Debbie Legault is the mother of a young woman who was diagnosed with breast cancer at 27. Debbie chose to share the experience of being a full-time caregiver to her daughter during treatment in a blog called “Mom … It’s Cancer” and published the compilation of those thoughts in book format when active treatment was completed. Legault soon realized that the end of treatment was actually just another beginning and continues to write about the realities of survivorship both from her perspective as a caregiver and from her daughter’s point of view.

Debbie Legault

Debbie Legault is the mother of a young woman who was diagnosed with breast cancer at 27. Catch up on 

When my daughter was diagnosed with breast cancer at 27, I tried to find resources for mothers like me with twenty- or thirty-something-aged children in the same boat, but there was almost nothing. I wholly believe in peer-to-peer support, and I was searching for people who would understand what it was like to sit in treatment rooms week after week and see no one who looked like me. Despite my talent for Google searches, I only found one group, but unfortunately, it was not a good fit for me for a number of reasons.

Cancer is an isolating experience for both the person with the diagnosis, as well as the care providers in their lives; not finding a group of my actual peers made me feel even more alone. It was when I turned to social media that I finally found a place where I felt I belonged and heard, and it has been a lifeline to me ever since.

It may be hard for some people to understand how close you can feel to people you likely will never meet in person. Before my venture into this sphere, I wouldn’t have understood it either. It can also be hard to fathom how you can grieve and worry over someone whose life you only know from reels and 280-character posts.

Many of my social media friends have metastatic, or stage 4, cancer. They are on their first, third or sixth lines of treatment or even in clinical trials. They are in No Evidence of Disease (NED) status, lying on beds of nails awaiting the latest scan results or bloodwork to see if they will have to go back into treatment. They are people who will probably never, ever ring the bell.

You never know why they stop posting. It may be that they are taking a mental health break and stepping away from social media for a while, which can be a remarkably wise step. They may be on a wonderful holiday celebrating the end of treatment or a good scan result or just because they want to.

If their family members have been brought into the social media discussion, they will often be asked to let people know on the cancer patient’s accounts what’s going on. If it’s news of someone’s passing, when they do, it’s like an open mic memorial service as their online friends talk about their value to the community and how much they will be missed. It’s an unknown but comforting hand on the shoulder of their loved ones expressing sorrow at their loss. Despite their personal struggles, their social media friends put their own stuff aside and reach out to offer solace.

This is a group of peers walking the same path and knows that a hand has let go but the circle will close again once the breath of acceptance has been taken. Even though they know the next hand might be theirs and so that breath needs to be a lot deeper and can be harder to let back out, there are still there.

My daughter is NED today, but the specter of return is always hovering in the background, and scans and appointments still appear on her calendar six years after her diagnosis. I have tried walking away from cancer, but I can’t, because my child can’t. Cancer is a never-ending story, and it sucks, and the social media cancer sphere helps me cope with that. I am grateful to be a part of them, and for them to be a part of me. Losses and all.

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A mother shares her experience of seeking support after her daughter's breast cancer diagnosis at 27. Traditional peer support groups were lacking, leading her to find solace in social media communities. These online connections provide emotional support, despite the physical distance, and help her cope with the ongoing challenges of cancer. The social media sphere offers a sense of belonging and understanding, even as members face the harsh realities of metastatic cancer. Her daughter's current No Evidence of Disease (NED) status brings hope, but the fear of recurrence remains.

I stay in the cancer social media world because it helps me cope, even when friends disappear and I’m left wondering if they’re resting, retreating or gone.

How I Manage When My Social Media Friends with Cancer Disappear

My daughter, who was diagnosed with triple-positive breast cancer in 2019, is alive today because of science. Researchers created projects to investigate the impact of drugs on cancer cells, engaged brave souls to participate in clinical trials to test their efficacy and, by doing so, came up with chemotherapy medications that killed my child’s cancer. My debt of gratitude to everyone involved in this process cannot be measured.

My mother taught me that there are three things you don’t talk about at gatherings: religion, how to raise other people’s children and politics. I have taken that to heart and rarely, if ever, engage in those subjects when I write for CURE. However, in honor of my daughter’s presence on Earth right now, there have been recent developments that will take me right up to the edge of one of those topics today.

Research is expensive, and most research projects rely on grant funding to pursue their ideas. When the Cancer Moonshot was launched, my hope for a cure in the event that my child’s cancer recurs skyrocketed because it would mean more funds and attention being paid to the development of visionary treatments and diagnostic tools. Since most people will either be directly or indirectly affected by cancer in their lifetimes, I was sure everyone would be able to understand how important this work is and get behind it 100%.

The National Cancer Institute (an agency under the National Institute of Health) and its partners were responsible for studying the effectiveness of tamoxifen and Herceptin (trastuzumab), both drugs that my daughter was given as part of the breast cancer treatment plan to prevent recurrence. Her oncologist called Herceptin a “game changer” in his management of HER2-positive breast cancer and told her that without it, she would likely have seen her back in his office within 18 months because her cancer had recurred. As I mentioned above, going from theory to application includes the “tested on humans” part, and at some point, women with HER2-positive breast cancer put their futures in the hands of scientists, and they lived longer because of it. Despite recognizing the impact, the knowledge that the recent suspension of research funding would bring this process to a halt was overlooked. Consequently, the hopes of those relying on a clinical trial for a chance to survive their cancer were left in limbo.

These are not nameless, faceless beings on a list. These are someone’s mother, father, brother, sister or child. By a stroke of a pen, their lives were thrown into chaos. Some were potentially on the very edge of qualifying for a clinical trial because of the size of their tumor or results of bloodwork, and even a short pause could have meant that they would no longer qualify, that what could be their last chance would be taken away. I cannot even begin to imagine the despair and shock that these families experienced. Patients with cancer lose control over so many aspects of their lives, and this was one more decision taken away from them by someone they will never meet.

It seems to me that some things should be protected from the changing political landscape, and this is one of them. When lives hang, quite literally, in the balance, it should be understood that regardless of individual beliefs, we can all get behind the work of saving people from death by cancer. My child being able to walk into my arms when she comes to visit is a good thing. Watching her laugh at her toddler’s antics is a good thing. Seeing her dad’s pride in her accomplishments is a good thing.

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The narrative underscores the critical role of scientific research and clinical trials in advancing cancer treatment, exemplified by the author's daughter's survival from triple-positive breast cancer. It highlights the importance of funding, such as the Cancer Moonshot initiative, in supporting innovative treatments and diagnostics. The suspension of research funding is criticized for jeopardizing patients' access to potentially life-saving clinical trials. The author argues for the protection of cancer research from political influences, emphasizing its universal benefit and the profound impact it has on patients and their families.

Cancer research saved my daughter’s life, and despite setbacks, we must support these efforts to ensure more lives are saved from cancer.

Triple-Positive Breast Cancer Research Saved My Daughter’s Life

Christmas is my favorite time of year, but when cancer came to town it cast a long shadow.

Christmas is one of my favorite times of the year, full of joy and traditions and family fun. This year I will be able to look across the table over bowlfuls of stuffing and mashed potatoes and gravy and see my daughter Adrienne smiling and laughing with us. It is an irreplaceable gift to have her here. Mostly because five years ago, I didn’t know if she would be.

Christmas 2019 was a rough one. Adrienne finished chemotherapy treatment for breast cancer in October of that year and she was a month out of surgery to remove her lymph nodes when we went to be with the rest of the family to celebrate. Her hair was a shadow on her head, her eyelashes and eyebrows still a hoped-for return in progress. She was staring down six weeks of radiation after the holidays and was trying very hard to enjoy herself, but I could see it every time I looked at her.

The face of someone who was experiencing all the emotions from the nightmare of five months of chemotherapy that she hadn’t been able to let in until it was over.

When she was in the thick of it, she was completely disassociated from the emotional context of what she was experiencing. I am not sure how anyone would do it without putting a lid on the fear and despair and grief. From the onset of diagnosis, her treatment path had been fast and furious. It felt like she was in the saddle of a runaway horse holding on for dear life, so she didn’t have time to feel all the feelings. But the feelings were big… VERY big… so once they started to push past the barriers, she had put in place she got bucked off of that horse into a dark abyss.

She had been very careful during treatment not to let anyone else other than me see just how bad it was. When we went for visits, we only went if it was an off week because she felt a little better and could manage the hour-and-a-half car trip and spending time with her young niece and nephew. She would play games and take them to the park across the street and for them, it was just their regular Auntie A. Even if it was exhausting, she could handle the fatigue until we got back to her apartment and then she would crash, hard, for a couple of days to recover.

When we were there at Christmas, though, there was not only the physical fatigue but the emotional exhaustion of suppressing her feelings for months. She needed to hide but there was nowhere to do it. She needed to let some of it out, but she was afraid if she let down her guard even a little bit she’d be crushed by the weight. She had needed some “normal” but as we baked and joked and wrapped gifts, she realized that she would never feel normal again.

And she was still so good at it that no one but me could see it. 

They would see her pour herself a drink before lunch and just think she was celebrating. They would see her curled up under a blanket in the corner of the couch and think she was just cold. They would watch her head upstairs early to bed and think she was just a little tired. They would look at her smiling face and not see the blank look in her eyes or the effort it took to keep up the façade.

One of the things I am most grateful for this holiday season is that slowly but surely the light has come back into her eyes. There are still times when the darkness comes over her and she needs her mom to help her get through the day, but those times are much less frequent than they used to be. There is no forced laughter, no blank stares. There is genuine joy and wonder and connection. 

For those of you still in the darkness, my Christmas wish for you is that you read this and feel seen, that someone out there knows how very hard this is for you. I wish you to know that while it will always be with you it is possible to move out of the nightmare into a happier place. I wish you to get a glimpse of the idea that you can hold space for your grief and still feel joy.

Most of all, I wish you as Merry a Christmas as your current life situation will allow.

Cancer's impact on family dynamics during the holiday season is profound, as illustrated by a mother's reflections on her daughter's breast cancer journey. The emotional toll of treatment, including chemotherapy and surgery, often leads to suppressed feelings and a struggle to maintain normalcy. Over time, healing and emotional recovery can bring back genuine joy and connection. The narrative emphasizes the importance of acknowledging the emotional challenges faced by cancer patients and their families, while offering hope for a brighter future and the possibility of experiencing joy alongside grief.

This Christmas, my wish for all of you is that you read this and feel seen, that someone out there knows how very hard this is for you. 

Cancer Memories of a Christmas Past 

On October 22, 2024, CURE published an article entitled, “Identifying Cardiovascular Risk in Cancer Survivors,” and the title grabbed my attention. When my 27-year-old daughter Adrienne was diagnosed with breast cancer in 2019, I thought that typical side effects of treatment — nausea, fatigue, hair loss and skin damage from radiation — would be the attention of all of our worries. Little did I know what the treatment could do to her heart.

Adrienne’s cancer was triple positive, meaning it was hormone and HER2 driven. Adrienne’s oncologist called Herceptin (trastuzumab) a game changer when it came to treating HER2-positive breast cancer. The drug’s ability to block cancer cells from receiving the chemical signals that tell them to grow had given him a powerful tool to prevent recurrence. He said before it came along, he typically saw HER2-positive patients back in his care within 18 months. We were happy to know that Adrienne would be receiving Herceptin as part of her treatment plan.

, and in our family, heart disease is the genetic gift that just keeps on giving. The potential for damage became an even greater concern when a mother who had been communicating with me regarding her daughter’s breast cancer diagnosis, shortly after Adrienne was diagnosed, told me that her daughter had died from heart complications directly related to receiving the drug.

Adrienne was regularly monitored by a cardiology team throughout the course of Herceptin. I remember sitting there waiting for her cardiologist to have a look at her electrocardiogram, hoping my daughter would not be presented with an impossible choice: protect your heart or protect against recurrence. I made her walk every day since the doctors said regular exercise was a way to help. There was a set of stairs between two levels in her neighborhood, and as her fatigue slowly but surely meant that three or four stairs at a time was all she could do before resting, my fear increased in tandem. In the end, luck was on our side, as her heart was not immediately damaged by Herceptin, and she was able to finish the full course. Also, I am sure that her body’s ability to tolerate the drug has contributed to her still being status NED (no evidence of disease).

But that’s not the only time cancer treatment has caused her heart issues.

During the six weeks of radiation treatment, Adrienne had to do a breath-hold to get her heart as far away as possible from the beams directed at her left breast. This technique is intended to reduce the side effects on the heart, but the intense radiation still damages the vessels in the chest, which can lead to major long-term heart complications. Even if it happens 20 years down the road, my daughter was 27 when she underwent treatment, so she will only be 47 if the damage manifests as heart disease. Couple that with family history, and there is too much potential that the treatment intended to save her life will take her early.

Adrienne’s first chemotherapy drug was doxorubicin, which is “affectionately” referred to as the “Red Devil” by patients with cancer. On top of the other ugly side effects like nausea, vomiting, hair loss and mouth sores, this drug can cause acute heart failure early in treatment or heart damage up to eight years after treatment has ended. Again, because she was 27 at her breast cancer diagnosis, this could mean that Adrienne could experience treatment-related heart complications at a very young age.

Because of the hormone-positive breast cancer diagnosis, Adrienne needs to take two different drugs to suppress hormone production in her body for seven years to help prevent recurrence. Multiple studies have shown that these drugs can raise the risk of heart attack and stroke. So, on top of the potential for tissue injury from radiation, long-term heart damage from chemotherapy and issues related to a year of Herceptin, the drugs that she takes to reduce her risk of the cancer coming back combined with her family history risk means that every time she takes a pill in the morning for the next five years to extend her life, she will wonder if it will contribute to ending it early.

Cancer treatments, while life-saving, can pose significant cardiovascular risks, particularly for young survivors like Adrienne. Herceptin, a key drug for HER2-positive breast cancer, can lead to heart complications, necessitating vigilant cardiac monitoring. Radiation therapy, despite techniques to minimize cardiac exposure, can still cause long-term heart damage. Doxorubicin, another chemotherapy agent, is notorious for its potential to induce heart failure. Hormone-suppressing drugs, essential for preventing cancer recurrence, further elevate cardiovascular risk. These cumulative effects underscore the need for comprehensive cardiovascular care in cancer survivors.

My daughter faced the difficult decision of balancing the potential benefits and risks of cancer treatment, including the long-term heart complications associated with Herceptin.

Debbie Legault

How I Manage When My Social Media Friends with Cancer Disappear

Triple-Positive Breast Cancer Research Saved My Daughter’s Life

Cancer Memories of a Christmas Past

The Never-Ending Cycle of Cancer: Treatment Versus Long-Term Health

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