“I wanted to have surgery because it allowed me to grab tissue, and that tissue was important to not only debulk my tumor, but also give me that precious material that I could use for diagnostics.” – Brian McCloskey
“When I woke up later that afternoon, I thought I had accomplished something that was going to be potentially very impactful in terms of understanding my cancer.” – Brian McCloskey
“I went from a state of having confidence and hope to confusion, anger, and despair.” – Brian McCloskey
Meeting Summary
Advanced cancer patients need as much information as possible about their disease to guide their treatment decisions. Next generation sequencing can identify distinctive biomarkers that can be used to target treatment. Sequencing requires preserved tissue or blood as input. Functional drug testing (trying out potential drugs to see whether they kill the cancer cells) can be very helpful in selecting among a list of treatment options and can occasionally uncover unexpected drug options. Functional testing requires fresh (not preserved) tumor tissue or organoids (a tissue culture grown from the tumor cells). Fresh tissue can come from a biopsy of the tumor or as a byproduct of surgical removal. It needs to get from the patient to the lab in 24 hours.
There are several problems with using tissue for testing. It’s often hard to get enough tumor tissue. Some tumor tissue is embedded in hard to reach places, such as in bones or next to sensitive organs or nerves. Most patients have some preserved tissue from the biopsy that was taken at their initial diagnosis, but not a lot. Fresh tissue requires special handling. Hospitals are not used to sending fresh tissue outside their institution.
Brian McCloskey’s Story – Getting Tumor Tissue for Testing
Advanced prostate cancer patient Brian McCloskey faced difficult testing and treatment decisions. His PSA (prostate specific antigen – the biomarker for prostate cancer progression) was rising and his metastatic cancer lesions were growing. He needed to do something since his therapy was failing. But which of his two dozen treatment options he had identified should he choose? He wanted to get more tests to guide his decision, but tests required tissue, especially fresh tissue. Surgery seemed like a win-win: it could debulk his cancer lesions AND yield tissue for testing his drug options. But a molecular tumor board indicated that surgery was too risky. They recommended radiation. Undeterred, Brian asked to speak with the head surgeon, who agreed with him that surgery not only presented fewer risks than radiation, but would also yield precious tissue for diagnostics to better understand the unique biology of his cancer.
With four weeks to go before his surgery, Brian then had to decide where to send his tissue to drive advanced diagnostics. From his research at the Prostate Cancer Lab, Brian had identified four places he could send his tissue for testing. He selected one that would provide a gold mine of diagnostic results: whole exome sequencing, RNA sequencing, spatial analysis, and an organoid for drug testing. He discussed his plans for his tissue with his surgical team and brought a kit on the day of his surgery to mail the tissue overnight to the diagnostics company.
After the surgery, Brian was lying in his hospital bed feeling tired and in pain, but also feeling the accomplishment of pushing the envelope of advanced testing and how it would help him decide on his next treatment. Brian sent an email to the diagnostics company for a status update… and found out that they had not received his tissue.
What caused the breakdown? What did we learn?
The hospital didn’t explain to Brian where or why the breakdown occurred. We are left to speculate. Brian was working within a very complex healthcare system that was bigger than him, bigger than any one person, and bigger than any single institution. Many factors potentially contributed to the breakdown:
- Lack of physician buy-in to the potential value of insights from advanced diagnostics, e.g., spatial analysis of the tumor microenvironment for predicting immunotherapy response.
- No one to help develop a tissue strategy and manage the tissue.
- Miscommunication between his medical team and pathology.
- The institution did not want to or know how to work “outside of the box”. Lack of experience by the institution’s pathology department in sending out fresh tissue.
What could Brian have done differently knowing what we know today, or what should patients who have a chance to get fresh tissue for testing do in the future?
- Select institutions with experience in fresh tissue handling and other “out of the box” tests and treatments.
- Send your tissue to multiple testing labs to increase the odds that one will succeed.
- Assemble a team tasked with managing the tissue, for example including your surgeon, pathology, your medical oncologist, and the outside lab.
- Encourage the lab(s) to pull the tissue from pathology – have someone walk the tissue from surgery to the lab.
Where do we go from here? What’s the “call to action”?
Every advanced cancer patient should know what tissue they have and the details of its preservation:
- Type of preservation (FFPE, fresh frozen)
- Amount of tissue by preservation type (blocks, slides, amount available for testing)
- Tissue sample quality
- Date specimen collected and preserved
- Pathology or someone else at the provider organization should be held accountable for tissue management.
We are discussing convening a meeting of all of the stakeholders in the fresh tissue testing workflow to brainstorm process improvement opportunities.
You can see an example of the end-to-end process of personalized medicine and associated breakdowns here.
If you would like to contribute or have other suggestions, please let us know.
The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Prostate Cancer Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.
