One of the key characteristics that differentiates young adult cancer from cancer in other age groups is the fact that newly diagnosed women can, in fact, be pregnant.
On a recent podcast of The Stupid Cancer Show, two young mothers were interviewed. Not only were they diagnosed with cancer while pregnant, but they also had young children at home.
“Raising a child is the hardest, yet most rewarding job,” says practically everyone.
Until you are pregnant. Again. And suddenly diagnosed with cancer. You stare at your other little ones and think, “How is this possible? How can I be capable of creating life, while at the very same moment I have to fight for mine?”
“But at least you are already a mom,” says the patient who wasn’t informed that her fertility could be extinguished by cancer and/or its treatment. (“Not helping,” thinks the pregnant mom who always dreamed of having a large biological family.)
[See: 7 Innovations in Cancer Therapy.]
There are many sides to this story, one of which is an empathetic awareness on the part of the oncologist for the health and well-being of both mother and baby — or future mother. The other is the story of how cancer can not only rob you of your pregnancy but snatch your ability to become a biological mother. Period.
You see, being diagnosed with cancer while pregnant is the rarity. But being diagnosed during childbearing years is not. In fact, a 2016 study published in Cancer found that a mere 13 percent of 346 breast cancer patients reported being informed of the risks treatments could pose to their reproductive abilities. That means 87 percent of the newly diagnosed cancer patients were not made aware that life-saving treatments (surgery, radiation, chemotherapy, immunotherapy) could cause a complicated path to parenthood, complete sterility or create an environment where carrying a pregnancy to term is biologically impossible. Eighty-seven percent. Let that sink in for a moment.
[See: What Not to Say to a Breast Cancer Patient.]
Imagine you celebrate your five-year cancerversary and try for a baby. But don’t get pregnant. Or you suffer miscarriage after miscarriage after miscarriage. And then you learn from a reproductive endocrinologist: “It was probably your cancer treatment.”
And you think, “Why didn’t anyone tell me?!”
Chemo care classes teach patients all about the other side effects of treatment, including:
— Hair loss.
— Gastrointestinal upset.
— The potential for fingernails and toenails to fall off.
— Memory loss.
— Bone pain.
— Cardiovascular damage.
But not all patients are being told that these same treatments may render them infertile.
What’s more, patients aren’t always informed about options to potentially preserve their fertility. Doctor-patient conversations are sometimes omitting topics like egg or embryo freezing and ovarian tissue or whole-ovary cryopreservation, all of which have yielded live birth successes.
At first blush, it may seem understandable for an oncologist to prioritize saving the life of a patient (or patient and fetus). Yet, virtually every cancer-related professional medical society, including the American Society of Clinical Oncology, the American Society for Reproductive Medicine and the National Comprehensive Cancer Network, published guidelines within the last five years suggesting oncologists are morally, ethically and legally responsible to inform all young adult cancer patients of their reproductive risk.
Despite those guidelines, recent surveys suggest that fewer than 20 percent of oncologists are informing their patients of these risks, and even fewer cancer centers are documenting a patient’s understanding of said risks. While the oncologist is responsible for initiating the conversation, the cancer centers are responsible for documenting informed consent. They are regulated by multiple state and federal organizations.
[See: HIPAA: Protecting Your Health Information.]
So what’s behind this communication breakdown?
Surveys of oncologists suggest paternalism is partly to blame. Some physicians may gloss over the fertility conversation if they assume their patients:
— Can’t afford fertility preservation.
— Are finished building their family (if they already have one child).
— Are too sick or overwhelmed to face another major piece of information.
But this attitude seems to fly in the face of what patients want. “Patients who report being informed of their risk prior to treatment — even if they couldn’t preserve their fertility — report better on quality-of-life measures than those who weren’t informed of their risk,” says prominent young adult oncologist Dr. Leonard Sender, senior vice president of medical affairs for pediatric, adolescent and young adult oncology with NantKwest, a clinical-stage immunotherapy company.
What will it take to ensure patients get all the information they need to make informed decisions about their health care?
Oregon recently introduced a novel bill that attempts to address these informed-consent gaps by requiring physicians to document that they have informed patients of their fertility risk prior to cancer treatment.
It’s a step in the right direction. But this lack of informed consent remains troubling. A cancer survivor’s gratitude for the physician who saved her life should not have to be eclipsed by the devastating feeling that she was involuntarily sterilized.
On top of everything else a young adult with cancer faces, this should not be happening.
More from U.S. News
Breast Pain? Stop Worrying About Cancer
7 Things You Didn’t Know About Lung Cancer
8 Questions to Ask Your Doctor About Colon Cancer
Cancer and Infertility: Why Aren’t More Women Being Told About the Risks? originally appeared on usnews.com
