Young women get gynecologic cancers, and I have had my share of conversations about ovarian cancers with women in their 20s and 30s. It rarely happens, but when it does, it is devastating. I make it a point to talk with them about their present and their future; although it is something I try to do with all of my patients regardless of age, it is somewhat more important that I do it when my patients are young. Yet, even with all of my experience gained through years of practice, I was not prepared for Lyn*.
I had read her chart before we met. I knew she was only 16, diagnosed with a rare ovarian germ cell tumor. She had had an ovary removed, but her surgeon had not taken the other ovary and had preserved her uterus. Her records stated she had a stage IC tumor: the kind that we would treat with chemotherapy for cure. I knew she was an only child and was in high school. I mentally prepared myself for the visit, knowing that she was a teenager facing a cancer diagnosis and the prospect of chemotherapy.
I walked through the door and stopped in my tracks. She looked so much younger than 16, and in her face, I could not help but see my own daughter. She was dressed in grey sweats, her long hair was gathered in a thick ponytail. I greeted her, and she shyly greeted me with a “hello.” I looked in her brown eyes, and it was that look: deer in the headlights, bloodshot, like she had been crying.
With her was her mother, obviously worried but trying so hard not to show it. Her hands were shaking at her sides, and as we shook, she squeezed hard. She had been gazing at me intently, as if trying to telepathically send me a message: “Please save her.”
We sat down, and I reviewed Lyn’s history; she had presented with sudden cramps that had brought her to a local emergency room. She was told her ovary had torsed, and surgery was performed the same evening. When she woke up, she was told she had cancer. Everything else was a blur, so I talked her through her pathology, defining tumor grade, going through her cancer stage. We talked of prognosis and then we talked of treatment. I had recommended chemotherapy and described the regimen: the drugs, schedule, and side effects. Throughout our discussion, she asked questions, and it struck me that she wanted to really understand what had been diagnosed and what could be done to cure her. Honestly, it was her mom I was worried about more: She cried silently, and I worried she might actually pass out.
As we concluded and made a plan, I asked Lyn’s mom to step outside. She was reluctant, but Lyn said it was OK, so she did. Once the door closed, I opened the door to other topics.
“Most women have concerns about cancer and its treatment, especially when it comes to how it might impact them romantically and sexually. I am wondering if this has been on your mind?”
“No,” she answered. “I don’t have a boyfriend, so it’s fine. I’m not really interested in talking about sex right now.”
“OK then,” I said. “I just want you to know that if you ever do, that door is open. I want you to see your future, even as you are dealing with this now. Just because you have cancer does not mean you have to give up on any of your dreams, like college, a career, or even becoming a mother someday if you want.”
As I uttered those last few words, Lyn started to cry uncontrollably. It turns out, even as she had not yet started dating, she had worried that she would not have the opportunity to be a mom. She worried that with one ovary removed, her chances of infertility had increased somehow, and that chemotherapy meant a near guarantee that she would be menopausal — at 16.
“I do want kids someday,” she told me. “I always saw myself as a mom. What happens if I can’t have kids? Who would want to marry me?”
With that, I discussed fertility options with her, such as egg freezing and even ovarian freezing. As we were talking, her mom knocked on the door.
“Come in,” I said.
“I heard Lyn crying and just wanted to know if everything was OK,” her mom said.
“It’s fine, mom,” Lyn said. “The doctor and I were just talking about my becoming a mom someday.”
Her mom looked at me then, shocked. “I think we need to concentrate on curing my daughter right now, not about her having her own children. I don’t even care about grandkids.”
“Well, Mom,” Lyn said. “What about me? I want kids someday, and it frightens me to think I will never have them.”
We spoke some more, me trying to normalize Lyn’s concerns, Lyn voicing them herself, and her mom fairly aghast that this is where the visit with the oncologist was going. Ultimately, we all agreed that Lyn had the right to see a fertility doctor and that a consult was in order. To be honest, I did not feel great about how this initial meeting went. I felt I had done my best as an oncologist, but placing myself in Lyn’s mom’s shoes, I wondered if I would be even more unnerved than she was.
A few days later I got a letter from Lyn’s mom. In it, she told me how angry she was that I had mentioned fertility and talked about sex with her 16-year-old daughter (apparently Lyn had mentioned our discussion to her). She felt I had overstepped boundaries, that my “job” was to talk about cancer, treatment, and prognosis, not about orgasms, avoiding painful intercourse, and babies. She also informed me they had opted to seek treatment closer to home. I later learned that Lyn never saw that fertility specialist.
Perhaps it was naïve of me to think that conversations about sex and fertility were absolutely appropriate for young women, and that such private conversations do not require parental notification. Perhaps I should have asked Lyn and Lyn’s mom if it would be OK to have a conversation about these topics before asking Lyn’s mom to step outside of the room. I believe women with cancer deserve a discussion about fertility preservation and the opportunity to discuss their concerns regarding sex, even if they are young. Whether it be in their teens, twenties, thirties, or forties, all women deserve the information and the conversation about cancer and treatment, and how it might impact their future selves. This screen for sexuality I have learned is a part of the essential psychosocial “review of systems” some adolescent medicine clinicians use, called HEEADSS (home environment, education and employment, eating, peer-related activities, drugs, sexuality, suicide/depression, and safety), and most interviews should be conducted without the parent present.
While I am comforted because I believe that I did the right thing by addressing issues with Lyn, and provided information for her on sensitive issues regarding sexuality and fertility, I see now that I perhaps could have done at least one thing better: preparing Lyn’s mom for the conversation I was about to have with her. I saw Lyn as my patient, not her mom, and perhaps that is the biggest mistake I made. The HEEADSS system does not sanction ignoring the parent. Rather, it stresses the importance of eliciting their own concerns, explaining the purpose of the private interview, and assuring them that their child will be followed for medical and other issues that might arise. I think, in this way, I failed Lyn and her mom.
Ultimately, Lyn and her mom showed me once again that cancer is indeed a social disease, and that Lyn might be the one with cancer, but there are others who love and care about her who have been affected as well. They taught me too that I am perhaps doing my best when I am cognizant of their concerns: all of theirs.
* Name and identifying information changed to protect patient privacy.
Don S. Dizon is an oncologist who blogs at ASCO Connection. This article originally appeared in the Oncologist.
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