NET CANCER DAY 2022

NET CANCER DAY 2022

What is global NET CANCER DAY? What does the ‘NET’ stand for?

NET cancer day is recognizing all ‘neuroendocrine’ type tumors and cancers. Meaning the tumors arise from the neuroendocrine cells in the body. NE-T stands for neuroendocrine tumor and NE-c is neuroendocrine cancers.

This day brings us all together to push for change in the diagnostic process. It provides a global effort to inform patients of what symptoms to look out for.

The NET CANCER DAY campaign is to

KNOW THE SYMPTOMS.

PUSH FOR A DIAGNOSIS.

As someone who’s been touched by this disease since my teens, I can say from experience that these efforts have made a huge impact. As patients we provide the most intimate knowledge of these conditions. It’s us that the health care professionals learn from, through trials and medical journals, it’s our experience that is providing up to date info.

But as everyday people, we are making CHANGE. By telling our stories, sharing what symptoms led to the diagnosis, types of imaging we had, challenges we faced with diagnosis, surgery, follow up, recurrence. It all helps others to better navigate their own unique NET CANCER experience.


I wanted to take a moment to recognize those who are navigating this complicated illness on the daily

The patients who are having to work so hard to know the symptoms, push for a diagnosis. Doing our own research, finding support groups, knowing what’s outdated information. Creating medical resumes to explain our complex needs. Learning how to advocate for yourself medically isn’t easy. Keeping our health care providers up to date. All while trying to fight the disease and live through insufferable symptoms. It can feel like the world is on our shoulders, but know there’s a herd of zebras ready to hold some of the weight – anytime.

The caregivers who are pushing on our behalf, hiding the fear by fighting for us. Advocating right alongside us. Telling their loved ones story, joining the groups, doing everything they can to learn how to support their zebra.

The physicians who are taking the time to make change, stay informed, look for the zebra 🦓 the physicians who simply believe us

The nurses who hold our hands and are kind to us through long hospital stays. Taking the time to learn how to better care for our unique needs.

The specialists who treat us, who dedicate their life to improving diagnostic measures and overall care. We need more physicians like you!

The pheo para alliance for providing a safe landing space for pheochromocytoma and paraganglioma phamilies. Their mission to provide up to date information, create excellence centres, and make change within this community. Working with physicians around the world to provide better diagnostic measures and specialized care. Offering patients support through awareness, webinars, physician led discussions, patient led discussions, and just knowing there are other pheo para zebras out there.

The international neuroendocrine cancer alliance (INCA) for leading the charge on NET CANCER DAY. Providing up to date information for ALL types of neuroendocrine tumors and cancers. (NETs & NECs)

The neuroendocrine cancer awareness organization (NCAN) for the NET cancer community. Providing resources to patients and conferences to keep the community up to date. Fundraising and sharing the zebra stripes around the US

The carcinoid foundation for providing all types of resources and support for neuroendocrine patients. Their ‘find a doctor’ holds an international database of specialists needed for this disease based on area of expertise and location! example of Canadian specialists listed below 👇🏻

On behalf of everyone touched by this disease, THANK YOU! THANK YOU! THANK YOU! Thank you to everyone for doing their part in creating change.

I’m still alive today with metastatic pheochromocytoma (a form of net cancer) because of awareness days just like this. This is how we make change within the rare community! This is why I will continue to tell my story and share any knowledge I know! 🦓 WE ARE STRONGER TOGETHER! #zebrastrong


HIGHLIGHTS & INFOGRAPHICS

I am so proud of the information I have been able to create and share this year. I will include all of the projects and infographics for this year’s campaign so it can be revisited when needed!

🚫BENIGN VS MALIGNANT 🚫

This is first and foremost one of the most common mistake I am still hearing when it comes to pheo and para tumors

Why is this information dangerous? When we hear benign we often sigh a breath of relief and think it’s less serious than its counterpart: malignant

But it’s not. The reason why they changed the wording when it comes to these tumours is because there’s no way of 💯 knowing if they are malignant under a microscope 🔬

Because of this, many patients (including myself) have been told their initial tumor is BENIGN. Which leads to a false sense of security around recurrence, and misunderstanding when it comes to the need for lifelong follow up

It removes the risk and concern for recurrence, which is high by the way. And it’s just outdated and simply put – wrong

If you are still hearing this term being used, call it out. Offer the up to date info to provide it to the physician for their records. If you see it being said at a healthcare centre, email them with this updated info.

NET PATIENTS, please ensure you have yearly follow ups. Including new labs and scans if you are symptomatic!


You can read my diagnosis story here and my misdiagnosis story here about my recurrence


Fighting Pretty (a non profit supporting women through cancer) helped spread the word with this feature and a special mention in their newsletter. Since being the first rare cancer that joined the fighting pretty community, they created ZEBRA gloves of strength to help continue share awareness through empowering stories everywhere.

Fighting pretty wrote:

We stand with all of the beautiful Zebras within our community. 🦓💪
Join us in spreading awareness about NETs by sharing this post to your story and be sure to follow Miranda for more inspiring content! 💖


PHEOVSFABULOUS INFOGRAPHICS

For my complete pheo attack survival guide, click HERE


NET CANCER DAY LIVE 2022

We welcome you to watch the replay here. We shared about our own experience while offering tangible ways of supporting your loved one. All while embracing your new normal 🤍

net cancer day graphics


That’s a wrap for this year phriends. There was a lot of information shared in one day. I hope you are able to get some good self care in after all that!

Feel free to save and share any of the graphics here

I encourage you to send this blog to loved ones to keep them up to date, along with any other info that resonated with you.

You can connect with me and find daily content on my Facebook, Instagram and tiktok

@ pheovsfabulous

Like & Leave me a comment here if you enjoyed this content. You can opt to follow the blog to get notified when a new article is published

🦓💋💪🏼👏🏼👏🏼

Health Update: navigating multiple conditions

Health Update: navigating multiple conditions

I feel like I have so much to discuss since yesterday’s appointment, so here we go. NET CANCER DAY has really got me thinking a lot about how much responsibility falls on us as the patient. I’ve always known this, and I often discuss how the information I share relies on us (the patients) to advocate for themselves in an unbelievable way

Somehow yesterday living it in real time while the campaign ‘know the symptoms, push for a diagnosis’ echoed in my mind…. It hit different

I’ll be giving a bit of a health update, while sharing how I prioritize multiple symptoms and conditions

The difficulty of living with more than one health condition is having to navigate which is most urgent. This can be dangerous and counterintuitive for the overall picture and quality of life for someone with chronic disease.

I went to see my palliative care doctor, who is also my family physician. Those of you who know our past with palliative care has been rocky at best.

Anyway I like her, I trust her, and she was the only one we continued with for my local care.

There was a lot to go over, and so already that can be overwhelming for both of us.

I typically talk about my concerns in order of urgency. I also try not to be rushed and I do make an effort to lead with what I’d like to prioritize.

discussing multiple concerns…

Normally doctors appointments begin with going over what’s happened since last time. This ends up taking up the bulk of the time, leaving little room for what’s currently going on. Honestly I had too many new issues of concern to discuss so I quickly dived in, not leaving room for previous updates

First I had to address my breast health, she did a thorough exam and agreed with my self exam findings. She ordered a mammogram and marked it urgent. Good that it’ll be quick, bad that it’s considered urgent. I requested there be an ultrasound with it due to my age.

I wouldn’t have known to ask for ultrasound with it if not for so many #breastfriends sharing their stories. I always ‘feel it on the first’ and that helped me to identify when something felt different.

I had brought up my concern at my last appt with a resident before seeing my specialist. I wasn’t laying down when she did her super quick ‘exam’ and if I had relied on her “there’s nothing” I wouldn’t be having this investigated at all. You can see the importance of self advocacy in ALL medical situations. Following your gut instinct and pushing for answers is essential for your health

Young women’s breast health requires a different approach, and so ultrasound is recommended as a supportive measure. We talked about the possibility of a breast MRI as well, but are starting here. I am used to not reacting before something is actually real or concrete. Still a little scary tho!

With #netcancerday on my mind I informed her of the high rate of NETs that can be in other parts of the body such as the breasts (always an advocate!)

I will be referred to a dermatologist for some issues with the skin also. She suggested the use of antibiotics to try and relieve the recurring skin issue I have under my breast. I declined, as I reserve antibiotic use for EMERGENCY matters.

My medical resume came in handy at this appointment as she asked which medications I cannot take or am allergic to. Sometimes we think we don’t need these resources because it’s a doctor we are used to or not a big deal. ALWAYS bring your medical resume. I was able to hand her the sheet of contraindicated meds with mast cell activation disorder. You can find that here

It was feeling like a lot already at this point, but there was still other matters to deal with. We discussed the progress or lack thereof with my painful twitching and spasms. My upcoming MRI for the brain to investigate further and how I didn’t vibe with the movement specialist 😂 but I quickly veered back to the current unresolved issues at hand. Breast, lymph, feet. Like a mantra in my mind, making sure I didn’t forget what I’d come for

I asked about the possibility of lymphedema in my left arm, since it’s never been brought up at a single appt for the last several years. She looked at both arms and immediately saw a difference in size. I pointed out how the skin sort of puckers inward and how it’s always been very painful to do blood pressure on the left. She agreed with the strong possibility of lymphedema. I asked about the possibility that it can be impacting my abdomen as well since I’d had such an extensive de-bulk surgery. She said she’s never had a patient with it but it’s a possibility

I’ll be referred to a local lymphedema clinic.

Last, I brought up my chronic foot pain. I explained that this one really has me worried and I don’t have any idea what it could be in relation to. Things like this are always a bit tricky because we have to ask if it’s related to my existing conditions. I haven’t had any luck connecting the dots in the patient community. My endo tried a complex B vitamin to see if that would help, but I’m still having the issue.

First thing I am asked with each concern I address “have you talked about this with your specialist?” it happens every single time. Each doctor asks if I’ve talked about it with someone else.

I get frustrated because when I’m at my specialists… they need to focus on their specialty! So they often ask if I have a family doctor. With complex medical issues and multiple concerns, there’s a lot of ping pong as I like to call it. Which is why I often bring up the most urgent issues to each doctor. I then see who’s willing to help or what their opinion is. It allows me to get multiple opinions and saves everyone time

I do get a bit tired and upset when it’s always me that has to find everything. I try to think back to a time the onus didn’t fall on me to find answers, I can’t recall a time that it wasn’t like this.

A lot of it boils down to 2 things, when you are rare and medically complex… we deal with order of urgency. Which means the less urgent matters gets swept aside until there’s time to deal with them. But there’s never time, so you have to eventually make it a priority. PAP tests, women’s health checks, and regular labs for vitamin and hormone deficiencies are often not done.

A lot of the sweeping aside ends up turning into bigger issues later on. It can become the things that impact our quality of life the greatest. Ignoring small issues adds up into big problems. It ends up being what creates other advanced issues due to lack of treatment or care early on.

For example, my endometriosis diagnosis had been put off until last year. It meant not doing regular PAP tests, because I am treated palliatively. I was asked verbatim “would you really want to know…?” meaning: do I really want to know if there’s something else wrong?

I’d like the opportunity to deal with whatever is going on with my body. Putting my head in the sand saying “I’m guess I’m dying so LALALLAL” that’s an unhealthy and incorrect approach to palliative care or ANY care for that matter

By the time I got answers I had been suffering with unimaginable pain for over 10 years. Pain that was always blamed on the cancer. I was diagnosed with advanced stage 4 deep infiltrating endometriosis. It can’t be cured or surgically removed. I have to just live with it and try to manage the spread with hormone therapy AND pay out of pocket for uninsured pelvic floor therapy to manage pain. So you see, these ‘lesser issues’ can wind up being what impacts your life and pain levels greater than anything else

Quality of life improvement for me means taking care of root cause issues and treating what needs to be treated. We can live long lives with reduced pain

So this is where I’m at currently with just the appointment from yesterday. I won’t know what my cancer is doing or not doing until later in the year – as those labs take a long time. I will have to get imaging in the new year so we won’t have an up to date look into that until 2023 for now.

This is why I am prioritizing all these other concerns. While putting a focus on improving my baseline health. I put a constant effort into regulating my nervous system, managing stress levels, and doing daily healing practices of my own

I do what I can with what’s in my control, I realize I am doing a lot at once and it’s time to be patient. So I can begin to see the results of all my efforts.

I got upset yesterday seeing that I am rapidly gaining weight with no cause again. This becomes an issue because it’s happened many times with no answers as to why. Unexplained weight gain is often hormonal, but that doesn’t narrow it down for me. We know it’s because of the excess stress hormones – but In 12 years no one has been able to identify which. Why it happens suddenly when it does, and so I’m determined to do it myself. With the next round of labs I will be able to see which level has increased.

I will also request to have my inflammatory levels checked, insulin and leptin resistance, hormone deficiency, food intolerance, and vitamin deficiencies. Any and all things that can be related to weight gain. I had requested (non specific) labs to be tested with her, but she refused on the basis that we need to have a specific reason we are looking for. Or else they can find issues we weren’t trying to find, which I just think is ridiculous. If you have an incidental finding it should be seen as positive. It’s not as if we’re looking for fun without any cause. So fun, right?!

In the meantime, I am reminding myself I am doing what I can. I am doing my best. I wish that someone had told me sooner in my journey to stop focusing on trying to control the things that are simply uncontrollable…

And put focus on what I can

For example: if my body is rapidly changing, creating more resistance by fighting back with restrictive eating and unhealthy movement is dangerous for me.

Instead: learn to love my body in all forms through self compassion and patience. Relieving the pressure and stress this causes until answers come, allowing me to be at peace and letting things just … be

The lesson I am taking away and am sharing with you is that self advocacy is a powerful tool. It can also be overwhelming, exhausting, and feel like a lot of responsibility.

There are times when we have to loosen our grip a little and let the universe, let god, let our bodies, let be.

We have to put a bit of trust into something other than ourselves. That’s what hope allows for, faith, and mindful practice. It’s a delicate balance for our own good and emotional well being

I love hearing from you, you can connect with me:

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Facebook: pheo Vs fabulous

It’s not just a simple blood test

It’s not just a simple blood test

There’s nothing simple about plasma metanephrines collections. Each time I walk into the lab, I am often met with confusion. Experienced lab technicians that haven’t seen this before, and don’t know the protocol to follow. It’s stressful, it’s unnecessary, and as an advocate for 10 years lived experience fighting this disease – I’m here to help.

For the patient: please go to an experienced centre, preferably a large hospital. Please bring with you the following printed protocols including this blog

Take a look previous to your appt which labs have been ordered. Some may have special instructions such as fasting, standing, lying down, etc.

Specimen collection protocol

endocrine society protocol

*draw in prechilled tube, the blood sample should be kept on wet ice until centrifuged* also needs to be shipped refrigerated
Proper specimen collection for plasma metanephrines: pre chilled lavender tube delivered STAT on ice

For the lab: most patients wait an average of 4-5 years to get a rare diagnosis, please consider this with care when following this protocol. Thank you for the work you do and taking the time.

For diagnosing physicians:

Consider the high likelihood of recurrence when a patient is highly symptomatic post op.

In the case of normal plasma metanephrines but the patient is still symptomatic:

REPEAT REPEAT REPEAT

If biochemical levels are not 4x elevated, watch for subtle trends in elevation. Even small increases are suggestive for recurrence with history of pheo para dx. Chromogranin A and dopamine (3MT) must be included in each follow up

High clinical suspicion would include a patient with history of NET tumor, or is 3 months + post removal and is still symptomatic. For these patients it is recommended to move onto imaging

Combined scans of structural and functional imaging are recommended for patients with previous history who are symptomatic as recurrence is highly likely!


Note about the author: Miranda is a 31 year old awareness advocate currently living with metastatic pheochromocytoma. First diagnosed at 19 years old with a ‘1 in a million tumor’ much to her surprise, the episodic (attacks) didn’t resolve. Miranda was a high risk patient that was dismissed due to ‘normal’ biochemical levels. Her continued symptoms attributed to anxiety.

On October 10th 2014 (four years later) Miranda was diagnosed with recurrent pheochromocytoma. This led to the discovery of over 60 tumours and a terminal diagnosis. Curative options no longer possible, she was palliatively treated at 24 years old.

Miranda and her husband were told she was going to die that day. Non genetic pheochromocytoma can recur, the 10% rule is outdated and ALL cases require lifelong monitoring. The patient’s symptoms should be acknowledged with repeat biochemical testing and imaging to confirm.

Miranda went on to be treated by a world class multi disciplinary team of NET specialists at the MUHC in Montreal, QC. Undergoing debulk surgery in 2016, MIBG therapy, daily Sandostatin injections and PRRT clinical trial in Quebec City. ‘fabulous despite the odds’ Miranda has been redefining terminal illness ever since. Advocating for patient awareness around the world

From the author: I have dedicated my life to helping patients and physicians better understand how to manage this disease. Uncovering important links to co-morbidities such as mast cell activation syndrome. This important link is what has kept me alive and allowed me to thrive. My focus is QOL, early diagnosis, and preventing suffering through proper management. I tell my story to provide the necessary information to physicians and patients to work cohesively for improved care. Please consider this when treating the patient that provided you with this literature. Many thanks


Visit my other pages to learn about my story and recurrence with metastatic pheochromocytoma

Pheo para resource: pheo para alliance

Pheo para support: click here

Social channels: @ pheovsfabulous

A lesson in life and death

A lesson in life and death

“Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now” pheo vs fabulous

Being palliatively treated was one of my biggest fears, because it meant I was dying. Everyone was speaking to me about my death, it was the hot topic of my 20s. A lonely place to be in.

If something is terrifying to you, it’s because it’s foreign. By getting to know our fears better, it will become less so.

My curiosity made my fear of death less foreign. I challenged the purpose of this care, whether it was to die or to help my pain and suffering while LIVING.

If used properly, it can be such a beautiful way of removing suffering allowing you to LIVE fully. I am privileged to have learned this

I realized then by sharing my life and my story as a young seemingly vibrant ‘full of life’ woman… it would make others challenge the ideology that surrounds death also. When someone else is confronted with the same fate, they will see that there’s more to death than just dying. You have to have lived in order to die.

I share my life to bring light to these topics that we see as dark. I share as a reminder to take notice of all the beautiful moments and let it inspire you. The way I hopefully inspired you.

Like everything in life there are stages, palliative care is full of people who are very much alive. like me.

You may be wondering why I’m talking about this. Well because I have this unique lens to offer my point of view. By no means do we have to be happy about dying, but we CAN be at peace with it.

Happiness and sadness have to coexist, happiness is a comparative emotion. Once you feel some level of pain and sadness, you can feel happiness and gratitude. Otherwise you’d not know when happiness is, we wouldn’t feel joy. We would feel… neutral, we wouldn’t feel the euphoria of relief and the multitude of emotions.

Light can’t exist without dark, happiness can’t exist without sadness, just like life and death. We can’t live unless we die. We can’t die unless we’ve lived.

THAT is what I mean when I say I’m terminal and thriving, staying fabulous, or fighting pretty. I am able to live through pain because it’s what has led me to my happiness. Living in peace with my body, illness, even death, has given me this gift to live with the purpose we ALL deserve.

I never ever want anyone to pity me, I want you to feel so empowered and fearless to apply this point of view to all aspects of your life. I have chosen to share my unique lens to comfort, to change, to challenge, to connect.

Even if you feel you can’t relate to what I share, we all have life in common. Know that you don’t have to face death in order to start truly living. We all have fears, we all want happiness, we all live and die.

Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now.

I can’t control how others view the world, happiness, death, or even how you view me. I do however hope that you feel the love in my intention.

In the blink of an eye, my life has changed so many times, for better and for worse. What I’ve shared with you today is the hardest thing I’ve ever had to learn. Yet it’s my most profound lesson, and I’m honoured to be here alive to share it with you.

I hope a little piece of what I put into the world finds it’s way to you. A mindset tip, a makeup hack, a cute outfit for a hospital day, ways to cope, a tip to advocate, a goofy video, how to fight pretty, or a super profound shift in spiritual awareness.

Whatever it may be, these are all the pieces that make us who we are, I hope it leads you to your own ‘fabulous’.

“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous

Miranda AKA #pheovsfabulous

Follow me on social channels at @ pheovsfabulous

Gallium 68: prep & overview

Gallium 68: prep & overview

Congratulations! You’ve are having the ‘gold standard’ imaging with relation to pheochromocytomas and paragangliomas. The Gallium 68, I have had many of these scans, all the way from clinical trial phase to PRRT treatment.

I figured it’s time to lay it all out so that you know exactly what to expect. I will be focusing on a practical overview of your day. I don’t know about you but – I find it helpful and comforting to be prepared. As we all know, the best way to live with cancer is to focus on what we can control.


So first, what is a gallium 68 scan and why would one have this type of imaging in comparison to let’s say… a standard CT or MRI?

There are many different types of imaging, the reason for ordering one vs the other is typically based on WHY it’s being ordered. Is it diagnostic? Prognostic? Someone who’s seeking an initial diagnosis and someone who’s living with the disease and having follow up will have different requirements.

I’ll keep this as simple as possible and focus on the Gallium 68, it’s just in order to advocate for yourself – it’s good to know the basics behind this. Structural imaging like CT and MRI are used to view the structure of the tumors, whereas functional imaging (like PET and MIBG) are used to see metabolic activity.

I know I said I’d keep it simple, we’re getting there I promise – gallium is considered the gold standard BECAUSE it combines both structural and functional imaging! How? Well, they use a PET/CT scanning machine to combine both modalities. See, they inject you with a radioactive tracer which makes them able to measure the output of hormones that the pheo/paras are producing. Then at the end of the nuclear imaging, they do a traditional CT to see the structure as well. It’s the best of both worlds, IF you’re receptive.

Not all pheo/paras are Gallium receptive, that’s why there are different types of radioactive tracers. Some pheo/paras can be gallium receptive but MIBG negative, and vice versa. Then there are the lucky bunch like me, where the tumors light up on ALL the scans. Which offers more option for treatment. Still with me?

When in the diagnostic period before surgery, it’s important to do a combination of imaging to know which radioactive tracers you are receptive to and for them to gather as much data as they can. This can later be used for followup and for someone like me with recurrence, it can be used as treatment options.


Gallium 68: what to expect

You may be experiencing some scanxiety, or maybe just type A and wondering how to prepare. Is it more than 1 day? Do you have to go back more than once? Do you have to fast? You will be pleased to hear that out of all the nuclear medicine scans – this is one of the simplest.

There’s no special eating or drinking requirements (yay!) and you do not have to go more than 1 day. Everything is all done at once, unlike the MIBG which is multiple days. From start to finish, it’s approx 3 hours. The actual imaging portion is probably about 30-45mins depending on your tumor burden and if they need repeat imaging. The short answer is no, there’s no prep for this scan. But it’s not the same for everyone, so I’m going to give you the real deal. Let’s walk through the day:


Is there side effects?

This isn’t talked about a lot, because it’s said there are no side effects or reactions when it comes to the radioactive tracer. However, there are many patients who are sensitive to any type of chemicals without it being considered an allergy. You may not go into anaphylaxis like an iodine allergy, but if you have MCAS/MCAD, your body can have a reaction. It’s also possible you can have a mast cell response but not be diagnosed, like me for the last several years. Keep reading, I’ll show you how to be as prepared as you can.

Expect the Unexpected:

If you’re someone who typically has reactions to meds or procedures, this would be a good time to discuss with your doctors taking some benadryl in advance and afterward. If you’re on steroids to manage your AI, it may be a good time to do a small updose to prep for the stress your body may endure. If you have mast cell disease, you definitely want to prep as you would for any procedure. Do as you normally would, follow your protocols.

Practical advice for meds would be to have a portable medication case with some anti nausea meds, ativan, heartburn med, an anti-inflammatory, and any medications you may have to up-dose with *I had to take an anti nausea, heartburn, and anti-inflammatory afterward*

I linked above how to prep for an MIBG scan if you have a known iodine allergy, I think it’s important to know how to prepare for ANY procedure or imaging with rare disease. Which is why I created my own ‘medical resume‘ and linked the emergency protocols for mast cells, adrenal insufficiency, and showed how to create your own. You can find it here. Feel free to share it because it can truly be life saving in certain situations – think of it as your voice when you don’t have one

How to use a medical resume:

ALWAYS show your medical resume to anyone who’s in charge of your care. It doesn’t matter if you think “oh I won’t need it, I’m just here for a simple test”. From experience, it’s normally the simplest of tests or medications that have precipitated my worst reactions and emergencies.

I bring it up calmly and mention that it’s never happened to where I’ve needed major intervention. I then explain the importance of understanding the possibility of a crisis event. I highlight where I cannot be given epinephrine because of my pheos, and I show the necessary protocols.

examples of where I’ve used my medical resume recently:

Getting vaccinated, I show it to whoever is administering the medicine

Emergency: triage nurse, ER nurse, radiology, etc

All forms of imaging where I’m receiving an injection


Let’s walk through the day:

My appt was at 12:30pm, we arrived at the nuclear imaging dept and checked in. They will ask you to change into the lovely blue gown right away and await your name to be called.

Someone from the nuclear imaging dept will come to get you, where they will bring you into a room to do your weight, height, and insert your IV. It’s at this point they will do a questionnaire about your allergies, medications you take, previous surgeries and treatments, it’s pretty detailed right down to your mensuration cycle. This is the perfect opportunity to show off your medical resume! Since it has a detailed view of all their questions they will ask. Then you can casually segway into the protocols. Easy!

It’s time to go into the radioactive haven, this is a room with comfy reclining chairs where you will get your injection. They keep the radioactive materials here, this is where you will spend most of your time. They will wrap you like a burrito with freshly warmed blankies, it’s really quite wonderful. I bring ‘gallium’ my little scan mascot. As well as my ‘hospital bag’ which is filled with goodies I’d need like my kindle, hand cream, headphones, phone charger, gum, water, etc.

Once you’re settled and the radioactive tracer has arrived, (yes, it gets shipped in specifically for YOU) they prepare the injection, flush your IV, and now administer your medicine. I’m not saying this will happen to everyone with pheo/para, but… my tumors react IMMEDIATELY as the product is injected

I get a tight, hot, squeezing pain in the middle of my chest around my sternum. The reason I mention this is because the first times it happened, I thought I was dying and it made me incredibly anxious. Now that I know it will happen, I am prepared to deep breathe through it and always have a guided meditation ready to help calm my body.

It passes pretty quickly, I’d say within 3-4 minutes. They will bring you the barium liquid to drink with some water at this point. You will have to do this more than once. Barium is a contrast agent that will help them visualize the gastrointestinal tract. It’s yucky and can taste like orange or poison berries. I was pleasantly surprised to see that my hospital updated their formula! Not only did it taste good, but I only had to drink 2 small shooters of it. Hopefully this is the case for you!

Once the barium prep is done, you will be told to empty your bladder at this point and go get scanned! This is a funny detail but it surprised me the first time too. The bathroom in the radioactive unit has a big lead door, just like all the rooms. However they often have it disabled so you can’t shut the bathroom door. They have this portable rolling door that blocks anyone from seeing you, but it’s still a peculiar setup and made me uncomfortable the first time. The discomfort has passed and I still manage to do pre-scan bathroom dance parties just fine.

the roll away bathroom door

The Scan

Unfortunately I don’t have photos of the imaging room, because it’s quick to go in and lay down right away. They will lay you down on the narrow table, and then slide a foam support underneath your legs (make sure you ask if they don’t). They will secure your arms so that you’re not fighting to stay still and comfortable the whole time. There’s no special breathing exercises or loud noises with a gallium scan. It’s really quite relaxing and I sleep most of it. You just can’t move of course. I’d recommend closing your eyes right away, I keep them closed. However this type of imaging is very open, it’s not claustrophobic like an MRI. You could actually have someone in the room with you pre-covid days. They just have to leave the last 2 mins because of the CT scan they perform at the end.

And that’s it! They will remove your IV, and you can do your victory walk/dance. I was too tired to do a dance, so I managed a rocky walk out of the hospital. This is the end of the imaging portion but it’s not the end of your feeling like crap (lol) for lack of a better word.

Aftercare

When we think of after-care we think bubble baths and rest, and yes that may be some of it depending on how you feel. However it’s important to be prepared for your body’s mood swings, pain management, and a plan to recover over the next 2-3 days. These radioactive tracers they inject into us find their way to our tumors, so despite them saying we won’t react… our tumors are still filled with a substance that makes them more activated. That’s not accounting for our mast cell response either, so you may have to follow with the appropriate medication response as well. You may feel inflammation in your lymph nodes, a tightness in your neck, tension and muscle spasms may increase, and pain in the abdomen. This is how my body responds anyway, so it’s more important than ever to flush it out by hydrating hydrating hydrating some more. You may want to do some journaling, netflix binging, or anything that allows you to get that sh*t out. I’m personally writing this blog to do just that – and to help all my zebra friends, but you know whatevs.

I like to finish my day with some comfort food, but I’ll warn you – if you eat something with tyramine or histamine, don’t say I didn’t warn you. It’s not the time in my opinion to make matters worse, so if you can eat something comforting but not tumor aggravating – I’d highly recommend lol.

Don’t be like me and hulk out by throwing your quesadilla, swear crying, and then have to switch pants with your husband to get relief from the belly pain. I have now prepared you for most unexpected events. I wish you an uneventful and pain free scan!

You totally got this my zebra friend, you are prepared now and just have one job: stay fabulous!


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This information is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.

Resources to checkout: http://www.pheopara.org