cancer %

[jjomalley1]

is there a much greater chance of thyroid cancer if the nodule is hard, cold and larger than say 4cm?

[SPOAKmom]

were all the complex cysts biopsied and found negative?  then found to be cancer after being removed?

[utahmomma]

My sisters, my daughter, and I all had complex cysts.  I was the only one with a solitary nodule - the rest had up to 6 complex cysts.

Papillary and follicular cancers are not *supposed* to be hereditary.  Yeah - whatever.  :-)  If there is a family history of thyroid cancer and you have complex cysts the protocol now is to have a complete thyroidectomy (just in case).  They are still looking for a genetic link but, last I checked in with the geneticist who is studying my family and 6 families worldwide, they haven't found it yet.

Both follicular and papillary carcinomas can be treated by RAI.  Medullary and anaplastic cannot.  So, follicular and papillary carcinomas are easier to find (even with metastases) and kill - the RAI acts more like a scalpel than regular chemo which is more like a shotgun approach to killing cancer.

[SPOAKmom]

Thanks for your reply.   My moms thyroid cancer was papillary (which I hear is the best kind).  Her BRACA test was negative (with regards to Breast Cancer).  

It was nice to see your optimistic outlook on the RAI treatment.  I was a bit reserved with that when I read how you need to stay clear of people and towels etc... I thought if it is that toxic for everyone else around me, then what must it do to me.

I noticed that your sisters had negative biopsies (like mine).  Were they then removed and found to be cancerous, were they complex?.  I have a fear that mine is a false negative.  Seems they only pentrate the liquid part and not the solid end when they biopsy.  

[jjomalley1]

Hi Utah,
My FNA results came back today and whiel I donlt have them in front of me, it went something like this.
No papillary, but Hurthles neoplasis possible, with suspicion of follicular lesion.
So, I know I have surgery scheduled for Monday , the dr. will have a pathologist do a frozens section on the table etc...
What are the chances of folliculr and what is the prognosis in you experience of talking with others?
D

[utahmomma]

Because of your family history (what type of thyroid cancer does your mom have?), the growth of the nodule, and the fact it is complex . . . yes, surgery would be indicated.

They normally take the entire thing out because the most common form of thyroid cancer (papillary) has microcancers which grow in other areas of the thyroid.  If it is cancerous, and it is encapsulated (or at least contained in the thyroid itself) they may not recommend RAI.  I only needed it because I had a recurrence - my youngest sister needed it because it had already spread into her lymph nodes.  The two other sisters with papillary carcinoma have never needed RAI.

After they remove the entire thyroid they will monitor your thyroid levels and your thyroglobulin (Tg) which is the thyroid cancer marker.  As long as your Tg level remains stable they won't need to do RAI.   Mine started climbing and that is how they found the recurrence.

RAI is a really cool cancer treatment.  The iodine molecule is radiated and the remaining thyroid tissue/cancer absorbs it which kills it off.   Yes, it does go all through your body but that is good since the cancer can spread.  It doesn't have the side effects of chemotherapy or external beam radiation.  The chances of breast cancer are only slightly increased but it does kill off the thyroid cancer (which is good!).

Do you know if it is a genetic breast cancer (BRCA 1 or 2?) - that would be triggered by the genetic mutation and estrogen, not so much from radiation.

Feel free to PM me about any of this.  You may also want to start your own thread so more people can answer.

Take care

Utah

[SPOAKmom]

After reading here, I thought you might be able to give some insight to me.  Docs tell you stuff, but it is great hearing from the people who have been thru this.

I have had two negative biopsies on my 2.5 mm nodule and it is complex (hard and soft).  It has grown for the third time now and at about 1cm per year.  Doc says take it out... mom just had thyroid cancer as well as parathyroid tumors when they went in.  I guess I am the product of "caution" now because of family history.  I see yours is very strong.

Here is my delimma, I know it is suspicious at this point and I am ok with having a partial to remove this.  Still a 5% change this could be cancer and that biopsy was incorrect, in that case they take the entire thyroid.  However, I am not so open to taking RAI given all the thyroid and breast cancer inmy family and now I hear they are linked. Is the other half removed soley for cancer tracking purposes or do they believe that cancer can also grow on the other side as well.

Still somewhat confused?  going in December... love to hear different insight.

[jjomalley1]

I just had the biopsy on Monday afternoon, so no results yet. I'll keep you updated, thanks

[utahmomma]

Was there a large amount of blood found on the FNA?  If not, there is still the discussion about the surgery for the suspicious nodule.  If there was, you need to discuss whether surgery is needed to repair the bleed/aneurysm.

[jjomalley1]

Yes, but the dr said a cyst could have infringed upon a blood vessel and caused a bleeding into the cyst area. This might appear as a hard nodule on scan. His thought because of my insistence that this was not a gradual thing, but suddenly felt one day in the shower.

[utahmomma]

But the growth was *prior* to the biopsy, right?

[898]

I was not able to find exact percentage; but the "dried" blood may show as solid on the ultrasound.

[jjomalley1]

Would an intranodualr bleed been read as hard on the ultrasound? My ultrasound showed 75% hard, 25% cystic, but the nodule DID grow very quickly.

Thanks

[utahmomma]

ENTs are typically a good type of surgeon for thyroid surgeries - they know the neck structures well.  Just make sure that he does *lots* of these - not just a few a month.

Talk to him about the pathologist - it's a very important way to prevent having to have the surgery twice (and if, god forbid, it is cancer slowing down your followup treatment).

I know there are some on here who have driven quite a long distance for their surgeries.  If this ENT doesn't do *a lot* of these surgeries you might want to explore the facilities in Burlington and Albany.

Is your hospital a large one that can handle delicate surgeries, provide the nuclear medicine followup (if cancerous), and be ready for anything that might happen?  I'm just asking because there are some I know who went to small, community hospital because they were an hour or so closer to their homes and didn't get nearly the level of care they should have had if they would have driven a bit farther.

Bigger doesn't always mean better when it comes to hospitals but the level of care you can get at a Level 1 trauma center is far different than what you will find in a small, community hospital.

Just my $.02

Hang in there.  Send me a PM on here anytime if you have specific questions and I'm sure that there will be many others answering your posts soon who have also "been there, done that"

HUGS!!!

Utah

[jjomalley1]

Hi and thanks.

I felt ok about this ENT. He did a more throrough job explaning things to me. He does these surgeries himself. What do you think about this? I live in upstate New York (Plattsburgh) about three hours from Albany and an hour from Burlington, VT

Thanks

[utahmomma]

It's true, short of getting a "lucky" biopsy where they actually find papillary carcinoma (and there are many, many times that the needle will miss the cancer and find normal cells instead), the *only* way to determine whether or not there is cancer in your gland is to have it removed.

Your nodule of 5.5cm is very, very large and any surgeon would recommend removal.  Talk to the surgeon before hand though and discuss having a pathologist in the OR so they can do a "frozen cutdown" right then and there.  If cancer is found in the OR then they can take the other half out without having to put you through another surgery.  It's not a bad surgery, considering, but any surgery is better to only have once.  (Unlike my experience).  If it is cancer you will need to have the entire thyroid removed anyway for followup treatment.

It sounds like the endo you saw today is more on the ball than the first one you saw.  What were your feelings about him?  Did he have a recommendation for a good surgeon who does a lot of these surgeries (you don't want a rookie for this one)?

Please hang in there and keep us posted!

Utahmomma
papillary carcinoma '03, second surgery '04
  recurrence and RAI '06 and '08
three sisters with papillary carcinoma (2 had "negative" biopsies)
another sister with precancer and daughter with precancer

[jjomalley1]

Hi again,
Took the advice and called a second ENT (there are actually only two in my town) He had my records faxed and did a needle biopsy in his office today. EH said this will only indicate if there is papillary (?) cancer. He has suggested I consider removal of the left thyroid gland. States there is only 25% of it left - the rest being over run by the 5.5 cm nodule. He said that is really the only way to know for certain if there is another cancer. Any opinions?

[898]

Some benign nodules can grow on alarming rate if the intranodular bleeding took place.
Again the ULTRASOUND should be done BEFORE the RAI scan and biopsy!

[utahmomma]

Have your OB/GYN's office refer you to a radiologist to do the ultrasound and FNA ASAP.  You also need a surgical consult.  Three weeks is a long time to wait when you are wondering about this and it is growing quickly.

The ENT (or an endocrinologist) can wait until after the FNA and/or surgery but you need to get the FNA, surgical biopsy, and/or surgery consults going.  Endocrinologists deal with regulating your thyroid meds and, to some extent, ENTs can too.  Some ENTs are also valuable surgeons but don't wait three weeks on a deadbeat who can't even bother to call you before taking off for a month!

The nodule is very large (if you are talking 5.5cm - not mm) and complex (mixture of solid and cystic).  Size alone is reason for surgery.  Having it grow so quickly is concerning.  

Call the OB/GYN and have her find you a very experienced, very excellent surgeon for a consultation/biopsy.  Ask the OB/GYN who she would recommend as a surgeon if it was in her throat (that usually cuts through the politics).

If you give us an idea off what city you are in there may be someone out there who has a recommendation for a great surgeon, endo, and ENT.

Sorry but welcome to the horrible world of idiot doctors.  We've all had a few, toss this one on the heap of horrible doctors then move on.

[jjomalley1]

I wish I knew the answers to these questions. My dr, (who I called just for this situation, an ENT) left town the day after he saw me. That was the 8th of Oct. I had never seen the man before, so essentially have no relationship with him. All I know is what I stated, which I shamefully coerced out of the receptionist over the phone. I had this forwarded to my OB-GYN, ( I have no primary care dr) . She called me back within an hour to say I needed a biopsy, but could wait utnil the ENT retunred in three weeks. This grew ( or at least became apparent) fast. I am not comfortable waiting three weeks. Any suggestions? The nodule is 5.5 by 3.3 by 3.5. 75% hard, 25% cystic and palpable (whatever that means)

[utahmomma]

Yes.  Solid (hard), cold (not producing thyroid hormones), and larger than 4cm are all worrisome signs for thyroid nodules and would all be reasons for biopsy and/or surgery.

http://www.endocrineweb.com/thyroidca.html

Give us more information about your condition, labs, scan results, history, etc.

Utahmomma
papillary carcinoma