When I moved to Chicago, I always doublechecked for “organ donor” in part because I’d spent a few years interviewing actors and writing about television soap operas, an activity that exposed me to a lot of dramatic themes, including organ donation and how it can save lives. But it wasn’t just fiction that persuaded me, it was reading about real people who received lifesaving transplants and the family members of those who had agreed to be organ donors.
While I may not remember agreeing to this program prior to Chicago, I can picture the first time I did so in Chicago because I thought about it beforehand. I thought about it but it didn’t require anything more than saying yes when the person behind the counter asked me if I wanted to be an organ donor.
Years later, when I was diagnosed with stage IV breast cancer, I got a pang whenever I saw that organ donor box. With my diagnosis, cancer cells are presumed to be anywhere and everywhere, which of course makes me a poor choice for organ donation since there is a risk that cancer can be transmitted to the recipient. People with cancer currently being treated (such as most people with metastatic breast cancer) are ineligible for both organ and blood donations.
There are exceptions by cancer type and how long someone has been cancer-free following early-stage care, though every donation includes a review of the donor’s medical history. There’s also the possibility of donating corneas, even with metastatic cancer. You can learn more at restoresight.org by clicking on the cornea donation tab.
Of course, there is donating your body to science, a topic that my friends often joked about when we were in our 20s, usually in response to someone who took risks that never went wrong. But recently I started to re-think this idea of donating to science. That’s because of something frequently called “rapid autopsy,” which has led to knowledge about metastatic cancer.
Though I’d heard the term over the past eight years, I wasn’t ready to really learn about it. In late 2022, at the San Antonio Breast Cancer Symposium, I spoke briefly to 2 researchers doing work on rapid autopsy programs. Then, just this month, at the Metastatic Breast Cancer Research Conference, held by Theresa’s Research Foundation, I heard (and learned) so much more. There aren’t many such programs in the United States, but despite that limitation interest is growing among patients.
While there doesn’t appear to be a rapid autopsy program in my area, I am doing more digging. This is in part because of what I’ve finally been ready to hear:
1. Every program takes the time to explain their procedure and why it matters.
2. Typically, the body has to be at the donation site within four hours and the autopsy is completed within six hours of death. This can be a problem because of varying rules around when rapid autopsies can be done. For instance, some programs are only “open” on weekdays.
3. In general, tissue, both metastatic and not, is part of the donation, as are blood, spinal fluid, and urine, among other things.
4. Importantly, there is coordination not only with the hospice, hospital and patient/patient’s caregivers, but with the funeral home.
5. The body is suitable for viewing after the rapid autopsy, including if brain tissue is donated.
I’m not going to lie, rapid autopsy is a difficult topic for me, maybe in part because I didn’t grow up in a family with doctors, nurses, or scientists. For me, I think it’s that agreeing to be part of a rapid autopsy program is so much more than just checking off a box. It means conversations have to happen and decisions about death must be made ahead of time. Even after all this time living with stage IV cancer, this is hard for me.
Still, I have saved a list of rapid autopsy programs in the US for those with metastatic breast cancer just in case I move or one is established in my state. As difficult as the topics of death, tissue donation, and rapid autopsy are, I know that I want to do whatever I can to help change the statistics of this disease.
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