A family history of colorectal cancer carries increased risk of being diagnosed. About 20% of all colorectal cancer patients have a close family member who has had colorectal cancer, and 5% have a well-defined genetic syndrome that causes colorectal cancer, like Lynch Syndrome or Familial Adenomatous Polyposis (FAP).
If you or a loved ones has been diagnosed with colorectal cancer, you know how much of an impact early diagnosis can have. Knowing your family history and getting screened on time or earlier may have saved a life.
But what happens when you’re an adoptee, or your family history is unknown?
For an adoptee, going to a new doctor and filling out forms detailing family medical history is difficult. Working with insurance to get screened, or have symptoms evaluated with no known family history is an immense source of frustration for anyone, but especially for adoptees.
Sonya Zuker is a colorectal cancer survivor and adoptee. Sonya was adopted at the end of the Vietnam war, and she left Saigon a few months before her third birthday.
“When I moved to Minnesota in 2006, I found a family practitioner who could support my two children, my then husband, and myself. I made a point of getting yearly full blood workups to stay on top of my health. I did not pay too much attention to my health history before having children and took the opportunity with the new doctor to establish this ‘new normal’ of annual check-ups.” For many adoptees like Sonya, having children is often the biggest driver of learning family history.
“Being adopted and not knowing my family history before having kids was not as big of a deal. But, once I had kids, I felt I needed to do this more for their sake than mine.”
Doug Dahlmann is another colorectal cancer survivor “I always knew I was adopted, and it was a source of pride for me. I felt it made me unique.”
“I went looking for my birth family when I was 31. The State of Wisconsin has a program where adoptees can ask the state to search for their biological parents. Once they find them, they reach out to the mother and ask her if they want her contact information to be passed to the adoptee. Then it’s up to the adoptee to reach out to the mother.”
“My birth parents wound up getting married and having three more kids — all boys. So imagine waking up in your early 30s one day and learning that you have three full blood brothers! I was living in the Seattle area at the time and flew back right away to meet them. The reunion has been nothing short of amazing. My birth parents and my birth brothers welcomed me with open arms and I wound up moving back to Madison to be closer to them and my adoptive family. I feel like I’m the poster child for adoptees finding their biological families.”
Doug was diagnosed with colorectal cancer in 2010. By being reconnected with his birth family, Doug helped his brother get screened and catch pre-cancerous polyps. “He likely wouldn’t have gotten screened until years down the road, at which time, it’s possible he would have had cancer.”
“Before finding my birth family, my family health history was unknown, so my doctors never had anything to go off of to determine if I had family health history that made me more likely to get something bad down the road. Now that I do have a health history, it’s been good information to know. There wasn’t really anything in my family history that, had I known earlier, would have changed my health care. There were no family health history signs that would have indicated I was at increased risk for CRC.”
Here are a few things you can do to make adoptee medical history easier, and what you can do as an adoptee to prepare yourself for doctors visits:
As an adult adoptee:
1.) Talk frequently with your doctor about your concerns, symptoms, your status as an adoptee, and lack of family medical history.
2.) Take advantage of state laws in your area that may allow you to access anonymized medical records from your family. This is highly dependent on what was made available by your family of origin, but even small details may help illuminate parts of your family medical history
3.)Learn the signs and symptoms of diseases with hereditary links, like colorectal cancer. It’s not realistic to be familiar with all medical conditions with hereditary factors, and you shouldn’t try. Instead, think through your own medical history. For example, if you have a history of gastrointestinal related issues, such as IBD, Crohn’s or Colitis, or Diverticulitis, learn the signs and symptoms of colorectal cancer, and talk to your doctor about earlier or more frequent screenings.
As an adoptive parent:
1.) Speak with the placing agency and see if any medical records available for your child. This is highly dependent on what was provided, but any amount of medical information can be impactful.
2.) Help your child’s pediatrician understand their status as an adoptee, and any concerns you may have about genetic conditions. Don’t be afraid to ask questions or advocate for your child’s needs in the doctor’s office.
3.) Help your child understand how to advocate for themselves at the doctor’s office. What kinds of questions to ask, and when it’s right to seek another medical professional. Advocating is a difficult skill to learn, especially in medical situations.
4.) If your child is in an open adoption, talk directly with their family of origin and create a plan for sharing medical details.
As a bio parent
1.) If you’re in an open-adoption, and feel able to do so, share medical updates about yourself and your immediate loved ones with your child’s adoptive parents.
2.)If you’re in a closed adoption, contact your placing agency and see if you are able to provide your anonymized medical records to your adopted child.
3.) If you’re considering adoption, think about the medical history of your loved ones and provide it to the placing agency or the adopting family. Even if you are unaware of all of your family history, even small details such as a history of any type of cancer, heart attacks, or mental health conditions, can all be helpful for your birth child later in life.
What you can do as a medical provider
1.) Understand your patient’s background as an adoptee, and be sure to ask follow up questions about any known issues regarding family medical history. Even rumors of family medical issues like colon cancer or heart attacks should be heard and validated for your patient.
2.) Consider your language when talking about adoption and adopted families. Instead of assuming your patient knows their family medical history, ask if they are adopted or if they know of any family medical concerns.
