papillary carcinoma

[siril]

my boyfriend (35 years old) was diagnosed with papilaary carcinoma in the left lobe of the thyroid (about 4 sm large). A neck ultrasound found a few other lumps in the lower left gugulary chain,  the largest one about 2 sm large (no biopsy was done to these lumps but our doctor assumes they are cancerous as well)
Our doctor recomended a large operation in which he opens a great part of the neck and takes out all of the lymph glands in the left side of the neck, so that the cancer won't come back. he also said there's another method called "note-picking" where they only take out the infected parts, but than the odds are against us (70% that it will return).
my question is- what would you recommend?
we live out of the states, and we heard that in the states its common to have a special CT scan to make sure how spread it is, before operating (something that might be called "patch ct"??). our doctor did not suggest that. what would you say? we are afraid it already spread to other parts which won't necessarily be healed using the radioactive iodine.
thanks allot
S

[4helen]

Welcome---am out of the States too so I understand your concern to match protocols.  Am not technical enough to make recommendations but perhaps my message will 'bump' your question back up for help.  Are you happy with the treatment exerience of your doc? Is a second opinion possible? You could also try posting your question to the expert board too.  Good luck.  : )

[amela321]

Hi siril,

I'm sorry your boyfriend is going through this.  I am a papillary thyroid cancer survivor.  Brief history:

First diagnosed 1985
Total thyroidectomy, some lymph nodes removed
Radioactive iodine ablation 1985
Persistent disease, 2nd radioactive iodine 1986
Recurrence 2008
Surgery, 3rd radioactive iodine 2008
Further cancer detected 2009....currently undergoing further testing

The next thing I want to say is that I am NOT a doctor, so take this advice only as advice from one who has been through the experience, not as official medical advice.

Anyway, the reason I gave you all of that background is so you know that I definitely have been through it and that my experience is that I wish that both the initial surgery back in 1985 and the surgery I had last year had been more aggressive.  From your description, it sounds like the doctor wants to do what is called a modified radical neck dissection.  With the large tumor and involvement of lymph nodes, I would agree with that course of action.  There is no guarantee, of course, that it won't come back, but with "node picking" there is definitely no guarantee that the doctor will even get all of the diseased lymph nodes at the time of the surgery.  Just because a lymph node doesn't "look" like it is cancerous, it doesn't necessarily mean it is not.  

Other imaging studies (CT, ultasound, etc...) wouldn't hurt, but you still can't necessarily "see" all of the disease.  A chest CT scan might be something to consider to see if there is spread beyond the neck.  

If you decide to go with the modified radical neck dissection, ask your boyfriend's surgeon how many of these he's done.  I'm not sure where you are from or if you have a lot of options, but you want to find someone who has done a lot of thyroid and neck surgeries.

Good luck to your boyfriend and to you!!!

Amy

[nissah46]

I had a total thyroidectomy 2 1/2 years ago and had 18 lymph nodes removed.  They knew before surgery that I had several large growths, and that they were cancerous. I had 5 growths and the largest was 4.8 cm. If your boyfriend has RAI, it will look after any remaining cancer cells that may be lurking in lymph nodes or elsewhere.  I had spread to my lymph nodes, lung and rib, and got a clean scan at my last appointment.  With thyroid cancer it is life long monitoring with blood work and ultra sound. Feel free to ask any questions.  Good luck.
Trish

[siril]

Thanks guys!

your answers do help.

Did anyone of you went through a PET scan? I know it involves radioactive materials but we heard it helps discover cacerous nodes better than the other techniques.
Our doctor is experienced with these surgeries, but we are going to get a second opinion.

thanks again,
Siril

[nissah46]

I haven't had a PET scan, but have heard that they are not as good with thyroid cancer at picking up tumors.  But, they are still used when people do not take up RAI.  
Trish

[tossity]

was your thyroid nodule hard and non movable