Shannon’s Stage 1 Lynch Syndrome Colon Cancer Story

Shannon M., who has Lynch syndrome, shares her stage 1 colon cancer story. Shannon details her experience with surgery (partial colectomy), importance of mental health care, and parenting with cancer.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Getting a cancer diagnosis can be overwhelming, scary, and anxious. You can feel like your world is caving in after one phone call.

What I would like you to know is that you are not alone. There are other people that are dealing with all the things that you are.

You are going to get through this. You’re resilient. You’re strong. Rely on other people. When you can’t take one day a time, take one minute at a time, because it will add up. You can get through this.

Shannon M.

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Diagnosis

What were your first symptoms?

My story might be a little different in that I didn’t have any symptoms. I didn’t know anything was wrong. I had just turned 36, and my daughter had just turned 1.

I was going in for a routine colonoscopy because I have something called Lynch syndrome, which is a genetic mutation that puts me at really increased risk for a lot of different cancers. Colon cancer is one of them.

I’d just had one a year before, but it was clear. I was pretty shocked to find out the next one wasn’t quite normal. The process went from there.

For whatever reason, my cell phone finally showed I had a voicemail, and it was from my surgeon. I knew in his voice, even though he didn’t say that the results had come back. He left his cell phone number for me. I called him from my parent’s landline at about 8:30, and he got the message and called me back about 9:00.

We had this brief conversation where he told me the biopsy had come back as colon cancer, and I’ll never forget. He said to me, “Shannon, I will always be honest with you throughout this whole process, and what I do know is that we can fix this. We have steps to take to get there, but we will fix this.”

I cried and told him that I trusted him and was happy that he was my surgeon. We left it at that. We agreed to talk about next steps on Monday.

»MORE: Patients share how they processed a cancer diagnosis

How did you break the news to your loved ones?

My dad had already gone to sleep. My daughter, Hazel, was asleep. My mom was in the kitchen, listening to my end of the phone call, when it came through. She knew.

Looking back, I was still in shock, but I never realized what that must have felt like for her. It’s probably harder than most of us realize to find out your 36-year-old daughter has just been diagnosed with cancer.

I called my husband, who was about 4 hours away, right after my surgeon and I hung up. He got back into his car and rushed to my parents’ [house]. I can laugh at this story now, but he got pulled over by a police officer on his way home for speeding.

He looked the officer in the eye and said, “My wife was just diagnosed with cancer.” The police officer said, “I’m so sorry. Drive safe, and have a good night. I wish you the best.”

We went back to Vermont the next day to process everything.

»MORE: Breaking the news of a diagnosis to loved ones

Did you keep your diagnosis private?

That has been a huge piece of my recovery. I was diagnosed. I don’t know if it was just shock. I don’t know if it was partially denial. Maybe it was me trying to minimize the situation, but we told our immediate family and a few really close friends, but it wasn’t something that I broadcast. I wasn’t ashamed.

Procedures & Testing

How do you prepare for a colonoscopy?

The worst part is the preparation for it. Once you get through that, it’s pretty easy.

The day before, as you’re prepping for a colonoscopy, you are fasting and just on clear liquids. I do a lot of chicken broth, popsicles, clear sodas, and hydrate all day.

That evening, you start your preparation and drink a lot of different solutions that clear out your system. Up until about 11 p.m., you’re having a lot of bowel movements and some cramping. Your body is clearing out your colon so that the next day, when you go in, you’re ready for your scope.

I usually try to schedule my colonoscopies as early as I can in the morning because that way, you’re not having to fast the entire next day, too.

Describe the colonoscopy

When you get to the hospital, they put an IV in and hang some solutions. Once you get into the procedure room, you can decide if you want medication that makes you sleepy and unaware of what’s going on. Once you’re in there, the procedure of the scope usually only takes about 45 minutes.

You lay down on your left side, and everything they do is very gentle. There is only minor discomfort, like a gas cramp. Usually you can put a little bit of pressure on your stomach to help relieve that.

Usually with the medications, you are kind of aware of what’s going on but really don’t have any discomfort. If you do, it’s a small cramp, kind of like a gas cramp.

The use of the scope just takes a turn through your intestines. They back out and take another look as the scope is exiting your colon to make sure they didn’t miss anything.

After that, you’re brought out to the recovery room, and about an hour or so later, you’re putting on your clothes and heading home.

How long does it take to get results back after a colonoscopy?

About a week for the biopsy to come back. If they don’t decide to biopsy any polyps, then you know the same day if things look clear.

It’s either immediate, or they decide to take a biopsy of the polyp they removed. In that case, it’s generally 1 or 2 weeks for those results.

Describe the wait for results, or “scanxiety“

It’s always difficult when you suspect something might be wrong. When I was brought back to meet with my surgeon in his office after the first biopsy was done, he said, “We’ve got another curve ball. It came back as inflammation.”

That was hard to think about later because it had given me a little bit of hope that everything was okay when it really wasn’t.

»MORE: Dealing with scanxiety and waiting for results

Familiarity with Lynch syndrome was critical

I was lucky to be working with a team that was familiar with the risks of Lynch syndrome and understood that I have up to an 80% chance of developing colon cancer.

It wasn’t taken lightly. I didn’t have to push for anything when that came back as inflammation. He already knew it was cancer. He said, “Shannon, you can either take out part of your colon now and schedule that procedure, or we can do more imaging and another biopsy.”

I was lucky not to have to advocate for myself.

Treatment Decisions

What was the biggest decision you had to make?

I have had a good relationship with my surgeon because he had been doing my colonoscopies for years prior to the diagnosis. There was some comfort in that. This wasn’t our first episode together.

Some of the decisions that I had to make were more around my Lynch syndrome. The gold standard if you have colon cancer as a Lynch syndrome patient is to take out the entire colon because that obviously cuts down your risk of having colon cancer again.

That was really one of the biggest decisions with my surgeon: how much colon do we take?

We weighed the pros and cons. That was a decision we made together with my husband. My surgeon always offered for me to have a second opinion, but it wasn’t something that I felt like I needed to do.

As a nurse, I always recommend people get a second opinion. In my case, though, I went with my gut and my heart, and I felt like he was the right surgeon for me.

Did you ask your surgeon about his experience with similar cases?

We certainly did. We talked about his experience with other Lynch syndrome patients, how many surgeries he’d done like this, the different types of surgeries he’d done to remove colon cancer, how many years he’d been in practice, and the fact that he works at a teaching hospital — all of those things.

Do you have any advice for patients about deciding where to receive care?

Smaller, rural hospitals have an absolutely amazing place in the health care system and are needed, but when you’re dealing with something that’s complicated, going to a bigger hospital or getting that second opinion would be worth it.

Lynch Syndrome

When did you find out you had Lynch syndrome?

Most of the males on my dad’s side of the family have died at a really early age. My grandfather died of colon cancer and when my dad was in his mid 40s. He followed the same trend and was diagnosed with colon cancer.

This was long before genetic testing had become such a big deal. He had colon cancer, and luckily it was diagnosed early. He had part of his colon removed, but then about 10 years later, he had colon cancer again, totally unrelated to the first diagnosis.

Still, no one had suggested genetic testing. He went on to later have prostate cancer and finally stage 4 kidney cancer, but he’s still alive. He’s amazing!

It wasn’t until the fourth battle with cancer that my good friend from high school was finishing a degree in genetic counseling. He said, “Shannon, your family has to get testing. This isn’t normal.”

There was a piece of me that just didn’t want to know.

Eventually, I talked to my dad, and he very willingly went in and had genetic testing done. It was just blood work, but they ran all sorts of tests on his DNA.

It came back that he in fact had Lynch syndrome. If you have it, you have a 50% chance of passing it on to your offspring. I got tested and found out I had it, too.

That was about 10 years ago. As of right now, it’s pretty rare to know you have Lynch syndrome, even though the estimates suggest 1 in 279 have it. It’s not rare, but it’s very under-diagnosed.

I feel really fortunate. I didn’t at the time I was diagnosed, but that knowledge I received was absolute power and to this day probably saved my life.

Had I not known I had Lynch syndrome, I wouldn’t have received that colonoscopy until I had symptoms. At that point, it probably would have been a pretty late stage diagnosis of colon cancer.

Does Lynch syndrome put you at a higher risk for cancers other than colon cancer?

I’m also at high risk for uterine and ovarian cancers. I do routine testing for those as well. My colorectal surgeon strongly encouraged me to go have my testing for those done, even though it was early. They wanted to know if there were any other concerns before they opened me up.

I met with my gynecologist, and I had thickening around my uterine lining show up on the ultrasound. That resulted in a biopsy of my uterus.

Those results took another week, and that was really hard. I already knew I had colon cancer, so going from a healthy, fulfilling life to the reality that I might be dealing with 2 cancers was scary.  

There are a couple of different types of Lynch syndromes. Mine has the biggest risks of colon cancer, uterine cancer, ovarian cancer, small intestine, and a slight chance for brain tumors and urinary tract cancers.

How did you adapt after you were diagnosed?

The recommendation is a colonoscopy every year and an endoscopy every 1 to 3 years. I do a uterine ultrasound every 6 months and a uterine biopsy about every year.

That ultrasound also looks at my ovaries. I also do a urine cytology once a year just to make sure there’s no abnormal cells growing in my urine.

What happened on the morning of your surgery?

I got there really early in the morning. First, a couple of IVs were placed. Some fluids were hung. They did a spinal block on me prior to surgery in hopes that it would put me ahead of the pain game after surgery.

My surgeon poked his head in a few times to check on me. There were some urine tests and another antibiotic hung in my IV. I was anxious, but I was there with my husband.

Eventually, after what felt like forever even though it was only a few hours, I went into surgery. I very clearly remember being wheeled back into the OR and suddenly feeling really emotional about things.

I tried to do a lot of preparation because I knew that that moment was going to be difficult, and I wanted to do everything in my power to go into that OR feeling confident and relaxed.

I remember I did some visualizations of going into the OR and having all of these people who had my best interests in their hands helping me. I knew there would be a guiding light and that it was all going to be okay.

Can you describe what the surgery entailed?

My surgeon felt confident enough to give me the option of doing open surgery, where they would use a big incision to cut open my intestinal area, or go in laparoscopically.

Going in laparoscopically was supposed to be a better option for me because it would make further surgeries easier. That’s what we decided on. They went in and used 5 little incision marks in my abdominal area.

They filled me up with air so they could get their instruments in to do everything they needed to. I had about 3/4s of my colon removed, and they used a little incision around my belly button to remove that.

Then they stitched me back up in the 5 different spots. There was a little cut on my liver they had to suture, but luckily that was not a big deal, and that was the end.

How did the staging happen?

They were not able to stage it until after they had taken a bunch of lymph nodes during surgery.

They biopsied those while I was recovering in the hospital, and I found out it had not spread to my lymph nodes. They diagnosed me as stage 1 colon cancer. That biopsy only took about 48 hours.

How did it feel to know you were stage 1?

Even though I was blurry on pain medication at the time and feeling bad after surgery, I felt like a weight had been lifted off my shoulders.

That news meant that I likely would not need chemotherapy or radiation. That felt like a huge gift had been given to me. My surgeon said, “This is really good news, Shannon. This is really good news.”

How was surgery recovery?

The spinal block didn’t really work, so I woke up frantically as they were wheeling me out of surgery in what felt like pretty uncontrollable pain. It was really uncomfortable in my stomach, and the gas that they had filled my belly up with had this radiating pain all over my shoulders and neck.

I was incredibly uncomfortable. I was receiving quite a bit of pain medication that made me really nauseous. We did eventually get my pain better controlled, and I was wheeled up to the surgery floor, which is where the nurses took over through my recovery.

At the 1-year mark, I had more imaging done. I was having blood work done to look at my colon markers every 3 months.

That all stayed the same until the 2-year mark, then it switched to blood work every 6 months. At year 3, I’ll be going back to a colonoscopy each year and blood work.

Was there anything particularly hard about being a mom with a young child after surgery?

I came out of surgery needing nurses to find me a breast pump from the maternity floor, so I could try to pump breast milk because I was engorged. It was one of the biggest challenges that I faced.

It was extremely challenging to have all these fears with a recent cancer diagnosis when you just gave birth a year ago to a little human who has become your world.

The physical aspect of still breastfeeding and having to figure out how to pump at the hospital was so hard. Figuring out who’s going to be helping take care of your child when you have 2 weeks of unexpected hospital stays is really challenging.

Support & Survivorship

Did you have to rely on outside help with child care?

My husband and I are really lucky to both have wonderful families. Even though they’re not local, they’re both within about 3 hours. There was a lot of coordinated care when I was in the hospital.

My husband was spending really long days with me there, running home to relieve one of our parents, and trying to create some normalcy for our child. Thank goodness our parents were willing to help, and my husband, Matt, was just a hero when it came to juggling everything.

Any advice to parents who are going through cancer treatment?

Ask for every piece of advice and resources that the hospital can give you.

It’s so overwhelming to receive a cancer diagnosis; it feels like your world just stops. It’s easy to overlook the fact that there might be resources to help with childcare, support, and counseling that we might not be aware of. Be open to connecting with other people.

»MORE: Parents describe how they handled cancer with their kids

Finding a cancer community

One of the biggest pieces of this cancer journey has been allowing myself to connect with other young people who have had cancer. For me, that meant attending some different cancer workshops, weekends of hope, and informative conferences about Lynch syndrome.

I went to women’s health and cancer conferences. I got involved in a young survivor group in a nearby city, and that has been such a huge piece of my healing. I don’t think you ever want to normalize cancer, but when you’re diagnosed, I know I felt like I was alone.

There’s so many other people who have been through something so similar to what I have been through, and connecting with them has made me feel like it’s going to be okay.

Other people have gotten through this, and I will continue to get better. On the days I feel like I can’t get through it, there’s others there that I can lean on to support me. When I am feeling really strong, then I can support them.

That is part of this beautiful picture. We are all in this together.

In the last year, I started an Instagram page with the sole purpose of trying to connect with other young cancer survivors, especially people my age with Lynch syndrome. Instagram and social media have been a really amazing platform for me.

Ironically, it’s made me feel like I’m able to live a more authentic, honest life. It’s given me an outlet and a way to hopefully help support some other people.

How did cancer affect your relationship with your husband?

It brought out some of the best in us, and it brought out some of the worst in us as well. When you go through a cancer diagnosis, all of a sudden, you have these emotional needs that you didn’t know existed.

Your partner doesn’t necessarily know what they look like. In a moment, life has changed, and your partner is dealing with this new fear and diagnosis just as much as you are.

For us, there were a lot of stressful times. The first year of cancer allowed my husband and I to realize where our weaknesses in our relationship were.

We realized how much communication we both needed. The positive is that it really allowed us to grow and to continue to do so, because Lynch syndrome is a lifelong thing for me.

Once I finally reached the healing process of cancer, we were able to take an honest look and say, “Okay, we want to be there for each other more, and these are the ways that we need to grow to do so.”

We’re all different, but what helps me is to remind myself every once in a while that we both have the best of intentions. Our goals are the same.

We want to be there for and comfort and support each other. Some days it comes out just perfectly, and other days, for whatever reason, it doesn’t. At the end of the day, we both love each other, and we both support each other.

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

There’s a huge silver lining when you have been diagnosed with cancer or are living with Lynch syndrome. You don’t take a day for granted. It puts a whole new spin and perspective on your life.

Suddenly, some of the things that used to be a big deal aren’t anymore. What you really want and things that really matter have this way of becoming so clear.

Fertility: you had to consider the possibility of a hysterectomy

I’ve had a lot of conversations with my husband about timing. It’s going to happen at some point; it’s important to talk about. We feel really happy to have this one seemingly healthy, wonderful child, so we’re done having children.

The second piece of the puzzle is weighing the benefit-to-risk ratio of being so young and having a full hysterectomy. We have to consider what going through menopause looks like long-term for my health.

We revisit those conversations when I need to talk about them during my appointments. For now, as long as everything looks okay, I have decided with her recommendations to wait closer until I’m 40.

What is your advice on being a self-advocate?

Self-advocacy is so important. As a nurse and someone who’s connected with a lot of young people who have had cancer, I see young people having symptoms that aren’t normal, but they’re being ignored by doctors.

Listening to your body is so important. You know it best.

When you know that something’s not right, it’s been more than 2 weeks, and you’re having the same symptoms, advocate for yourself until you feel like the right tests have been run.

»MORE: How to be a self-advocate as a patient

Was there any financial stress from the treatment?

I was really lucky because we have a really good insurance that covered almost all of our costs. The challenge came when I wasn’t working and wasn’t covered. That put some financial stresses on us. We focused on what needed to happen for me, and we went through it and worried about the rest later.

I wish I had met with a social worker, who could have better explained all the financial stuff to me, since I didn’t have the time to look into that myself.

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