The THYROID Thread

[mrsklamc]

Mrsklamc, you had a complete thyroidectomy all at once? I wonder why they only took half oft DD

I'm not sure; They had done a biopsy so they KNEW I had cancer on the left side, and like I said, they told me if they left the right side, the cancer was likely to come back. It's awful that your DD will have 2 procedures...Has she seen an endocrinologist?

 

[Granfan]

Her reports were sent to one and he's the one recommending another surgery.

 

[Granfan]

Maybe the type of cancer makes a difference. We are just so frustrated and confused. Her diagnosis Minimally Invasive Follicular Carcinoma with Onocytic Features.

 

[mrsklamc]

Maybe the type of cancer makes a difference. We are just so frustrated and confused. Her diagnosis Minimally Invasive Follicular Carcinoma with Onocytic Features.

I'm so sorry. You end up feeling your way around a lot and it's really frustrating. I don't know what I'd have done without the ladies on this board, so I'm glad you're here....Odds are that if the endo had been in on the situation from the beginning, they'd have went ahead and done a total thyroidectomy. One of many things I've learned is that sometimes the latest greatest info takes some time to filter through the medical community.

I'd guess he's suggesting a total thyroidectomy followed by radioactive iodine therapy?

I recommend going to amazon or your local library if they might have it - look for the complete thyroid sourcebook by ain and rosenthal.

 

[Granfan]

Thank you. Mrsklamc. I'm so glad I found this thread and i will look for the book. God bless you and all others here.

 

[Christine]

Mrsklamc, you had a complete thyroidectomy all at once? I wonder why they only took half of DD's The core biopsy had already told them it was follicular neoplasm. Shouldn't they have taken it all at once.?

Yes. If they knew it was cancer, they should have taken it all out.

Gone are the days where they just removed the cancerous lobe. Too many times, thyroid cancer recurs in the remaining tissue because thyroid cancer is often "multifocal." This means it springs up like little tiny specks of pepper throughout the gland that only a pathologist can see.

I had a 1 cm tumor but my "good" lobe also had thyroid cancer cells in it.

I had two surgeries because I did not have a biopsy. They looked at my tumor while I was on the table and it came back benign, so they stitched me back up. A week later, the full pathology indicated cancer, so I had to go in and have a very thorough removal of the rest.

 

[Suzanne033]

Suzanne - thanks for sharing your story. Just curious as to what kind of thy ca you have and if the new tumor occured on the same side as your original surgery. Did they say what the new path of the new tumor was. I just had that biopsy for the lymph node.

I had Stage III Papillary. I had to have a complete Thyroidectomy as well as removal of 8 of the lymphnodes in my neck (6 were had malignant tumors in them). They were not contained to one side or the other. Both lobes of the Thyroid were compromised. The new lump showed up on the right side abt a 1/2 in. below my jaw. The new doctor did now give me any information about the new lump other than that it was benign which is all I wanted to hear.

 

[Aburns8]

Just found this thread. Thanks for sharing your stories. I have Hashimotos (diagnosed in 1999). The thinning hair, tiredness and depression suck, but at least it isn't constant anymore.

 

[luvmarypoppins]

Suzanne - I am sure that new tumor scared you. When my lymph node just popped out I was scared too and it was also by my jaw, on the same side as my neck dissection. I am stage 4 pap with the rare columnar cell variant

Granfan - so sorry you dd has to go through this once again. I would be feeling better if the whole thing was out too. I am also wondering why they just didint do it all at once. Is she having the same surgeon again? Wisihing her all the best.

Aburns - welcome

Well as you saw me post, my hosp. is having some talk in about 2 weeks with 2 surgeons, a rad. onc. and a med. onc. Its all about head and neck and thyroid cancer. They are discussing the latest treatments, research etc.

They will have a question and answer session after the presentation.

But since I am going to see the surgeon monday I think I will just ask him what I should know etc.

So if any of you have some question you want answered let me know. Maybe I can ask him, if he is in a good mood, we will see. Sometimes he is moody and rushy, sometimes he will chit chat etc. You never know. I always take dh with me because it kind of creeps me out psych. that I always have to look at him knowing he almost killed me etc.


So what are you all wanting to know?? Ask away.

 

[Granfan]

Luvmarypoppins
She is not going to use the same surgeon. The new one is a head and neck specialist if she does it. I am thinking the more I read that all thyroid tissue needs to come out and then radioactive iodine treatments to lessen risk of recurrence.

 

[Christine]

Luvmarypoppins
She is not going to use the same surgeon. The new one is a head and neck specialist if she does it. I am thinking the more I read that all thyroid tissue needs to come out and then radioactive iodine treatments to lessen risk of recurrence.

You've got it!

 

[luvmarypoppins]

Well I am back from the ENT surgeon.

He says the lymph node is doing good. Looked in my ear about the dizzyness. Tried to get the ear specialist to see me right there but he was too busy etc. So now in May I am seeing the ear specialist and having a hearing test.

I swear every time I go there I come out with another appt. I am getting sick of all this stuff. I havent had a hearing test in a long time so I guess it will be good. I only have 1 ear so he says he wants to keep the good one good etc. so I guess I see where he is coming from. He said just keep it slow with the movements. He thinks one of those little things dislodged in my ear affecting the balance etc.

I asked him what he was going to be speaking about at that talk. He says, "Oh nothing much, just new ways how to skin cats??,

The more I see this guy the less I like him. You think after he almost killed me that he would be a little more nicer. Oh well I saw the other surgeon who saved my life and we both had big smiles for each other. That made me feel better for sure.

I will really need my disney vacation after all of this stuff.

 

[luvmarypoppins]

Well my latest non thyroid blood tests are normal. They were specifically looking at anemia stuff and B12 levels. I always feel so tired. The gp still wants me to do the monthly B12 injections the nurse said.

So how is everyone doing??

 

[mrsklamc]

Been feeling good but TSH came back at .03 so dr is lowering dose even more.

Birthday was hard this week. Thought I'd be a mom by now- silly cancer throws off your plans.

I visit the Orlando's local newspaper's site occasionally and was saddened to read that a local news anchor is having half her thyroid removed. Sad cause I know she will just end up in surgery again. Also sad because someone in the comments said their daughter had it and that 'of the 4 kinds of thyroid cancer one of them can recur.' Who is feeding them THAT garbage?

 

[luvmarypoppins]

Just want to say... Happy Birthday!! Micayla

Keep hanging on to your dreams of being a mom. As Mickey says..dreams come true!

 

[Granfan]

Update on daughter: saw the surgeon today to set up surgery. She also suffers from asthmatic bronchitis and has had two emergency room visits this week. First one she was prescribed antibiotic that is contraindicated for asthma which made her worse. Anyway the surgeon said he can't do the surgery until she's better. So, another. Appt. Next week. He said the second antibiotic wasn't even strong enough so he prescribed something else.

 

[Granfan]

Well my latest non thyroid blood tests are normal. They were specifically looking at anemia stuff and B12 levels. I always feel so tired. The gp still wants me to do the monthly B12 injections the nurse said.
I really hope the B12 will help you have more energy. It's really rotten to feel so tired!

So how is everyone doing??

See separate post

 

[luvmarypoppins]

Granfan - sorry to hear your dd is now dealing with the bronchitis issues. I hope the antibiotic works. I am sure she would like to see the surgery over and done with.

I had to wait a long time for the surgery too. They thought I also had an adrenal tumor, so lots of testing and then lots of lung/pulmonary testing. They thought my lungs were bad, but it was really just my huge tumor compressing the trachea.

I also had to wait to get the radiation because I got a bowel obstruction on day 2 of the low iodine diet, so that took a while to recover from too.

Does your dd have an endocronologist? I had to find one between the surgery and the radiation.

Did your dd have the core biopsy that is like the caulk gun going through the side of your neck? I had that one. that showed my pap thy ca but not the rare variant until they did the final path etc.

Wishing your dd all the best.

 

[Granfan]

Luvmarypoppins:
Oh my, you have really been through so much. Yes, she had the core biopsy before the first surgery. All they would tell us is that it was a follicular neoplasm. After the tumor was sent to Mass. They told us it was follicular carcinoma with Onocytic features, not that I really know what that means exactly. Her primary care dr consulted with an endocrinologist (too busy too actually see her) and he's the one that said the rest of the thyroid has to come out. Health care is just so complicated, isn't it?

 

[Granfan]