Dilemma: surgery, or watch & wait

shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 28 Location: New York

Hi

I'm hoping for some advice from the people on this forum, although I understand that ultimately the decision is my own.

Here's my history;

19yrs ago (aged 16) I had a right thyroidectomy for what turned out to be a cluster of benign nodules.

Over the past 5 months I've been having various symptoms, including enlarged lymph nodes in my neck and night sweats.

During the work up, I've had the following tests:

Complete Blood Count with Differential - all normal
Thyroid function blood tests - all normal
Chest X-ray - normal
Core needle biopsy of lymph nodes - non-diagnostic, could not completely rule out lymphoma but nothing else found

CT scan of my neck showed what was thought to be a 1.4cm cystic focus on what's left of my thyroid gland.

Following ultrasound, it turns out that I have four solid nodules on the left thyroid lobe. The largest is 1.9cm and has a necrotic centre. The others are 1cm, and 2 x 3mm respectively.

FNA of the largest nodule shows some folicular cells. I believe that the FNA is non-diagnostic, with the two possibilities being either a benign adenoma, or malignant folicular carcinoma.

My Head & Neck surgeon wants to operate, removing the nodules plus what's left of my thyroid so that the pathologists can make a definitive diagnosis. Obviously if it's cancer then we would look at RAI and lymph node removal.

Because I'm missing the other half of my thyroid, surgery for me equates to a complete thyroidectomy. This would obviously mean being on hormone maintenance for the rest of my life.

Due to the possibility of the nodules being benign and the fact that I am already missing half the gland, my doctor has given me the option of a 'watch and wait' approach, with another ultrasound scan in 3mths time to see if any of them have changed.

Another doctor I've seen (Infectious Diseases) thinks that the enlarged lymph nodes are due to some low level infection and will resolve themselves eventually. No evidence of folicular cells was found in the lymph node which was biopsied.

Would welcome some advice on:

1) a good place to go for a second opinion (I'm in New York City)

2) any information on how quickly folicular thyroid cancer tends to grow?

3) any statistics on what proportion of 'suspicious' folicular FNA samples turn out to be proven malignant following surgery?

4) any information regarding whether or not a previous history benign multinodal goitres makes it more or less likely to develop the same again

I understand that I don't want to take any chances with this if it could be cancer, but I'm just trying to make the most informed decision possible.

Many thanks

Euan

brainman

Euan, I know hardly anything about Head and Neck cancers so I cannot help much. I can give you a site that his the top ranked cancer centers in the US listed. Hope it helps... http://tinyurl.com/68mx33 . It is from the new edition of the US News and World Report.

Then a general statement. The only way you will know for sure what it is, is by a biopsy.

You are in my thoughts and prayers as you try do decide what to do next.
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shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 28 Location: New York

Thanks Brainman.

I really appreciate your help with this, and the great job you do with running these boards.

I'm probably opting for the surgery - I feel that taking a thyroid hormone pill for the rest of my life is a reasonable price to pay to know for sure whether the growth is cancerous or not.

thanks again

Euan

shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 28 Location: New York

Just wanted to update my own post with some answers I found to my questions. Figure they may be useful if anyone else is in the same situation.

1) I'm going to Memorial Sloan Kettering for my second opinion, and that's probably where I'll have the surgery done.

2) couldn't find any specific studies on how fast follicular cancer grows, but general information is that all well differentiated thyroid cancers (i.e. papiliary, follicular, Hurtle cell) are usually relatively slow to grow

3) Studies of thyroid nodules suspicious at FNA for follicular cancer (usually described in cytology reports as "follicular neoplasm") show that around 20% are surgically proven to be malignant.

4) There's apparently a higher risk of developing thyroid cancer in those who have previously had thyroid nodules, even benign nodules.

Euan

mililani · Regular Joined: 18 Jul 2008 Posts: 14

Just for reassurances, my cousin had a complete thyroidectomy when she was in her early teens. She had the worst case of hyperthyroidism that any of the doctors at Stanford has ever seen. They removed a good portion via radioactive iodide, but her symptoms were still off the charts. So they decided to do a complete removal. She's been on synthetic T3/T4's for almost 12 years without any problems. She's extremely fit and active too.

shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 28 Location: New York

Thanks for the encouragement Mililani. It's always uplifting to hear of people who've been through a similar thing and are living a normal life afterwards.

I've been reading up on the various blood tests, medications and side effects of thyroid hormone replacement. As with so many things in life, everyone is different! Seems like many people have no real problems, while for some it's months or years of hell trying to get the correct balance of medication.

From what I have learned, the issues for those being treated following a total thyroidectomy for cancer (as opposed to those who have had their thyroids removed for benign disease) are slightly different. This is mainly to do with the fact that for cancer patients the endocrinologist will focus on near-complete suppression of Thyroid Stimulating Hormone (TSH). This is done because suppressing the TSH also helps to ensure that cancer cells don't re-grow. Which is a perfectly reasonable thing to do!

The downside is that getting the TSH numbers sufficiently low takes priority over getting the patient to the point where they feel well and don't suffer from nasty side effects of being over (hyper) or under (hypo).

Also, in order to do regular monitoring for cancer recurrence, patients will have to "go hypo" for a 4-6 week period prior to having annual or 6mthly Whole Body Scans. Apparently this is not a lot of fun, and it takes about the same amount of time afterwards to return to "normal".

But all in all, I think that even in the worst case scenario this is a highly treatable and beatable form of cancer - I've been on these disscussion boards long enough not to complain, as there's always someone who is worse off!

I'll post again once I have a surgery date and/or some more information.

mililani · Regular Joined: 18 Jul 2008 Posts: 14

I forgot to mention that my mom has hypothyroidism. She's been taking t3/t4 for a long time with no problems

mia123

Hello, I am new here. I am a fairly healthy 31 yr old female, married, no children, don't smoke, don't drink, work full time. Just when I thought I had everything planned out, but now, I don't know what is coming at me yet...

I had papillary with follicular variance thyroid cancer after I found a lump on my thyroid in 2006. It still early stage and not spread yet. I had thyroidectomy in 2006. I had I-131 in 2006, and a total body scan in 2007. Everything was cleared.

In July 2008, I started to have sore throat with white patches, white tongue and smelly sulfur. I had SYSTATAIN to treat white tongue. My sore throat continues. I started to do a lot of online reading on sore throat, and finally, felt my tonsil with my index finger. I found a lump underneath the tonsil.

I went to see an ENT on 8/14. He looked thru my nose and throat with his tube/camera but said everything looked fine. I explained to him about the lump and he put his index finger to feel and tried to see if it's mobile...which it is not.

He said that based on his experience, he does not think it's cancerous, but he sent me to to a CAT scan anyway. I just came back from a CAT scan today 8/18.

I think most doctors would only tell you it's cancer when they have evidence. I would like to feel comfortable with what he is telling me now now but I highly suspect that I have cancer. I am nervioulsy awaiting for the CAT scan result. I have been having nightmare the past couple weeks while waiting to see doctors.

I also had other symptoms in July including dry eye, dry mouth, ophthalmologist think I may have early stage of Sjogren's...which does sound like...

Anyone has would like to share experience or thoughts with throat lump. It could be helpful to ease some pain and anxieties.

Thanks for this forum, and thanks for sharing your thoughts
Mia

PS...Sorry...I could not post my own post for some reason...I tried to tag along here to see if it'd work...

shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 28 Location: New York

Mia

Sorry to hear that you have more cancer concerns after already having had to fight thyroid cancer. I know what it feels like to go to doctors and be told that "it's PROBABLY fine...".

All I can say is that if you are concerned don't give up until you've got a definitive diagnosis with a treatment plan, and that treatment plan has started to work.

Hopefully whatever you can feel in your throat will turn out to be benign, but best to make certain.

As for my stuff, I still don't have that definitive diagnosis, although I now think that I am at least seeing the correct docs. My Head & Neck surgeon at Memorial Sloan Kettering wanted to do a 'watch and wait' with my thyroid nodules (may be follicular thyroid cancer or may be a benign adenoma) but is more concerned about definitely ruling out lymphoma...so it looks like I'll be having a surgical biopsy of on of the enlarged lymph nodes in my neck soon.

It's not easy pushing for yet more tests, and sometimes I feel like I would like to just walk away from it all and ignore my symptoms (especially when several docs have given me the "we're not to concerned about this" and the "it's probably a low grade virus" speeches). But I come back to the fact that I know my own body, I know something is wrong with me, and no one yet has been able to give me a decent explanation of what is causing my symptoms - so I'll keep pushing until I get one.

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