Suspicious papillary carcinoma < 1 CM

Hi everyone ,

I hope your are doing well . I'm so impressed for finding this website and people inside it . I'll try to summarize my story as I need feedback from you .


I'm leaving in middle east , I have a great child and wife . I have history of cancer as two stepsister died from breast cancer , and a brother now treated with follicular lymphoma .


After my brother diagnosed with lymphoma I start check up my self and I found enlarged lymph nodes in back of my neck . I did US then my doctor ask me for follow up 6 month later . I came after 6 month the I did CT Scan
and it was fine . it is just a few lymph nodes enlargement (less than 2 CM) . but found small nodule in thyroid gland and the recommendation was doing FNA . I did it and the result was most likely benign with small atypia undetermined (follicular lesion). My doctor said it is fine and just need follow up in 6 month , the size was (and still) 0.7*0.5

One month a go I sent a pathology slides to US (Memorial Sloan-Kettering) hospital and the result was there are small cells suspicious for papillary carcinoma. This changed everything , I went to doctor who refer me to a ENT surgeon who suggest to do a total thyroid removal ASAP . Another doctor suggest the same thing . and he said currently lymph nodes no need to be treated , only follow up .


I don't know but what I have read the nodule if less than 1 CM should only half of thyroid . and there is no emergency at all for such a case .


This surgeon is very good and he is doing 4-5 operations weekly , I don't know what should I do , I need your advice ?


Thank you all and keep up the good job .

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If it is positive for cancer, the whole thyroid is usually removed, as it probably has cancer cells too. A lot of people on these boards have to go back and remove the other half.
At this point, I would rather get it all, before it gets to the lymph nodes, if you can prevent that, so you can avoid RI.
Its worse than the surgery or the synthroid, IMO.
Once its in your lymph nodes, RI is usually a must. Under a cent. is a good time to take it out.
Most docs will listen to your desires and consider taking half, if that is what you would rather do.
People tend to fall on one side or the other of GET IT OUT OF ME, or NO SAVE WHAT YOU CAN!
Either way, getting the one side out, before it goes over that one cent. size, is a good idea.
Sometimes where the tumor is, will give you a little more wiggle room. If its on the isthmus it won't have much room to grow
before it breaches the thyroid. You don't want that, as then it can go where it wants to.

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Our cases sound so similar. In December I had an ultrasound that showed maybe some concern but told to follow up in 3 months. Follow up ultrasound showed it had encapsulated and had increased blood flow (2 red flags for cancer). Biopsy should suspicious cells for papillary cancer. 2 1/2 weeks ago I had my entire thyroid removed for papillary cancer. Don't take the chance of having a second surgery-just have it all removed at one time. My cancer was small as well and all of my lymph nodes tested negative so I do not need any further treatment which is wonderful. Just be warned that you will not feel well after surgery. I am fighting to get my iodized calcium level up and until I get that up I have a lot of fatigue and muscle spasms. Best of luck.

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I went to sloane Kettering and my dictor was dr ashok shaha. Dr Shaha gives lectures around the world. Google his name and your Country and you will find doctors who think like him inside your Country. The new thinking of the major institutions is to only take half the thyroid on low risk tumors. What is low risk? The cancer should be under 1cm and confined to one lobe with no other issues going on. It is better if you are undr 45, but I was 49. I was also Braf negative (a new DNA type test that might make it more aggressive). My husband is from Egypt and I might end up living there some day. There is no way I was going to let them take it all if I didn't have to because of the side effects, especially in the heat. I will have to get an ultrasound every six months though. Youtube Jatin shah 12-1 12-2 and 12-3. Also google dr ashok shaha thyroid conference. This will get you started. You should have time to make an informed decision before you decide. However, you do nit want to take to much time.

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ps because it is suspicious for cancer, it will have to come out-just find out if you are a candidate for half if uou want to. You are a man which makes you a little higher risk - so You probably dont want to wait that long.
't

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hello sorry to hear. i wish you the best.mine was delayed to sandy .then i was for more ultra sound 144 pictures.i got a call from ent new it was not good.sent me out to t.jefferson 1st op. 8 bio.of nodes two weeks later op.tt left nd 1 node 4cm 9 of 11 pos. I wish you well my friend as you go thru this.god bless

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I wish I could send you to my doctor in Denver Colorado, she is fantastic. The best. She warned me if it looked real bad they would remove everything too, but said for the first operation she would only remove the right side where the tumor was (Mine was Follicular) And she "sliced" the tumor right there in the operating room to make the decision if it looked Cancerous or benign. She decided to leave everything in the left side in including my lymph nodes and did further biopsy on the right tumor (it was the size of a chicken egg) the results came back benign (hallelujah). I have to watch my tsh levels but that's about it and a yearly ultra sound exam once a year to make sure the tumor doesn't return which was a 1 in 3 chance.
All I did was worry myself sick until I found her (Dr. Vanderveen) and she is wonderful and put me at ease. She does 300 of these surgeries per year, fantastic doctor. I still had my voice after surgery! Even when they had to so carefully peel my vocal cords away from the tumor and relocate a few things in there.
I applaud you for getting those second and third opinions! We all need to do things like that in today's world. Both my husband and I had been misdiagnosed way too much. Leaving any suspicious tumor in anyone's body in my opinion is plain idiotic.

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Sorry to hear from you what you face so far.

redbird53 I think you touch the bottom line I hate “RI.
It is worse than the surgery or the synthroid, IMO “ but You are right .

I’m planning in one month and I have to decide either lobectomy to total thyroid.

falcons , sorry to hear that but Yes we are similar but what was you tumor size ?

sweetiemonster , I found I doctor who knows dr ashok shaha and he said clearly “ stay away now from hospital , if you have just do a half “ . He is not in my area but I was email him with another doctor in Europe (prof Furio Pacini) as he suggest the same.
What I understand this is a new methodology.

shore1 God bless you too , Did you feel any problems after first surgery .

Baseballmom_6 I’m so far :) . But I’m arranged two appointments with a surgeon and oncology doctor specialized in lymphoma . also there are option for “frozen” section which I’ll discussed with my doctors . As you said look for 2nd or 3rd opinions is mandatory .



Thank you all. I’m planning next week to meet other doctors and as you said time is limit so I have to decide within month from now.

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My tumor was only 1 cm but it was large enough to get cancer cells out of. The surgery itself really was not difficult to go through-I'm just having the problems adjusting to life without a thyroid. I have a wonderful surgeon at University of Iowa Hospitals and Clinics and wouldn't change that for anything. Hoping I get some more answer today. Best of luck.

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I went in on June 18 and had half the thyroid removed (1.2 cm). The pathology report was received a couple of days later and noted a spread to the other lobe. Thus, I went back in on July 2 and had the other half removed. After the first surgery they told me I could probably get by without artificial hormone but after the second surgery, of course, I have no option. Either choice isn't great but I wish I had gone through with the total in the first case. I

'm a 56 yo male and I sure don't want to go through this again in 10 years. I think that one fact alone is enough reason for the total. Best wishes.

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Welcome to the club, sorry you qualify. I hope you get good answers and excellent treatment!

Be Strong and Stay Positive!

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Falcons:
Just had my thyroid nodules biopsied at Iowa City. Found pappillary cancer. Am having the surgery done in Mayo to be closer to my family support. Who did you have as a surgeon? I'm thinking of getting a second opinion.

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Thank you all . I'm feeling better after your replies . I met 2nd surgeon yesterday "no emergency,but you have it a TT as prevention left lobe and safe right one " he said. Suppose to do a surgery after one month and a few days .



Good luck for me and for everyone in this community .

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good morning good news eh lol your friend.

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My doctor from Johns Hopkins recommended me to do total thyroidectomy. My biopsy was benign but I did DNA testing and it was suspicious.

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