# Need thoughts....



## teri2280 (Feb 7, 2012)

*Warning: This is gonna be LONG.*

I'm not sure on what I'm thinking on this subject, so I'll post it here and get your guys' thoughts. It has to do with my papillary thyroid cancer and upcoming thyroidectomy, but I couldn't really find a "right" place to put this. You will understand more as you read it, and to the mods: feel free to move this if you think it'd be better in another area of the board....

For the past 4 years I have been attending what we will call Clinic A for my birth control and paps. Now, this clinic is named ______ Clinic, BUT it is a part of my town's only hospital system. All bills received from there, before I had insurance were from the hospital system, NOT ______ Clinic. I had a family doctor, but the "clinic" worked with me when I didn't have insurance, and I received a reduced rate. I used the "clinic" only for birth control purposes.

I'm going to give you a timeline. It'll be easier.

January, *2011*, I go to the aforementioned "clinic" for my routine pap smear. The doctor finds a lump on my thyroid. She runs the thyroid blood tests (T3 and TSH, I THINK), they come back normal, and she tells me I have a goiter.

Over the course of the next year, I totally forget about the goiter. There are no checks on it to feel if it's gotten bigger, even though I go to the "clinic" every 12 weeks for my birth control shot (Depo).

Fast forward to 2012.

Jan 10- I go for my pap, through the same "clinic", but it's a different doc than last year. He feels the lump, and tells me to make an appt. with my family doc.

Jan 17- I meet with my fam doc, a really great guy, and he orders 2 thyroid blood tests (the same 2 as the previous year, but I don't realize that until later, of course), a blood sugar test, a cholesterol check, and RAI imaging of my thyroid.

Jan 24- I do the above tests that were ordered by my family doc.

Jan 25- Family doc receives the results of the tests and imaging, and wants to do an ultrasound. Doc's nurse tells me I have a goiter. I kept thinking I'd heard that term (goiter) before, but couldn't remember where, and googled it when I got home that evening.

Jan 31- Ultrasound at the hospital.

Feb 1- Fam doc receives u/s results and refers me to a endo. (The only one in my town.)

Feb 3- I luck out that week, the endo had a cancellation, and I'm in to see him. He is also part of the same hospital system as the "clinic", and has all of my records from birth til now at his disposal on his computer. Needless to say, he has the thyroid blood tests back from Jan of 2011 on his computer, and I of course finally remember where I'd heard the term goiter before...It was the doc from the clinic telling me I'd had one. (This is where I saw that the 2 thyroid blood tests done were the same in both 2011 and 2012.) Local endo suggests thyroidectomy. Gives me a list of surgeons (in Columbus, OH, Ann Arbor, MI, and Cleveland Clinic). I pick one, and local endo's secretary sets me up an acct. w/ Cleveland Clinic. They call and set the appt.

Feb 23- Hubby and I travel to the Cleveland Clinic. My surgeon is the head of the endocrine surgery department, and is 99.9% sure that it's cancer. She won't be 100% sure until she actually has a biopsy done (something that isn't easily done with my thyroid intact because of tons of calcium deposits), but considering that it's the Cleveland Clinic, AND she's the head of the dept, I'm sure she knows what she's talking about. TT set for Mar 16. It's a day that my surgeon doesn't do surgeries (she usually only does them on Tues and Thurs), but she is basically creating a surgery day for me. If we were to wait until her "normal" schedule allowed me to get in, it wouldn't be until late April or early May, and SHE doesn't want to wait that long. (She totally suggested doing surgery on a "non-surgery" day, not us.) This makes me believe more and more in her, and that it IS cancer.

My hubby and I have talked about this a LOT recently (of course, lol), and are beginning to wonder if I've been living with papillary cancer for a year (at least) now. My thyroid blood tests were also normal this time around, as they were in 2011, so obviously cancer doesn't equal hyper or hypo thyroid in my case. The hubby and some friends of mine are starting to think that I have some sort of a medical malpractice/negligence case, and I'm beginning to think the same. I mean, if the "clinic" had ordered some imaging back in 2011, it seems possible to me that the goiter (if it was smaller then than it is now) could have been taken care of back then, and had imaging been done, I might not have cancer now.

What are your guys' thoughts? Hubby is telling me to talk to a medical malpractice lawyer, and I'm beginning to agree with him. What would you do?


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## webster2 (May 19, 2011)

I don't know what to tell you. Thyroid cancer is usually very slow growing. I had thyroiditis two years before I was diagnosed but the doctor didn't mention it. I know I would have flipped out and demanded more testing as I only had half a thyroid then. So, I felt absolutely terrible for 2 years with menopause as the supposed culprit and my GP telling me my immune system was shot, and could I posibly have AIDS. If I had been treated when the thyroiditis was found I might not have had cancer or Graves disease full blown. I think people with thyroid issues always have, what is and could have been done differently thoughts...

I wish you the best for your upcoming surgery, and recovery.


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## sonnyjane (Oct 6, 2011)

Hmm. I'm pretty sensitive to malpractice stuff, since I think it tends to be abused, so I won't necessarily tell you what you should or shouldn't decide.

What I will say is that my nodule was also discovered during a routine pap visit. My doctor observed that I had a noticeable nodule in my throat and ordered imaging and bloodwork. My blood tests were also normal. The ultrasound showed several nodules, including one larger one (2.7 cm), so they decided to do a biopsy. The biopsy came back as being positive for papillary cancer. My doctor said that it was very possible that I had it for years, and it is VERY slow-growing, so much so that I wanted to have my surgery scheduled for when my husband was home (he's in the military), and so the option was to either wait for a cancellation and have my surgery in November, or wait until my husband came back in April. Luckily there was a cancellation and I could have it in November, but my doctor said it really wouldn't have mattered whatsoever if we waited five more months. In other words, there was no sense of urgency.

If you do indeed have cancer now, I'd venture to guess you had it a year ago, but that's just my guess. Even if after you have your thyroid removed they don't find cancer, in cases where circumstances are suspect, they will usually recommend surgery anyway. I was "lucky" in that I had a positive cancer result before surgery, so I knew going in. There are many, many people that have surgery simply because there is a possibility that they have cancer, and in fact many times it is found that they did not, but it's a "better safe than sorry" situation where doctors would rather take it out than take a chance.

As far as not getting the imaging in 2011, I'm not familiar with goiters, so I'm not sure what S.O.P. is, but you yourself said that you forgot about the goiter even though you went back in to the clinic every 12 weeks. Was it the same doctor each time you visited?


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## joplin1975 (Jul 21, 2011)

I feele like I can't answer before noting that I'm likely biased since I have so many relatives in the medical field, all of whom have been involved in lawsuits of all kinds.

My thought, really, is...to what end? That is, what damages are you claiming? I think a good number of posters on this board struggled with getting to the bottom of a cancer diagnosis. It happens a lot (not that this is acceptable, to be clear). My surgeon said mine had likely been growing for onwards of ten years.

The delay in diagnosis is unfortunate, to say the least, but, if it is cancer (and if it is papillary) your outcome/prognosis would very likely be the same.


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## sonnyjane (Oct 6, 2011)

joplin1975 said:


> My thought, really, is...to what end? That is, what damages are you claiming? I think a good number of posters on this board struggled with getting to the bottom of a cancer diagnosis. It happens a lot (not that this is acceptable, to be clear). My surgeon said mine had likely been growing for onwards of ten years.
> 
> The delay in diagnosis is unfortunate, to say the least, but, if it is cancer (and if it is papillary) your outcome/prognosis would very likely be the same.


So much more succinct than what I wrote lol. Yes, I agree with Joplin


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## Prairie Rose (Nov 17, 2011)

I don't see a gross medical malpractice suit here AT ALL.
The doc did give you some info, you stored it away and forgot about it til your next visit, so really, where is the malpractice?

Best of luck to you in your surgery and healing. Look upward and be positive.


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## teri2280 (Feb 7, 2012)

@ Sonny- Yeah, it was always the same person who did the shots every 12 weeks as the one who originally said goiter.

Thanks, folks. I'm not sue happy or anything. I'm just trying to get some thoughts on what other people think. I know it's a tough subject, and I debated for a WHILE whether or not to even post this. I'll probably wait until after the TT when they have me do a full body scan, and see if it's spread. (No offense, but if it has spread, I'll probably have to seriously consider talking to a lawyer.) Right now, it's just one of those things that's kicking around in my head (and adding more stress of course).


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## webster2 (May 19, 2011)

I think this was the appropriate place to ask your question. You would have any feedback, if you hadn't asked. We have lots of feedback.

FYI, I refused an FNA two times. THe doctors thought my chances of cancer were between 5 - 20 % at best. Cancer was a walk in the park for me, compared to the Graves. JMHO.

Best wishes, and a swift recovery.


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## Octavia (Aug 1, 2011)

One day, a lump "suddenly" appeared in my neck. It had never been there before. Or so I thought. It turned out to be papillary cancer.

In reality, though, it had been there for quite some time. I look at photos from a few years ago, and it was there. How I didn't notice it is beyond me.

My thinking in your situation is to wait and see what your surgery, pathology, and scan show, then evaluate your situation again once you are more informed about the outcome. Right now, you have such limited information about what's really going on in there.

Relax for now and concentrate on a successful surgery and recovery. Keep us posted.


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## joplin1975 (Jul 21, 2011)

I also think it was an appropriate question and don't take offense to your response. I would, however, encourage you to really educate yourself about staging before you spend time, energy, and perhaps money on a lawyer consult.

See:http://www.cancer.gov/cancertopics/pdq/treatment/thyroid/HealthProfessional/page3

Saying the cancer "spread" is sort of vague. Mine was not confined to the thyroid and had spread minimally to some of the lymph nodes. Again. The prognosis was the same...the outcome was the same (same as if to had not spread, that is)...and the treatment was the same.

If you are talking about serious spreading, like to another organ - liver, kidney lungs, etc. - then you might have a case. Or, if it is not papillary, then maybe. But if not, well...

I get the anger and frustration...I've dealt with that myself, too. My advice is to just take a deep breath and focus on your treatment and recovery. Right now we don't even know if you have cancer and my Granny always said there's no point in borrowing tomorrow's trouble.  Good luck.


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## webster2 (May 19, 2011)

I agree with Octavia and Joplin, as usual.

I also apologize for not proof reading..egads, a librarian not proof reading. I am offering advice, which means you don't ave to take it, but since you know you are having surgery...prepare your surroundings to have the most pleasant comfortable recovery that you can.

And, when you have the reports in hand, you can make your decision; whether to move in another direction, or not.

Best wishes.


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## Andros (Aug 26, 2009)

teri2280 said:


> *Warning: This is gonna be LONG.*
> 
> I'm not sure on what I'm thinking on this subject, so I'll post it here and get your guys' thoughts. It has to do with my papillary thyroid cancer and upcoming thyroidectomy, but I couldn't really find a "right" place to put this. You will understand more as you read it, and to the mods: feel free to move this if you think it'd be better in another area of the board....
> 
> ...


Firstly, I would take care of myself and do what needs to be done. Then see what the pathologist has to say. It is also my humble opinion that the ball was in your court in that the patient was expected to follow through on the goiter pronouncement.

Hoping that all goes well for you re your surgery and recovery. That is the main issue in my very humble opinion.


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## lainey (Aug 26, 2010)

A couple of things.

First, thyroid cancer is not detected by blood testing. Your blood test results themselves, unless they showed clear thyroid disfunction, would not have led to further imaging.

Second, technically, there is a difference between a goiter, which is what you were told that you have, and a nodule or cyst, which is a direct lump on the thyroid.

A goiter is a swelling of the thyroid, it can often been seen or felt, but it is a general overall inflammation, and is generally not cancer itself.

A nodule is an individual adenoma of the thyroid. Cysts are fluid filled sacs. Depending on their size and location, they can be seen or felt. Nodules and cysts are structural abnormalities, and above 1 cm in size should generally be biopsied.

So, the terminology makes all of the difference here as to the requirements for further testing. If the original doctor indeed felt a goiter, not a nodule or cyst, no further testing was necessarily warranted at that point. Nodules and cysts can come and go quite quickly so it is not inconceivable for you to not have one a year ago, but to have developed one recently.

So as you can see, the negligence is really only if you had a nodule or cyst a year ago that was of a size that warranted further follow up at that time--they have no control over the changes that have had happened since then, especially considering that the standard of care takes into account that statistically cancerous lesions are rare, and when of a small size, they are typically slow growing.

Negligence or malpractice would assume that you suffered some harm as the result of a delay in treatment. The next question would be, what is the outcome of the surgery? If there had been a cancerous nodule a year ago, the course of treatment would have been the same as it is now. If the pathology does show cancer--then it matters if it has spread--having it or not is a moot point, the time passed only matters if it has spread, and then you again have to cycle back to a year ago, and see if they ignored the standards of care for what you actually had at the time.

If your prognosis is no different now than it would have been a year ago, I honestly think you a little ahead of yourself talking about malpractice. This really won't be known until you have the results.


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## I DClaire (Jul 31, 2011)

I had ultrasound and nuclear scans, etc., every six months for 3 1/2 years and very little about the condition of my thyroid was detected, and what was was pretty much misdiagnosed by an internist's PA initially and then by an endocrinologist. I eventually found an endocrinologist who recognized that I had a problem but, even then, it was my request for surgery (because a drug I was taking for hyperthyroidism was making me sick) that eventually led to the discovery that I had a small cancer in my thyroid.

I've spent a lot of time shaking my head, wondering how on earth so much was missed, how an Ear, Nose and Throat specialist could possibly say the reason I could barely swallow three weeks before surgery was allergy and acid reflux, how all those tests never indicated a thyroid three times bigger than normal filled with cysts and nodules...but the idea of a malpractice claim has never crossed my mind.

Like others have said before me, my recommendation is to concentrate right now on finding out exactly what you're dealing with and then try to work through it. I can't recall anyone else's endocrinologist or surgeon ever saying they were so sure (99.9%) about cancer without the necessary tests.

Personally, I don't believe in malpractice lawsuits unless something extraordinarily neglectful or preventable has happened. I can't help wondering under what circumstances the little cancer I had would eventually have been found but I don't dwell on it.


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## teri2280 (Feb 7, 2012)

I DClaire said:


> I had ultrasound and nuclear scans, etc., every six months for 3 1/2 years and very little about the condition of my thyroid was detected, and what was was pretty much misdiagnosed by an internist's PA initially and then by an endocrinologist. I eventually found an endocrinologist who recognized that I had a problem but, even then, it was my request for surgery (because a drug I was taking for hyperthyroidism was making me sick) that eventually led to the discovery that I had a small cancer in my thyroid.
> 
> I've spent a lot of time shaking my head, wondering how on earth so much was missed, how an Ear, Nose and Throat specialist could possibly say the reason I could barely swallow three weeks before surgery was allergy and acid reflux, how all those tests never indicated a thyroid three times bigger than normal filled with cysts and nodules...but the idea of a malpractice claim has never crossed my mind.
> 
> ...


Yeah, the 99.9 number from her kinda shocked my hubby and I too. We definitely weren't expecting to hear that from her. But, as we were making our 2+ hour drive home, we started talking, and figured that there are 2 big factors in play here: 1) She's the director of the endocrine surgery dept at Cleveland Clinic, and 2) It's the Cleveland Clinic....they probably see stuff like this multiple times a week. (OK, maybe not THAT much, but they see it a whole heck of a lot more than the local docs here in Findlay do...LOL.) With those 2 factors, I truly believe that she is right, but on the other hand, I'm not trying to "complete my bucket list" (for lack of a better term), either. I've done a lot of googling, and I've learned that papillary cancer is definitely one of the "easier" cancers to overcome, assuming that it hasn't spread.

I'm just going to take it one day (or test/procedure lol) at a time. To tell you the truth, I think I just got a little "spooked".  Granted, I had good reason to get spooked (family history of both cancer and hypothyroidism, but I'm by far the youngest, and zero family history of this specific cancer), but that's really all it was. You guys are right- worrying about this without KNOWING is just going to stress me out all the more, and that's definitely something I don't need to add on right now. Shoot, there's already enough stress in my life without the stress of a malplractice case. I'll just be a good girl (no sarcasm intended- looking back it sounds like there was lol) and wait and see what happens in a couple of weeks. The good thing about my surgeon being at Cleveland Clinic, she'll know for 100% what it is before I even wake up from the anesthesia.  (And I'm hoping that it's one of those cases where 99.9 doesn't equal 100.)


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## joplin1975 (Jul 21, 2011)

I totally get the being spooked thing. Absolutely understandable.

Just so you know (and aren't disappointed), she'll be able to tell you what she *thinks* it looks like when you wake up...and she may do some frozen sections during surgery for an almost positive result...but the official, official results won't be back until pathology has had a chance to really dig into your thyroid. It took four days for me to get the path results, which were nothing particularly surprising, but interesting to read (especially the adjectives they used, e.g., "glistening tissue" :tongue0013.


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## teri2280 (Feb 7, 2012)

joplin1975 said:


> I totally get the being spooked thing. Absolutely understandable.
> 
> Just so you know (and aren't disappointed), she'll be able to tell you what she *thinks* it looks like when you wake up...and she may do some frozen sections during surgery for an almost positive result...but the official, official results won't be back until pathology has had a chance to really dig into your thyroid. It took four days for me to get the path results, which were nothing particularly surprising, but interesting to read (especially the adjectives they used, e.g., "glistening tissue" :tongue0013.


Had to LOL @ the "glistening tissue"...My surgeon used the term "sparklies".


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