UNC Breast Tumor Donation Program
The Breast Tumor Donation Program is a special program that allows metastatic breast cancer patients to posthumously donate tumor and normal tissue for research. Development of this program was a joint venture of the OCTR under the leadership of Dr. Lisa Carey, UNC Pathology, and the Chief of Autopsy Services, Dr. Leigh Thorne. A grant from the Breast Cancer Research Foundation generously supports the Breast Tumor Donation Program.
Additional information on the Breast Tumor Donation Program is listed below. To learn more about the program, please contact Salma Rezk at (919) 962-5052 or firstname.lastname@example.org. Your UNC medical oncologist and nurse navigator can also give you more information at your next appointment.
Background and Rationale
- If the participant is still alive, of sound mind, able to make his/her own medical decisions: the participant gives consent
- If the participant is still living but unable to make his/her own medical decisions: A spouse, parent, child, or other relative OR Healthcare Power of Attorney could give consent
- If the participant is deceased: A spouse, parent, child, or other relative OR Healthcare Power of Attorney could give consent after the participant has died, usually within an hour of death.
Study Process and Tissue Collection
- While you are still alive: After you have consented, the coordinator would access your medical record for updates and may contact your care team. Consenting to this program does not mean you have to stop treatment. Some participants still continue active treatment for many months after they have signed up.
- When you enter Hospice: When you and your doctor make the decision to enter Hospice care, the coordinator would contact Hospice to explain the program and get updates. We want to be sure you are feeling well and be able to prepare our pathology team for the time when you do pass away. Rarely, the coordinator may need to contact your family for an update. If you have selected a funeral home, you should tell the coordinator. The coordinator will call the funeral home and explain the program and how they can help.
- When you are dying: Sometimes, people show signs that they are about to die. Hospice and other medical staff are trained to look for those signs. If you show signs that you are close to dying, Hospice should let the coordinator know. The coordinators do not like to hear this news, but this helps the pathology team prepare for your donation. At the time of death, the coordinator should be called immediately. Your family and loved ones can be with your body for as long as they need. Your family should tell Hospice when they are ready for your body to be picked up.
- Some patients die at home or in Hospice and others die in the hospital. If you die in the UNC Hospitals, your body will be taken to the morgue. If you die at home or in Hospice, the funeral home will pick up your body and bring it to UNC Hospitals. The coordinator will be working with the funeral home to give them directions and instructions. Tissue is collected within 6 hours of your death. This helps us collect tissue and tumor that is good quality. If we wait too long after death to collect tissue, sometimes the tissue cannot be used. The program staff will make every attempt to be sure the donation goes smoothly.
During the autopsy, the team cuts a Y-incision on the chest and abdomen. The pathology team carefully inspects each organ for signs of cancer. Sometimes we find cancer in places we did not know about before. If we see cancer, we take a small tumor sample along with normal tissue from that same location. We also make an incision in the back of the scalp and the skull to check the brain for tumor. If you or your family do not want us to cut or examine a certain part of the body, let the coordinator know and we will honor those wishes.
When the collection of specimens is complete, your organs are returned to your body and the incisions are closed. The way we close the body after an autopsy is standard for all autopsies done at UNC Hospitals and is done in a respectful way. The autopsy takes 2-3 hours.
You could be buried or cremated after the autopsy. You can have an open casket viewing if you wish because the incisions made as part of the autopsy would be normally hidden by clothing and pillows.
If you have primary breast cancer tissue taken as part of a biopsy or surgery, the coordinator may request this. This could be requested from UNC Surgical Pathology or from another hospital or institution. This primary tissue may give the researchers clues as to why your cancer spread in the first place.
Research and Results
The stored tissue will be kept indefinitely. If your family decides at a future date that you no longer want your specimens to be stored, they may have them destroyed by letting your doctor know that they no longer want your specimens in the program.