Suggestive papillary carcinoma

[mc8737]

Hi,

I'm in a very good shape, perfectly healthy and 35 year old.  At my yearly routine exam my PCP felt something on my thyroid so she told me to have an ultrasound, the ultrasound showed some sort of nodules on the upper right thyroid. As a result I had FNA on lower left and upper right thyroid.  The result came out as on my right thyroid "suspicious cells present, abnormal cells suggestive papillary carcinoma".  It was a shock for me.  I'm speechless when I learned that from the endocrinologist!  The endocrinologist suggested me to have a surgery to remove completely my thyroid gland on the right, then if it's cancer, the left one will be out as well.  I will be then on drug for the rest of my life and go through some sort of radioactive iodine!  

I believe the purpose of FNA is to see whether it's cancerous or not, no such thing of suspicious or suggestive cancer, am I right?  Once my right thyroid glands are removed, and if they're NOT cancerous, then I just lose something good something still functioning for nothing!

Has anybody been in my situation?  What did you do?

For this kind of situation do I need a endocrine surgeon or a general one will do the work?

Thank you so much for your help.  I sincerely appreciate your advices/help.

MC,

[AJ1234]

Your post brings back a lot of memories for me...I almost could have written it myself 6 months ago because my situation was somewhat similar.  I was 30 when my nodule was found on my right side, but my FNA was negative.  The report said it was consistent with severe Hashimoto's thyroiditis (which I had since I was 20) but it did not mention anything about cancer.  My endo wanted to keep watching it and take a "wait and see" approach.  So 6 mos. later I had another ultrasound and then he wanted to do another FNA.  At that point, he also gave me the option of a partial thyroidectomy.  I was tired of the roller coaster of tests, waiting, etc. and not really knowing for sure what was going on.  I felt like my life was on hold so I decided to have the surgery.  I went to an ENT surgeon and he said he would take out the right side with frozen section.  If it was found to be malignant, he would do a total thyroidectomy.  It ended up being papillary carcinoma so I had a TT.  My surgery was on Feb. 3rd and almost 4 months later after RAI I'm doing pretty well.  What I didn't realize back then was that it would still be a roller coaster now.  For me, the difference is that I know what I'm up against instead of speculating.  I hope everything goes ok for you.  I know it's a hard decision to make.

[me99502]

You are in the same situation I was in last October.  My FNA came back suspicious and my endo recommended a partial thyroidectomy, or full thyroidectomy if cancer was found during surgery.  During the surgery in December,  the frozen section was performed, and the results came back negative.  A week later, when I had my follow-up visit with the surgeon, she told me that the final pathology report did, in fact, show that I had papillary thyroid cancer.  At that time, I was given the choice whether or not I wanted another surgery to remove the other half.  I had another ultrasound, and while there were nodules present, nothing looked "suspicious" on that other half, so I chose not to have it removed.  I am living with half my thyroid, and I'm not on any thyroid meds at all.  I have my 6-month appointment next month, and i will have blood work and another ultrasound to see if the nodules have changed/grown.  If so, I believe my endo will recommend radioactive iodine ablation, rather than surgery.  My surgeon was a general surgeon.  

[candiotti]

mc8737, I am in a similar situation. My surgery, which will be performed by an ENT doctor, will be on June 8. I am incredibly scared and shocked about being in this situation, but I have been told that the only way to rule out cancer if with this operation. I really wish there were other options, but my results also came back "suggestive."

@ AJ1234, how is life a roller coaster right now? It would be very helpful to understand what your life is like now without your thyroid.

Thanks

[AJ1234]

Candiotti,
I was referring to the fact that it can take some time to regulate your medication after a TT.  I still have follow up dr. appts, another scan this Fall and depending on the results, we'll see what the plan is from there.  Going hypo and the LID were tough but being away from my son for RAI was the worst.  The actual TT wasn't that bad.  It has been difficult to understand and accept the fact that I have (had?) cancer.  I guess there was a part of me that thought all of this would be over after surgery.  I can tell you that I'm feeling better every day and there are days where I feel completely like my old self.  I hope everything goes well for you on June 8th.

[mc8737]

Thank you so very much all for taking your time to give me your opinions/advices on this matter.  I am still feeling very bad about this news and find it difficult to accept the fact that I'm having cancer!  I've been so healthy and never had any problem even a small one but finally have been diagnosed with cancer.  

Since I'm so new with this kind of cancer, I have no clue about the treatment and the follow-up tests.  You mentioned that it's difficult to be away from your son when you're on RAI.  How long did you need to be away?   And how far away? I also have a 3 year old daughter!  Argghh must be something I need to prepare for myself.

I know this cancer is curable if not spreading yet but the fact that I have to go through so many doctor appt and test for follow up and possibly be on drug for the rest of my life is something that I find it unacceptable for now.

I want to go for another second opinion, what do you think?

Again, I sincerely appreciate your help.

[candiotti]

What keeps me up at night the most is thinking that I may be "jumping" to surgery too quickly.  A friend of mine sent me links to a number of sites that talk about alternative ways of treating thyroid problems.  I haven't had a chance to check them out at length because of work and the fact that I have a 4 month old baby!

Another option is to wait, but for what? I'm keeping my hopes up that it won't be cancer, but even that will be tough because living with a partial thyroid may still lead to taking hormone replacement pills. It's just crazy how your life can change from one second to the other. Although cliche-ish, there is a reason why we should live life to the fullest every day.

Regarding the RAI: you do have to be away from people for a while. If I have to go down that path, it is going to be so tough for me not to see by baby for at least a week. My other concern is that I'm breast feeding, so that may have to stop after the surgery.

Everyone keeps telling me to think positively, but it's very difficult when even the "best case scenario" entails surgery (and its associated risks), living with half a thyroid, a scar (I don't scar well as I get keloids), and meds for the rest of my life (which, as has been mentioned here, is tough to "get" right when it comes to the right dosage).

Writing and reading stories in forums like these are quite helpful! It's good to feel that I'm not alone in this scenario, and to hear that life may go back to normalcy after the surgery.

Regarding the second opinion, I think it helps. My uncle is a doctor and I sent him my labs (with the "suggestive" results). He inquired with a few of his colleagues, and they said that this is the safest route. Again, if you don't want to take any risks, I think surgery is the way to go.

[mc8737]

I truly sympathize for what you are going through specially with having a 3 month baby and breastfeeding.  Trust me I know how you feel, I breatfed my baby for 2 year.  I really don't know what to tell you.  At least you're not alone :-( Very soon I will be in your shoes, I think every soon I will go with surgery then drugs.  Disregard of that I will go with second opinion but I think at the end second doctor will tell me the same thing, I don't think I will have other quick alternatives at all but at least I hope the second doctor is a better one than my first endo now.  I always wait over 1 hour to see her, I'm not the only waiting that long, so do other patients.  With full time work and small child losing too much time like that is a waste.  Once I go with surgery I will have a lot of follow up appointments, and I rather find other doctor who can see me quickly than make me wait over an hour every time.


Please keep me posted after the surgery.  I would like to hear how you're doing and recovering.  My email is ***@**** if you can't find this post.  Best of luck on the surgery and recovery.  Be positive and optimistic okie.

MC8737

[mc8737]

What is TT?  What is frozen section?   My endo told me my right thyroid will be taken out then evaluated during the surgery, if it is cancerous the left one will be taken out immediately even though the FNA report said my left one is negative for malignant cells.

I am scared to dead when heard that.  I just started my new job and am diagnosed with this cancer so I don't know how I can have time to go through with surgery and doctor follow up appt.

Thanks so much for your help.

[MANmom]

Sounds familiar...I had four nodules, my FNA came back "benign follicular clusters", the docs couldn't tell me whether or not it was cancer, so I decided to remove the half with three nodules since I suspected they were causing my hoarseness and swallowing difficulties.  After two weeks, the pathology showed mulitfocal papillary cancer, so I had another surgery to remove the other side.  Unfortunately there is no definitive test for this type of cancer, unless that needle gets cancer cells the test is not a sure bet.  A needle stick in a nodule 2.1 cm has a lot of room for error.  My sister who has the same cancer as I got the diagnosis after her FNA, they hit the right spot, she got lucky.  I would recommend that if you choose surgery, get an experienced surgeon, one who does thyroids at least once a week or more.  The thyroid is a very vascular gland, lots of blood.  There are also parathyroid glands inside or next to the thyroid that the surgeon will want to find and leave behind, they control the calcium in your body.  Another complication is the recurrent laryngeal nerve that runs through the thyroid - the surgeon has to "peel" the thyroid off the nerve...if there is damage to that nerve, you could permanantly loose your voice, or at worst have permanent damage to your ability to breath and have to have a permanent tracheostomy (hole in your lower throat) to breath.  RAI is Radioactive Iodine, which is given if you have a tumor of 1.5 cm or larger.  It is a piece of cake as far as cancer treatment goes.  Only one dose, and you don't get sick.  It basically kills off the thyroid cells that the surgeon may have left behind.  Thyroid medicine is a long process, they start you off slow, then test your blood every 8 weeks to see how your body is tolerating it, when your body is getting enough synthroid you feel better.  I had my surgeries in April and June of 09, RAI in July 09, and only this past month have I felt normal...a year later!  It takes a while, you have to be patient.  If you choose to wait and watch the nodule, I assure you that thyroid cancer is usually one of the most slow growing cancers, so you have time to think about it and possibly to re-do the FNA later, then re-evaluate.  Good luck, hope that helps.

[Meeracyrus]

I am wondering if you had the surgery done and how it went. I scan inn the same boat today waiting for surgery next week.  I wish wr had other options rated than giving up our healthy or at least well functioning thyroid glands entirely.  Will we regret it? Is the car world than the disease?  Do you ever feel totally normal and vibrant and healthy again? Do people juzt stop writing here when they feel well, or does no one ever feel 100%? I would Love to here success satisfied and people ahhh are glad they had this fond.  Does it slow down your thinking, as some say? Does everyone gain weight? Is that preventable? Any dietary restrictions afterTT?