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Psychotherapist and patient advocate Sara Rands discusses her article “Early-onset breast cancer: a survivor’s story.” Sara shares her harrowing journey of finding a lump at age 32 despite having no family history and receiving a stage 3C diagnosis. She highlights the terrifying reality that mammograms often miss tumors in dense tissue and challenges the medical community to address why young women are frequently dismissed or misdiagnosed. The conversation addresses the rising incidence of early-onset disease, racial disparities in mortality rates, and the desperate need for research focused on younger populations. We must demand better screening tools to ensure mothers get the chance to see their children grow up.

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Transcript

Kevin Pho: Hi. Welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome Sara Rands. She is a psychotherapist and patient advocate. Today’s KevinMD article is “Early-onset breast cancer: a survivor’s story.” Sara, welcome to the show.

Sara Rands: Thank you so much for having me, Kevin.

Kevin Pho: All right. Let’s start by briefly sharing your story. Then we will jump right into your KevinMD article for those who didn’t get a chance to read it.

Sara Rands: Sure. Twenty years ago, I got this horrible news out of the blue. I had found a lump. I wasn’t worried about the lump. I had had some benign ones before, and I was only 32 years old. I figured I had nothing to worry about. But then I got the phone call that changed everything. My children were seven, five, and three, and it just took over all of life for a while. I went through all the treatment: the surgery, the chemo, the radiation, the hormone things, and the reconstruction.

I was really surprised to learn something after all of that aggressive treatment. I had the courage to ask my oncologist what my numbers were, and she asked if I wanted to know. It was that I had a 50 percent chance of a recurrence, which I was really confused about. I thought I had done all this aggressive treatment to prevent this and that I was young. But I was really surprised to learn that young cancer is more aggressive. That is part of the purpose of my article: to advocate for screening methods for young women because right now they are really overlooked.

While breast cancer is uncommon, it is not all that rare. It happens to about one in 200 women in their thirties. Wanting to shine a light on this to help shift research priorities is my hope.

Kevin Pho: Before we talk about your article, how are you doing today?

Sara Rands: I just passed my 20th anniversary of the diagnosis, and life is beautiful. I am very healthy and got the chance to raise my kids, which was the one thing I was hoping for most of all. This anniversary, more than any of them, has really been impactful and touching to me because I got what I hoped for most of all. As I was taking my walks during treatment, I would dream about what I wanted most of all. That was to be looking in the rearview mirror having had the chance to raise my kids to adulthood. I got that right. I just feel so grateful and lucky.

Kevin Pho: As you did your research regarding breast cancer screening guidelines, what are they currently listed at? At what age are women typically screened for breast cancer?

Sara Rands: Over the past years, it has gone back and forth between 40 and 50. Right now they are recommending mammograms at 40, so at the younger side of things. But as I understand it, the problem is that mammograms don’t do a good job of detecting breast cancer at a screening level in denser young breasts.

As a result, we don’t screen younger women. My hope would be if mammograms aren’t it, maybe something else is. I think that is why young women aren’t being screened: just that our current technology doesn’t do a good job of it. So why not find a new way? Maybe there is research going on and I don’t know about it.

Kevin Pho: When you talk to health care professionals and your oncologist about your story regarding being diagnosed with breast cancer in your thirties, what are their responses in terms of their thoughts about the current screening guidelines?

Sara Rands: I have been fortunate that I haven’t had to go to my oncologist. I have been healthy. As I read the numbers, this happens to about one in 200 women in their thirties, so it is uncommon but not what I would call rare. I see these stories in the obituaries and in my local neighborhood. Every time I log into my survivor internet support forums, it seems to be the second or third leading cause of death for women in their thirties. But yet there is no screening.

I thought about family history. I didn’t have a family history, but it turned out that was not uncommon. That is the way it is for 80 percent of women under 40 who are diagnosed. They find their cancer themselves. My hope would be that 50 years after Susan G. Komen died at 36, we would have found something that could have saved her. But we still don’t have an early detection mechanism.

Kevin Pho: In these patient support forums where a lot of women are being diagnosed with breast cancer at an earlier age, are they all pushing for an earlier start to screening when it comes to breast cancer? Or are they looking for better modalities?

Sara Rands: That is a good question. I think most people are just in the thick of their own story and maybe not zooming out to the bigger picture. That would be my hope: that we have some way of finding this a little earlier so people aren’t as late diagnosed. My cancer spread to stage IIIC, and I had about 14 positive lymph nodes. I feel very fortunate that I have been able to meet the milestone of still being here 20 years later.

Kevin Pho: As you think back to your journey, you have obviously had many interactions with the health care team. I like to ask patients who have gone through such a journey: What are some of the things that the health care team did well, and what are some of the things that you thought could improve?

Sara Rands: I felt very fortunate in my treatment team. They really looked at me as a human being and supported not just the medical stuff, which was excellent. I got excellent medical care from the oncology side of things, but they also saw me as a human being and as a unique person. Of course, if you had to choose one, I would hope for the good medical care, but it was lovely to get both and that human-to-human encouragement during such a difficult time, especially from the chemo nurses. Sometimes the radiation techs were a little more technically oriented, and it seemed like some of the human skills were a little bit less there.

What could improve, at least for me, was some of the communication about reconstruction. I wasn’t informed about the risks of some of the reconstruction, and I kind of got pushed into things I didn’t want. I wish that we had some way of having counselors help people look at all of their options for their specific diagnosis and help them compare things like aesthetic flat closure and prostheses. These were things I didn’t know about as other options that were less risky.

Kevin Pho: Has anything changed in the years since you had your cancer journey? You mentioned it has been about 20 years.

Sara Rands: I am sure there have been changes, but not some of these core things that would really move the needle, like early detection mechanisms. On reconstruction, some of the core things like reconstruction can do a lot of things aesthetically in a best-case scenario (which was not what I got), but it doesn’t replace the function or sensation. There might be rare cases where we are able to do that maybe on the cutting edge, but I think that is still not the typical case.

Kevin Pho: You were in your thirties having this very severe cancer diagnosis. You had three young children at the time. Take us a little bit back into that emotional mindset that you had. What were some of the things that were going through your mind during those years? It must have been incredibly difficult both emotionally and medically for you.

Sara Rands: Absolutely. One of my three-year-old’s first memories was the day that my hair started falling out. I happened to be near a toilet and disposed of some of my hair through the toilet (which I don’t recommend for the plumbing). Later, I was joking about, “Oh, well, should I comb my hair now?” as I was combing her little hair. She said: “No, you can’t. You don’t have hair. You put your hair on your potty and you flushed it.” So this was one of her first memories of me.

My five-year-old was right about this height, and he would come in to hug me, and these expanders were rock hard, so he would hit his head on my body. My seven-year-old wrote me a “Get Well Soon” card that said “Do Not Did” because she didn’t know how to spell “Die.”

I was homeschooling my children at the time, so we had to totally pivot our family way of life and bring in this army of support people. My mom came up to help caretake these young children. I feel very fortunate in having all the support that I did, but it just really turned our world upside down. My one big hope was to be able to be the one to raise them. But the odds of that were a lot different than they were before the diagnosis. I would take these walks and I would just dream of how long it would take for me to be able to get that goal. I just feel so lucky to be able to have gotten that right. But my hope is that shouldn’t be just luck. I would hope that we would have systems that would help support that.

I would make these deals with God: “If I get to the age where I am now, I wouldn’t complain.” Because it just is such a different thing. Death at age 52 is also tragic. I love my life, and my people would miss me. But at 32, it was just such a fundamentally different thing. It would have caused this catastrophic impact, this intergenerational trauma. Right now the systems are built to support people my age and not this other case where the impact is so much greater.

Kevin Pho: When you say that the systems aren’t built to support those who are at an early age and the impact is greater, what more would you like to see done?

Sara Rands: I would like to see some sort of screening mechanism. Even though mammograms don’t do that well (they say that the dense breast tissue is white on the mammogram and so is the cancer; it is like finding a polar bear in a snowstorm), if that is not the one, then maybe there are other methods. I have no idea what, but that would be the conversation I would hope to have just so we could bring effective screening methods for younger women.

Kevin Pho: Now, if you were hypothetically in a room with those who set the policy guidelines, what would you say to them?

Sara Rands: I would say that even though breast cancer in your thirties or younger is uncommon among all cancers, it is still not what I would call uncommon. One in 200 is like a couple of dozen people in my high school graduating class. I would say that because the impact is so much greater and so many more life years are at stake, life years matter. My hope would be that we would have screening guidelines that would extend to younger women.

Kevin Pho: You mentioned in your patient support forums a lot of women are going through that cancer journey. You have already gone through that journey. What kind of advice can you share with these women who have received that unfortunate diagnosis at such an early age?

Sara Rands: Getting through the treatment is difficult, but I am really glad I was able to do it. What I was surprised about is that the most difficult part for me was grappling with that number afterwards, specifically that 50 percent number. That was after the parties were done, after I rang the bell, and after I had the support of the medical people. Then I was left to be at home all by myself with that scary number. That is more of a psychological impact, but I was really surprised that was the most difficult part for me.

There was something energizing about a fight and gathering your people, but then going home with that different lifespan was difficult for me to wrap my head around. I dealt with that personally by trying to conceptualize it with what I can control and what I couldn’t control. I was like: “Okay, I can control what I do today.” So I am living today. If I got the bad news, I would be satisfied and happy with the work I was doing at this time while trying to build the hope of the life that I do get to live now. Luckily I got Plan A.

Kevin Pho: As a psychotherapist, you certainly have that background in terms of framing that situation in that particular way.

Sara Rands: Right. That experience actually kind of led to psychotherapy. This has been a late-in-life career transition. My hope is to be able to provide some of this to other cancer survivors as well as just people living life. We all grapple with our mortality as we get older; I just got it a little younger than most.

Kevin Pho: We are talking to Sara Rands. She is a psychotherapist and patient advocate. Today’s KevinMD article is “Early-onset breast cancer: a survivor’s story.” Sara, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Sara Rands: I wanted to share this article to show this blind spot: When I was diagnosed at 32, I was outside of this screening system entirely. I had to find the cancer myself, and I just realized that my case wasn’t all that uncommon. I think of the metaphor of the drunk man looking for his keys under the streetlamp when he lost them at home. I feel like we are looking for cancer where we know how to find it and not where it actually is or where the impact is on people’s lives. I wanted to share my story to encourage research priorities to shift to the ones with the higher stakes, the more aggressive tumors, and the longer survivorship so it doesn’t have to be just luck that I get to be here and so that more young women can get the fortunate case that I have had.

Kevin Pho: Sara, thank you so much for sharing your story, time, and insight. Thanks again for coming on the show.

Sara Rands: Thank you so much, Kevin.