StoreMyTumor.com offers patients a remarkable service which EVERYONE should be aware of. Their motto is Plan Ahead, Save My Life. You can contact them at StoreMyTumor.com
Fact: When diagnosed, most patients (and oncologists too) are not thinking about potential treatment options beyond the first line of therapy and standard care.
Fact: Up to 50% of patients DO NOT respond to standard care, and are forced to explore more personalized treatment options.
What Does This Mean?
It means you need access to your tumor tissue. You need to make arrangements for this at the time of your original biopsy, or undergo further (expensive and perhaps not insured) surgery.
When first line treatments fail, there are many tools to help personalize cancer treatments. These include genetic sequencing, molecular profiling, chemo, drug sensitivity testing, biomarker testing, targeted cancer vaccines, T-cell therapy, tumorgrafts, clinical trials and much more. (Oncolink, operated by the University of Pennsylvania even provides a free service which will match you with potential clinical trials for your specific type of cancer.)
But each of these treatments requires samples of tumor tissue that must be preserved at the time of surgery and in the CORRECT format. Patients need to make arrangements to preserve their tumors because hospitals do NOT provide such services.
Hospitals routinely store a small part of the tumor in Paraffin, but Paraffin stored tumor sections cannot be used for numerous purposes such as chemo, drug sensitivity testing, targeted cancer vaccines, T-cell therapy, or tumor grafts. Ideally, the tumor should be divided into parts and each preserved in a specific format.
Additionally, tissue preserved by the hospital belongs to the hospital where the surgery took place and NOT to the patient. Patients are often denied access to their own tumors by the hospitals due to scarcity of tissue to share, conflicting interest, and lack of resources to coordinate such requests.
StoreMyTumor helps patients preserve their tumors in a number of formats, and for private use. Contact them directly for more information.