodules grow or become altered in any way, insist on an FNA.

I would insist that the endo start thyroid medication immediately because that can sometimes help shrink nodules.  Of course, we can't forget that you have the hypo symptoms that have to be dealt with and since you've had them for some time, there's a great likelihood that since a whole thyroid couldn't work hard enough to alleviate them, half of one, certainly can't...

Of course, for your own peace of mind, you could just insist that the remaining lobe and isthmus be removed and get it over with... Then you'd not have the worry of more cancer AND you'd know they would have to start you on thyroid medication...

As far as your path report, I'm sure it was quite a jolt to learn that more than the one nodule was cancer.  I'm sorry to hear that.  

As has been noted on a previous thread, Hashimoto's is sometimes referred to as "lymphocytic thyroiditis".     "nodular hyperplastic changes with background variable nonspecific cytologic atypia" may refer to what has been determined to be papillary cancer.  I think you've pretty well pegged the rest of it.
Hi Barb135,

Thanks for your comment.  My ENT got back to me (I posted an update as another comment but I'll summarize here).  She also was surprised that more than one nodule was cancerous because the pathology from the hospital I had the surgery at only suspected the one suspicious 1.1 cm one, and said she was very glad she sent out for another pathologist to look at.  She thinks the best course of action is to have the remaining thyroid removed and I agreed with her.  

That 2.9cm nodule on the left side was originally measured as 2.2 at my first ultrasound, but the biopsy doctor/pathologist performed another full ultrasound and said that it was actually much bigger (I measured it myself before any ultrasound as close to 3cm by holding a tape measure up to my neck, so neither the pathologist or I thought it had grown in the two weeks in between).  It has a hypoechoic outside layer (I found out about this last week after my surgery when I was looking at my preop folder and didn't realize it had extra biopsy information I hadn't originally seen) and infiltrating blood vessels, we did do a biopsy in two places on it but those came up benign (but with something that big, there's always the chance the biopsy missed something).  We did biopsies on the one suspicious nodule on the right side (the 1.1cm which seems to be the "worst" of the cancerous ones, and probably punched through the one with "columnal/linear" infiltration four times because we did 2 for the original biopsy, then 2 to send to Afirma.  We just did the two biopsies on the one big one and the one hypoechoic one, so it's possible we would have picked up on the other nodules if we had biopsied them, but since they were all isoechoic on ultrasound we just did the biggest which was the left side one.  Anyway, left lobe is coming out soon.

It was a bit of a shock to hear multiple nodules are cancerous, and my ENT seems surprised by this because she had no idea from the original pathology and said this was a very unusual case for her.  So far, the ones on the right lobe had not fully escaped their capsules, but that suspicious one was definitely trying.  I'm hoping the ones on the left side are at about the same progression as the other two carcinomas (if there is cancer on the left), but I know it's possible I'll need radioactive iodine.  Anyway, ENT and I are on the same page and she is planning on doing another lobectomy, hopefully it will go as smoothly as the first.  I am out of town next week, so if we do surgery first week of August (not scheduled yet, but she said she thinks that's available), my preop appointment will probably be at my 4 week follow up and I will ask her  if she thinks I should start hormone treatment before the surgery or wait until we get pathology reports back from the 2nd lobectomy and decide about radioactive iodine.

Do I wish I had a total thyroidectomy to start off?  I don't know - no one predicted there'd be more than one cancerous nodule so I think we went with the best information we had at the time and can't change it now.  I am feeling a whole lot less anxious now that we have a plan in place, I know what to expect with the lobectomy, and my hypothyroidism will finally get some treatment.  My hypo symptoms aren't nearly as debilitating as what I have read about here, but sure would be nice to have a normal menstrual cycle again (and not heavy/prolonged which I hate).  When I first discovered my nodules, I was so anxious because it had potential to be cancer, but odds were so low then.  Now that I know it's cancer, for some reason I'm not nearly as anxious... I guess I know what needs to be done and I'm doing it, so there is less to worry about now.
649848 tn?1534633700
Well, I told you it wasn't wise to speculate... lol  I'm glad the endo is on the same page with you as far as having the other lobe removed...

It seems that there's always relief once the plan is in place and we know what direction we're going to go.

If there's a chance you'll need RAI, most likely you'll have to wait to start thyroid medication because you'll have to go off the med for RAI anyway.  That's unfortunate, but then once you get on med you won't have to go off again.
Thanks Barb!

The earliest I would have started thyroid medication was July 20th (my 4 week follow up from the lobectomy), delaying it until after the pathology is back from this next surgery only pushes it back a couple of weeks so I'm fine with that.  I know it might not feel great to be without any hormone until after RAI but it might need to be done.  I'm hoping that my surgeon will want to send out the pathology to another lab again just to make sure left side is ok since her normal hospital missed  two of the carcinomas on the right and I'd like to know for sure if what they find on the left is encapsulated or not.  I am glad I got the right side out before anything could spread.  

I know thyroid cancer can run in families - I'm not sure if I should push my siblings to get thyroid ultrasounds since mine is probably a combination of genetic predisposition for thyroid cancer plus long term untreated Hashimoto's, so they might not be at such high odds to have it if they don't have Hashi's, but my little sister (32) has some hypo symptoms which makes me a little worried for her.  My mom wants to get an ultrasound because her mother had her thyroid removed at 47 (could have been cancer, we don't know), I have thyroid cancer (37) - she doesn't have any symptoms of hypothyroidism, but she's never had her thyroid tested at all for hormone or antibodies.  
Avatar universal
Good luck Sarah I just read your thyroid cancer saga. I'm 18 months out from thyroidectomy (pap cancer) and Its not been a fun trip for me more downs then up but at least you found this site much sooner then me. Grace
Hi Grace,

Thanks for the support!  I hope you are doing well now.  I don't know if you've read any earlier questions of mine, but I tend to get very anxious if I don't have all the answers or know what's going on, so even though we know it's cancer now, having a plan in place makes me much less anxious about the whole thing.  

I'm hoping I won't need RAI but I'm sure it'll be fine if I do - I was worried about the first lobectomy, but now that I've done one and know what to expect, I'm less worried about the second (today is the first day I was allowed to start running again, two weeks after my first lobectomy, so I think my morning run helped bring stress way back down too).
Hi Sarah,
I did not need RAI since my cancer was contained in the thyroid and I'm glad about that.  Don't worry to much about the surgery part if you and you endo are 100% positive it's cancer that will be the easy part as far as RAI cant say much just hope you dont need it.

If I could go back in time I would have prepped better with my endo making sure that all proper blood test and meds were agreed upon and ordered with a solid treatment plan....I regret not doing this and sticking to my guns, Endos are flakes and number lovers and very considerate of the patients complaints....Grace
Endos are inconsiderate when it comes to the patients complaints.
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