The THYROID Thread

[Christine]

Hi, all,

I just found this thread after spending so much time at the DCL and DVC threads, as well as others while planning vacations for the last couple of years. Amazing that I haven't seen it until today! I had thyroid cancer 20 years ago, with a recurrence 10 years ago. I had a biopsy this October for a growth detected during my regular neck ultrasounds: it was inconclusive so I'm just waiting for my next scan in April.

How great to find yet another helpful thread on the DIS

es45--Welcome!

Out of curiosity, can you tell me what your initial treatment was 20 years ago. I am always curious about the events surrounding a recurrence so far after initial diagnosis.

 

[es45]

es45--Welcome!

Out of curiosity, can you tell me what your initial treatment was 20 years ago. I am always curious about the events surrounding a recurrence so far after initial diagnosis.

I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.

 

[Christine]

I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.

Thanks, I always like to know.

I was told that a near-total left a larger chance for recurrence, especially with multiple tumors (always some thyroid cancer in the remaining tissue). It sounds like you did not have RAI either?

 

[es45]

Thanks, I always like to know.

I was told that a near-total left a larger chance for recurrence, especially with multiple tumors (always some thyroid cancer in the remaining tissue). It sounds like you did not have RAI either?

No, not until 10 years later for the recurrence. Incidentally, I had 3 tumors before the surgery, so that fits what you were told too.

 

[MariDisney]

I was diagnosed with papillary cancer and had a near-total thyroidectomy. At that time I was told that I would just take "1 little pill every day and not have to worry about this again." I don't think a good job with thyroid suppression was done on my part or my doctors so I think that is why it recurred 10 years later.

That's basically what the surgeon said to me yesterday (see post above). Can you talk a little about what you mean about not doing a good job of supression? You have me much more freaked out than I was yesterday!!

 

[es45]

That's basically what the surgeon said to me yesterday (see post above). Can you talk a little about what you mean about not doing a good job of supression? You have me much more freaked out than I was yesterday!!

Sorry, don't mean to freak you out. I was not made aware of how difficult it can be to maintain the right TSH level, especially if you aren't checking it regularly. I was going in once a year for a check-up, not every 3 months. I was taking my Synthroid at all times of the day, missing it some days and doubling up the next. I know how crazy it sounds now and I have no excuse other than being a 19-year-old college student with too much to remember. Of course I was never told to go to an endocrinologist either and my internist said that once a year testing was fine. Now that I'm forty, I know better.

 

[Christine]

Sorry, don't mean to freak you out. I was not made aware of how difficult it can be to maintain the right TSH level, especially if you aren't checking it regularly. I was going in once a year for a check-up, not every 3 months. I was taking my Synthroid at all times of the day, missing it some days and doubling up the next. I know how crazy it sounds now and I have no excuse other than being a 19-year-old college student with too much to remember. Of course I was never told to go to an endocrinologist either and my internist said that once a year testing was fine. Now that I'm forty, I know better.

es45--

Thyroid cancer treatment has come a LONG way in 20 years. I was diagnosed 14 years ago and it was changing then.

I remember when I was diagnosed (1995), my doctor told me that they used to treat thyroid cancer with just a lumpectomy. Then they found that it was recurring too often, so then they would just do a near-total (like you had) leaving one piece behind to "help" the patient feel better. By the time I got to my situation, the medical community was discovering that this was problematic. Too many people were popping up with recurrences. That started the protocol of TOTAL thyroidectomy followed by RAI in ALL cases. So, that was just starting in 1995. As I participated in my support group, it was easy to see that lots of doctors weren't getting the word and many people were not following up with RAI.

To be honest, I don't think your lack of suppression was the real culprit. You obviously had multi-focal papillary (so did I) which has a high rate of recurrence without total removal and subsequent RAI. TSH suppression is just small part of that. I doubt the suppression would have stop those tumors from getting bigger. My guess is they were there in that leftover piece of thyroid tissue you had.

I am now considered a low-risk case. TSH suppression is problematic for me. My doctor and I agree that I can keep my TSH at 0.3. I wouldn't do that if I was early in treatment but I feel okay doing it now.

 

[es45]

To be honest, I don't think your lack of suppression was the real culprit. You obviously had multi-focal papillary (so did I) which has a high rate of recurrence without total removal and subsequent RAI. TSH suppression is just small part of that. I doubt the suppression would have stop those tumors from getting bigger. My guess is they were there in that leftover piece of thyroid tissue you had.

You don't know how much better I feel reading that. I still get irritated that I didn't pay more attention then and I have often wondered if my mistakes put me to where I am now.

 

[MariDisney]

es45--

Thyroid cancer treatment has come a LONG way in 20 years. I was diagnosed 14 years ago and it was changing then.

I remember when I was diagnosed (1995), my doctor told me that they used to treat thyroid cancer with just a lumpectomy. Then they found that it was recurring too often, so then they would just do a near-total (like you had) leaving one piece behind to "help" the patient feel better. By the time I got to my situation, the medical community was discovering that this was problematic. Too many people were popping up with recurrences. That started the protocol of TOTAL thyroidectomy followed by RAI in ALL cases. So, that was just starting in 1995. As I participated in my support group, it was easy to see that lots of doctors weren't getting the word and many people were not following up with RAI.

To be honest, I don't think your lack of suppression was the real culprit. You obviously had multi-focal papillary (so did I) which has a high rate of recurrence without total removal and subsequent RAI. TSH suppression is just small part of that. I doubt the suppression would have stop those tumors from getting bigger. My guess is they were there in that leftover piece of thyroid tissue you had.

I am now considered a low-risk case. TSH suppression is problematic for me. My doctor and I agree that I can keep my TSH at 0.3. I wouldn't do that if I was early in treatment but I feel okay doing it now.

I hope no one is bothered if I continue to ask some questions.

Do you think the size of the tumor matters? My impression from my surgeon yesterday was that since the tumor was verysmall (3.5mm) and it wasn't near the margin of the thyroid that RAI would most likely be unnecessary. He said RAI is looked at for a tumor around 10 mm or larger. Since the whole point of getting rid of my thyroid was so I could get back to fertility treatments (and I am nearly 41), having RAI would set me back in that regard to a point I do not want to be. In other words, RAI would delay fertility treatments for at least a year, and that is just not in my plan! What are your (everyone's!) thoughts.

 

[luvmarypoppins]

Mari - that is a good question. I honestly dont know. I know Micayla is dealing about some of your conception issues too, maybe she can comment on what her endo said. My tumor was not mm but 12.5 centimeters!! I think that was the primary then they think mine went off and made another tumor and lodged itself in a lymph node. I am wishing you all the best.

 

[mrsklamc]

Mari-

With absolutely no medical education and solely based on my own logic and what my doctors have told me, here's what I think.

Thyroid tumors are normally very slow growing. Doctor yesterday said I'd probably had this for 20 years. AND if they said you don't need RAI I assume they know what they are talking about. Endo yesterday told me that pregnancy hormones FLOOD your body and they impact thyroid/cancer cells the same way. SO- I'd say pursue your pregnancy, and after the baby is born they will probably scan you again...plenty of time for RAI if needed at that point, would be my take on it, based on my very limited knowledge.

 

[Christine]

You don't know how much better I feel reading that. I still get irritated that I didn't pay more attention then and I have often wondered if my mistakes put me to where I am now.

Well, I'm no expert but I have spent the last 10 years heavily involved in mine and other people's thyroid cancer and your situation is very common for someone diagnosed at that time. Had you not had multifocal papillary, you probably would have been fine with your near total. Since you did have it, you most assuredly had remaining thyroid cancer in that little piece they left.

It is pretty well known that Synthroid, even in high doses, does not cure or stop thyroid cancer. It merely can slow its growth. I'd say that is pretty true considering you didn't have trouble for 10 more years. It really is hard not to second guess things.

I'm still mad at myself that, at the beginning of my treatment, I didn't take a deep breath and do more research (internet support groups were not available to me then). I didn't go with the best doctor/facility that I could have and I feel that some mistakes were made in my initial treatment that caused me problems later. I will always blame myself for not taking the time to check things out. I blame a lot of other people around for not speaking up too. My ex-MIL, for instance. She worked in the endocrine pathology lab at NIH at the time of my diagnosis. She insisted that my pathology slides be sent to her boss, who is a world reknowned endocrinology pathologist, for a second look. They confirmed the pathology. Well, I find out later that my MIL was not happy with the surgeon and endo I picked, she KNEW who the best ones were, but decided to keep that info from me so she wouldn't "hurt my feelings." What's up with THAT? She certainly didn't mind getting my pathology slides.

 

[Christine]

Do you think the size of the tumor matters?

Yes, it matters.

My impression from my surgeon yesterday was that since the tumor was verysmall (3.5mm) and it wasn't near the margin of the thyroid that RAI would most likely be unnecessary.

Your tumor size and location is the best of all possible circumstances. As long as it wasn't considered "multi-focal" your doctor is mostly correct.

He said RAI is looked at for a tumor around 10 mm or larger.

As far as I know, current medical practice is that for tumors 10mm or smaller, RAI is given on a case-by-case basis. There are some doctors that would ablate you for this. On one of the listserv support groups I follow, the doctor who moderates has noted cases where there has been spread to lymph glands with "micropapillary" tumors. It does go against "textbook" to see this because one would figure that if you don't see it near the margin, it didn't go past the margin. The doctor never really explain HOW this happens. Maybe he doesn't really know. It could be through the bloodstream or the lymphatic system. The point is--it does happen. I'm not trying to scare you or tell you that your doctor is wrong. I think most doctors will follow what your doctor is doing. But I have noticed that the doctors that are on the cutting edge of thyroid oncology (and there are only a handful in the US) seem to lean toward RAI in all cases.

I

n other words, RAI would delay fertility treatments for at least a year, and that is just not in my plan! What are your (everyone's!) thoughts.

My thoughts--in your case I would probably feel very comfortable in NOT getting the RAI. I think the odds are with you that you will be fine. As another poster pointed out, it is very slow growing in most papillary cases and you will be scanned again. Not having RAI does make it wee bit harder to follow you up with bloodwork (tumor marker tests) and scans because you are not fully ablated. Even with a total thyroidectomy, you will still have residual tissue that will take up iodine on a scan (and light up) and you may produce thyroglobulin because you still have cells. You will most likely benefit from regular palpations of the neck and ultrasounds of the neck.

 

[MariDisney]

Yes, it matters.

My impression from my surgeon yesterday was that since the tumor was verysmall (3.5mm) and it wasn't near the margin of the thyroid that RAI would most likely be unnecessary.

Your tumor size and location is the best of all possible circumstances. As long as it wasn't considered "multi-focal" your doctor is mostly correct.



As far as I know, current medical practice is that for tumors 10mm or smaller, RAI is given on a case-by-case basis. There are some doctors that would ablate you for this. On one of the listserv support groups I follow, the doctor who moderates has noted cases where there has been spread to lymph glands with "micropapillary" tumors. It does go against "textbook" to see this because one would figure that if you don't see it near the margin, it didn't go past the margin. The doctor never really explain HOW this happens. Maybe he doesn't really know. It could be through the bloodstream or the lymphatic system. The point is--it does happen. I'm not trying to scare you or tell you that your doctor is wrong. I think most doctors will follow what your doctor is doing. But I have noticed that the doctors that are on the cutting edge of thyroid oncology (and there are only a handful in the US) seem to lean toward RAI in all cases.

I

My thoughts--in your case I would probably feel very comfortable in NOT getting the RAI. I think the odds are with you that you will be fine. As another poster pointed out, it is very slow growing in most papillary cases and you will be scanned again. Not having RAI does make it wee bit harder to follow you up with bloodwork (tumor marker tests) and scans because you are not fully ablated. Even with a total thyroidectomy, you will still have residual tissue that will take up iodine on a scan (and light up) and you may produce thyroglobulin because you still have cells. You will most likely benefit from regular palpations of the neck and ultrasounds of the neck.

Thank you very much for your comments. I'm not sure it isn't multi focal because of what I'm about to post here now that my pathology report is right in front of me. There are 4 points under "Diagnosis".

"Bilateral near total thyroid resection"
1. papillary carcinoma, lower lobe maximum dimensions 3.5 mm closest margin 1.2 mm
2. residual thyroid with focal adenomatous changes, chronic inflammatory foci, consisten with treated hyperthyroidism.
3. scattered microscopic foci suggestive of incipient papillary carcinoma, not at margins.
4. Hurthle cell adenoma, maximum dimensions 4.8 mm, excised

Since I am new to this whole thyroid cancer idea (about 36 hours now) I'm still reeling and trying to just figure out what all these words mean. Of course, I will be asking many many questions of my endo when I see him on the 18th. I know at some point I'll be scolded for getting my medical information from an internet message board. But, it does give me great comfort "talking" to some people who have been this before. Naturally, every single thing I ask about here will be asked of the doctor as soon as I can.

In terms of the near total, the surgeon did say it was as darn close to total as he could do. He said he almost never "says" he did a total because you can never be sure if you've gotten every thyroid cell. It made sense to me! (and he's the head of oncological surgery at a respected hospital, so I feel like I was in good hands)

Thank you all for any more insight you might provide. I am learning so much from you all.

To the PP who mentioned being sloppy, so to speak, about taking the synthroid early on. I will say that I learned here how important it is to take it carefully. I am getting the brand name stuff and taking it on an empty stomach at the same time each day and then not eating for about another hour.

 

[Christine]

T
3. scattered microscopic foci suggestive of incipient papillary carcinoma, not at margins.

This statement above indicates that you could have multifocal papillary. They don't come right out and say it--they say suggestive. Which it looks like it means that they see some cells consistent with early formation papillary cancer. This is what I had and so did es45. I had one tumor that was just under 1 cm and then, according to my pathologist, I had small cells "like pepper" in the gland that were not tumors but were papillary cancer cells.

Just know that if there is any piece, remnant, cell, of thyroid tissue left in your neck, those cells are still able to grow.

I hate saying things like this because I know they scare people and sound awful but when it comes to this stuff, I don't want to sugar coat it. I've seen too many doctors/surgeons who don't really *know* what thyroid cancer can do down the road. There are a few in the country that do know and they are pretty aggressive.

 

[mrsklamc]

Just out of curiousity, does anyone know offhand what they state as the cost of RAI? (i.e. my surgery pre-insurance was listed at 30 or 40 thousand dollars.)

I'm wondering what the cost of a scan is because I am thinking of going with a high deductible health plan. I know it sounds crazy but I think I will be spending quite a bit out of pocket anyway and there IS an out of pocket maximum that we do have the ability to cover.

 

[jennz]

Wow - I knew it was a lot but didn't know that much!!

 

[luvmarypoppins]

Wow - I knew it was a lot but didn't know that much!!

Wowsa!! I didnt know it was that much either!! I cant imagine what my hospital bill must have been last year, 7 surgeries, coma, icu, 4 cat scans, 7 units of blood, emergency room etc. oh and of course add in the RAI. and the overnight stay etc. My ins. co does not send me those kind of statements. They only do office visits with co pays and then I did get about 2 biopsies which I challenged for being out of network etc

OT - Jenn - I am just wondering if you are friends with the poster Scarlett (Brandy) who was trying to adopt a little girl from China? I know she lives in IN too. I was wondering how things were going with her.

 

[es45]

I know a lot of you with thyroid problems experience extreme fatigue. How about irregular sleep patterns? Are there strategies for dealing with it?

I can't stay awake past 8 some nights but I'm up again at midnight until 4 in the morning. It certainly makes for a long day. It is better than it was before (when I was asleep at 5) but it is not fun when you are fixing dinner, helping with homework, or just trying to spend time with family.

 

[Christine]

I know a lot of you with thyroid problems experience extreme fatigue. How about irregular sleep patterns? Are there strategies for dealing with it?

I can't stay awake past 8 some nights but I'm up again at midnight until 4 in the morning. It certainly makes for a long day. It is better than it was before (when I was asleep at 5) but it is not fun when you are fixing dinner, helping with homework, or just trying to spend time with family.

es45--

I have had bouts of that. I remember one time in particular. It was so bad, i went to my GP and we tried things like Sonata and Ambien (which apparently don't work for me). I just suffered through and it finally just stopped. Never knew why it started or why it stopped. I was miserable though.