Childfreeness: Child Free By Circumstance, Facing Infertility After a Breast Cancer Diagnosis

"We share a collective belief that women are naturally nurturers and care takers. It makes me wonder what the world would look like if, from a young age, women were encouraged to be who they are without being labeled as nurturing or selfish."
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Image credit: Bonney Rowley 

Image credit: Bonney Rowley 

In latest installment of Childfreeness Contributor Gretchen Jones speaks with Bonney Rowley: a 32 year old woman whose recent breast cancer diagnosis and surrounding treatments have led to her new reality of life without children, by circumstance. 

It feels rather strained to be writing an introduction for another installment of Childfreeness during the middle (dear ‘lord’ I truly hope this is the middle, not the beginning, still) of a pandemic, but then again… it also feels utterly necessary. This pandemic is also an environmental catastrophe brought on in part by globalism and climate change. The conversations swirling around me include women who are or were still struggling to understand if they wanted children only being more confused by the circumstances before us changing ‘life as we know it.’ 

I’ve also had a handful of pregnant women in my life expressing fears around giving birth in hospitals and how that might impact both their unborn child’s health, let alone their and their (maybe) partners. There’s talk of the next ‘baby boom’ due to quarantines dragging on. And even more recently, on the week of Mother's Day here in the United States, children are becoming sickened and some passing away from new mysterious COVID19 related symptoms - bringing women who were once mothers into the child-free by circumstance community. I say all this as the cycle of life is going on as per the usual, and not at all. And if it weren’t clear before, it is all too clear now how much of the human experience is out of our own control. Sure, we can plan as though ‘normal’ is an achievable, and sustainable state of stasis. And yet, it is not… more now than ever.

According to US National Library of Medicine National Institutes of Health, in 2020, regardless of pandemic, an estimated 276,480 new cases of invasive (and 48,530 cases on non-invasive) breast cancer are expected to be diagnosed in women in the U.S, with 9% (24,883) of these women still in their childbearing years. Over a CIS woman’s lifetime, about 400-500 mature oocytes are released into the fallopian tubes. Radiation, chemotherapy, and hormonal therapy all effect ovarian function to greater or lesser degrees, with the incidence of permanent post-treatment amenorrhea (an abnormal absence of menstruation) and/or damage to their follicle pool following systemic treatment for breast cancer in women age 50 or younger is estimated as between 33% and 76%. 

It’s also incredibly important to call attention to the fact that the majority of child rearing aged CIS women (56%) regularly indicate that at the time of diagnosis, they want to have a child or more children in the future. NIH/NLM’s report ‘Fertility preservation and breast cancer: a review’ states - “Early diagnostic methods, targeted therapies, and prolonged survival rates have made fertility preservation a major issue when treating young breast cancer patients.” And though physicians treating women are in a unique position to PRIORITIZE the discussion of fertility preservation and reproductive options for cancer patients and survivors across the treatment spectrum; however, this department is often considered secondary, when early referral and treatment design are crucial to its success. Even if women wish to consider fertility preservation, many do not receive timely information. And two recent surveys of oncologists concur that less than half routinely refer young female patients for fertility preservation, contributing to a 50% decrease in women diagnosed as young adults.

Forgive me for the long winded, data driven details above, but in preparing to introduce this months interviewee, honoring the factual evidence that led to her story and circumstances is vital. Knowledge is power, but so is communication. After all, this column is literally meant to bring voice and context to the diverse experiences of living childfree. Consider this interview more than a harrowing narrative that adds another dimension to Childfreeness, but an effort to help spread incredibly important information that is not being spoken of regularly or openly enough, nor researched enough and more often than not, covered by health care providers either.

Though a diagnosis of cancer is about as shitty as it gets, the reality is that there is no good way of knowing [yet] which women treated for cancer will become infertile. What we do know is taking every precautionary measure, including proactively removing body parts to save your own life is traumatic. What we do know is cancer at any age and stage is terrifying and life altering at the bare minimum. What we do know, is that the risk of loss of fertility for cancer patients is related to the medication(s) and treatments used, the dose that is given, how long it/they are administered, and the woman's age at the time of diagnosis and treatment. What we do know is that receiving multiple medications makes predicting fertility even harder.

What I didn’t know is just how emotional I would become while reading Bonney Rowley’s story. It is agonizingly transparent and so beautifully written. I am in awe at the level of vulnerability she brought into this project. Her story is one with no clear ending, just as life is meant to be...just as this moment is history forcing us all to accept if not embrace. What comes next is not up to us to decide, how we approach the circumstances at hand though, that is up to us.

Please select all that apply.

❏ Infertile

❏ Couldn't afford intervention, but wanted to.

What's your story? How did you come to be… child free/less?

It was June 4, 2018 when I got THE call. The kind we all fear and often see commercialized, sanitized for consumption on the big screen, except this was REAL and this was MY life. I was sitting amongst the Greek and Roman marble statues at the MET when my phone rang, and my doctor asked me to come in the following day to go over results from a recent precautionary breast biopsy. Everything faded away. I felt sick and weak as I rushed through the crowds, bumping into students and tourists, sobbing on the eternally frenetic streets of New York City. I don’t remember how I got home, only that I walked through the city for hours that day. A ghost of myself, raw, numb and in total disbelief.

Three years earlier I found a smooth round lump near my armpit while stretching in bed. I have always been on the cautious side, going to doctors appointments that made my friends and family roll their eyes. It was a lump that even my doctor struggled to feel and find in my small breasts. I guided her hand to the correct area, and she confirmed that she felt the lump. She casually explained that it was most likely a fibrous mass, a common finding in the dense breast tissue of young women, and suggested I have an ultrasound done if it would make me worry less.

For two years the same thoughts repeated in my mind at each ultrasound appointment like a mantra. Many women have benign lumps and bumps in their breasts. What makes me any different? I am not special. The poker-faced ultrasound tech would move a cold and lubricated transducer over my breast, snapping pictures of the mass from different angles. The report read as stable each time, “Come back for a follow up in six months”. I tried my best to put it out of my mind and continue living my life as if it were nothing. It was unnecessary to continue follow ups after two years had passed. I convinced myself to move on and forced myself to trust that imaging and doctors knew best. After all, I was only 32 and statistically my chance of having breast cancer was extremely low.

Three years after my first ultrasound I found another lump on the same breast. Old doubts and fear turned to panic. This new lump was so small that it might have seemed harmless to anyone else. It was close to the surface of my skin and near my nipple. It looked bruised, casting a faint yellow and purple hued shadow. More ultrasounds and follow ups turned into a fine-needle aspiration biopsy. I anxiously waited for the results to come back, losing sleep and unable to think straight. To help take my mind off the waiting game, I decided to take a personal day and visit the MET museum, which is where I received the call that sent my life spinning.

“Your biopsy came back positive for cancerous cells. I’m so sorry. You have breast cancer”. Nothing prepares you to hear these words. The blood rushed out of my body and I couldn’t hear or understand any other words that came out of my doctors mouth. I was sitting in a chair in an exam room receiving some of the worst news anyone can ever hear, and I had totally disassociated from my body. I left dazed with tear stains on my face, shaking and clutching a piece of paper with names, numbers and appointments with specialists. It was beautiful outside, which made all of it even more unreal. It was one of those clear-sky, breezy, early summer days in June before the city smells like decay wrapped in thick humidity.

I spent the summer of 2018 swept up in a parade of doctors and tests, each more invasive than the last. The full extent of my cancer type and staging wouldn’t be known until I had undergone surgery, removing the tumors, breast tissue and lymph nodes for testing. My breast surgeon spoke to me about different treatment options depending on the results of these tests. Some involved only radiation, others chemo and radiation, some with endocrine/hormonal therapy. She reassured me that I had done everything right by sticking to those years of ultrasounds. I was lucky that the specialist reading the imaging had decided to err on the side of caution by ordering a biopsy. My cancer did not look like cancer. Even a seasoned breast cancer surgeon would not have looked at those images and diagnosed an otherwise healthy 32-year-old woman with cancer.

With the help of my breast surgeon, I made the incredibly difficult decision to undergo a double mastectomy. It was a decision that many friends and family members were shocked by. They found this measure extreme for someone my age, who had been diagnosed with cancer in one breast. It was a decision I made knowing that I never wanted to have to endure a surgery like this again. I also did not want to have to undergo constant tests and monitoring on my other breast. I didn’t think I could survive breast cancer once only to have it return in my other unaffected breast many years later. I would rather suffer the complete loss of my breasts at once and totally.

I remember waking up after surgery with a heavy hollowness in my chest. Nerves that were cut away with my flesh left a searing almost electric pain in its place. It was July and the middle of a 4-day heat wave. The hospital cooling system was strained, and portable fans buzzed in the background. My surgeon entered the room and asked everyone to leave. She took a seat near my bed, held my hand, and told me that the cancer had spread to my lymph nodes. My cancer tested positive for both estrogen and progesterone and I would need chemotherapy, radiation and hormonal therapies to fight this. I spent the Fourth of July hospitalized and in the worst physical and emotional pain of my life. Fireworks exploded in the sky outside my window, I begged the universe to let me live, and prepared for war against my own body.

I was often asked to make some of the toughest decisions of my life utterly terrified and in complete panic. When faced with a series of questions that often felt like choosing between life or death, the answer becomes life at any cost. I started chemotherapy about a month after my mastectomy surgery with fresh incisions and sutures. I vaguely remember having a conversation with my oncologist about fertility before I began chemotherapy. He asked if I was single and if I planned to have children in the future. I found it hard to think about my future when it felt like my life as I knew it was over. 

These questions felt more like adding insult to injury at the time. I was single and had left a crushing, abusive relationship a couple of years before my diagnosis. I had dreamed of a life and family with this man. I stayed in this relationship for four and a half years because I believed that this was my only chance to have a family. It is hard to admit that to myself now, but it was also the language I had heard from my abuser again and again as a ploy to keep me trapped. I had romanticized the idea of having children, thinking it would happen naturally when the time and partner was right. I never imagined I would have to answer these questions blinded with fear, alone in an oncologist office agreeing to treatments that would leave me infertile.

Advances in breast cancer care, including early diagnosis and aggressive therapy/treatment, have improved the life expectancy for young women, and have necessitated an increased emphasis on issues of survivorship, including family planning. The optimal time to address the possibility of treatment-related infertility and strategies to combat this with younger patients is prior to treatment, rather than after cancer therapy has begun…however, less than half of studies refer their patients to fertility preservation specialists.

How did your doctors present, discuss and support—offering information and resources, emotional support including counseling, etc—your needs in terms of the impacts of treatment on your fertility?

Much of what we know about breast cancer and its treatment options come from research on disease in women 40 and older. Many women in this age group are approaching perimenopause or menopause and have already started families. For women diagnosed under 40, fertility is still an especially important issue. Some of us may still be deciding if we want to have a family or may even be trying to conceive at the time of our diagnosis. Breast cancer often presents differently in younger women, making it harder to diagnose and commonly found at a more advanced stage. Treatment options become more limited and aggressive with a less positive prognosis.

I remember fertility being discussed as a secondary issue when meeting with my oncology team. The emphasis of most of my appointments were on chemotherapy options. Doctors discussed which drugs we were choosing for infusion therapy, the side effects of each and what would give me the best chance of survival. I was so focused on making choices that would allow me to grow old and have a life that everything else came second. I had to put myself and my health first, which felt radical even while facing a life-threatening disease. It is often expected that women put others before themselves, making decisions based on the good of their partners and families, not necessarily their own needs. I did not want to put my life at risk or sacrifice my future to have a child. Would a future that included a family matter if I was not alive to experience it? Would that be fair to my future partner or my children?

My doctors asked if I had any plans to have a family, which was a difficult question to answer as a single woman facing cancer. I knew that any fertility treatments would not be covered by my health insurance company and would be prohibitively expensive. This was not something I had planned and saved for or could afford. I was frustrated and angry that I did not have easily accessible options to preserve my fertility so I could decide later if I wanted to have a family. I told my doctors that we would be moving forward with treatment without preserving my fertility since it was not an option I could afford. Shortly after my first chemotherapy infusion my periods stopped and never returned, even months after this part of my treatment had ended.

In January 2020, a bill [Infertility Mandate BILL NO A02817] went into effect in New York that mandates insurance companies cover and pay for cancer patients fertility preservation. This happened right as I was coming out of the fog of all my treatments and was very bittersweet. I cried when I heard that this had passed. I thought about all the other young women I met in support groups, some even younger than me, and it brought me great joy and relief to know no one would have to make this sacrifice.

Many [young] survivors hope/plan to have a biological family; in fact, prior studies indicate that the process of surviving a cancer diagnosis may* actually increase one’s desire to have children. Young cancer survivors are often encouraged to consider alternatives approaches (surrogacy, adoption, fostering, etc) yet face discrimination in their pursuits because of medical history. Beyond high out-of-pocket costs and circumstantial discrimination, were you interested in exploring any of these non-biological options for family planning?

I’m keeping an open mind when it comes to non-biological options for family planning. I do not feel ready to make any big decisions about having a family with the options available to me. At the moment my focus is on healing from the physical, emotional, mental and spiritual trauma of my journey with cancer. I am mourning the loss of many parts of myself, including my fertility and it is painful to process. When I have thought about the non-biological options available to me the one that has appealed to me the most is adoption. I view it as an option that could also make a profound difference in the life of a child in need. 

Many of these non-biological options are extremely expensive and reserved for the 1% that can afford them. It is not uncommon for women in my situation to find a surrogate in a different country because it is more affordable. That is not an option that I feel comfortable with personally, but I do understand that for some that is the best choice or the only option they have. I just wish we lived in world where access to affordable healthcare that includes fertility treatments and preservation exits. Right now, access to family planning and fertility treatment/preservation feels like a right only the privileged and rich have, and out of my reach.

The link between body image and body satisfaction are rooted in our feelings of identity and self image. Many studies state that a cancer patient’s relationship with their body shifts quite a bit after diagnosis, throughout treatment and remains complex after survival. How has your relationship with yourself—body and self image—evolved since experiencing so many different LITERAL ‘life-changing’ experiences over the last few years?

My relationship with my body has become incredibly complicated. I no longer trust my body like I used to, and I worry constantly about every ache, pain, headache, or unfamiliar sensation as a signal that my cancer could have returned. I work hard every day to be patient and kind with myself after having endured something so traumatic and life changing. I also try to appreciate the strength it took my body to fight this disease. Despite these efforts there are plenty of days where negativity and negative self-talk dominate my thoughts. I have felt disfigured, disgusted, and full of despair when facing the changes to my body from surgery and cancer.

I feel an incredible amount of pressure to be positive and feel positively about my body as a “survivor”. I have felt a lot of shame for hating my body and its new scars throughout this process. I have felt isolated and afloat in a sea of pink ribbons and body positivity. These campaigns, meant to connect and empower women, felt empty without integrating the messy and dark parts of a cancer diagnosis. It feels like a punishment, being told to smile and be positive as you are grappling with some really dark and intense existential shit! My appearance and the way I identify in the world changed forever and in a short amount of time. The disconnect between the way I remember myself and what I now see when I look at myself is hard to come to terms with. A friend and I were going through pictures we took on a recent trip and I had to ask, “who is that woman in the photo?" I could not even recognize myself. Who was that woman with short curly hair? I still remember myself as the woman I was before cancer. Someone who had long straight hair her entire life. Someone with different worries and cares.

I am working very hard to love myself and my body again. It still takes practice for me to be able to look at my breasts without crying and hating what I see. I have found that I mostly avoid looking at, touching, or thinking about that part of my body. I have learned to disconnect in order to survive and attempt to move forward. I am still learning about my new body and my new life. I am still learning who I am and who I want to be after cancer. I am in the process of being remade and like other moments of profound growth, it’s an experience that is full of duality. Both, ugly and beautiful as well as incredibly painful and joyous. I fully expect that the way I feel about my body will evolve as time passes and I hope that I have health on my side to experience this rebirth.

Studies show the physical, emotional and financial burdens of cancer often lead to increased stress levels within romantic relationships, especially for younger survivors. Though few [formal] studies have been done, some results are showing that many young couples dealing with a cancer diagnosis face a higher risk of separation or divorce in the years following diagnosis—but these studies do not include the added complexity of infertility due to treatment.

You are engaged to be married, how have you and your fiancé approached, or managed the stress and uncertainty connected to your health and fertility, as well as the added financial and professional impacts you’ve both dealt with—individually and together—throughout this chapter of your lives?

I was single at the time of my breast cancer diagnosis. I met many other young women who were also single and many that were partnered or married. Most of the single women worried about how their diagnosis and the effects of treatment would impact their ability to find a partner and have a family. Who would love us with our scars, lack of breasts/nipples/hair, significant medical debt, impacted fertility, and an uncertain future? Most of the partnered women worried about how their diagnosis would affect their relationship and their families. Would their partner be able to accept and love their new bodies? Was their relationship strong enough to withstand everything that comes with a cancer diagnosis or would they be left also dealing with a breakup, separation, or divorce? No matter what our relationship status was we shared many of the same concerns and uncertainties.

My fiancé and I reconnected while I was going through radiation, having finished my mastectomy surgery and chemo treatments. We had dated in college and for a short time afterwards. When he heard of my cancer diagnosis, he reached out to me and offered his support. He had suffered a tragedy of his own at a young age and had nearly died, sustaining a spinal cord injury, which left him nearly paralyzed and having to relearn how to walk. This accident changed his life forever and he still deals with its effects. He intimately understands medical trauma and the ways that an accident or diagnosis can impact someone’s life, physically, emotionally, and financially. I am incredibly grateful to have a partner who understands this. He has helped guide me though some of my toughest struggles, using his own experience as an example and with constant reassurance that it does get better. Enough time has passed since his injuries that we do not have the burden of two medical debts to tackle. We try to take each challenge as it comes, and he has remained a source of positivity through it all.

I will probably always worry that my fiancé is getting the short end of the stick in this relationship. That somehow my fertility issues and the unknown about my future health make me defective and less valuable as a partner. I will probably always have questions and insecurities. How can he love and accept my changed body while I am still struggling to do the same? Does he think these scars are as ugly as I do? He knows I am working through an incredible amount of change and that insecurities come with this. One of the most difficult worries I have is about the risk he is taking investing in a future with me when there is a real chance that future could be cut short. I think about the heartbreak and powerlessness of choosing a life where you could have to watch your partner die from a horrible disease. None of us know what the future holds, but it is different when you have survived a life-threatening disease. In sickness and in health takes on a very real and different meaning.

Understandably, the ​National Survey of Fertility Barriers​ report (2010) suggests that women who suffer the dual traumas of a cancer diagnosis and involuntary childlessness are likely to have “higher rates of depression and lower life satisfaction” than women who have not experienced cancer diagnosis and treatment induced infertility. Though you are only just beginning to come up for air from your diagnosis, treatment and survival, how are you approaching self care in terms of mental and spiritual health while also dealing with the psychological impacts from both circumstances?

It has been difficult to prioritize self-care after treatment. I was lucky enough to have a full-time job with benefits when I was diagnosed but the professional pressure to remain relevant and present even with a cancer diagnosis has been overwhelming. I think it is hard to comprehend just how difficult it is to go through something like this if it has not happened to you or someone close to you. I constantly heard people around me say that I was lucky that I was young and that it would make having cancer easier. The reality is that having cancer is difficult no matter how old you are and a diagnosis at a younger age often comes with a poor prognosis. 

Once I had finished treatment and my hair had started to grow back, people were quick to comment about how well I looked and wasn’t I glad that it was over. In reality I was and still am processing, learning, suffering, grieving and struggling. Just because my hair grew back doesn’t mean that my journey with cancer is over. I still have reconstructive surgeries, chemically induced menopause, and a list of prescription drugs with awful side effects to deal with.

We do not live in a culture that prioritizes health, let alone mental, spiritual, and emotional health. Our value to society is often determined by productivity and dollar signs. A cancer diagnosis and treatment plans question this societal value at its core. It is messy, scary, and expensive as hell. It demands that you focus all your being on survival, not on what you can produce for society or your employer. During treatment I felt that I had permission to be selfish and to focus on my mental and emotional health. I found weekly therapy appointments and support groups helpful. They allowed me to process what I was experiencing and the feelings that came with it. It helped me to find connection during one of the hardest times of my life.

What, if anything, do you need from women who are mothers?

A lot of friends and other women in my life are beginning to start their families and have their first children. It brings me so much happiness to watch the experience change them and hear about their dreams for their children. It also brings up a lot of sadness and grief for me. It is something I’m conscious of and working through, but I have also learned that there is no timeline on grief. If anything, I would ask that women who are mothers or about to become mothers check in with their friends that they know are struggling with fertility issues. I think women with fertility issues often don’t feel that they have space to talk about their experience or share their struggles. Just as we share our joy over conception, we should share our pain and loss surrounding infertility.

What, if anything, do you need/want from women who are child free by choice?

Everyone’s situation and circumstances are different, but we should remember that choosing to be child free is very different than dealing with infertility issues. One woman may be celebrating her choice to live child free while another might be mourning the loss of her fertility. I think women in each circumstance can learn a lot by having sensitivity, respect and understanding for each other.

“Women without children will never know what ‘love’ really is.” Discuss.

This question hurts my heart. Its hard for me to imagine that someone would ever feel entitled to make that call based off a woman’s circumstances or decision to live child free. I do not believe that my inability to have a child makes me incapable of understanding or experiencing love. I think our ability to love is part of our humanity and connection to each other. It’s something we are all born with that can not be taken away because we are childless.

“Having it all must include children.” Pro or con this ideology?

Con. Who the hell decides what “having it all” means anyway? Everyone has different values and ideas about the way they would like their life to be. What brings fulfillment to my life may not bring fulfillment to yours. I think this idea of having it all really should be left to the individual to decide what that means to them. That is if having it all is even something attainable? I think most people will always have a desire for more or to change their circumstances after attaining a long sought-after goal. The idea of having it all can set many people up for a lifetime of disappointment rather than enjoying what they do have in the moment.

“All women without children are selfish.” True or false? “All women are mothers.” Pro or con this ideology?

The collective idea that a woman is selfish if she does not become a mother is so subtle and engrained in our culture. We are raised as little girls to play with baby dolls, mother our toys and pets and to always be taking care of something other than ourselves. This learned behavior of nurturing or care taking often bleeds over into women’s relationships with their partners. We share a collective belief that women are naturally nurturers and care takers. It makes me wonder what the world would look like if, from a young age, women were encouraged to be who they are without being labeled as nurturing or selfish.

I recently discovered that I am concerned about being perceived as selfish because I do not have children. My fiancé and I are about to move to a new state and are looking forward to making new friends and building a community. I thought about what people might think about a couple at our age without children. That it is not always comfortable or appropriate to ask these types of questions and that people make their own assumptions. 

It made me think about the assumptions and judgements I have made about others based on their circumstances and how harmful and hurtful that can be. It has changed my perspective and made me more conscious and less quick to judge others. I’m working on accepting the things I do not have control of, but I do have control of the type of people I allow into my life. People who judge me as selfish because I do not have children are not the kind of people who have a place in my life.

“All women without children live stress free lives.” Pro or con this ideology?

Con. The way stress is perceived varies from person to person. What may stress me out may be someone else’s idea of a great time. I do think that women who have a family experience unique stressors that do not apply to women who don’t have children. At the same time these are stressors that should be considered when making the choice to have a family. Stress finds a way of inserting itself into our lives regardless of the choices we make and is an innate part of life. Even as we seek out ways to reduce stress something out of our control finds a way to insert stress into our lives. Its something that is unique to every person’s life and is based off our choices, situation and at random.

“All women without children want to be an ‘Auntie.’" Discuss.

This is a personal choice that needs to be made by each child free women. I know some child free women who have no desire to be around children and do not want to nurture a child in any form. I also know child free women who love the opportunity to play auntie to their friends or sibling’s children. Neither woman’s choice is wrong and we should be allowed to make that decision for ourselves. Personally, I fall somewhere in between. I have no desire to play auntie to everyone’s child but would like to develop individual relationships with the children I feel connected to in my life. I’m excited to watch these children grow up and see who they become. I am also excited to see how my relationship with these children develops and what kind of role or figure I become in their lives.

RESOURCES:

As treatments for breast cancer improve, a large community of young survivors is forming, and oncologists must help these patients to live their cancer-free future to the fullest. Quality-of-life issues for these survivors, such as fertility, are gaining exposure in clinical and public realms. The exciting field of oncofertility offers hope for young patients with cancer through a better understanding of the causes of cancer- and cancer treatment-related POF and the development and refinement of fertility preservation options.

Additional recommended resources for cancer patients hoping to be parents can be found at www.youngsurvival.org, www.myoncofertility.org and www.fertilehope.org

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