Category Archives: Papillary

Radioactive Iodine NOT always necessary for Papillary Thyroid Cancer

Hi All, Sparky here!

Please note that thanks to extensive research regarding Papillary Thyroid Cancer, radioactive iodine (RODI) is not always necessary unless your doctor clearly states otherwise/it looks like the cancer spread to the surrounding lymph nodes. Studies have shown that Papillary Thyroid Cancer is less likely to spread.

Here are some articles to review, and PLEASE discuss this with your doctor. I have been getting a few stories lately where people are prepping for RODI, and I realized I had not brought this up although my doctor mentioned it two years ago. My endrocrinologist is a UCLA professor and is very in touch with the latest research. I’m always hesitant to mention any type of medical “guidance” but there have been enough studies to conclude that radioactive treatment is not always necessary after a thyroidectomy for Papillary Thyroid Cancer.

After my surgery 7 years ago, I chose to NOT do RODI (before all this research came out). I wanted proof that the cancer had spread before I went and did anything that serious. Again, with my doctor’s approval, we chose to wait and see. Then research came out that papillary thyroid cancer is unlikely to metastasize (spread) (and I had a pretty large tumor, too). I’ve been cleared of any cancer (got my blood tested every year for five years, and it is a very slow growing cancer so I wasn’t worried about any alarming growth) and am confident in my decision.

Again, this was my choice and there is a lot of research out there to consider and talk about with your doctors.
Thank you for reading and thank you for being here. <3 On a side note, I'm 7 years thyroid free and doing damn good. If only I could quit the carbs haha

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Today’s theme is: Stay Off Google

The following story is from Steven who had a thyroidectomy as a result of papillary carcinoma. He had his thyroidectomy a week prior to this story, so he has a journey in front of him. SO happy to have this fantastic first chapter in his story, and we hope Steve keeps us all updated!
Love, Sparky

Hello all,

Today’s theme is: Stay Off Google.

My name is Steven, and I am a 27 year old male from Kansas City. Today marks one week since my total thyroidectomy. While I’m sure there will be changes to come, I at least wanted to share my experience so far in an effort to boost morale for other readers. This website helped my mental quite a bit before surgery, so I felt an obligation to do my part to contribute.

On February 27th, 2018, I went into my physician for a standard checkup/physical, due to the fact my longtime physician was retiring soon, and he wanted to see me before then. I have battled with anxiety and depression most of my life, but was almost excited to go in and see him. This is because I had been feeling FANTASTIC. I was happy with my job, happy with my hobbies, happy with my family, etc. It was the best I’ve felt in years. During the physical, he indicated he felt a small lump on my thyroid. He talked to me about the chances it was nothing, but advocated I go get a sonogram the next day at a referred hospital. I left unsettled, frustrated, felt cheated, etc. I felt ZERO symptoms, and didn’t even know what a thyroid did ๐Ÿ™‚ . The mind is funny. I left the physician feeling sick and unhealthy, despite 30 minutes prior feeling outstanding. Crazy right?

I went and got a sonogram the next day and again was told it was probably nothing, and 90% are benign. A few days later, I was called back, and the ENT Doctor explained his concern. The odds were stacked against me a bit. Reason being I am 27 and a male and healthy. The first BAD sign was that he saw some calcification in the sonogram. This is often a bad sign. The chances kept getting worse and worse for a “non-issue” nodule. The next step was an FNA Bioposy. If you are nervous about these, don’t be! It takes 25 minutes, and the worst pain you get is the numbing needle. After that, it just feels weird. Not painful. The sensation of having something inside of your neck is strange, but its over quickly.

This brings me to my first point that I’ll tackle later. The waiting around for the results from the bioposy was 10000x worse than hearing the diagnosis, going through the surgery, and recovering. I’m not exaggerating. That week of waiting was far worse on my psyche than anything. This is something to consider. Please God do not do what I did. I started googling every experience ever since the human body was developed. I surfed every message board ever reading horror stories. I blocked out the good ones, and focused on the bad ones. I convinced myself I had cancer days before I was even told there was a suspicion. It did me no good, and if I could go back in time, I would have handled that anxiety much differently.

Moving along, the reports came back as Suspicious for Papillary Carcinoma, and a TT was recommended. My world came to a stop. I defeated all the good odds. My surgery was scheduled for about 10 days later. I tried so hard to get out of it. I could not come to grips that in 2018 a TT was necessary for something “suspicious”. I sought second opinions, and looked at every method possible to keep my thyroid. But the day came closer, and I was forced to accept it.

But let’s move on to the happy stuff… : )

On March 21st, I had my thyroid removed. I was nervous of course. I was in a full gown, with an IV in my arm, being constantly asked what the doctors were doing and what my name was to protect themselves. The doctor asked “Would you like something sedating to relax you?”… If you are asked this, DO IT. It is amazing. Idk what the hell it is, but it rules. Next thing I know, I gave my dad a fist-bump and my mom a kiss, and was wheeled away.

I don’t remember going “under”. I don’t even think they warned me. BOOM! Hours later, I awoke in a strange room with someone handing me a grape popsicle. It was the best treat I’d ever had. I was in ZERO pain. I was still sleepy but realized what was happening. I was told I was being goofy and making nurses laugh, so hopefully I didn’t say anything dumb : ) But please note, I had ZERO pain. That was great of modern medicine to grant me. Soon, I was hanging out in my own room with a TV and buttons for help where I stayed the night. I got woken up at 12 and 4 for vital checks, but that wasn’t bad. I was discharged the next morning with instructions.

So here I am a week later, expecting my life to be miserable. I expected a scar under my chin that would freak everyone out. I expected to be sleepless in pain. I expected to be called back and told they had to go back in. I expected the scar to get infected. I expected to have bouts of anxiety, depression, sickness, headaches, nausea, hair loss, etc. This is because I googled all of this.

HOWEVER, One week later, I feel exactly the same as I did before. Perhaps a tiny bit more tired, but I blame that on staying up late and the mental fatigue following coming off as anesthesia. I was back to work on Monday and came back to supportive and curious coworkers. I don’t blame them. My scar is so far down my neck that you can’t even see it, and my follow up appointment noted it was healing wonderfully. Are there going to be changes in the future? Probably, but I have the full support of medicine and doctors that monitor this stuff. Will my life change? Probably, but was my experience the same as Google told me it would be? No. Not even close.

Moral of the story is please note the positive stories, and catch yourself before falling down the rabbit hole of horror stories. You have NO idea what other medical issues someone is dealing with on top of having their thyroid removed. You are not them, and they are not you. If you google the symptoms, you will convince yourself you have those symptoms.

It’s 2018. Find a trusted and experienced surgeon, recognize your options and resources, take your medicine, and hopefully your first week experience is as good as mine.

Thank you for letting me share, and hang in there!

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