9. Own Your Tumor Tissue

Your tumor tissue belongs to YOU and is essential to determining the best treatment. Ask your neurosurgeon to save the maximum amount of both tumor and normal tissue. Insist that it be used only with your consent and for your health.

Own your tumor tissue. It is essential to your health and treatment.You can own your tumor tissue if you negotiate the terms with your doctor, hospital, and tissue banking system in advance. If you do not make a clear contract before your tissue is biopsied or resected, your ownership of it will be compromised, and it will be at the medical center’s discretion whether you will be able to access it. Recent lawsuits between patients and hospitals over who owns tissue have been ruled in favor of the hospital.[1] Read the informed consent forms prior to biopsy and surgery extremely carefully and have a lawyer look at it if possible. If there is anything that doesn’t sound right to you, do not hesitate to bring it up with your doctor.

If you can afford it, one option for storing your tumor tissue is using a private company such as Health Bank who can send you a kit and help you deal with your medical team and medical center. “The initial processing and freezing of your tumor tissue, and first year of frozen storage, typically costs $2,000 plus shipping.  Subsequent years of storage typically cost $195 per year.”[2]

If you choose to entrust your tissue to your medical center, make sure you are at a hospital that follows best practices of tissue banking. This means that the neurosurgeon makes an effort to coherently remove as much tumor tissue as possible and that tissue is then moved as quickly as possible into a -80 degree freezer or liquid nitrogen. The freezer system should be closely monitored and emergency procedures should be planned in case the freezers fail.

Knowing your tumor pathology is vital in order to make the best treatment decisions. Testing your tissue can determine what type of tumor you have, what grade it is, and what genetic abnormalities may be present. This knowledge can help you personalize a treatment plan, such as what type of chemotherapy is likely to work best and what clinical trials you are eligible for. As science rapidly progresses, in the near future there could be more treatments that require tumor tissue testing that we don’t even know about yet.

Your doctor may ask you to donate your tissue for research. While this is extremely helpful for science, you need to keep your health as your first priority. It is best for your health to have as much tumor tissue stored so that you can have it tested in the future as much as needed and because more tissue improves the accuracy of the tests.

“They wanted me to do testing on some mutation to see if I had it and I asked why, and they said because we think it will be helpful. [But] the results of these tests were in no way going to affect my treatment.” – Craig Yankwitt

“What most patients don’t, but definitely should, know is that tumor tissue is a precious information source that can play a very important role in helping to fight your cancer IF – and only if – it is saved at the time of surgery, and properly stored for such use,” – Linda Powers, chairman of HealthBank[3]

Links

Healthcare Review article about tissue banking

Continue Reading

10 Steps: Living with Brain Cancer

Sources

[1] Rebecca Skloot, “Taking the Least of You,” The New York Times Magazine, April 2006.

[2] “Tumor Tissue Banking: A Death Defying Deposit,” HealthCare Review, June 2004.

[3] “Tumor Tissue Banking: A Death Defying Deposit,” HealthCare Review, http://www.healthcarereview.com/2010/06/tumor-tissue-banking-a-death-def..., June 2010.