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 Doing our own research, finding support groups, knowing what’s outdated information.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!
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! 💖
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.
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