Papillary Tyroid Cancer, without any symptoms, must I have surgery?

RuthinJpn

Hi, I'm 39. I was told that I had Papillary Thyroid Cancer last week. It was found by the examination (X-ray) before my ovarian surgery 3 weeks ago. Strangely I don't feel any pain or something unsual around my neck. The doctor told me I had to get Total Thyroidectomy and I would have to live with breathing tube in my neck for at least 6 mths (tracheostomy). I'm really confused. Must I really have surgery? I live completely normally now. No pains, no breathing troubles, nothing unusual. How long can I live if I refuse to have surgery? I have read a lot abt Papillary Thyroid Cancer, but still I'm confused if I really have to get surgery & to take the risks of suffering after surgery, esp. the doctor said I would have tracheostomy for at least 6 mths. Thank you very much for your answers !

alapah

treating thyroid cancer

There are a few different types of thyroid cancer, the main one being papillary. Did you have a fine needle aspiration done (that's a type of biopsy procedure)? There's no way they can tell what kind of thyroid cancer you have from an xray. All thryoid cancers are treated by first removing the cancerous thyroid. For some people who only have cancer in on side and it meets other criteria, they may be given a partial thyroidectomy where only one side of the thyroid is removed. Typically a full thyroidectomy is done and that is often followed by giving the patient a calculated dose of radioactive iodine which is meant to kill any remaining thyroid cells in the body.

Did you ask why in your case they are certain that you will require a tracheostomy? I think that's not very common though I know it does sometimes happen that patients end up needing one.

I was virtually symptom free until I had hoarseness in my voice. By that time, my papillary thyroid cancer, which had started in one nodule, was unencapsulated and had adhered to my trachea and right laryngeal nerve. Papillary thyroid cancer is usually slow growing but there are more aggressive forms - and I am one that has that more aggressive form. It can appear in lymph nodes which are usually just removed surgically. It can metastasize. It can become resistant to radioactive iodine. I have it in my lungs and am no longer able to use radioactive iodine to treat it and so am on experimental chemo treatments.

Although not likely what you want to hear, I'd recommend not delaying and going ahead with the surgery. Ask your doctor about the reason he/she thinks you will require the trach. Another major recommendation is to seek out a highly experienced endocrinologist and surgeon. Two separate docs. You want ones highly experienced in thyroid cancer and thyroidectomy. Not all endocrinologists are current with all of the developments in thyroid cancer so you need to make sure you surround yourself with a medical team that really knows this disease.

Very best to you.

 

alla

alapah said:

treating thyroid cancer

There are a few different types of thyroid cancer, the main one being papillary. Did you have a fine needle aspiration done (that's a type of biopsy procedure)? There's no way they can tell what kind of thyroid cancer you have from an xray. All thryoid cancers are treated by first removing the cancerous thyroid. For some people who only have cancer in on side and it meets other criteria, they may be given a partial thyroidectomy where only one side of the thyroid is removed. Typically a full thyroidectomy is done and that is often followed by giving the patient a calculated dose of radioactive iodine which is meant to kill any remaining thyroid cells in the body.

Did you ask why in your case they are certain that you will require a tracheostomy? I think that's not very common though I know it does sometimes happen that patients end up needing one.

I was virtually symptom free until I had hoarseness in my voice. By that time, my papillary thyroid cancer, which had started in one nodule, was unencapsulated and had adhered to my trachea and right laryngeal nerve. Papillary thyroid cancer is usually slow growing but there are more aggressive forms - and I am one that has that more aggressive form. It can appear in lymph nodes which are usually just removed surgically. It can metastasize. It can become resistant to radioactive iodine. I have it in my lungs and am no longer able to use radioactive iodine to treat it and so am on experimental chemo treatments.

Although not likely what you want to hear, I'd recommend not delaying and going ahead with the surgery. Ask your doctor about the reason he/she thinks you will require the trach. Another major recommendation is to seek out a highly experienced endocrinologist and surgeon. Two separate docs. You want ones highly experienced in thyroid cancer and thyroidectomy. Not all endocrinologists are current with all of the developments in thyroid cancer so you need to make sure you surround yourself with a medical team that really knows this disease.

Very best to you.

 

Hello Alapah,
My name is Alla

Hello Alapah,

My name is Alla and I was diagnosed with PTC few months ago, I am scheduled to have surgery on 9/2, however, I did do BRAF mutation mark before surgery and was positive. Did you have BRAF done for you? How big was you nodule? How long has it been since you had your surgery? My understanding since I have BRAF my form as well more aggresive and can reccure between 1-5 years. Sorry to ask you all these questions, but I am very scared for my upcoming surgery, thinking am I better off leave it the way it is or fight for my life after they remove it and I have less chances of survival? 

 

alapah

alla said:

Hello Alapah,
My name is Alla

Hello Alapah,

My name is Alla and I was diagnosed with PTC few months ago, I am scheduled to have surgery on 9/2, however, I did do BRAF mutation mark before surgery and was positive. Did you have BRAF done for you? How big was you nodule? How long has it been since you had your surgery? My understanding since I have BRAF my form as well more aggresive and can reccure between 1-5 years. Sorry to ask you all these questions, but I am very scared for my upcoming surgery, thinking am I better off leave it the way it is or fight for my life after they remove it and I have less chances of survival? 

 

BRAF

Hi Alla,

I do have the BRAF mutation which was confirmed by testing tissue from a PTC nodule in one of my lungs. I had a surgical lung biopsy for that. I'm actually curisous about your BRAF determination - how was that done before having surgery to remove the tumor? It can't be determined through a blood test.

I was diagnosed in June 2009, initially via a fine need aspiration.  My nodule was big but I can't remember the exact size. I had not really noticed the tumor as it was growing inward, pushing into my trachea, which is now permanently "dented" as a result. But my voice got very hoarse for about two weeks and I was sent to an ENT. By the time I saw her, my ability to swallow was a little off. When the ENT scoped me she immediately noted that a mass was pressing into my trachea and sent me down for a CT scan. Before I even drove home they knew it was cancer form the CT. I had the FNA then next day and surgery three days later because they could already tell that mine, though PTC, was aggressive. 

I know it's scary to think about cancer and surgery and treatments but you really must get the surgery. IMO, waiting or declining surgery is not an option. You have a much, much, much better chance of survival if you go through with the thyroidectomy. You can do it!

My thyroidectomy was my first surgery. I was surprised how well it went and how little time it took to recover. It really was ok. I was under the care of a surgeon who had done many many thyroidectomies and was incredibly skilled - you want someone who has done lots of them. Mine was a general surgeon but some ENTs do thyroidectomies too.

PTC can spread, not just to lymph nodes (which usually can be removed or treated by alcohol ablation/injection methods) but also to other parts of the body and once it spreads it can be very difficult or impossible to treat. Thyroid cells can also become iodine resistant which means that the main treatment, Radioctive Iodine (I-131), will no longer be effective. There are trials underway to explore possibliites of boosting absorption in non-avid patients but those have only just begun.

I have many nodes in both lungs (since 2010) and my PTC is no longer avid for iodine so the only options are experimental chemotherapy drugs which buy time but are not a cure. I am on my third chemo drug. All have been in pill form taken every day until the drug no longer works for me. I get CT scans every 2 months, and bloodwork every two weeks. My advice is to be proactive and do all that you can to ensure your cancer doesn't spread or become non-avid over time. 

Best to you.

 

RuthinJpn

alapah said:

treating thyroid cancer

There are a few different types of thyroid cancer, the main one being papillary. Did you have a fine needle aspiration done (that's a type of biopsy procedure)? There's no way they can tell what kind of thyroid cancer you have from an xray. All thryoid cancers are treated by first removing the cancerous thyroid. For some people who only have cancer in on side and it meets other criteria, they may be given a partial thyroidectomy where only one side of the thyroid is removed. Typically a full thyroidectomy is done and that is often followed by giving the patient a calculated dose of radioactive iodine which is meant to kill any remaining thyroid cells in the body.

Did you ask why in your case they are certain that you will require a tracheostomy? I think that's not very common though I know it does sometimes happen that patients end up needing one.

I was virtually symptom free until I had hoarseness in my voice. By that time, my papillary thyroid cancer, which had started in one nodule, was unencapsulated and had adhered to my trachea and right laryngeal nerve. Papillary thyroid cancer is usually slow growing but there are more aggressive forms - and I am one that has that more aggressive form. It can appear in lymph nodes which are usually just removed surgically. It can metastasize. It can become resistant to radioactive iodine. I have it in my lungs and am no longer able to use radioactive iodine to treat it and so am on experimental chemo treatments.

Although not likely what you want to hear, I'd recommend not delaying and going ahead with the surgery. Ask your doctor about the reason he/she thinks you will require the trach. Another major recommendation is to seek out a highly experienced endocrinologist and surgeon. Two separate docs. You want ones highly experienced in thyroid cancer and thyroidectomy. Not all endocrinologists are current with all of the developments in thyroid cancer so you need to make sure you surround yourself with a medical team that really knows this disease.

Very best to you.

 

thank you, Alapah

Thank you for your reply, Alapah ! I'm sorry for being late in replying you.

Yes, I got biopsy & CT Scan already.

The doctor said the cancer had spread to my lymph nodes.

On the surgery scheduled on Sept 12 th they will take my thyroid (total thyroidectomy) and will take some of the lymph nodes.

I'm not sure why I will use semi-permanent tracheostomy. That time I thought I would need it because of the damage around my throat caused by the surgery.

However, I became scared & worried after I had arrived home & I decided to write on this board to get some advices.

I am now feeling fine, without any breathing or eating troubles, not even any pains, but I become very sad when I imagine how my condition will look like after the surgery next 2 week.

I am not sure how the tracheostomy will effect my life.

Thanks again for your reply & advice, Alapah !

I will go to meet my doctor (surgeon) this Friday and I will ask him a lot of things abt my surgery.

Take care, Alapah! My best rgds to you !

 

RuthinJpn

RuthinJpn said:

thank you, Alapah

Thank you for your reply, Alapah ! I'm sorry for being late in replying you.

Yes, I got biopsy & CT Scan already.

The doctor said the cancer had spread to my lymph nodes.

On the surgery scheduled on Sept 12 th they will take my thyroid (total thyroidectomy) and will take some of the lymph nodes.

I'm not sure why I will use semi-permanent tracheostomy. That time I thought I would need it because of the damage around my throat caused by the surgery.

However, I became scared & worried after I had arrived home & I decided to write on this board to get some advices.

I am now feeling fine, without any breathing or eating troubles, not even any pains, but I become very sad when I imagine how my condition will look like after the surgery next 2 week.

I am not sure how the tracheostomy will effect my life.

Thanks again for your reply & advice, Alapah !

I will go to meet my doctor (surgeon) this Friday and I will ask him a lot of things abt my surgery.

Take care, Alapah! My best rgds to you !

 

Dear Alapah,

I met my surgeon yesterday (Friday) morning and asked him many things. After all, I have no choice but to have surgery as scheduled (Sept 12th). I will also use tracheostomy even after the surgery for abt 6 mths. I'm really anxious. I can't imagine my life without thyroid & with tracheostomy. I'm thinking to cut my beloved long hair to make me easier in taking shower later after the surgery, but I feel very sad. I will lose my beloved long hair... I will lose my voice & I won't be able to sing anymore... Maybe I will also have to give up my fave stuffs like coffee. I may be overthinking, but I can't help it.

Thank you, Alapah ! Take care !