Diagnosed with a Rare Hereditary Kidney Cancer

This is a guest post by Nicole Albor, 34. Nicole’s husband Todd Allebach, 38, was diagnosed with a rare hereditary type of kidney cancer. They live with their two children near Philadelphia, Pennsylvania.

Kidney cancer wasn’t something we ever thought about, until we had no other choice. My name is Nicole Albor, and my husband, Todd Allebach, was diagnosed with kidney cancer in the last few months of 2024 when Todd was only 37 years old.

It started with lower back pain in the summer, and after several visits to quite a few different doctors, they all came to the same conclusion: a herniated disc. Well, that never sat quite right with me, and when Todd started to experience random fevers, I had him go to the ER. On his first visit at the ER, the doctor joked about how this was definitely not cancer, but a herniated disc and a fever caused by pneumonia. Two weeks later, the fever came back and I sent him back to the emergency room, demanding he not come home until he gets a CT on his back. A few hours later, Todd calls me. I swear the earth stood still at that moment. I picked up the phone and he said “I have something called lytic lesions on my spine, it doesn’t sound good. The nurse seemed really upset when she told me”.

We are a young family, both Todd and I in our 30’s with two small children – Lilly who was 5 and just started kindergarten, and CJ, who was 3. At that moment in time, we had no idea what the primary cancer was, all we knew was that it had metastasized to his spine. Todd spent 5 days at our local hospital, we spoke to an unlimited amount of doctors and oncologists. We felt like we were on a roller coaster with no end in sight. They told us it was probably a form of blood cancer, but then all of the tests came back negative. He had scan after scan, but we were told they couldn’t find a tumor on any major organ. We were left confused and terrified. Fast forward, a friend had connected us with Jefferson University in Philadelphia, where, eventually after looking closely at the scans he had in the hospital, they found a very small tumor located on his left kidney.

Even after biopsies they couldn’t definitively say what subtype of RCC Todd had – the way the biopsy tissues were presented were not typical with most kidney cancers. So, the confusion continued. We ended up getting involved with a genetic counselor who did testing on Todd, and after a few weeks we finally had answers. His testing showed a genetic mutation with the FH gene, fumarate hydratase enzyme. Todd was then diagnosed with HLRCC – Hereditary Leiomyomatosis and Renal Cell Carcinoma.

Todd doesn’t know a lot about his family’s medical history, but we do know that this is genetic so it was passed on from one of his parents. HLRCC is rare, with about 300 family cases worldwide. Developing kidney cancer from HLRCC is also rare with a 10-16% chance, with most cases developing cancer before the age of 40. One day, we were a typical family, planning family vacations, signing our children up for recreational sports, envisioning a future. Those plans and dreams never included a cancer diagnosis, especially when we are still so young with so much to look forward to.

After Todd’s diagnosis, everything changed. His bone pain was so severe at one point, he couldn’t drive, let alone walk comfortably. Our normal family dynamic shifted greatly, putting all the care that went into our children solely on my shoulders, along with household duties that we once shared as a partnership. If I wasn’t taking care of our children, shuffling them to activities, playdates, or school, I was taking care of Todd. I was educating myself in every way possible about this disease that seemingly hit us in the gut and rocked our world. Instead of giving our children a childhood filled with innocence, we had to learn how to normalize cancer for them, age appropriately. In their very short lives, we watched them learn that life isn’t fair, and cancer doesn’t care how old you are, or that you have children.

Once kidney cancer spreads, remission is not possible. The disease will eventually become terminal, and statistically that happens a lot quicker than you’d ever want. Kidney cancer research is the only way to ensure that people like my husband, live long enough to watch their children grow. FDA approved treatments are limited, and it takes years of research and clinical trials to get these medications on the market for patients, and with the rarity of HLRCC, those treatments are even more limited.

I have dedicated a huge chunk of my new life advocating for kidney cancer research funding, joining advocacy teams and speaking with our local representatives about the importance of research funding, not just for Todd or my family, but all of the families that are impacted by this disease.

If our story aligns with you, please know you are not alone. It is the most isolating experience and you feel like you are the only one who knows how you feel, but I promise, I see you.