This past winter, my friend Jan embarked on two unrelated quests. While tracing her ancestry, she was attempting to find out whether she had cancer. A visual artist, not a word person, Jan enlisted me as her scribe in the hope that her story might be useful. I’m glad she did. Her efforts at detection suggest that although many of us remain quite limited in what we know about our bodies and ourselves, we can nevertheless steer our way toward even the most startling discoveries.
Jan, at 66, had no major health complaints and arrived at her general practitioner’s office with only one issue: the need to change a medication for dryness from vaginal stenosis, or narrowing. The doctor, unable to obtain a Pap test, wanted to be prudent so she ordered a sonogram that then alarmed her: The thickness of the endometrium led her to speculate that Jan might be confronting cancer.
However, the gynecologist to whom Jan was sent dismissed that speculation, telling her he could “almost guarantee 100 percent” that she did not have cancer. If she had endometrial disease, he claimed, there would have been symptoms: bloating or bleeding. He performed a D & C (a dilation and curettage procedure), but only because she insisted on a clear answer.
When Jan’s mother was pregnant with her, she had taken the drug diethylstilbestrol, then used by millions of women in an attempt to prevent miscarriage. But it was shown to cause cancer and stopped being used in 1971. As what is known as a DES baby, Jan had been warned of higher risks for certain cancers and other health problems.
While Jan waited for the biopsy result, she was relieved that genealogical investigations took up much of her attention. She was navigating through Ancestry.com — and encountering new second cousins; they began emailing to figure out “how the heck we were related.” Jan had sent a saliva sample in for DNA testing after her mother died, wanting to learn about her father. He had committed suicide when she was 2.
The gynecologist, clearly shaken, soon informed Jan that she had asymmetrical complex endometrial hyperplasia, a condition he described as being “very close to cancer.” She should have a hysterectomy. Alarmed, she phoned all of the gynecologic oncologists within an 80-mile radius of our town in Indiana. She would have to wait a minimum of two months for an appointment and longer for an operation. With the encouragement of her half sister, she called the Siteman Cancer Center in St. Louis and got a consultation with only a two-week wait.
During the intervening days, when she checked the Ancestry.com site, Jan could not believe her eyes. The genetic profile of one man matched her own to an uncanny degree. With “high confidence,” the site stated that this individual was her father. She found a chart explaining centimorgans, units for measuring genetic linkage. She consulted two biologists.
Was she really seeing the name of her biological father? The biologists thought so. And given subsequent internet searches on the man’s life and whereabouts, Jan became convinced that Ancestry.com had furnished her not with an ethnicity that licensed her to wear either a head wrap or a kilt but with the identity of the person her husband and I started calling her bio-pop.
Reeling, she traveled to St. Louis for the appointment she had lined up there. It was with Dr. Premal Thaker, a gynecological cancer specialist who judged the earlier pathology report incorrect: Jan had cancer. A few weeks later, laparoscopic surgery elicited a diagnosis of stage 1 (A) endometrial disease that required, happily, only follow-up appointments every three months for the first couple of years.
What do these two intersecting journeys mean, we wondered? What has the discovery of cancer and paternity illuminated?
Jan’s medical story proves the importance of knowing your background and maintaining vigilance: of trusting your instincts and insisting on pre-emptive care. Later-stage endometrial cancer can be deadly. Currently cancer-free, Jan will undoubtedly remain watchful.
Her cancer trajectory gives me a glimpse into what preventive medicine can do. As cancer takes a back seat in her active life, Jan illuminates what living with cancer should mean, not what it has meant — a terrifying series of debilitating interventions — for people like me whose disease is found at an advanced stage.
More equivocal, Jan’s ancestry story signals the difficulties of knowing your background and the resulting ironies any revelation about lineage can generate. Jan had been the only one in her family trying to understand the man she thought was her father, who she now jokingly calls her faux-pa. The shadow of his suicide takes on a different cast. The woman she thought was her only full sister is a half sister like her other sibling (born in her mother’s second marriage).
Jan — no longer the person she believed herself to be — faces a host of future questions. Will her biological father welcome or ignore her tentative efforts at some form of communication? Would the disclosure of her existence inflict emotional damage on him, his wife or their offspring? What is her full medical history?
With two dead fathers (her supposed father, her stepfather) and one alive (her biological father), Jan has contended with the fiction of paternity — the assumption that the husband is the father of his wife’s child — that some donor-conceived and adopted people confront with various degrees of sorrow, confusion or curiosity. She has also grappled with anger at her mother.
Why had she not told Jan of her parentage — or of the confusion about her paternity — before she died? Jan imagines how her mother would have reacted to being presented with the genealogical information: “She would have said (and it might be true), ‘Oh, Honey, I had no idea.’”
Taken together, the cancer and the ancestry searches “helped mitigate each other in a weird way,” Jan thinks. Either would have been “all-consuming and devastating” on its own. As fraught as knowledge can be — and both of Jan’s quests resulted in vertiginous knowledge — she feels empowered by them to shape the future outcomes of her findings.
“That’s my nature,” she says. “Where did I get it from?”
Susan Gubar, who has been dealing with ovarian cancer since 2008, is distinguished emerita professor of English at Indiana University.
Source : Nytimes
