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 Susan G. Komen 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 Julie Benbow Pearce 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.
What is the purpose of this program?
The purpose of this program is to collect, store, and analyze samples of tumor and normal tissue from patients who have just died from breast cancer. Tumor and normal tissue are collected during a rapid limited autopsy within 6 hours of death. Some of these specimens are used immediately for research at UNC and other specimens are stored for future use. We want to do this so we can better understand how and why breast cancer spreads outside the breast and to other parts of the body.
Why do scientists need tumor donations from metastatic breast cancer patients?
Even though we have learned many things about cancer over the last few years, we still do not understand why certain cancers spread. Through the Breast Tumor Donation Program, tissues can be donated at the time of death to help scientists understand more about breast cancer, how it spreads, and why it spreads.
Why can’t the program use samples from my original cancer surgery?
We usually have tissue samples from the original cancer surgery when the cancer was in the breast (biopsy, lumpectomy, mastectomy). We usually do not have samples of all the cancer once it comes back and spreads to other organs. The pathologist performing the autopsy collects tissue from organs with cancer as well as tissue from normal areas of the same organ. The autopsy also allows pathologists to collect large amounts of tumor from everywhere the cancer has spread, not just the breast. This gives scientists a rare opportunity to learn about the cancer as it spread through the body. These tissues provide a great deal of information that allows us to better understand why cancer metastasizes.
Who is eligible to donate?
Men and women living with metastatic breast cancer can participate. Most participants sign up when they are entering Hospice care, but the timing varies for every person and there is no right or wrong time to sign up. Our program asks that you live in North Carolina within a 2-3 hour transportation distance from UNC- this helps the autopsy occur within a 6 hour window. A study coordinator can help make a determination about distance from UNC before you consent to the program. In the event you are admitted to UNC Hospitals at the time of death, there is no distance restriction. Our program cannot accept patients with certain communicable diseases like HIV/AIDS, Hepatitis, and certain skin infections. If you have questions about eligibility, please contact the study coordinator.
How can I give consent for the program?
A signed consent form is needed for participation in the program. The study coordinator usually meets with you and your family in person at an appointment to talk about the program and answer questions. In special circumstances, the study coordinator can talk with you and your family over the phone. After you have consented, the coordinator will give you contact information for how to reach her 24/7. There are three ways in which consent can be given for the program:
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.
What happens after I consent to the program?
- 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.
Does signing up mean I have to die in the hospital?
No. We encourage patients to be in comfortable, familiar surroundings when they die. For many patients, this means choosing to die at home or in a Hospice facility. The study coordinators will work with hospice staff and your chosen funeral home to help your body get to UNC after you die. Sometimes, Tumor Donation participants die at UNC Hospitals. If you die at UNC Hospitals, the study coordinator will work with your care team to help coordinate your donation.
Does signing up mean I have to stop current treatment?
No. Your decision to participate in Tumor Donation will not affect the treatment plan selected by you and your oncologist. Most participants sign up for Tumor Donation when they are entering Hospice care, and this usually means stopping anti-cancer treatment (like chemotherapy). But some patients continue active anti-cancer treatment for a long time after they have signed up for Tumor Donation. The decision to stop active treatment is one that should be made with your oncologist and cancer care team. Signing up for this program would not affect the quality of care you receive at UNC if you decided to continue active treatment.
Will my decision to participate in the program affect my care at UNC?
No. UNC is committed to providing high quality care to all patients, regardless of their decisions to participate in clinical research. Participation in the program is completely voluntary, and the choice to donate tissues after death is a private decision. All decisions related to tumor donation will be respected.
What if I change my mind about participating?
You can choose to withdraw from the program at any time, without penalty and without affecting your care.
What if my family changes their minds about participation?
We try to honor the final wishes of our participants. If you are very sick or have just passed away and your family decides they no longer want you to participate in the program, we ask them to please call a coordinator as soon as possible to let us know.
What if outside circumstances prevent me from donating?
There is a possibility that because of unforeseen circumstances, the coordinator would need to cancel your donation. This could be because of unexpected delays getting your body to the hospital (traffic, severe weather, ice/snow) or staffing problems (pathology team is unable to come in). If the coordinators find that we cannot make your donation happen, we would advise you and/or your family as soon as possible.
What happens during the autopsy?
The autopsy is done at UNC by members of our trained and dedicated pathology team. They would perform a rapid limited autopsy. The word “rapid” means the autopsy is done within 6 hours of death. Rapid does not mean the autopsy is done in a rush. The word “limited” means we are only doing the autopsy for the purposes of collecting tissue, not to determine cause of death. The pathology team collects tissue in a dignified, careful, and respectful manner.
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.
What happens after the autopsy?
After the autopsy, the coordinator will call the funeral home that brought you to UNC so your body can be taken back to the funeral home. If the autopsy happens during the day, the funeral home can take your body back the same day. If the autopsy happens at night, the funeral home may need to come back the next morning to pick up your body.
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.
How will my privacy be protected?
Your privacy will be protected by the use of numbers instead of your name in the laboratory, so that the information about your breast cancer and your tissue is only linked to an anonymous study number. A link between this study number and information about you is kept in a secure computer file, which is accessible only by the coordinator and restricted personnel.
What will happen to the specimens?
Some of the tissue you provide may be used right away for studies, and some of your tissue will be stored for future studies. Any blood, body fluids, or tissue specimens obtained for this program become the property of the University of North Carolina at Chapel Hill. The stored tissue will be kept at the University of North Carolina Lineberger Comprehensive Cancer Center Tissue Procurement. Tissue will be identified with a unique number that is linked to your identifying information. Only the program coordinators and physician will know your name and other personal information. No identifying information will be given to others. Information about your cancer will be stored under a study number, not your name.
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.
Will my family be given results from research involving my specimens?
There are no plans to contact your family after the autopsy. Your family will not receive a summary of tissues or an autopsy report. You or your family can request that a full autopsy be done if they wish to receive an autopsy report. Your family can also call the coordinator if they have questions about what was found at the time of autopsy. The coordinator will always remain available to answer questions or talk your family members. If the researchers discover information from your sample that other family members need to know (like a mutation that increases risk of cancer for your relatives), they would contact your family and share that information.
Will I be paid for participating?
You and your family will not be paid or receive anything for your participation in the program.
Will it cost anything to participate?
It will not cost you or your family anything to participate in the program. The program pays for costs of transportation to and from UNC and the charge for the pathology team doing the autopsy. Your family should not be billed for the funeral home transportation costs associated with the program.
The UNC School of Medicine offers a whole body donation program for people who wish to donate their bodies after death for UNC medical and dental education programs. This program is not affiliated with the Breast Tumor Donation Program. Unfortunately, you cannot participate in both the whole body donation program and the Breast Tumor Donation Program. For more information on the whole body donation program, please contact Tom Lawrence at (919) 966-1134.