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Old 03-18-2013, 06:20 PM   #1
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Follicular Carcinoma - Alternatives to RAI after surgery

Hi All,

My wife (age 29) had total thyroidectomy last month once follicular carcinoma was confirmed after first surgery. It's been a month now and she is doing fine. She has little weakness but otherwise she has gained everything back. She is taking Synthroid daily.

We have been recommended to go for RAI and we are scheduled to see radiologist next month. Now, we are having second thought whether to go for RAI or not. These are some high level clinical facts:

Left Lobe (post surgery pathology report)
Two nodules
Tumor Size: Unifocal 5.4cm (greatest dimension) - it was 4.2cm as per ultrasound about 45 days before surgery.
Follicular Carcinoma
Capsular and Vascular Invasion identified
No Extradthyroidal extension
(6) Lymph node negative for metastatic
pTNM: pT3, pN0, (pM- Not Applicable).

Right Lobe: Everything came out normal. No sign of any cancer or lymph node involvement. Right lobe was removed once Follicular Carcinoma was confirmed after first surgery. Second surgery was done exactly after 10days of first surgery.

Background tests: two biopsies (with a gap of 6months) prior to surgery came clean and it was confirmed as benign nodule. Two US confirmed the left side two nodules with about 4.2cm size. Surgery was highly recommended due to nodule size. We also wanted to get it over with just because of life -long burden of follow-up and fear of turning into cancer.

Now, surgery is over and she is doing fine. We got first blood work report few days ago:

TSH: 7.65 (Synthroid dose has been adjusted since it's high)
T4: 1.46ng/dl (within range)
Anti Thyroglobulin Ab(E): Negative
Thyroglobulin TGI (ICMA): 4.1ng/ml (ref range is 1.3- 37) but I understand this should be less than 1 ng/ml after total thyroidectomy.

I want to know if there is a way to manage without RAI at this point? Can we safely monitor Tg in order to manage the cancer since total thyroidectomy has already been performed? We are more concerned with the RAI side effects as well as need of multiple scans over time. I know RAI is kind of standard procedure but it looks it doesn't add much value if distant metastasis is not confirmed. This is what able to learn from various literature. Her cancer has been termed as angioinvasive which is kind of moderately risky. Based on her profile, everything points to the low risk cancer except the size of tumor as it's noted as 5.4 cm in it's greatest dimension.

One of the reason we are hesitating to go for RAI is to plan for baby. We have been planning for our first baby but RAI can shift everything for an year even though female should hold off pregnancy only for 6months after RAI. There can be follow-up, etc. and that can easily delay things. That's why we are thinking if can we safely monitor Thyroglobulin (Tg) at this point and postpone RAI or may be avoid it altogether if looks OK for after few years of management. I know it would be almost impossible to confirm if RAI would really help or cancer could potentially can become more aggressive down the road just because we didn't do RAI within 2 months of surgery. We are seeking second professional opinion and we have even sent her slides for reevaluation as cancer was surprise for us including surgeon too. We will get report hopefully later this week. But, it's always good to learn something from somebody's experience.

Please share your thoughts based on your or your loved ones experiences. I know every case is different but I'm sure we can pick-up something from others experiences.

Thanks for your time.

 
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Old 03-20-2013, 12:30 PM   #2
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

A 5.4 cm tumor is very large.

The American Thyroid Association has guidelines for the management of thyroid cancer, I would suggest you take a look at their medical opinion in regards to I-131 ablation. It is detailed information.

Postponing can be possible, in the right circumstances. I delayed 18 months since I was pregnant at diagnosis.

The absolute authority on the acceptability of delaying I-131 ablation will be Memorial Sloan-Kettering. They are notoriously conservative in their use of I-131, and if they say your wife needs ablation now, then she needs ablation now.

good luck!

Last edited by bare501; 03-20-2013 at 02:03 PM. Reason: to provide pertinent medical information from a medical association..

 
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Old 03-22-2013, 04:44 AM   #3
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

If this were an ordinary size tumor (i.e., 2 cm range) I would say rush, have the baby and then go for the RAI after.

But this is very large cancer, I would personally rush to have the RAI right now, then wait a year to get pregnant.

The survival statistics are too good in general, and I would want to ablate all tissue so I could enjoy the rest of my life--kids and all, and not worry about that cancer again. I would discuss the plans with the doctor, maybe even see a reproductive endocrinologist before the RAI so you know all is good to go after a year (it's possible you could even start before the year depending on her RAI dose).

I had very large dose of RAI, and only one follow up scan a year later and that was it. I was kept suppressed tsh for years after.

 
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Old 03-22-2013, 11:40 AM   #4
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

Yes, a diagnostic scan at one year is a distinct possibility too, which your wife will not want to be pregnant for and will need to take a small RAI dose.

Keep in mind, for scanning only, I-123 (non-destructive to cells) can be used, so it would not be further delay for pregnancy.

I had a 3.5 cm tumor discovered at month 7 of pregnancy. My husband and I were the ones who had to think outside the box and bring alternatives to my doctors. If left up to my endo at the time, I would have had I-131 ablation weeks after thyroidectomy (the standard protocol). My surgeon was looking out for me though, and was adamant that I could wait on I-131, there was no need to rush.

I had surgery in 2009, ablation in 2010, and to date, I have had several clean cervical ultrasounds and a Tg of .3 when stimulated.

The most important thing is that I made the right choices for me and have zero regrets.

 
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Old 03-24-2013, 06:47 AM   #5
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

Thanks for sharing your thoughts and experience, bare501. Yes, 5.4cm is very large and that's the only aggressive feature but sufficient enough to drive the treatment. Her endo suggested to go for RAI based on the clinical facts. I think literally everything is pointing to RAI. So, we have almost ready for RAI. It has been scheduled mid next Month. I don't know the strength as we are yet to see Radiologist. We will seeing him 4 days before the treatment. She needs to start LID early next month and no need to go hypo as thyrogen will be given to her.

We live in NYC metro are so Memorial Sloan is equally accessible. I've spoken to them regarding consultation. I'll send medical reports as they evaluate the case before they will assign any physician. I was basically trying to get consultation from Robert Tuttle at Sloan. I think he is the one of the most prominent person who has done enough research in the usage of RAI. He is not accepting patient as per his office. So, I was directed through regular physical referral service. I'll still try to get their consultation in next couple of weeks. But, I don't see anybody will come with a very strong opinion against RAI. It will just give a piece of mind on our part that we did proper due diligence.

Even we are better off putting this behind. Pregnancy phase can be lot longer than a known 6months wait period post RAI. So, I think it's better do now rather jeopardize the motherhood (during pregnancy or even lactation period).

Thanks again sharing your experience, bare501. I'll keep posted on progress.

 
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Old 03-24-2013, 07:06 AM   #6
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

Thanks Reece. Only tumor size has been bothering us. That's only thing forced us to get a second opinion on pathology report. Her ultrasound or biopsy was consistent about the size of 4.2cm. But, suddenly pathology report came up with 5.4cm. It doesn't say anything whether both nodules are part of one tumor. She went for second ultrasound and biopsy just 45 days before surgery so I don't think there can be such sudden growth in just 45 days.

Unfortunately, second pathology report from Memorial Sloan Kettering Cancer Center didn't give us anything about the size. I think one need to see entire original tumor in order to decide that so basically first pathology reports now becomes ultimate authority in this regard.

Second pathology, however, did suggest a different classification of cancer. They suggested "Follicular Variant of Papillary Carcinoma" rather "Follicular Carcinoma" as suggested by original pathology report.

I don't really think it changes the future diagnostic and treatment steps but may be prognosis improves just based on the fact follicular itself is more aggressive than papillary. Anyway, it's very hard to quantify such thing in regards to individual cases. There are just so many variables.

We don't know the dosage strength yet. We will come to know once in like 3 weeks.

I'll keep posted. Thanks again for sharing your experience, Reece.

 
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Old 03-26-2013, 07:36 AM   #7
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

Quote:
Originally Posted by aspobelix View Post
Thanks Reece. Only tumor size has been bothering us. That's only thing forced us to get a second opinion on pathology report. Her ultrasound or biopsy was consistent about the size of 4.2cm. But, suddenly pathology report came up with 5.4cm. It doesn't say anything whether both nodules are part of one tumor. She went for second ultrasound and biopsy just 45 days before surgery so I don't think there can be such sudden growth in just 45 days.

Unfortunately, second pathology report from Memorial Sloan Kettering Cancer Center didn't give us anything about the size. I think one need to see entire original tumor in order to decide that so basically first pathology reports now becomes ultimate authority in this regard.

Second pathology, however, did suggest a different classification of cancer. They suggested "Follicular Variant of Papillary Carcinoma" rather "Follicular Carcinoma" as suggested by original pathology report.

I don't really think it changes the future diagnostic and treatment steps but may be prognosis improves just based on the fact follicular itself is more aggressive than papillary. Anyway, it's very hard to quantify such thing in regards to individual cases. There are just so many variables.

We don't know the dosage strength yet. We will come to know once in like 3 weeks.

I'll keep posted. Thanks again for sharing your experience, Reece.
I don't think there is a Dr. out there who would recommend waiting, because of the tumor size. You are fortunate to be near Sloan, because one of their Doctor's is among the best at treating thyroid cancer. You may want to ask if thyroid cancer can be more aggressive in younger people, as is sometimes the case. Don't mean to alarm you, but that is a large tumor. Thyroglobulin should be undetectable . Until that is the case, the TSH should be below .01. That is to keep any residual microscopic cancer from growing. Is there a reason why you don't want to put off pregnancy, like advanced age?

 
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Old 03-26-2013, 01:28 PM   #8
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

I had follicular variant of papillary. It is (usually) categorized under papillary thyroid cancer, not follicular.

Tuttle is, of course, the head guy, but I think the group on the whole work together. And their general opinion is to be very selective with the use of I-131 ablation.

It is very optimistic that lymph nodes are negative. You need to do what is right for you. I think getting the ablation out of the way sounds much better because it's difficult to know what influence the pregnancy growth hormones have on cancer cells. I have no idea of knowing, but I do wonder if my tumor had accelerated growth during pregnancy. I found the lump myself, so I think I would have felt the 3.5 cm tumor had it been there previously.

But I think the factors are unknown.

Good luck with everything!! It really will fly by

 
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Old 04-06-2013, 04:41 AM   #9
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

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Originally Posted by Linda1652 View Post
I don't think there is a Dr. out there who would recommend waiting, because of the tumor size. You are fortunate to be near Sloan, because one of their Doctor's is among the best at treating thyroid cancer. You may want to ask if thyroid cancer can be more aggressive in younger people, as is sometimes the case. Don't mean to alarm you, but that is a large tumor. Thyroglobulin should be undetectable . Until that is the case, the TSH should be below .01. That is to keep any residual microscopic cancer from growing. Is there a reason why you don't want to put off pregnancy, like advanced age?
Thanks Linda. Apologies for late response. We don't have any problem in putting off pregnancy. Both of us are about 29 so I'm sure we can easily postpone for another year and never look back.

My struggle was never about treatment of a disease. It was always a struggle between a right treatment vs over-treatment. No body wants to be in situation where treatment of one problem leads to another problem. Obviously, we all have to accept and live with any short-term side effects. It's given.

My wife never felt anything because of the nodule. I'm sure it's been in her body for relatively long time considering it's size. It's was never identified by doctor either even when she has very slim neck. Her bloodwork has been almost perfect which is usually the case on most nodule.

My point is if throidectomy alone was a sufficient treatment? But, it does look like we will never know for sure but all clinical facts points to the at least one RAI in order to create a benchmark for future follow-ups. She was getting cold feet on surgery and now she is having hard-time accepting RAI. This is a natural fear.

RAI is not harmless even though it's not bad as I learnt about it for the first time. Anyway, we are moving ahead with RAI. It's scheduled mid-April.

Her TSH is high currently and Synthroid has been adjusted. She will go bloodwork next week to see any improvement. But, for RAI, it doesn't really matter as she will be given Thyrogen and I think little hypo now is basically favoring that situation if I understood correctly.

Thanks for your thoughts again, Linda.

 
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Old 04-06-2013, 05:11 AM   #10
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Re: Follicular Carcinoma - Alternatives to RAI after surgery

Quote:
Originally Posted by bare501 View Post
I had follicular variant of papillary. It is (usually) categorized under papillary thyroid cancer, not follicular.

Tuttle is, of course, the head guy, but I think the group on the whole work together. And their general opinion is to be very selective with the use of I-131 ablation.

It is very optimistic that lymph nodes are negative. You need to do what is right for you. I think getting the ablation out of the way sounds much better because it's difficult to know what influence the pregnancy growth hormones have on cancer cells. I have no idea of knowing, but I do wonder if my tumor had accelerated growth during pregnancy. I found the lump myself, so I think I would have felt the 3.5 cm tumor had it been there previously.

But I think the factors are unknown.

Good luck with everything!! It really will fly by
Thanks again, bare501. Yes, "Follicular Variant of Papillary Carcinoma" is "Papillary Thyroid Cancer". In general, Papillary is considered less aggressive than Follicular. So, this can be good news in terms of prognosis. But, I'm sure it doesn't change the future diagnosis and treatment at all since it's a differentiated thyroid cancer in both the cases. We are proceeding with RAI at this point. There is no point in over-analyzing when we don't have any factors influencing the treatment.

Yes, doctor was also talking about negative lymph nodes and negative of metastasis. That is favorable. Thankfully, right lobe came clean.

Thanks again. I hope everything is working well on your side.

 
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