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Recent TT and Upcoming RA-131 Treatment

Posts: 18
Joined: Feb 2011

I was diagnosed on 12/28/10 with Papillary Carnicoma by my Endocrinologist via an FNA a week before. The nodule/tumor was 1.57 cm in size. He had some referals to Surgeons but they weren't amoung those "in-network" through my healthcare provider. Researching for a Surgeon was tough, but eventually found one.

I had a TT on 2/7/11. Was hospitalized for 36 hours. No calcium issues. Recently I saw my Endocrinologist to discuss the pathology report and apparently my lymp nodes were NOT taken out nor sampled.
*What about yours? *Is this common?

I have scheduled a consult with a radiologist to begin my RA-131 treatment which will include Thyrogen injections.
* For those whom has had this, what should I expect?

I don't know about y'all, but just as the stress and anxiety levels calm down because something is finally done, then you get more information and/or tasks, and that level goes right back up. *Anyone have some tips on how to get rid of those feelings?

Posts: 507
Joined: Apr 2010

On my surgery they took 2 of my 4 parathyroid’s cause they were in the thyroid tissue itself they didn’t take any lymph nodes cause there was no evidence of spread of cancer

be glad you are getting the Thyrogen injections trust me the other way sucks.

you will probably be put on a low iodine diet and that’s enough of a pain.

myself I am dealing with depression issues and I have been prescribed anti-depressants

have you asked the doc there may be something they can prescribe

I have found exercise helps as well.

good luck and keep us updated

Posts: 12
Joined: Dec 2010

Hi Wendy.
I just had the Thyrogen shots Monday and Tuesday with the tracer dose of radiation and then Wednesday, I had the full body scans and and assessments and the 131 radiation and sent home. I had no reactions from the Thyrogen at all. So far so good. I had mine tt Nov. 17th and no lymph nodes taken as they did not suspect cancer at the time. Turns out the pathology reports told a different story - papillary cancer both sides. When I went in for the total body scans and x-rays and all the assessments prior to the dose of RAI 131, the Doctors said it looks like it was just confined to the the thyroid and was just healthy tissue remnants that needed to be eradicated. So far, so good. no ill effects at all. Looking for ending low iodine diet tomorrow!!! Yippee! Currently at home for a few days of isolation.. Good luck!

Posts: 582
Joined: Oct 2010

Hi Wendy!

Welcome to our support community! While it sucks that you have been diagnosed with Papillary Thyroid cancer, there is good news. I am not going to tell you that it's a "good cancer" because there is no good cancer. The good news is that it looks like they caught yours early and Papillary Thyroid cancer responds very well to RAI. Also great that you have had no issues with calcium. Looks like you might be a text book case of simple standard treatment without recurrence. You just may be one of the lucky ones.

I am assuming they did a sonogram of your neck to determine if there was any node involvement before your surgery. This is common practice. So, I wouldn't worry about that.

I was diagnosed with Papillary Thyroid Cancer in October of 2009. I had a TT in November 2009. In May 2010 I had metastasis to the Lymph nodes. Had a right neck dissection in June with RAI in September and in November it was discovered that the nodes the surgeon was supposed to remove were not. Changed surgeons immediately. Had a right neck dissection re-do on December 17, 2010 with another RAI on February 4th, 2011. My last scan a week ago was clean. No evidence of recurrence or metastasis.

I tested positive for the B-RAF mutation gene after my second surgery however. This gene makes my cancer more aggressive (faster growing) and harder to treat. Might want to ask your doctor about this test is they still have tissue left from your surgery.

For the RAI treatment you will go on a Low Iodine Diet for about two weeks. Good that they have offered you the Thyrogen injections. Going Hypo sucks. I had Thyrogen with no issues or side effects and I was able to uptake the RAI just fine. Thyrogen is an injection in the Glute muscle. Yes, you will have to show the nurse your butt. Better than going Hypo.

RAI can cause some damage to salivary glands and taste buds, I was put on steroids for three days after my treatment to prevent this. It has risks later in life of developing other cancers but if you don't kill this one you won't have a chance to tackle the next one, right? The first time I had no issues (dose was 83 mCi's) and second time (178 mCi's) had some swelling in the salivary glands just below my ears, but only mild with a bit of tongue burning. I had a red face and neck for a short period of time. Be aware that you will probably not need anything close to what my second dose was. That was aggressive therapy to prevent another recurrence due to my B-RAF mutation gene.

Go to thyca.org for their PDF format recipe book. Very good recipes and information of what you can and can not eat. I have also posted some of my favorites on a post called "tips for Low Iodine Diet." Read those posts.

There is no need to stress about this. The isolation is not that bad. Use the time to treat yourself to long naps, catch up on some reading and do a makeover. You know; Pedicure, Manicure, wax, facials or whatever. I liked taking long warm bubble baths and watching some of the daytime TV I never get to see because I am usually at work. I.e. Doctor Oz, Oprah, the Today Show, etc.

As far as anxiety; you will get through this. This type of cancer does not have a high mortality rate when caught early as yours was. It's mostly just annoying. Wear your scar as a badge of honor and share with others your story. Do some fund raising for the American Cancer Society as well. It will make you feel better about yourself. I am doing the Relay for Life on April 2nd in my town. I wear a ribbon of pink, blue and aqua on my Scrubs every day at work and am proud to be a survivor. I share my story with my patients too if they ask or are going through something similar. Remember: that; that doesn't kill you, makes you stronger. Stress and anxiety won't help you through this. A positive attitude, laughter and love will. After this is over you will realize that you can do anything. You are strong and you are a survivor! And if non of this works, ask your doctor for a good dose of Xanax or Valium ;)


Posts: 18
Joined: Feb 2011

Thank you all for the information.
I have gone through some of the other postings as well. It is true when they say everyone is different.
My biggest problem is thinking too much of this or that, scares me. I have never had any type of anxiety or stresses this great. I feel great physically, but mentally it is just different. Hard to control my emotions.
I am sure there are other folks that have the same emotions/feelings as I do...

Posts: 582
Joined: Oct 2010

Yes, this is scary as hell, especially since you have never experienced anything like it. You worry about everything until it overtakes all of your thoughts. Then you will get to a point that you realize worrying won't solve anything and you will just roll with it and get on with your life. You are not alone. Try reading. Take walks or exercise to get your endorphins going, it will help a little for now.

Posts: 507
Joined: Apr 2010

yes i understand about feelings and emotions... They decided to put me on anti-depressents cause of my multiple medical issues they seem to help (corse they are swaping my andi-depresson meds so this is gona be a fun week)

I have found working out to the extent you can helps relieve the stress as well

good luck and keep us up to date please

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