Each October, National Breast Cancer Awareness Month reminds us that around 700,000 people will be diagnosed with breast cancer — a diagnosis that breast cancer advocate and previvor, Allyn Rose, took courageous steps from becoming her and her future child’s fate. Upon her late mother’s request, Rose began her family-building journey by understanding how in vitro fertilization (IVF) and preimplantation genetic testing (PGT) could help reduce the likelihood of passing known genetic diseases to offspring.
“In the last letter that my mother wrote to me before her passing from metastatic breast cancer at age 50, she warned me of my family’s predisposition to cancer and rare diseases, encouraging me to undergo in vitro fertilization (IVF) treatment to eliminate this disease,” says Rose, who is also a former Miss USA and Miss America contestant, model, and the recipient of the 21st Annual Congress on Women’s Health’s Advocacy Award and a Breast Cancer Summit Lifetime Achievement Award.
Up to 10 percent of breast cancer cases are linked to an inherited gene mutation. Not only did Rose cope with the loss of her mother from breast cancer at a young age, but she also experienced the passing of her grandmother and great aunt from it, too.
So, after years donning glamorous ensembles on big stages for Miss America and Miss USA, Rose traded in pageant for patient gowns as she underwent a preventative (prophylactic) double (bilateral) mastectomy to prolong her life. While Rose is not a carrier for the breast cancer gene, she is a carrier of a rare X-linked genetic mutation called Wiskott-Aldrich syndrome. Because of this genetic mutation, there would be a 50 percent chance that her future children would also become carriers of the disease.
“I knew that my journey of preventive healthcare didn’t end with my mastectomy,” says Rose. “If I was taking steps to prolong my own life, it only made sense that I would do the same for my future children.”
That is when our story with Rose began. In October 2019, Rose turned to SGF to help protect her future child from the same genetic diseases prevalent in Rose’s family tree.
What is IVF with genetic testing of embryos?
In October 2019, Rose started documenting her IVF with PGT journey with Kate Devine, M.D., at our K Street office in Washington, D.C. Patients who also aspire to limit the passing of inherited genetic mutations like Rose can turn to SGF for:
- Screening for over 280 recessive gene mutations, including diseases such as cystic fibrosis, Tay-Sachs disease, and spinal muscular atrophy.
- Individualized testing for patients at risk for dominant gene mutations, such as breast cancer or inherited forms of colon cancer.
“The thing I love about SGF, and what I think makes them stand out, is that a large number of their staff have undergone fertility treatments themselves,” shares Rose. “I really appreciated that because I felt like they actually understood what I was going through and when they told me that I would be okay – they meant it.”
Rose followed the course of a standard IVF process from the initial screenings to the IVF injections to the egg retrieval. The point where her process diverged was the genetic testing of her embryos. Embryos, as tiny as they are, have a big genetic story that can be told through a biopsy.
“Allyn’s story is a beacon of hope for women with increased cancer risk and other genetic risk factors,” says Dr. Devine. “IVF with PGT-M is a safe and reliable means of fertility treatment for people who want to reduce risk of known genetic mutations in their children.”
Rose’s IVF success story
This past July, ironically on the 16th anniversary of the passing of Rose’s mother, Rose took to
In July 2020, on the 16th anniversary of the passing of Rose’s late mother, Rose took to Instagram with a heartfelt post about her pregnancy test results:
“CYO and I are thrilled to announce that after 10 months of the roller coaster of IVF, I’m pregnant. The IVF journey doesn’t end here, but I’m an eternal optimist and look forward to introducing Baby Oertel to the world in 2021.”
In a follow-up Instagram post, Allyn wrote, “… I hope it brings some hope to those of you in the middle of climbing what feels like an insurmountable hill — trying to conceive, or with work, or balancing life in general. There IS light at the end of the tunnel. Mine just happened to be of 2 VERY CLEAR lines and what the IVF community calls a “BFP” or BIG FAT POSITIVE!”
Nearly two years after beginning their journey with SGF, Rose and her husband Christopher announced the birth of their daughter, Yve, on April 9, 2021.
“It was an incredibly fulfilling experience welcoming my daughter into the world because it felt as if my journey had come full circle,” expresses Rose. “For the last 10 years, I’ve worked as an advocate in the breast cancer community. I’ve spent years speaking on the importance of long-term perspective and highlighting my choice to undergo a preventive mastectomy in order to prolong my life and to conceive via IVF removing my rare genetic disease from my family tree. Now, I can hold my daughter in my arms and see that it was all worth it. Everything that I’ve worked towards has finally come to fruition.”
She continued to share, “Making the decision to pursue IVF with PGT is a very personal one, but I am a strong proponent of pursuing all options available in order to give children the best possible opportunity to thrive in life. We are so fortunate to live in a world where we can now reduce the inheritance of deadly genetic diseases via IVF. It’s such an incredible gift and I am fortunate to have had the opportunity to give my children a better outlook than I had.”
Dr. Devine expresses her congratulations for Rose and her family, sharing, “I’m so happy that Allyn underwent treatment to reduce her own familial breast cancer risk and that she and that her baby girl is free of Wiskott-Aldrich gene mutations.”
Available oncofertility treatment at SGF
SGF is also dedicated to helping patients with cancer receive fertility preservation care. SGF has a specially trained team that works specifically with people with cancer to ensure the fertility preservation process before cancer treatment can be expedited in order that cancer treatment can quickly begin. The oncofertility team at SGF helps to guide patients through each step of the treatment process, from finding ways to afford treatment to the actual medical procedure.
To learn more about SGF’s treatment options or to schedule an appointment, please call the New Patient Center at 1-888-761-1967 or complete this brief online form.