{"id":292590,"date":"2026-09-22T14:46:32","date_gmt":"2026-09-22T18:46:32","guid":{"rendered":"https:\/\/rarediseases.org\/?p=292590"},"modified":"2026-09-23T09:37:18","modified_gmt":"2026-09-23T13:37:18","slug":"choosing-hope-without-certainty-sarahs-rare-cancer-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/choosing-hope-without-certainty-sarahs-rare-cancer-story\/","title":{"rendered":"Choosing Hope Without Certainty: Sarah’s Rare Cancer Story"},"content":{"rendered":"

NORD is proud to share this rare cancer patient story in recognition of Rare Cancer Day. Learn more about Rare Cancer Day.<\/a><\/p>\n

By Sarah S. from Maryland<\/em><\/p>\n

\"RareThe Surgery That Changed Everything<\/h4>\n

In January 2023, I believed I was finally getting my life back. For years, my body had been in open rebellion against me. I lived with extreme abdominal pain, stabbing cramps that dropped me to the floor, fainting spells, overwhelming fatigue, and an inability to eat. I lost forty pounds in just a few months without trying. My periods were excruciating. I missed work, missed time with my family, and made more emergency room visits than I can count. What hurt almost as much as the pain was not being believed.<\/strong><\/p>\n

It wasn\u2019t until I finally saw a female doctor \u2014 someone who listened \u2014 that I felt hope. After careful evaluation, I was diagnosed with adenomyosis and endometriosis. I was relieved, for the first time, I felt like someone was taking my pain seriously.<\/p>\n

My hysterectomy was scheduled for January 28, 2023. I went into surgery thinking this would be the end of a long, painful chapter. I had no idea it would open an entirely new one.<\/strong><\/p>\n

During the operation, my surgeon noticed that my appendix didn\u2019t look right. While I was still under anesthesia, she called my husband, Andy, and asked if she could remove it. He agreed without hesitation. That decision saved my life.<\/strong><\/p>\n

A Diagnosis That Arrived Quietly<\/h4>\n

On February 3, I received a MyChart message that changed everything. I was diagnosed with neuroendocrine cancer of the appendix<\/a>.<\/strong> Just a message on a screen. No warning. No preparation.<\/p>\n

There had been no scans that caught it. No blood tests that raised alarms. No pathology reports before surgery suggesting cancer was even a possibility. The only reason my cancer was discovered at all was because I was cut open and a skilled surgeon saw something that didn\u2019t belong.<\/p>\n

Five days later \u2014 on February 8, the day before my 38th birthday \u2014 Andy and I met with Dr. Armando Sardi, an expert in rare abdominal cancers. He told us I had stage 4 disease and that there was no cure.<\/strong><\/p>\n

I remember feeling stunned, like the air had been pulled from the room. I had gone from planning recovery to confronting mortality in less than a week.<\/p>\n

Dr. Sardi explained a procedure called CRS\/HIPEC, an intensive surgery that could remove visible cancer and treat the abdomen directly. It wasn\u2019t a cure, but it was a chance to extend my life.<\/p>\n

When I worried aloud about canceling our upcoming family trip, Dr. Sardi reached across the desk, took my hands, and looked me straight in the eyes. \u201cGo on your trip with your beautiful family,\u201d he said. \u201cYou\u2019re not dying tomorrow, my friend.\u201d That moment grounded me. It reminded me that I was still living.<\/strong><\/p>\n

\"Sarah<\/p>\n

Living with What Can\u2019t Be Seen<\/h4>\n

We scheduled surgery for April 20, 2023, after we returned home. During that operation, Dr. Sardi removed all visible disease. He took everything he could see with the naked eye. I woke up exhausted, sore, and deeply grateful.<\/p>\n

Earlier, pathology never showed visible cancer, though cancer cells were present at a microscopic level \u2014 too small to be seen by scans or blood tests. This is where my fear lives.<\/strong><\/p>\n

Back in 2013, a surgeon once told my husband and me that I must be \u201cone tough cookie.\u201d At the time, he believed I had likely suffered from appendicitis and fought through it. He left my appendix behind. No one knew cancer was there. No one suspected it.<\/p>\n

So now, when I feel sick \u2014 and I do, often \u2014 I live with a complicated reality. I have episodes fifteen to twenty times a day that leave me incredibly ill. And yet, there are no clear signs of recurrence. I live in the space between \u201cnothing shows\u201d and \u201cnothing showed last time either.\u201d<\/p>\n

That uncertainty is heavy. But it has also taught me something unexpected.<\/p>\n

Redefining Strength<\/h4>\n

For a long time, I believed strength meant pushing through. Ignoring pain. Proving I could handle it. Cancer taught me that real strength looks different.<\/strong><\/p>\n

Strength is listening to your body when something feels wrong. Strength is advocating for yourself when no one else will. Strength is allowing fear to exist without letting it steal today from you.<\/p>\n

Because despite everything, I am still here.<\/p>\n

Cancer took many things from me. It took my career as a teacher \u2014 work I spent my life building. I joined the Air Force in 2004 to earn the GI Bill, met Andy along the way, and eventually earned my master\u2019s degree in 2016. I spent eight years teaching history, civics, geography, and language to children. Letting go of that identity was devastating. But cancer did not take my heart for service.<\/p>\n

I still show up. I still share what I\u2019ve learned. I still support others walking this road \u2014 especially those who feel dismissed, unseen, or afraid of what can\u2019t be measured. I am an active volunteer with the Abdominal Cancers Alliance<\/a> where I help to raise awareness about rare and advanced cancers.<\/p>\n

\"SarahChoosing Hope Without Certainty<\/h4>\n

I don\u2019t live in denial. I live in awareness. I know my cancer may never show itself clearly. I know fear may always live nearby. But I also know this: I am not powerless.<\/p>\n

I choose to live fully in the moments I have. I choose connection over isolation. Presence over panic. Advocacy over silence.<\/p>\n

To anyone newly diagnosed, or living with scan anxiety, or carrying fear because your cancer doesn\u2019t follow the rules \u2014 I want you to know this:<\/p>\n

You are not weak for being afraid.<\/p>\n

You are not failing because you need reassurance.<\/p>\n

And you are not alone.<\/strong><\/p>\n

Hope doesn\u2019t require certainty. Sometimes, hope is simply choosing to keep going, even when the path isn\u2019t clear.<\/p>\n

My story began with pain that was ignored and a cancer that was invisible. It continues with gratitude, resilience, and a deep belief in the power of being seen and believed.<\/p>\n

I am still here. And that matters.<\/p>\n

#RareCancerDay<\/strong><\/p>\n

Take Action for Rare Cancers<\/h4>\n

Tell your Senators to support the Asal Sayas National Strategy on Young Adult Cancers Act<\/a>.<\/strong><\/p>\n

Submit your own rare cancer story to NORD<\/a> and select “Rare Cancer Day” under Campaign Interest.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

NORD is proud to share this rare cancer patient story in recognition of Rare Cancer Day. Learn more about Rare Cancer Day. By Sarah S. from Maryland The Surgery That … <\/p>\n

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