The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Lauren's Story.
Lauren Hindman is a patient in the Center for Young Adult Colorectal Cancer at Mass General Cancer Center.
Dr. Motaz Qadan performed her surgery, and together they have navigated through this disease and the impact it has had on Lauren and this unique patient population.
"There is a lot of uncertainty. I was 35 when I was diagnosed…that was the toughest part - figuring out how do I make my life still happen while dealing with this diagnosis."
Tell me about your diagnosis.
Lauren: I was diagnosed at Cooley Dickinson Hospital in Northampton, and my first surgery was there. I had a colon resection. Initially I was stage 3, and another seven months before the liver mets popped up. My oncologist Dr. Howard referred me to Dr. Qadan at the Mass General Cancer Center in Boston.
Dr. Qadan: The first thing that we always do with a patient referral is review all the charts and information that we have. If I'm not mistaken, the tumors were restricted to the right side of Lauren’s liver, and I remember thinking that Lauren would be a good candidate for liver surgery here. Lauren was an ideal patient in a non-ideal situation, in that she is healthy, she's young. So therefore, whatever stressor we put her through, she should be able to recover and that's exactly what she did. She made a dramatic and fast recovery.
Lauren: You figured I would bounce back quickly because of my age, and I remember coming back for my two weeks post-op visit, and I was up and about, walking around. I think I was in the hospital maybe six days, but once I was home, aside from a little bit of discomfort, I was kind of ready to get back to regular life.
What was it like being so young and getting this diagnosis?
Lauren: There is a lot of uncertainty. I was 35 when I was diagnosed. I remember specifically when I had the recurrence thinking, ‘OK these are the three scenarios right now: I'm either going to go straight to surgery, or chemo first and then surgery…what does this do to my PhD program?’ I was in grad school and to some extent I just focused on that because it was easier to focus on the thing that I can control. I would focus on, 'How do I finish grad school while going through cancer treatment, going through surgery? How do I make everything work?' And that was the toughest part; it's figuring out how do I make my life still happen while dealing with this diagnosis.
Dr. Qadan, how do these early onset diagnoses’ change your perspective?
Dr. Qadan: First and foremost, we're human beings, and we're impacted by everything that we see. I know how big the operations that I do are, and I know how that impacts the patients. It does have an impact on me personally. Lauren is embedded in my memory, and I'll always know Lauren. Lauren was a young person just trying to navigate through her studies and young life. We are affected tremendously by cases that we see like this. The sad part of this is that we are seeing a lot of this now. There's just a huge spike in the number of cases of colorectal cancer and we're seeing it more and more in younger patients, so much so that we started this program [Center for Young Adult Colorectal Cancer]. Unfortunately, there's no shortage of patients coming in with this disease. Ultimately, we're just trying to get patients back towards a state of normalcy again. That's why we're focusing on things like trying to screen younger patients earlier. My father died of colorectal cancer. He still got surgery and did great and we got him through an incredible eight years of life, but my battle with colorectal cancer is a highly personal one.
Lauren, what is your relationship like with Dr. Qadan?
Lauren: If you told me three years ago that I would still be able to contact my surgeon years after the surgery, I wouldn’t have believed you. Right from the get-go you were drawing a picture of my liver for us, explaining it in a way that made it very understandable…especially for my husband. Having the cancer myself, I'm engrossed in knowing about it. I’m in these online support groups, reading about it…I'm engrossed in knowing about it. For my husband, having it broken down in that way was great. And post-surgery having somebody to check in on me, I saw you every day.
I found out that I had a recurrence one week before I went to defend my dissertation proposal. I basically spent the seven months I had off of treatment doing all of this work to get my dissertation ready to start, and then just a week before I was supposed to propose it -- it just all came crashing down. Fortunately, I had a really supportive mentor in my program and a really supportive department, so I was able to push back my graduation date by a year, but emotionally it was tough trying to process not just the stage 4 diagnosis, but also kind of that stoppage of everything I've been working towards. I was navigating how to tell my students what was going on. We were heading into spring break, and at that point there was still a chance that I was going straight into surgery, and I was thinking I might be having surgery before the students are back from spring break, and I'll just be gone.
Did your diagnosis change where you saw your career going?
Lauren: I think yes and no. Even though I pushed things back, I never really stopped. I finished the grant proposal during my first round of chemo, I still went on and presented at conferences a month before surgery. I think it definitely changed the way I thought about looking for a job post-graduation in terms of what type of school I wanted to be at. I knew that I didn't want to go to a school that was going to be super focused on measuring my worth based on quantitative measures, I wanted a place that was going to be a little more flexible and a little bit more open. It ended up working out that I got to stay here in the Boston area. I had that comfort of knowing that my medical team is here.
Dr. Qadan: It's amazing when you hear stories like this; the patients are grateful to us, but we're actually grateful back to them because we live these journeys with them. We're inspired by the determination and the motivation and the ability to get up and keep going. It shifts your focus in life onto the right things. These quantitative measurements of everything that we worry about are meaningless whereas quality of life is much more important. There’s nothing more grounding for a physician and a surgeon than to see their patient doing well, you kind of live that by proxy almost. We are lucky because we get to see that and learn that and live that being inspired.
What was your support structure like?
Lauren: My husband and I moved to Massachusetts for my PhD program about a year before I was diagnosed. Fortunately, everyone was very supportive in the program that I was in. After my liver surgery with Dr. Qadan, for a month straight my advisor set up a trade and we had food delivered to our house every day. That was really helpful and important. Right after diagnosis I was introduced to a patient-driven online support group called COLONTOWN that's really focused a lot on the education and science, combining hope and a support structure, and empowering patients to advocate for themselves. While I was awaiting clearance for the liver surgery, I attended an Empowered Patient Leader training that happen to be in Boston and learned how to become your own empowered patient leader; not so much for myself, but for other patients, particularly ones that aren't fortunate enough to live in a city where we have such great care like we do in Boston. A lot of our focus is on reaching those patients to get them into our community so that we can get them that information.
Do you have any advice that you would like to give to somebody who's just about to go through this or something similar?
Lauren: I'm two years post my first surgery, but really I'm only about five months past my last surgery. I still feel like I live three months at a time between scans. I think I'm always constantly finding that balance of being optimistic and positive about the future, but also living between scans. You have to adjust and accept and learn to be OK with writing things in pencil. You can plan past those three months as long as you kind of have that mindset of, ‘I understand that that's in pencil and I'm not going to be devastated if I have to change that plan,’ and that was hard for me to figure out because I like to plan and I like to I like to know what my next five years are going to look like. Being involved in COLONTOWN and volunteering does give me a sense of purpose. It's kind of cathartic for me to be able to pass that knowledge on to other people…I’m not holding that whole experience inside myself. I see the difference that [being involved in COLONTOWN and doing my own research] makes. I came into this in such a place of privilege of having good health insurance and having the fortune to be in the state of Massachusetts.
There was a woman I had met before I moved to Massachusetts who introduced me to COLONTOWN. I think she was 40 when she got her diagnosis. I worked for a hockey team down in Texas and she was one of our fans. She was one of the first people who reached out to me. She unfortunately passed away right around the same time that I finished my last chemo treatment; that was really hard. There was physical distance between us for the first two years or so of my diagnosis, but she was the one who was always there to talk me through things. The other person that I've become the closest with, I sat next to her during Empowered Patient Leader training, she was so quiet and seemed really overwhelmed, and now she's the most bubbly person and she's now in charge of this entire non-profit group. We were two of the younger ones. She was somebody who I could connect with through that process.
We need to take this disease seriously. I went to my primary care doctor and my only guess was that I had some kind of IBS. When my primary care doctor found out it was cancer, she was shocked; she never would have thought to consider that I needed to go through that testing. I think the more that's visible through having more centers like this [the better]. I'm so grateful that I've been able to get top care here right here in Boston.
There is a lot of uncertainty. I was 35 when I was diagnosed…that was the toughest part - figuring out how do I make my life still happen while dealing with this diagnosis.
This interview was conducted in April 2022 and has been edited for clarity.
Kent thought seeing white spots and feeling dizzy was a result of moving his full-time teaching job online during the pandemic. Now he believes working remotely saved his life as he was able to get diagnosed quickly with a glioblastoma and have treatment at Mass General Cancer Center.
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