Colorectal Cancer Stories
Colon Cancer, Related to Lynch Syndrome, Stage 1
“My name is Shannon Mercurio, and I'm a colon cancer survivor. I'm also someone who lives with Lynch syndrome. 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.”
Name: Shannon Mercurio
Diagnosis: Colon cancer
Routine colonoscopy found polyp
no other symptoms
Treatment: Partial colectomy
Table of Contents:
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What were your first symptoms?
How did your doctor diagnose the cancer?
I was really lucky to be dealing with a surgeon who was familiar with Lynch syndrome because I don't know if other surgeons would've caught it. They did a biopsy on a polyp that didn't look quite right. The first time, it came back as inflammation, and my surgeon said, "Shannon, it can't be. It's not right." He said, "I think we should do some more imaging and another colonoscopy, so I can get a better biopsy and go from there."
It was in an early enough stage that nothing showed up on my imaging. I went through the second colonoscopy a couple of weeks later. They did another biopsy, and that biopsy came back clearly as cancerous.
Do you recall how it felt to hear the diagnosis?
I don't think I'll ever forget it. It was a Friday. My husband, one-year-old daughter and I were visiting my parents for the weekend. My husband is a big white water kayaker, so he had just taken off from my parents’ for the next night of racing.
They don't have cell phone reception at their house, so I wasn't aware, but my surgeon had been trying to reach me all day. I didn’t receive the call until about 8:00 that night.
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, and we left it at that. We agreed to talk about next steps on Monday.
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 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 four hours away, right after my surgeon and I hung up. He got back into his car and rushed to my parents'. I can laugh at this story now, but he got pulled over by a police officer on his way home for speeding. He looked at 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.
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. It just felt so surreal because I was so healthy. How do you say go from, "Hey, what did you do this weekend?" to, "Hey, I was diagnosed with cancer?”
How did you emotionally process the diagnosis?
It's all a little blurry. That is how you deal with it, in some ways. I don't really remember our drive home. I don't even remember what we did for the next couple of days. I must have been in shock because I don't remember what it was like. I know we went in and met with my surgeon that next week to discuss the next steps. There were always next steps, there was always more testing, there was never really a stagnant period whenwe weren't doing anything. Maybe that helped.
2. 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 11pm 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, hang some solutions, and 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’s is only minor discomfort - like a gas cramp. Usually you can put a little bit of pressure on your stomach to help relieve that.
So when you do go in you lay down on your left side and everything is very very gentle and usually 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. Just 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 one or two weeks for those results.
Did you have any anxiety waiting for the results?
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.
Did you have to push for more testing?
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.
You had an MRI after your biopsy. What was that like?
You had an endoscopy. Can you describe that?
The endoscopy is an upper scope. It was done the same day as my second colonoscopy, so I didn't have to fast twice. They go down with a tube in your throat all the way to your small intestine and stomach. That took about 20 minutes, and I was heavily sedated for that. I didn't have anesthetic spray; it was all IV push medications. I know I had some Lorazepam for anxiety. They were ruling out any other cancers in my small intestines or stomach. It took about two weeks for those results.
Did you have any other testing done?
I also had a chest x-ray done - that was the last test before surgery, after the endoscopy. It was to check my upper chest to make sure there was no spread to my lungs.
3. 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?
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, 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 there care?
Smaller, rural hospitals have an absolutely amazing place in the healthcare 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.
Was there anything unique about your medical team?
I have a naturopath who is certified in oncology and acts as an amazing addition to the traditional treatment team. She helped in treating side effects, prepping for surgery and helped take care of you after. She's someone I still work with in combination with all the other normal screening and treatments.
4. 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 40's, 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.
Does it put you at a higher risk for cancers other than colon cancer too?
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 two 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 one to three 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.
5. Surgery & Recovery
What were the preparations for surgery like?
Most of the testing procedures were done during my diagnosis stage. Other than having some of the female organs checked out after I was diagnosed with colon cancer, pretty much everything had been done at that point.
I was scheduled for surgery almost exactly a month after my diagnosis. Unfortunately, I had a stomach bug right before I was supposed to have surgery. It was postponed for a week, and then I went in.
My pre-surgery looked almost identical to my colonoscopy preparation. I did the normal colonoscopy prep, but in addition to that, took a bunch of medications prophylactically. They had me on a couple of different antibiotics before surgery. There was a vitamin mixture. I was on a nerve medication to try and prepare for surgery and nerve pain.
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.
What’s a spinal block?
I have never had an epidural, but from my understanding it's pretty similar. They put a needle in my back, and put in a pain medication. That procedure probably took them about 20-25 minutes to do.
They used a little bit of numbing agent before they went in with the needle. It was a little painful and uncomfortable but not unbearable by any means. It felt like there was a lot of bleeding before surgery.
Were you nervous before surgery?
When you go into surgery, it's bright and cold, and it all hits you. There were a lot of people in the OR, and the anesthesiologist was telling me the plan and realized I was anxious. I got a little bit of Lorazepam to make me feel more at ease.I could see my surgeon come in across the room, and I looked over at him and said, "You've got this. I know you've got this." He came over, and he took my hand and said, "We've got this. We've got you." At that point, I got anxious. I shed a tear or two, and that's all I remember until after surgery.
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 five 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 three-quarters 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 five 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?
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."
What was the recovery from surgery like?
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.
They had told me to expect one or two nights in the hospital. Between one discharge and an urgent rush back to the ER, I spent about 14 days in the hospital.
You made a trip to the ER. What happened?
I never turned the corner like they thought a healthy 36-year-old would after surgery. They were running blood tests every day. They were concerned I might have had a leak around where they reconnected my colon, and nothing was showing up. I was pale and sick.
After about six days of testing and not finding anything, I insisted, "I need to go home and see my one-year-old." I was missing her terribly. I went home knowing how weak I was. I had lost about 20 pounds in two weeks.
I was incredibly weak and still not feeling good. I went home and spent two nights there. Then woke up one morning soaked in sweat. My heart rate was racing. I thought I was going to pass out. My husband said I was really pale.He rushed me back to the ER. I had anaphylactic shock because I was allergic to something that they gave me. I felt my throat closing up. They took down the bag of whatever I was allergic to, and after running a bunch of tests, they figured out I had a gastrointestinal infection. I was put on IV antibiotics for another six days and spent six nights in the hospital. That restarted my recovery at that point
Did they find out why you had an infection after surgery?
There were a lot of unknowns. They ran so many tests. I had a lot of post-surgical fluid in my abdomen, so they took out a lot of the fluid in my abdomen and tested that. The team said, "We're chalking this up to an infection, and you're getting better. That's what matters.”
How did they tap fluid from your abdomen?
I went down to interventional radiology. They put a little bit of numbing agent around my lower right abdominal cavity. Through guided imagery, they put a very long needle into my stomach cavity. From there, they were able to drain out about two liters of fluid. They biopsied some of that, pulled the needle back out, and that was it. It was uncomfortable. Compared to what I'd already been through, it wasn't terrible. It was scary, but it was mildly uncomfortable.
Do you have any advice about surgery recovery?
I went in with certain expectations. I expected that even though I might be weak and recovering, I'd be home with my daughter. Try not to have expectations. Try and go into this knowing there might be a few curve balls. Put all of your positive vibes and energy into the fact that it's going to go well, but be ready to accept that things might change. Things might be a little bit different than you were told, and unfortunately, we have no choice but to accept that.
Did you have any follow-up scans?
I had a lot of scans while I was in the hospital after surgery because they were concerned that something was going on. I had two MRIs while I was still in the hospital. I saw my surgeon a lot in the hospital. I saw him the week after I had finally been discharged. Then I was seeing him about every two weeks to run blood work and have him check my abdomen. Once I didn’t have symptoms from the post-surgery fluid, I was meeting with him once every three months.
At the one-year mark, I had more imaging done. I was having blood work done to look at my colon markers every three months. That all stayed the same until the two-year mark - then it switched to blood work every six months. At year three, I'll be going back to a colonoscopy each year and blood work.
What is the long-term recovery like after such a major surgery?
It took me about six weeks to feel like I had as much strength as I wanted to for short hikes, to lift up my one-year-old daughter, and to return to work part-time. It took closer to six months to really start feeling like myself again. I was having abdominal pain nerve pain from surgery for a while.
I'd like to say my bowels have regulated, but I think they'll always be a little bit off when you're dealing with less colon than most people. I went from someone who had a normal bowel movement once every day, to after surgery, I was having five to 10 loose stools per day
Around six months, that started to even out a little more to two or three times a day. I had full control thankfully, but certainly, with a little more urgency when I do have to go.
My naturopath has really helped me with recovery. She’s really made a big difference. She helped me to get on some probiotics, natural anti-inflammatory medications, and fish oil - a couple different things that have seemed to really make a difference for my system. Now, unless I eat foods that are upsetting to me, I'm having one or two bowel movements a day.
Was there anything particularly hard about being a mom with a young child after surgery?
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 two weeks of unexpected hospital stays is really challenging.
6. 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 three 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.
How important is it to find a 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.
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 your cancer experience affect your relationship with your husband?
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.
What was the worst part of all of this for you mentally and emotionally?
The worst part for me was having Lynch syndrome. I always knew that there was probably a good chance that at some point in my life, I would have cancer. I did not expect to have cancer at 36. The hardest thing was thinking, “Wow, I'm getting this first cancer diagnosis at 36. What does that mean for the rest of my life?" That took me a while to process.
It's an ongoing process, and it probably will be the rest of my life. What I try to remind myself every day is that I'm living a full life, and I love my life. I have to trust that even if I do get another cancer diagnosis, it's going to be okay. We're going to work through that as well.
You had to consider the possibility of a hysterectomy. Did you talk about fertility?
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. But 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, and it's been more than two weeks and you're having the same symptoms, advocate for yourself until you feel like the right tests have been run.
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.
Do you have a message you would like other patients to hear?