Help Miranda SLAY rare thyroid cancer

UPDATE: 01/18/24 the surgery was pushed we have managed to make one month of arrangements in order to be close by since we are travelling almost every day and it’s not only exhausting but it drained us financially

ANY help to get us through this next month of surgery would be more than I can ever ask for in this lifetime thank you

UPDATE: 01/04/24 THE TEST RESULTS!

Miranda was diagnosed with a very rare variant called DIFFUSE SCLEROSING Papillary carcinoma

It’s considered more aggressive and is likely the reason she was metastatic upon diagnosis.

It makes up only 0.8% of ALL papillary cases

THE GOOD NEWS: surgery is always the best first line of defence and we have that access now thanks to all of you. We also learned…

She has a gene mutation called RET PTC1 which already has FDA approved targeted therapy treatments available. Which means we have prevented her from receiving harsh treatments that wouldn’t have worked.

This is all thanks to the testing and everyone who made this happen. This information saved her life.

The number 1 priority right now is keeping Miranda stress free, and having an uneventful surgery.

Immediate needs: a short term rental (2 months) to have Miranda safely close to the hospital during and after surgery. One month has been covered so far!

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UPDATE: 12/08/23 Miranda has been officially diagnosed with metastatic thyroid cancer.



The good news: because of you, Miranda has also been approved for surgery!!

I started this fundraiser to help with the cost of a lifesaving molecular test in order to just get access to the surgery needed for a single thyroid tumor: As much as it sucks to hear I have a late stage metastatic diagnosis, I have answers now. And we got the approval to move forward.

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Stage IV rare cancer thriver DENIED access to Surgery for unrelated thyroid disease:

Hi friends. I’m Miranda, often known as ‘Pheo VS Fabulous’ The short version?

I need IMMEDIATE help fundraising for a life saving molecular test for a thyroid tumor

Wait, what?! Ok, longer version

I already live with a rare cancer called metastatic pheochromocytoma. Which has nothing to do with my thyroid, but it’s in part why I was DENIED surgery. It’s a complex rare diagnosis that shouldn’t but DOES impact access to care

I’ve been followed for the last 2 years for a thyroid nodule, had 3 biopsies, travel 6 hrs weekly to get specialized care, and I’m shocked that it feels like it’s happening again…

What’s happening again? Well, I was diagnosed with pheochromocytoma at 19 years old after being told I was too young to have anything. I was having debilitating ‘attacks’ every day from the tumor releasing adrenaline, they said it was anxiety. It took a heart attack to be eventually be diagnosed.

My symptoms never went away after surgery. I was dismissed AGAIN being told I was anxious for 4 years. I had a recurrence, we found out it was then terminal due to the delay in diagnosis and an error in surgery. I was only 23 years old.

you can see why I can’t wait for this test I need

I quickly started a blog sharing my story to provide awareness, resources, and help others advocate for the specialized care they need all around the world. I just wanted to know that my life would matter. I now use my social media to talk about the challenges with rare disease, to show other ‘thrivers’ we are more than a diagnosis!

I set out to show the world that NOTHING and NO ONE (not even cancer) can take away who you are. I call it ‘fabulous’

It’s been 9 years navigating a ‘terminal’ illness. This wednesday, November 29th, I’ll be 2 years STABLE!!! From death bed to dancing, I’ve proven over and over we are not a statistic, showing what it looks like to receive improper care for my rare disease VS how it can look:

VS me today:

And still…

I am having difficulty because my file says ‘metastatic pheochromocytoma’ which makes me a higher risk. It feels like I’m less human.

We can’t ignore this thyroid tumor! Here‘s what we currently know: Based on the characteristics, it’s grade 5 highly suspicious of another rare cancer. The risk level is 75% +

From a surgical perspective, I’m too high risk to go in. In order for them to consider it, they’d have to have irrefutable evidence that it’s cancer

From an endocrinology perspective who’s known and followed me for years, they won’t do a watch and wait for me SINCE I am high risk! Hello, history? Especially since it’s already been in there as long as it has AND changed characteristics. The type of cell is also worrisome, and their stance is “we need to do the molecular test, NOW”

This way, everyone’s happy. No stone gets left unturned. We get a clear answer (hopefully) and everyone knows and agrees to do at that point

That may mean a form of treatment, surgery, or nothing! We can confirm the malignancy, or NOT. I’m nothing if not an optimist

I need help to get the appropriate care for my thyroid. Here’s how

This fundraiser will cover the cost of molecular sequencing test that can confirm the malignancy with 156 genes also tested!

It’s not FDA approved here in Canada yet, and tumor has to be a grade 4 or less to be covered, mine is 5. chart below. I’m still not sure how that happened after 2 years of surveillance but here we are. So my only option is out of pocket

We travel 6hrs weekly to get the specialized care I require. The frequency has increased to weekly and with the thyroid concern, it’s been physically, mentally and financially draining.

6500$ goal will allow me to get the test

1000$ will help us breathe with immediate travel/stay costs since the hospital is hours away and we have to be ready to go anytime

We are exhausted, overwhelmed, and wouldn’t be asking if we didn’t need the immediate help to do this. It came as a shock to me too, I’m still kinda shocked. It’s been very up and down, I just want to have clarity and know what’s next.

Imagine having scanxiety for 2 constant years lol

The thyroid issue has also caused Graves’ disease. I’m in a ‘thyroid storm’ every cell is on fire - your body feels like a jail you’re trapped in.

My thyroid hormones are causing symptoms that are hard to differentiate from my other illnesses. It’s making things hard to manage, to say the least. I’m a serial down player.

The longer my body lives in this state of stress: the more adrenaline the tumors will release and potentially cause my stable cancer to worsen like before. Stress is the worst trigger for all of the above illnesses. We can’t go back here:

We won’t let anything stop us from getting the care we need. EVER. Say it with me, “Watch me”

The goal is to avoid EITHER disease from worsening, and do WHATEVER ends up being necessary.

The cost of this test will allow me to get clarity, and appropriate care so I can get back to what I do best.

Reminding you nothing can take away our ✨fabulous✨

I can’t wait to tell you we’ve done it!!!

follow along: @pheovsfabulous

My blog: www.pheovsfabulous.com

WE ARE SO GRATEFUL FOR YOU, for reading, sharing, praying, your generosity, and just being here with us

Miranda, Serge and William