I have an international following so many people outside of USA may not know much about Joaquin Castro. He is an American lawyer and Democratic politician who has represented Texas’s 20th congressional district in the United States House of Representatives since 2013. The district includes just over half of his native San Antonio.
He was diagnosed with a Small Intestine NET in July 2022 after an incidental finding while he was working in Spain. His car hit a boar on a highway the night before he was due to fly home to the US. He was taken to hospital for a check-up. The hospital spotted some abnormalities in his scan and advised him to visit his doctor on return to US.
One year later, he has told his story via a X (twitter) thread. As many of you don’t have a twitter account, I’ve cut and pasted this great story below. It’s in parts but easy to follow (on X (twitter) each post has limited character space). I followed him on X (formerly twitter) and he graciously followed me back.
The Congressman has become a great NET advocate!
We’ve had some bad luck with public figures and awareness. They mostly have either not engaged; or they did but citing the wrong cancer type. This is why I’m so thankful to US Congressman Joaquin Castro for using his very large platform to spread awareness of Neuroendocrine Cancer. But he also deserves credit for so willingly telling his own story. Personal stories are the most powerful messages we have, more powerful when heard from people in the public eye. Thanks also to NET Research Foundation for producing the video in collaboration with Joaquin.
That boar may have saved my life.
This X (formerly twitter) story has resulted in a huge amount of awareness, and it also made TV stations of course. This story on twitter may resonate with many of you. As the vast majority of you are not on X (formerly twitter), I’ll bring it to you here.
Joaquin Castro – his X (formerly twitter) story
@JoaquinCastrotx One year ago today I found out I had cancer. I was chairing a conference in Bilbao, Spain and was set to fly home early the next morning. Traveling back to Bilbao on a dark highway, the driver of our car hit a boar going 70mph. That boar may have .
@JoaquinCastrotx
· After a few minutes an ambulance came and asked if I wanted to go to the hospital. I almost said no but my hand had started to swell and get red. I figured that, on the chance I’d broken a small bone in my hand, I should probably get it checked out. A quick X-ray, I thought. 2/ @JoaquinCastrotx· But as soon I arrived they treated me like a full blown trauma patient. Neck brace, IV, MRI with contrast — all of it. The doctor said things seemed normal and was just about ready to discharge me. They moved me to another room to take out the IV. Then the doctor came back. 3/ @JoaquinCastrotx· She took a second to close the curtain surrounding my bed, making sure it was as closed as it could be. She had been speaking to the nurses in Spanish but shifted gears, struggling to let me know in English. I’ve never wished I could speak better Spanish than at that moment. 4/ @JoaquinCastrotx· Between two languages I heard — “My radiologist called me. He said he believes he sees two neuroendocrine tumors that have spread from your small intestine to your liver. I hate to be the bearer of bad news.” I asked some questions and then she left. I never got a bill. 5/ Joaquin Castro @JoaquinCastrotx· I missed my flight the next morning and instead got home on the Fourth of July. Before this I’d disliked blood, needles, doctor’s offices and had never been hospitalized for anything. Over six weeks I’d have enough blood draws, CT scans, PET scans, MRIs, to last a lifetime. 6/ Joaquin Castro @JoaquinCastrotx· As a legislator I’ve always been supportive of fighting cancer. But the idea of me getting cancer hadn’t crossed my mind much. When you grow up Hispanic in Texas you’re mostly worried about diabetes. It turns out that my grandfather, whom I never knew, died of cancer. 7/ Joaquin Castro @JoaquinCastrotx· I could hardly pronounce “neuroendocrine” tumor, a rare form of cancer, when I got to MD Anderson in mid-July 2022. But I knew that any tumor spreading across your body isn’t good. I hadn’t told many people about my diagnosis even as so many things raced through my mind. 8/ Author’s note: Old information – I have Mayo NET doctors on record saying “Repeat after me, NETs are not rare” Plus the latest figures are now around 250,000.
Joaquin Castro
@JoaquinCastrotx· My younger daughter turned two months old on the day of my accident. I wondered how much longer my kids would have their dad around. Would I see them graduate from high school, get married, have kids of their own? I imagined them years
Joaquin Castro @JoaquinCastrotx· MD Anderson is part of the Texas Medical Center in Houston, the largest medical complex in the world. Neuroendocrine tumors #NETs are graded from 1 to 4 depending upon how quickly their cells divide and grow. In other words, how aggressive they are. 1 is slow, 4 is fast. 10/ Joaquin Castro @JoaquinCastrotx· After a liver biopsy, PET scan and more tests I got good and bad news. The #NETs were Grade 1, growing slowly and relatively small. But they had spread from my small intestine to my liver, a bunch of lymph nodes and near my lung. I had likely had them for several years. 11/Joaquin Castro @JoaquinCastrotx· My oncologist put me on a monthly Lanreotide injection, a drug meant to slow, and hopefully freeze the growth of #NETs. It does not, however, shrink them. Lanreotide is a specialty drug. List price per injection — $24K. The insurance actually pays $6.5K every time I take it. 12/ Joaquin Castro @JoaquinCastrotx· The insurance company negotiates down with the provider from $24K to $6.5K, covers that, and I pay $60 out of pocket monthly. But millions of Americans have no insurance at all. Millions more don’t have enough. They can’t afford the treatment they need to fight off cancer! 13/ Joaquin Castro @JoaquinCastrotx· When I was young I spent countless hours at Robert B. Green, the public hospital, waiting with my grandmother for her diabetes treatments. Growing up, and later as an adult, there were times I had no health insurance. Today I pay $1350 a month for my family’s insurance. 14/ Joaquin Castro @JoaquinCastrotx· Even so, over the past year I’ve probably spent $8K out of pocket. And that’s with great insurance. And it’s only year one. I keep thinking — what if this had happened when I didn’t have insurance? Or before the ACA – with lifetime caps and pre-existing condition exemptions? 15/ Joaquin Castro @JoaquinCastrotx· No one should suffer with cancer, diabetes, MS, schizophrenia or any other mental or physical illness just because they can’t afford care. America needs universal healthcare. We’re a rich country. To watch our people go bankrupt, suffer or die like this is unconscionable. 16/ Joaquin Castro @JoaquinCastrotx· In late February, I had major surgery to remove some of the cancer. The surgeons took pieces of my colon and small intestine, 44 lymph nodes, appendix and gall bladder. But they opted against liver surgery because there are tumors on both sides, making surgery more risky. #17Joaquin Castro @JoaquinCastrotx· So, unless something changes, I will have cancer for the rest of my life. I will never get to ring that bell. But, unless something changes, cancer won’t take my life. Last month I went back for scans. The remaining tumors haven’t grown. The Lanreotide is doing its job. 18/ @JoaquinCastrotx·I’m hopeful for
Cancer Moonshot (don’t forget neuroendocrine cancer) and all of the promising research that’s taking place. Thank you to everyone who’s been so kind to me over the past year – family, friends, strangers. Here’s to many more. With much love, Joaquin. END
Joaquin is on Lanreotide and he speaks from first-hand experience about the issues with the cost of Lanreotide in US and insurance. This will resonate with many of you. If you cannot see the video, try this link
Through my cancer diagnosis, I’ve seen the costs of the American healthcare system firsthand – and I’m lucky enough to have insurance. No American should have to forgo the treatment they need to fight cancer because of the cost. pic.twitter.com/u3xNFEAvmi
Through my cancer diagnosis, I’ve seen the costs of the American healthcare system first-hand – and I’m lucky enough to have insurance. No American should have to forgo the treatment they need to fight cancer because of the cost. pic.twitter.com/u3xNFEAvmi
I’m sure, like me, you all wish Representative Joaquin Castro the very best for an ongoing recovery and the best of health with his family.
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By Ronny AllanOn 2 Comments
By Ronny Allan
Ronny Allan is a 3 x award-winning accredited patient leader advocating internationally for Neuroendocrine Cancer and all other cancer patients generally. Check out his Social Media accounts including Facebook, BlueSky, WhatsApp, Instagram and and X.
2 thoughts on “Joaquin Castro – US Congressman and NET patient”
Thank you so much for this post. The diabetes connection in the family makes me wonder if NETS is more widespread than people think.
Diabetes is so common in the general population that you’re going to see people with multiple illnesses all the time. It doesn’t always mean a connection.
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Thank you so much for this post. The diabetes connection in the family makes me wonder if NETS is more widespread than people think.
“Correlation isn’t always causation.”
Diabetes is so common in the general population that you’re going to see people with multiple illnesses all the time. It doesn’t always mean a connection.
There can be pancreatic NETs, but he has a small intestine NET. https://ronnyallan.net/2018/09/16/diabetes-the-net-effect/