Papillary thyroid cancer: Overwhelmed by treatment options?

@andiamo, learning about the various treatment options, their risks and benefits is overwhelming. I'm tagging fellow members like @maryny23 @sweettoothd @koh @mabfp3 @lbrockme @catherinec who have experience with papillary thyroid cancer, some who also had spread to the lymph nodes. They can share their treatment choices with you, keeping in mind that everyone is different and no 2 cancers are the same.

Andiamo, are you asking about radioactive iodine (RAI) therapy vs proton beam therapy? What treatment did you decide on? How are you doing?

It is very difficult to know what is the best treatment. I know various factors seem to come into consideration for doctors when making recommendations (age, risk factors(other cancer, spread,type..)etc)..). I did not initially seem to have spread, but radiation was recommended for me because of age and the type of papillary I have-tall cell, which is potentially more aggressive. I am not sure what I will do if more is recommended though because I have had some side effects from it- dry eyes, dry mouth, increased joint pain and some digestive issues I believe. I have not had beam treatment so can t speak to that. It is an individual decision and the bottom line is there is still so much they really don t know about thyroid cancer. even just 30 years ago, the recommendations for RAI doses were so much higher than now. We are lucky in that regard for sure! My maternal grandmother died from thyroid cancer, I have it, and my youngest son was just diagnosed with it . My Doctor at Penn told me they have not yet found a thyroid gene, but that there is recognition that it can be familial. I am so wishing I could find a research study to participate in so that they can learn more! I wish you all the best- whatever recommendation you go with feel good about it in your heart and soul!!

I understand the shock, confusion and overwhelming feelings that can come with a diagnosis. That is a normal response to a really abnormal situation happening to you. My cancer was actually 2 different thyroid ca, I also had follicular huertyle cells, and was advised that initial quick , at site, biopsy could miss a diagnosis, but surgical removal allows for full biopsy. I was advised and opted for full thyroid removal, with follow up RAI radiation treatment. Then I had what was considered like a daily "Chemo", but it was large amounts of the thyroid hormone to surpress or trick my body in to thinking i had enough and not make more. Thyroid cancer is unique in that your body in essence continues to try and make more thyroid cells and if the cells are "defective", so to speak, it can allow cancer to return in my case. A very non medical set of terms... but it helped me view it better and more realistically.
I was young, Strong and healthy at 34 yrs old, which weighed into trestment decisions. I am now just turned 68. I did have a recurrence at 12 mths , with spread to the brain etc, and had a 2nd large RAI treatment.
I think getting input from an expert who has treated this cancer for a while, as well as an second opinion, is key. Additionally asking questions about why they think this is the best course of treatment, what are the options to weigh , and why they wouldn't use other options. Weighing that info , with your beliefs and goals, helps reach decisions. I basically decided I wanted to fight hard, up front, at first, while strongest, to allow for a long life to raise my children
I found writing a list of questions down as they came to me and taking them into the appointments helped me to keep track. I also took someone with me to help take notes on what was instructed. It can get emotional as your discussing these topics and you find that your cognitive skills drop a little in those situations. You don't want to leave and say " now what did they say about that?"
Dr's are really pressed for time these days, but if you have your questions written down, it allows for them all to be addressed effectively. I was blessed to have Dr's that took time with me and explained everything I wanted to know. The one Dr whose attitude was "I'm the doctor making the decisions. You don't need details" , Was left behind by me and my new dr was much more willing to make me a part of the decision making.
You feel out of control to some extent. And getting in some information, helped me with feeling like I had some control in the process . Your attitude and support system can help greatly with your healing process.
I am praying you heal quickly!

Andiamo,
I’m sorry you are having to deal with this situation. It can feel unfair, frustrating, complicated and confusing, but this is a great platform to get support and some really good practical information. That being said, everyone’s situation is incredibly unique and it can be easy to feel overwhelmed with the responses you receive. You need to keep in mind that you are not comparing “apples to apples” with any of us.
I have papillary carcinoma that has metastasized to my lymph nodes. I had no qualms about getting my entire thyroid removed as I have Hashimoto’s syndrome and have taken thyroid supplements on a daily basis the majority of my life. I was happy with my decision to have the whole thing removed.
While my biopsy identified one small nodule in the right lobe, there ended up being several small tumors in different locations. I had my entire thyroid, 6 lymph nodes and 2 parathyroid glands removed, as well as a neck dissection the first of February. Scheduled an appointment with an endocrinologist after that.
I was anxious to have RAI, but my endocrinologist felt it was not indicated. I had a second opinion which concurred... Since it’s so difficult to schedule appointments with endocrinologists these days, this all took quite a while.
I went ahead and obtained a copy of my records and carefully read through them. I found the pathology report stated there was “tumor present at the inked margins,” which I thought might be saying they didn’t get “clean margins.” Apparently I was correct. When I mentioned this to my oncologist (I was also diagnosed with breast cancer in July! How weird is that?!?) he wasn’t pleased. He took my case before the medical center’s Tumor Oncology Board. Those 5 specialists recommended I be seen for treatment by a radiation oncologist and an endocrinologist at a nearby teaching hospital as soon as possible.
Although it’s a STAT referral, I can’t get an appointment for several weeks. To say I’m frustrated would be an understatement!
This being the case, I’d recommend everyone get a copy of your medical records and look through them yourself. While you could possibly run across something alarming, the vast majority of the time it will actually give you a sense of confidence in your provider.
The bottom line is that it’s vital that you do all you can to take responsibility for your own care. It sounds like you are doing a good job at that.
You received some excellent suggestions from Lynne at @llbrockme and I’d urge you to take them seriously. They sound so simple and are easy things to dismiss, but they are incredibly important.
No matter how smart you are, take someone with you to your appointments. You will be shocked to find they picked up on some piece of information you missed. Even when you hear the same thing, the message is often interpreted a bit differently by two separate people. As she said, I’d have that person take notes during the visit. I’d then ask that person to relay to me everything that they heard the doctor say and what they felt he or she meant by it and to do it in great detail. I think you will find it interesting.
And writing down a specific list of questions you don’t want to overlook while you are with the doctor is much more practical than you may think. If you bring that list with you and show it to the nurse before you meet with the doctor, they will relay it to the doctor as they are preparing to come into the room. They can review your chart with these things in mind to make certain they have the specific details related to them at hand. No matter what, it will always enable them to make the most of your short time together.
Again, Lynne at @lbrockme was right on target.
I hope some of this has been helpful. Please be comfortable asking as many questions as you have, as well as asking for clarification regarding any responses you receive.
We are all thinking about you, Andiamo.
Cathy

Hi
When I was diagnosed with STROKE (Embolic), Rapid and Persistent AF, and 4TH DAY Papillary Thyroid Cancer it was a shock.
No cancer in our family. I had had a carcinoma removed with a milk duct in 2005. No further complications and refused radiation followup.
The total thyroid was removed plus 12 lymph nodes and a dissectuon of lymph bed done right side. The ruling of the Endocrinology Dr was to wait 6 mths. "No "said the Surgeon and Anaesthetist "should be done a.s.a.p.
Post Op (Done in 4 months) showed cancer in 2 out of the 12 lymphs.
Unfortunately you had not done your research.
Papillary cancer spreads into lymphs and is quite renown for doing this and the chances to have only one lobe removed for papillary cancer is classed as 'not a great move as cancer in other lobe is so probable to be in there as well'.
My scan of my carotid arteries showing a shadow on my right lobe was passed around surgeons. One expressed 'bits seen in left'.
If it had put to me I would have had the whole thyroid out.
The carcinoma was lying along the outer edge which was dangerous.
Papillary cancer grows at a rate of 1mm a year I read.
With the measurement of carcinoma being 17mm x 7mm I will have had it growing a long while. I was lucky that it was discovered.
Read top surgeon in USA's Thyroid Clinic all about your thyroid. Mr Gary Clayman. Also he wrote the book ATLAS HEAD AND NECK. I read my operation post and it is very interesting. Lots of 'things' in the way!
My surgeon put through 1.1/2 bags of saline before an hour of blue dye to show him the way.
I had no complications. No damage done to anything else.
After almost 5 years post-op it is easier to keep my TSH at a steady level. G.C advises low normal as I am LOW RISK, at 1.7ish. I changed to Synthroid as it is more reliable than bulk buy Levo..... Also the container contains 30,is sealed with an expiry date, has condensation pallet inside. The white ones are 50s. There is a 25.
I have a right to a test of my TSH, T3 and T4 when I want/need to. EASY>
T3 is selenium so eat 2 brazil nuts per day.
I declined RAI and suppression TSH post-op.
Last year my 4th year was for tests as the yearly ultra-sound showed concern in 1 x 7mm lymph, 1 x 8mm lymph and something behind in pic 19mm x 9mm which shows calcifications.
After a follow up CT scan with contrast, a PET scan with infusion RA Iodine and another CT Scan with Iodine these were all inconclusive as no existing pics of this area.
I stood my ground have RAI TREATMENT scan where instructions were 3 weeks no thyroxine, and Low iodine diet. The surgeon conferred with a team and said PET scan would be OK.
The surgeon related that I have an aversion to RADIATION, CHEMO or RAI. As little as possible. I've heard some horror stories of RAI and the rest.
The PET scan didn't bring up a warm glow in the 3 areas suspect but it did bring up a light glow in my Pituitary gland. MRI showed nothing unto ward anywhere in the brain. But they could see where my left frontal lobe stroke had got me.
I did leave off my synthroid for 2 mornings which got me into hypo=thyroid. The pituitary gland also manufactures TSH.
Making decisions are your right and therefore consequences land on those making them.
But hospitals are scarce on INFORMATION to allow us to make good, sound decisions. We need to do our own research. As having a background in nursing I have joined a few resarch teams. Radcliffe being one. The AF forum for my AF. All helpful.
Now to what you should do. Its like me saying to my surgeon take these 3 items out. He said " Easier said than done".
He came up with the larger item could be my Thymus. Removing the thymus is a whole lot serious. I read all about it.
We have 100 Lymphs with 50 each side of the lobes of the thyroid.
Keeping an eye on Thyroglubin Serum and Antibodies is the key of showing cancer in those who have had the whole thyroid removed.
I'm so glad that they removed all of ny thyroid. Yes Synthyroid every early morning. 1 hr before breakfast. No milk or iron or 4 hours. No soy or soy products etc.
But I'm old hand at it. Automatic. The alarm just went off at 7am for my Synthroid but I had that at 5am as I awoke them.
Happy New Year. NZ started at midnight. Now 7am.
Surgeon left retired and he left instructions for me to have a CT Scan with contrast in May 2025 6 months after the last.
I say read and research and listen to others.
Be under your surgeon rather than an Endocrinologist.
Take care, JOY. (Tuckie)

I had a Total Thyroidectomy and center neck disection December of 2023. Thyroid and 2 lymph nodes showed PTC. Did RAI ablation in February and body scan in March. My M rating was x, which I believe is inconclusive. Thyroglobulin markers never went below 0.7. This past November my marker was 1.4. A neck ultrasound showed a lymph node in right cervical 1.8 x 0.5 x 0.1 cm. Tested positive for metastatic papillary carcinoma in biopsy. They also did a wash on samples. Endocrinologist met with tumor panel. The holidays are creating some communication delays but I am scheduled for infusions and bloodwork this month. Endocrinologist stated that RAI ablation may not be as effective as first thought. I did a bit of research and that has created some anxiety. Are they looking for BRAF gene mutation? I was referred to my previous surgeon to remove the lymph nodes in right zone where metastasis was found. The metastasis is atleast 0.7cm. That seems large for a year's growth. I am 56 years old and stage III due to my age. I know PTC is a lower risk cancer but this is still concerning for me. Endocrinologist said there are other treatment options. Would like to know what experiences others in similar situations have had with targeted therapy, chemo, etc.

I had asked my oncologist at MSK why they are not considering RAI. He said it is not strong/thorough enough. I have residual cancer from TT on my trachea. So, I am having chemo enhanced radiation therapy for 6 weeks.
At MSK, I was not given options. The radiation oncologist said...do this and you will be okay. So I start this difficult journey Jan 21 for 6 weeks.

Hi

Thyroglubin serum .7 ! What are your thyroglubin antibodies?

I have never been below .99.

Like you complete thyroidectomy with right carcinoma in right lobe. My carotid arteries scan was passed around and in the end bits of papillary cancer were found in left lobe. My understanding that any thyro surgery done for one side carcinoma should be a total as re doing for the other side is at a high prevalence!
I had 12 lymph taken on right side and lymph floor on right dissected.

On last year's Feb ultra-sound showed 3 spots calcified.
2 lymphs 7mm & 8mm but showing behind on film - suspected my thymus is 19mm x 9mm area,

As ? was is there cancer was foremost in mind.

So I underwent 1 CT SCAN with contrast, 1 PET SCAN with iodine infusion, another CT Scan and because PET scan made Pituitary Gland in brain warm had a MRI. Nothing wrong there or in the brain.

My serum during all this was at 1.7, went down to 1.1 & .99, then up to 1.4. Now .99 .
Antibodies stay down at 14 - 18 only.

The above tests are inconclusive and surgeon has retired. I underline that I am not happy with RAI treatment and refused post.op.

Papillary cancer grows at a rate of 1mm per year. So like you I feel the 2 lymphs were left at surgery. The one area behind is the thymus?

The calcifications is macro. (classed). PET scan did not highlight these areas as taking in glucose which cancer does.

So another CT Scan with contrast is scheduled for May.

Negative tests are usual and if suspicious I feel should be removed.

Left there is not further metasises. They were left. Strangely with all the tests all 3 areas reduced by a mm. So the two lymphs are now 6mm & 7mm and the other is 19mm x 8mm.

There are 100 lymphs = 50 each side.

There is a RAI Scan. This is not a treatment as such. Low on RA Iodine it is merely a scan and that is what your surgeon is talking about. But you would need to stop your thyroxine for 3 whole weeks making you hypoooooo. And low iodine diet - no fish, seaweed, iodine salt etc, soy.

I questioned this scan and my surgeon changed it to sa PET scan.

No other pics of this area to compare with - that was the main trouble.

Read up on RAI treatment where radiation puts you in days after of being radio active. No one close and separate utesils etc. PET scan was 2 hours after.

Surgery is preferable and lasting.

It would be my choice. I told surgeon in first place and he said easier said than done. I believe now it is because of the ?thymus area. A thymus removal is quite something to remove.

Where is the cervical one - could it be your thymus as lymph nodes are generally not that big. Although I have an adopted daughter with a node 4.2 and she is shrinking it under a natureopath with taking iodine to bring her into below .5 and hyperrrrrr. It is shinking the goitre but she has no heart condition yet!

She postponed her throidectomy. Back in May.

Trouble she has 32 other cysts on her thyroid. TSH is 1.0.

RAI treatment which you call ablation can cause damage to your 2 parathyroids, throat, mouth, oesophagus, voice box. It can go on to cause cancer.

Take care. Prayers your way.

Mine are also in cervical area.

cheri JOY. (Tuckie)

I wish you the very best. Do you have PTC? Are you part of a clinical trial? There are so many different treatments, it is a bit overwhelming.

Sorry to hear about your diagnosis and situation. It can be confusing the different treatment options you are presented.
I had Stage III papillary thyroid cancer in 2016 with no + nodes. They performed a complete thyroidectomy and neck dissection followed by 2 rounds of RAI. I had no side effects from the RAI at the time nor residual issues. RAI is a targeted therapy. The radioactive Iodine is specifically absorbed by any remaining thyroid cells and normal tissues do not usually absorb the Iodine, rather it is passed out of your system as waste.
As a medical dosimetrist, I spent nearly 28 years working in Radiation Oncology and external "beam" radiation to the neck is not an easy treatment. Head and neck radiation comes with many side effects (dry mouth, difficulty swallowing, fatigue). Your entire neck will be irradiated as all lymph node chains must be included. There have been huge advances in external beam radiation (IMRT) which helps reduce side effects, but there are still some due to the nature of radiation.
My suggestion is to ask your provider lots of questions and speak with a Radiologist or Radiation Oncologist if you have radiation specific questions. Only you can decide what the right treatment choice is for you that you feel comfortable with. Education is key to understanding and helping the unknown be not quite so scary.
Wish you all the best,
Gwen