Has anyone attempted "live tumor storage" at StoreMyTumor?

Posted by markymarkfl @markymarkfl, Jul 26, 2023

I'm wondering if anyone has dealt with this firm:
https://storemytumor.com/
Their claim from that site is:
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Hospitals DO NOT preserve cancer cells alive and this step requires pre-planning.

Many patients ask the surgeon/Oncologist/hospital if the hospital will store their tumor, and the answer is typically a misleading yes. This is because pathology in hospitals preserves a small part in paraffin (dead), but not alive. Hospitals do NOT preserve cancer cells alive.
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and
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You can instruct us to send parts of the tumor to a destination of your choice, allowing you to maximize potential therapeutic and diagnostic options. We will help you research some of the most common applications and prioritize use of the tissue.
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They were not accepting new tissue last year when I had my pancreas surgery, and was not able to engage, but might have new tissue to spare after a biopsy later this year.

What kind of real-world, actionable treatment options can come from this? (Hoping to find treatment providers who work with them.)

Thanks in advance!

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Lori, Volunteer Mentor | @loribmt | Jul 27, 2023

Hello, @markymarkfl, This is an interesting concept, storing tumors. For a patient, it might be used in development of a targeted biologic treatment and immunotherapy. Samples could be sent to various labs to determine the best type of chemotherapy or other treatment. etc..
Being able to analyze multiple similar tumors from many patients, even globally, could have broad applications for future treatment development by finding commonalities between cases. If enough information was collected from each tumor, medical researchers may be able to find causes and cures for specific DNA markers/mutations. Amazing developments all the time for cancer patients!
Wishing you all the best with your upcoming biopsy! When did you have your surgery?

markymarkfl | @markymarkfl | Jul 27, 2023

Mine was in June of 2022. Only small amounts stored, but enough to also build the Signatera test. I see the "potential" of this live tumor storage, but when I was reaching out to surgeons and oncologists before my surgery, none of them could name a lab they would work with or what they would do with the tissue in terms of exploring/developing any kind of treatment. My scheduled surgeon had never worked with them, wasn't familiar with their protocol (of providing the container and shipping) and didn't seem interested in trying.

I did find several labs last year that were happy to store the tissue (not in a "live" state), but for researchers, not for the patient. They mostly resell them to other research facilities.

StoreMyTumor.com might have a more robust story and network now than they did last year, but I have not had a chance to follow up with them yet. I'm hoping other patients may already have experience with them or similar providers of that service.

Still hopeful!