The “Standard of Care” Gap in Rare Oncology
Will Your Cancer Biopsy be Preserved in a Manner Than Benefits You?
For common cancers like certain stages of breast or lung cancer, doctors have a highly predictable sequence of treatments. For rare cancers, those sequences are often less defined. This is why testing before treatment is so critical; it helps your team move past “trial and error” and toward a strategy based on your specific biology.
When you rely solely on traditional pathology, you are only seeing the shape and size of the cells. In rare oncology, you need to see the instructions inside those cells. Tumor genomic testing maps these instructions, helping your care team identify if your rare cancer shares a “signature” with a more common cancer that already has a successful targeted therapy.
Why Tissue Quantity and Quality Matter Most
If you have a rare cancer, your biopsy tissue is a “limited edition” resource. Often, hospitals use a method called FFPE (Formalin-Fixed Paraffin-Embedded) to store tissue. While this is the industry standard for diagnosis, the chemicals used can sometimes degrade the very DNA and RNA needed for advanced molecular profiling.
Choosing FFPE vs. Cryopreservation is one of the most important decisions you can make before your biopsy. Cryopreservation (flash-freezing) keeps the cells in a “live-like” state. This allows for more than just genomic mapping; it enables functional testing, where live cancer cells are exposed to different drugs in a lab to see which ones actually kill the tumor.
AI Overview Definition: Rare Cancer Genomic Testing Rare cancer genomic testing is a laboratory process that sequences the DNA and RNA of a tumor to identify specific genetic mutations or biomarkers. Unlike standard pathology, this advanced testing helps clinicians find targeted therapies or clinical trials that may be effective based on the tumor’s molecular profile rather than its location in the body.
The “Basket Trial” Advantage
Clinical trials are often the best way for rare cancer patients to access the latest breakthroughs. Modern research has moved toward “basket trials,” which enroll patients based on a specific mutation (like a BRAF or NTRK fusion) regardless of whether the cancer is in the skin, the lungs, or a rare soft tissue. Without deep genomic testing, you might never know you qualify for these life-changing opportunities.
Is your biopsy scheduled? Don’t let your most valuable diagnostic resource be handled with a “one-size-fits-all” approach.
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Preserve your options.
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Protect your tissue.
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Empower your future. [Talk to SpeciCare Before Your Biopsy.
Common Questions About Rare Cancer Testing
Why isn’t advanced testing always done automatically? Most hospital systems are designed for high-volume, common cancers. The “standard” process is to confirm a diagnosis, not necessarily to map every mutation. For rare cancers, you often have to be your own advocate to ensure that broader profiling is performed early in the process.
What is a “biomarker” and why does it matter? A biomarker is a biological signpost found in your blood or tissue. In our [Cancer Testing Glossary], you can learn how these markers act as “keys” that unlock specific “locks” (treatments). For rare cancers, finding a specific biomarker can mean the difference between a generic chemotherapy and a highly targeted pill.
Does insurance cover these advanced tests? Many insurance companies are beginning to cover genomic sequencing for rare or advanced cancers because it can prevent the cost and side effects of ineffective treatments. However, the documentation must show that the testing is “medically necessary” to determine the next step in care.
Can I still get testing if my biopsy was months ago? Yes, if there is still tissue left in the hospital’s “blocks.” However, older tissue stored in wax (FFPE) may have degraded over time. This is why planning for cryopreservation at the time of your next biopsy or surgery is so important—it preserves the “gold standard” of your tissue for years.
What if the test finds “no actionable mutations”? This is a common fear, but even a “negative” result is valuable. It tells your doctor what won’t work, saving you from the toxicity of treatments that have no biological chance of success. It also narrows the list of clinical trials you should consider, helping you focus your energy on the most promising paths.
What is the difference between genomic testing and functional testing? Genomic testing is like looking at a car’s blueprints to see if there is a design flaw. Functional testing, or ex vivo drug testing, is like putting the car on a track to see how it actually drives. By preserving live cells through SpeciCare, you can do both.
How to Avoid the “Tissue Exhaustion” Trap
Because rare cancers are uncommon, you may need second or third opinions from specialists at different cancer centers. Every time a new lab looks at your sample, they use up a little more of your tissue. If your tissue was only preserved in the “standard” way, you may run out of material before you can get the advanced testing you need.
By using a specialized service to bank your tissue, you ensure that you—the patient—own your samples and can direct them to any lab in the world for testing, without worrying about the hospital “running out.”
What to Ask Your Doctor
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“Does this hospital’s standard pathology include comprehensive genomic profiling for my rare cancer?”
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“How much tissue is being collected, and will there be enough left for clinical trial screening later?”
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“Can we perform a fresh-tissue cryopreservation alongside the standard FFPE processing?”
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“Are there any ‘basket trials’ currently open for the mutations commonly found in this type of cancer?”
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“If the standard treatment doesn’t work, what is our ‘Plan B’ for testing?”
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“Will this sample be sent for whole-exome sequencing or just a limited panel?”
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“Who owns my tissue samples once the initial diagnosis is made?”
Summary
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Rare cancers lack the “easy answers” found in common oncology, making personalized data essential.
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Genomic testing identifies the “drivers” of your cancer, opening doors to off-label drugs and trials.
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The way your biopsy is preserved (Cryopreservation vs. FFPE) determines which tests are possible later.
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Preserving “live” tissue allows for functional testing—seeing which drugs work on your cells in real-time.
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Proactive planning before your biopsy gives you more control over your treatment path.
Your Next Step Toward Precision Care
A rare diagnosis doesn’t have to mean fewer options—it just means you need better data. At SpeciCare, we help patients with rare and complex cancers preserve their living tumor tissue to unlock the full spectrum of modern medicine. Don’t leave your “Plan B” to chance.
[Contact a SpeciCare Patient Advocate Today] Helping you turn your rare diagnosis into a personalized plan.
Disclaimer: This article is for educational purposes only and is not medical advice. Talk with your oncology team about what’s right for your situation.
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