Papillary Thyroid Cancer Fighter suggests to join Support Groups

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Favorite Quote

“Love is bigger than anything in its way” U2

Here we share the story of Paula who is currently fighting Papillary Thyroid cancer. She asks other thyroid cancer fighters to join online support groups as they know what you are dealing with.

 

The Diagnosis

“In 2012, two tiny nodules were discovered on my otherwise healthy thyroid incidentally on an MRI of my neck and spine. After a biopsy was indeterminate, I had surgery to remove the right half of my thyroid and pathology confirmed they were malignant, papillary thyroid cancer, so the other half was removed 2 weeks later”.

The Journey

“One month after my first two surgeries in 2012, I needed a third to remove the excess tissue left behind, so I could have the radioactive iodine (RAI) to ablate remaining cells. However, a small piece remained, but it was too large for further treatment, so I went for a second opinion at Sloan-Kettering. I was told my tumors were microcarcinomas, so I was considered “low risk”, and didn’t need RAI, or more surgery!   What a relief, right!?

Fast forward to Dec 2016, a new nodule appeared. Biopsy once again was indeterminate, but this it was sent for further testing revealing a mutation, BRAF v600e. I was no longer low risk stage 1, and now am high risk stage 3. This nodule was nestled very close to my carotid artery. Surgery wasn’t something I wanted to go through again and was proving to be difficult, so I prepared for RAI.

I needed to go off my thyroid meds for 6 weeks which made me severely hypothyroid and feeling really awful, probably the worst I’ve ever felt in my life. I wasn’t allowed to drive, so I needed to arrange for rides to and from the hospital.  I felt like a slug.

I needed dosimetry to calculate my exact dose. Which is a series of whole-body scans (WBS) and bloodwork over a week. My teeny nodule wasn’t cooperating and wasn’t absorbing the iodine as expected, so I needed a higher dose of RAI.

In April 2017, after several weeks preparing on a low iodine diet and no meds, I had 243 mci of RAI. I had to remain in the hospital in isolation for 2 days, and then another 2 1/2 weeks at home after that. I have multiple cats, and just being near me can affect their thyroid so I couldn’t be near anyone living for a long time.

So, in April 2018 at my 1 yr. follow up, I was shocked to hear that tiny little nodule was still there!  I am resistant to RAI!

I had that fourth surgery in July 2018 to remove the teeny nodule.  It was attached to my recurrent laryngeal nerve.

I recently had my 3-month post op follow, and unfortunately the numbers show another recurrence. As I write this, I don’t know the next steps. The damage to my salivary glands from the radiation is permanent.  I cannot have any more RAI”.

Update 15th March 2019: I had my 3-month bloodwork this month and my doctor called me today with good news finally, my Tg levels are undetectable!  Tomorrow is my birthday, and that is the best birthday gift ever!

Biggest Hindrance

“I hate having to tell my entire story to be taken seriously.  Two words do not go together, good and cancer.  Thyroid cancer is often described as “the good cancer”. There is NO such thing as the good cancer. It’s also not “the easiest to treat”, or “if you could choose which cancer to have, choose thyroid cancer”

No! Stop that!  I’ve had 4 surgeries, a hefty dose of radiation, and am not done yet. My cancer is very real and treatment is ongoing.  I believe this thought process is why people aren’t as supportive as they could be.

Cancer is cancer. Mine is very real and it has changed me. I’m more compassionate, more empathetic, more patient, more supportive.

Finding the correct replacement medication takes a while.  Living without a thyroid, we have to take a little pill every day. Finding one that works and the correct dosage can be challenging.  It’s important to find a doctor that also treats based on how you feel, not just labs.  I do finally feel as close to normal as I can on my current dose. For me, less fillers is better”.

Motivation to fight cancer

“My daughter.  She is a sophomore in college, and wants to make a difference in this world.  She is studying biomedical engineering, and is heavily involved with relay for life for the past 6 years.

Cancer is doing its best to define me, I won’t let that happen”.

Message to other Fighters

“Join support groups, those people know what you are dealing with and can help you understand what to expect.  Don’t be afraid to ask for help.  I’m a caregiver along with my husband, for his mother who suffered a stroke 2 years ago.  We need help too sometimes.

Life can be overwhelming. Sometimes the most help comes for those you least expect it from.

And sometimes, that support has paws”.

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