Shannon’s Stage 2A Lynch Syndrome Colon Cancer Story

---

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

---

---

First Symptoms and Tests

What were your first symptoms?

I was having severe pain after I would eat out. 20 minutes after, it is just excruciating, and I have a very high tolerance for pain. I thought maybe it was something with my diet. Something wasn’t sitting right. 

I obviously paid attention to it, tried switching around, and it never really happened or never really fixed it. I went to a doctor in the fall of 2014 in November, and they said I had an ulcer because of the pain, where it was at, and I was eating. He put me on medication and [told me to avoid] caffeine, spicy foods, things like that.

That didn’t help, so I ended up living with it. Then it started getting severely worse, and I was bowled over in pain one night crying.

This is in December, and my husband urged me to go to the ER. “This isn’t like you.” I went, and they brushed it off like, “Why are you here for abdominal pain?” 

They ended up doing an ultrasound and found out that I had an inflamed gallbladder, so they thought that was the issue. They gave me a surgeon’s number and told me to take Tylenol and contact the surgeon. That’s how this whole thing started.

I’m a type 1 diabetic, so I try to pay attention to patterns because of my blood sugars. I also had 2 young boys. They were 3 and 1 at the time. That wasn’t really the forefront of my issues. I was just trying to alleviate it by myself. Trying to figure out how I can make this a little better. I didn’t think it was a big issue.

Describe the first CT scan

That was in the end of July. I had my CT scan August 12 of the following month. She sent me to a different hospital system than what was local because of some type of imaging that they had that was better than around here. 

They gave me contrast to drink. [I had] an hour I have to drink it. They do a chest, abdomen, and pelvis CT. You fit in a tube, and it takes about a minute or minute and a half to go through the tube and come back out. 

It was 45 minutes away, and before I could even get home, my GI’s office was calling me, saying they needed to schedule an emergency colonoscopy.

I asked why. They couldn’t tell me what it was at that point. This is on a Wednesday. The following Monday, my colonoscopy was scheduled. 

What’s going on in your mind at the time?

I’m not a person who gets worked up about a lot of things, so I figured, “Well, at least they’re coming to some sort of conclusion, because I’ve been living with this for a while now.”

Cancer was still not registering in my head whatsoever.

I was thinking maybe the colonoscopy showed an autoimmune issue because the CT tech who scanned me before I left had asked me if there was any irritable bowel syndrome (IBS) that ran in my family. That’s where I was thinking. It wasn’t anything further than that.

Colonoscopy

What happens at the colonoscopy?

They actually have a local surgical center that I went to. Before the colonoscopy, I had the prep, which wasn’t really that bad. I was expecting a lot worse, and it wasn’t. I was actually able to get sleep, because I have 2 boys!

Afterwards, they pulled me out of the operating room and obviously woke me up. They didn’t really say much until I had come to. My husband was right next to me. The doctor comes around, and she says, “We found a mass. We couldn’t finish the colonoscopy.” She said she wasn’t sure what it was.

How long does it take to get the colonoscopy results?

She sent the biopsy of the mass and said it should be returned in 2 days to let us know exactly what it was.

At this point, I think she knew what it was because my husband later Googled the image that we got in the report to get an idea. She was young, she was our age, and I think it hit home to her, so she didn’t want to say what it was — that it was probably cancer. My husband and I went home, and we waited.

That was a very long Tuesday because the results ended up coming in Wednesday. I tried to keep myself busy [and] tried to keep it together for my boys, knowing potentially what was in my future. 

Wednesday comes around. My doctor’s office calls me in the morning. My husband had [gone] to work at that point because we weren’t sure how we were going to get the news of what it was. Then they say to me, “We need you to get someone you can trust to come with you to the surgical center as soon as possible.” That’s all they said.

I was a little crazy at this point. I had my 2 boys at home, so trying to keep it together until I could at least leave them somewhere. I had to call my husband to get him to come home so we could go to this meeting.

My mother-in-law came over and watched our boys. My husband came home from work. He and I drove up to the surgical center in silence.

We didn’t know what laid ahead of us.

Colon Cancer Diagnosis

Describe the meeting with the surgeon

We got to the surgical center. They ushered us into a very small conference room. We sat down. The doctor’s not in yet, and we had no words. We didn’t know what to say at this point. 

My doctor came in. She looked at us and said, ‘I have never had to tell anyone as young as you are about cancer. Typically, my patients are 70 and older that I have to tell this to, but you have colon cancer.’

I remember a tear coming down on the side of my cheek, and I looked over to my husband. He was crying. At that point, I’m like, “Okay, got to get it together. What do we do next?”

That was how we found out.

Describe the process of setting up the surgery (colectomy)

They figured that I was just going to go straight to surgery as far as treatment goes. They set me up to see a surgeon that day. We left the surgical institute to my new surgeon’s office. We saw her. She looked at my chart, she looked at everything, and she said, “I think we can do this with just surgery alone.” So we saw her.

I had a few other [tests] done. Then around 7 at night, we got the okay that we could leave for Houston the next day. 

We left for Houston. I love baseball. Houston Astros are my favorite team. Our fifth wedding anniversary was that Friday, and we were at the Astros game in Houston. They had a no-hitter that Friday, so it was a wonderful vacation. My family lived in Houston, so I got to spend time with all my relatives.

We came back, and an hour after my plane landed, I had my doctor calling saying, “You need to go here, you need to do this, you need to go to the hospital, and you need to have this done.” They had a surgery set up for me that Thursday.

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

Advice to others on how to conserve energy

Rely on someone else to help you if you feel you cannot do it. 

Was there any cancer staging?

She couldn’t stage the cancer at that point. She said they couldn’t finish my colonoscopy because my mass was large. She just took a biopsy of it, and it came back as cancer.

I wasn’t even sure what the next steps were. I didn’t even know what doctors I had to see. 

I asked her about stage, and she said she wasn’t sure yet, but I’d have to see a surgeon and have a few other tests beforehand. Looking back to it, the mass had grown outside the colon walls. That’s why they couldn’t get through my colonoscopy. 

We weren’t sure about the staging. After the CT came back from later on that day, we had a good idea that it hadn’t yet spread, at least into different organs. That was a positive aspect in the whole scheme of things that day.

Advice on dealing with scanxiety

I’ve had a few scares of other cancers, and the scanxiety is very hard to deal with sometimes. I find if I refocus and recenter myself on what’s at hand — that what’s going to happen is going to happen. I can’t control it by worrying. It helps me.

It’s different for different people, but if I realize that this whole entire situation is not entirely in my hands and allow myself to feel negative about it, it’s not going to change the result.

»MORE: Dealing with scanxiety and waiting for results

Genetic Testing and Surgery (Partial Colectomy)

How did you decide to get genetic testing done?

I actually did. I had my colon resection moved. They took 29 lymph nodes from my ascending colon. One was inflamed, but they all came back fine.

They staged me as 2A. My doctor had sent my tumor out for genetic testing because you can personalize some of the treatments for how that comes back.

My oncologist had never seen anyone my age with colon cancer, nor do I think she had many Lynch syndrome patients, if any at all. My oncologist recommended me for genetic testing, which I drug my feet about at first, because for a while, I didn’t even want to know if I had a risk for something else at that point. It was hard for me to work through initially. She was waiting on my genetic testing and tumor to come back. 

I was diagnosed in the middle of August. I had genetic testing in September, the following month. The genetics of my tumor didn’t come back until September. It came back that my tumor is MSI-high, which was probably Lynch (syndrome). 

»MORE: Read our interview with a genetic counselor

My Lynch diagnosis came back in October, and I saw the second opinion the day before my Lynch diagnosis came back. 

That second opinion doctor said he agreed with what the tumor board had told her — that I would not be a good candidate for chemo because it was detrimental for a stage 2 Lynch patient.

At that point, they decided I was most likely cancer-free and that I needed to be monitored strictly from that point on. 

The next day, I got a phone call from the genetics department at the University of Michigan letting me know I had a Lynch diagnosis. That was a slap in the face.

What is prep for the partial colectomy like?

The prep was actually like the prep for colonoscopy, except I just had to drink 2 bottles of magnesium citrate and be on a liquid diet. It was pretty much the colonoscopy process to get the colon cleared.

I went in early in the morning, around 5 o’clock. I’m a type 1 diabetic, so they always see me first. I think the surgery lasted 2 hours. It wasn’t very long, as opposed to a lot of them. We weren’t sure when I went in for the surgery if I was going to wake up with an ostomy or not.

What is an ostomy bag?

It’s a bag where they have to put your colon through your skin in order to relieve yourself of your stool. They weren’t sure if they were going to be able to reconnect my colon at that time and said that I may have to have an ostomy. 

As the surgery went, they were able to reconnect it without any tissues dying or anything, so I didn’t have a bag when I woke up. At that point, I didn’t even really care if I had one or not.

When you have to worry about things like surviving cancer, it didn’t bother me if I would have woken up with one, to be honest.

If you needed the ostomy bag, how long would you have worn it?

My doctor said I’d probably have it for about 3 months, and then I’d come in. They’d do another surgery where they tried to reattach my colon and would no longer have a bag. 

That was the only concern my surgeon had. I didn’t care.

What happened at your partial colectomy (colon resection surgery)?

They took out my ascending colon and reattached my colon together, so I just have that part missing. I was in the hospital for 4 days. It was going to be between 4 and 5 days, but I’m the type of person who likes to do as much as I can to get out early. I was up and walking around 2 days later. That was it for the surgery for that.

»MORE: Read more patient experiences with surgery

Recovery and Follow-Up

Describe the recovery process

As far as recovery time, I think it was about a week. I’m one who likes to push my limits, and sometimes it’s not a good thing. My husband was very like, “You need to lay down on the couch and not do anything.” He set up for people to come over and help with the boys during the day while I recovered.

When do you feel more fully recovered?

After about a week, I was able to really get up and start doing things. I would get up for a little bit, but I was really tired after the surgery. I think that’s a really good point to make. You need to let yourself heal sometimes, even though your mind may be saying, “You’ve got to get back to normal; you’ve got to do this.”

But sometimes it’s good to just give your mind a rest and just relax.

What are the follow-up scans?

They did a body scan 6 months later just to make sure that nothing had started again. That came back with a spot on my liver. I had the body scan, and then I had a doctor appointment. My husband wasn’t going to come with me to the doctor appointment.

He was just going to stay at work, but he ended up surprising me at the doctor appointment, thank the lord. My doctor walked in, looked at me, and said, “Well, we found something on your liver.”

I didn’t think I was ready to do this again. They ended up doing another MRI and found it was a benign mass that they saw on my liver. That was my first real anxiety!

My oncologist makes sure she has an answer for everything that could potentially be an issue. She scanned me from head to toe, sent me back for an MRI, looked at the area, and it came back benign.

In terms of PET scans, she said something about how what she needed to see in my tissues wouldn’t show up on a PET scan. She always sends me for CTs.

How do you mentally manage the scans?

There’s nothing you can do to make the outcome any different. If you waste negative energy on crying and worrying about it, it might even make it worse because sometimes it’s not anything to worry about. 

What is the overall follow-up plan?

They were planning on watching me closely and developing a plan according to how my genetics came back.

You have an annual colonoscopy now

I have them the rest of my life. They put me under, so I don’t feel anything. I just sleep and wake up, and they let me know if they found anything. 

I also have to do EGD every year, so they do that at the same time as well. They stick a tube down your throat to see into your stomach and your esophagus because I have risk of gastric cancer. They do the colonoscopy and EGD at the same time.

They put you under, so I don’t feel anything. I just sleep and then wake up. Sometimes it’s a good break, having boys! I always joke and say it’s the best 45 minutes of sleep I get.

What’s the follow-up because of Lynch syndrome?

I’d have to have a yearly colonoscopy because I have a higher risk of occurrence now. On top of that, I have a higher risk of developing a second cancer within 15 years of my first diagnosis.

That raised my original risks a little bit higher now. I’m monitored all the time for them.

The colon cancers grow very fast. My GI said I probably had cancer for 1 to 2 years before they found it at stage 2. It just started, as opposed to 5 or 10 years for the general population without Lynch. 

Yearly body scans until year 5. CT scans until 5 [years]. For different medical professionals, they have different opinions on how monitoring Lynch should be. [My oncologist] and I are in talks of maybe having a yearly MRI after the body scans, because I’m going on year 5 right now. 

We’re figuring it out as we go when it comes to Lynch. There’s a lot of additional monitoring on top of colonoscopies and things like that.

Is there family history of colon cancer or Lynch syndrome?

She was 44. She was diagnosed in the early 2000s, and I don’t think anyone brought up any genetic issues because I think she was so close to 50 that her doctors didn’t really think anything of it. That’s what I’m assuming. My mom has passed, so I can’t really ask her. 

Keeping up with the Lynch syndrome screenings

It’s very important to keep up with your Lynch screenings. There are a lot of screenings, and sometimes it feels like a full-time job. I have it now where they’re scheduled at the same time during the year. If you don’t keep up with them, the chances of developing a cancer are [up there].

Cancers grow fast. It’s good to have knowledge to stay on top of it. The one thing that helped me digest having Lynch was now that I know that I have this, it means I know I can use what knowledge I have to stay ahead of the curve. Hopefully, stay ahead of anything developing and staying on top of screenings. 

It does get tiresome. I did try talking my GI into switching my colonoscopies from a year to 18 months. When I asked her that, she said no. I was bogged down with all of these tests, and I was so sick of it, I said, “Can’t we just scoot it back 6 months, wait 6 months, have a little break, and then we can have a colonoscopy?”

My GI told me to hold on and sit down. She looked up and found statistics on cancers developing in Lynch patients who’ve already had colon cancer. She said, “No, I think we’re going to keep it at 12 months.”

Then I had my colonoscopy a month later, and she found a polyp that wasn’t there the year before. She comes in and says, “See you in a year! You’re not getting out of this one.”

When it comes to Lynch, stay on top of your screenings, listen to your body, and advocate for yourself. 

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

Mental and Emotional Impacts of Cancer

What’s the best thing that gets you through the hardest times?

When I was diagnosed with cancer, a lot of people who were cancer survivors — some I knew and some I didn’t know — gave me some advice. One of them really stuck with me through cancer and through other things that I’ve gone through since then.

These little segments of time ended up being longer and longer and longer. I found myself like, “Okay, I can get through this. I went through this the day before.” 

Between my colon resection decision and chemo, it was about a month, and my doctor would say, “Well, I’m waiting for the test. We need to get you in chemo right now. You have to be in it. You have to be on chemo by a certain time, or else it’ll be ineffective.”

Every week she would call me saying she didn’t have these tests or these tests, so my anxiety was building inside.

Am I going to be on chemo?
Do I need chemo?
Is the cancer spreading right now? 

As advice, it helped me through that part right there. Okay, I don’t have the answers. There’s nothing I can do about it until she has answers, so look to the next hour and see what happens after that. That’s the best advice that I was given during all of this. 

How did you tell your kids about the cancer diagnosis?

My youngest son was 1 at the time, so he had no clue. By the time I was diagnosed, my oldest was 4. He was 3 when everything started. He was kind of grasping that something was going on because I was gone for a week, and then I was at home, sitting on the couch, not doing anything. He knew something was up. 

I don’t really sugarcoat with anything, and he wouldn’t understand what cancer was. I told him, “Mommy’s kind of sick right now. The doctors are taking care of it. I’m not going to be around you for a little bit right now, but I’ll be better soon.” That’s something he could understand at that point.

I was working through the entire month, wondering if I was going to do chemo or not, working out a way to explain that to him. That never came to pass, so I didn’t have to explain that to him.

That was one of the hardest things was trying to come up with a way to explain what as going on to my sons, to one who could understand something wasn’t right.

Not to sugarcoat, but just say, ‘I understand things aren’t right and that things don’t look right to you, but this is what’s going to happen. This is how we’re going to get through it.’ 

How does cancer impact your marriage and your husband?

That was something we never saw coming, but he turned out to be very supportive, very helpful. He was working 12 hours a day at that time. As I’m recovering, he would get home and would pick up the slack that I had from going through all this stuff right now. He was wonderful, so I’m very thankful for that. 

I think it impacted him in a way that made him realize that life is really fragile, more so than he thought.

Growing up, my father passed away when I was 16. My mom had a progressive form of MS, so I was used to hardships and life not being super easy.

He didn’t have that. When I was diagnosed with cancer, it hit him to where, “Wow, I need to be grateful for things.”

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

What do you wish you had known before cancer?

I wish I had known more about the whole thing. You obviously can’t. I was so overwhelmed with all this information that I had no idea about. 

If you’re about to go through surgery or diagnosis, learn everything you can so you understand what the doctors are trying to tell you. 

Perspective on life after cancer

Even now, I’m 4 years out — fingers crossed, going on 5 — I was able to be happier more easily. I tell people as bad as cancer is and as horrible and tragic as the cancer world is, there is some good.

It gives you wonderful perspective on life.  I’m so much more grateful. I laugh so much more. I feel things differently than what I did prior.

Where do you find cancer support?

Through social media. I had no clue about colon cancer, so I just started sharing what information I could about colon cancer and risks, and Lynch syndrome on top of that. I eventually started meeting all these people who are my age — some of them are even younger — who had colon cancer or dealt with colon cancer. 

It made the very lonesome island that I thought I was on much more friendly and filled it with love. As bad as the circumstance was, you aren’t alone.

It’s a good thing to remember. You aren’t alone if you’re going through this right now.

Survivorship

People are like, “Oh, you’ve been through colon cancer. You don’t have to worry about anything else.” But no. I try not to let it affect me. I try not to let it bother me or detour any of my goals in life. I try to only acknowledge when I’m having my testing done, because otherwise it would bring me down. 

Cancer world is horrible. A diagnosis is horrible, but there’s so much love out there and so much support out there.

---

---

Colon Cancer Stories