Colorectal Eloxatin (oxaliplatin) fluorouracil 5fu Hysterectomy ileostomy Lynch Syndrome MD Anderson Memorial Sloan Kettering Radiation Therapy Rectal

Jackie’s Stage 3B/4 Adenocarcinoma Lynch Syndrome Rectal Cancer Story

Jackie S., Rectal Adenocarcinoma, Stage 3B, Lynch Syndrome

Cancer Details: Rectal adenocarcinoma; 98% of rectal and colon cancers are adenocarcinomas
1st Symptoms: Blood in stool, constipation
Treatment: Chemo, radiation, surgery, immunotherapy

Jackie’s Stage 3B/4 Adenocarcinoma Lynch Syndrome Rectal Cancer Story

Jackie shares her stage 3B rectal cancer story, which eventually turned into stage 4 or metastatic rectal cancer. She describes going through treatment before and after a recurrence, including chemotherapy, radiation therapy, surgeries, and immunotherapy.

In her story below, Jackie also highlights the quality-of-life topics that were top of mind, including the support that was most helpful, the impact of her rectal cancer diagnosis on her marriage and being a parent, and the importance of patients advocating for themselves.

  • Name: Jackie S.
  • Diagnosis:
    • Related to Lynch syndrome
  • Staging: 3B, then re-staged at 4
  • 1st Symptoms:
    • Bloody stool
    • Constipation
  • Treatment:

You have to attack it and take control of the situation. You have to make sure you are getting all the answers you need and listening to the best minds possible, because not every doctor is the same.

You don’t bring a knife to a gunfight. You want the best care? Go to the best.

Jackie S.

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


What were your first symptoms?

I’ve always had some pretty weird GI problems, but I had constant blood in my stool. The constipation was also getting pretty bad.

What happened at the first doctor’s appointment?

I had a colonoscopy, and they brought me in the office. Now, I know you never want to be brought to the office. My husband and I sat there with my baby, who was 10 months at the time. 

She just told me they found cancer, and the rest was a blur. After that, I got a CT scan.

How did you process the cancer diagnosis?

I like to compare it to the movie “50/50.” It was exactly like that moment. The doctor says the word “cancer,” and everything just goes to static.

I like to tell people to watch that movie because it’s a really good depiction of what it’s like to get diagnosed and to be a young cancer patient. It’s a true story, and they did a good job.

»MORE: Patients share how they processed a cancer diagnosis

Were you nervous for the CT scan?

I was terrified for the CT scan because I already knew I had cancer. We were just waiting to see if it had spread. They found something on my liver, but it took a while to come back that it was nothing.

There was a day or two period where we weren’t sure if it had spread. That was not great.

What was the genetic testing like?

It took me about a month to get the results back from the genetic testing. They just take a vial of blood. I wasn’t surprised when it came back positive because I was so young. My GI was pretty confident, and I trusted her. 

My mom, brother, aunt, 2 uncles, and my grandmother has it. They all got tested after me. My aunt has endometrial cancer, and now she knows why she has it. They’re all getting screenings now as a result of my experience.

Testing positive for Lynch syndrome

A couple of days passed, and I got into Sloan Kettering pretty quickly. MSK is a well-oiled machine. They don’t mess around. I got in to see the oncologist and surgeon. I didn’t really get a grasp of the magnitude of what was going on until I saw the surgeon. 

They mentioned taking my uterus out. At that moment, I realized I couldn’t carry kids anymore. I had to make a decision about freezing my eggs or not within about 2 days. I didn’t go through with that because I didn’t have time. 

To this day, that’s the most traumatizing part, because that whole part of your life is just ripped from you. I had seen the fertility specialist, and that treatment was going to take up to a month. I was nervous about waiting to start treatment.

I also found out I have Lynch syndrome. My GI happens to specialize in genetic cancers. When she diagnosed me, she said she thought I might have Lynch syndrome. I got tested for that as well, and I tested positive. 

On top of the cancer diagnosis, I found out I had that. It makes you more susceptible to several different types of cancer other than colorectal, primarily gynecological cancers, so I had to decide if I was going to get a total hysterectomy in a matter of days.

Your Lynch syndrome diagnosis influenced the fertility conversation

Lynch syndrome gave me a 60-70% higher chance of getting endometrial cancer. My aunt had that, and now we know why. No one in my family knew they had Lynch syndrome before me. 

I asked the gynecological surgeon what he thought, and I knew that once you’re symptomatic with a lot of those cancers, it can be too late. I just had to make a decision. Was I going to spend hundreds of thousands of dollars on a surrogate and that whole process when I could put that money towards our already-existing son’s college?

There wasn’t really a decision with the total hysterectomy because I wasn’t going to walk around like a time bomb. The freezing of the eggs was tricky, but I decided against it. 

»MORE: Fertility preservation and cancer treatment

1st-Line Treatment

What was your chemo regimen?

First it was oxaliplatin. It was so tough without a port. It caused nerve damage in my arm, so then I got a port and did 5FU, which is fluorouracil. 

I had decided against a port because the way it was explained to me made it sound awful and scary, but I probably should have gotten one initially. I started in early April and ended in August. 

The side effects were horrible. I don’t even like thinking about it. I couldn’t have anything cold. I couldn’t hardly eat anything. My hair started falling out. I didn’t go bald, but it was falling out. I was uncomfortable all the time, especially with 5FU because I had to wear it home. 

I don’t even know how to describe it. I felt disgusting all the time. I was nauseous and fatigued. I put my son in daycare because I was just too tired. I blocked a lot of this out.

Basically, chemo sucked. I’m glad I had it in the summer because winter in New York would’ve been worse with the cold sensitivity.

Describe the radiation therapy

At this point, I was deciding if I was going to save my ovaries. I knew I wasn’t going to save my eggs, but I still had a chance of saving my ovaries for the hormones. They said I needed [radiation] after chemo, so saving my ovaries went out the window. 

I did radiation from September to November. It was pelvic radiation. I went in every weekday for 5.5 weeks. It only took a minute or so each time. I had to check in and all that stuff, so in total, it lasted just under an hour, but the treatment was so quick. 

What were the radiation side effects?

Radiation was easy, but the aftermath was horrible. I didn’t really have any skin issues or anything, but dealing with it now, I have a problem.

When you have pelvic radiation as a female, it drastically affects your vaginal canal because of the scar tissue. It’s challenging. It’s a nightmare. 

Describe the surgeries you underwent

My surgery was January 7th. I had a rectal resection, total hysterectomy, and had the ileostomy. Before the surgery wasn’t bad, and the surgery itself and recovery weren’t either. 

What sucked was immediately after surgery. Since it’s a laparoscopic procedure, the gas bubbles and pains were horrible. After that subsided, it wasn’t too bad. It’s just a matter of adjusting to the ileostomy bag. I had a reversal in April. 

I was only in the hospital for 2 nights. They kind of kick you out of there. They’re finding that your recovery is better if you get up and moving right away. They wanted to me to get up and moving and get out.

Can you talk about your ileostomy bag?

It takes getting used to, for sure. My skin never did adjust to the adhesive. The skin issue was painful more than anything else. 

I had instances where I’d be at the mall, and things would be falling off. My advice is always be prepared. Always carry your materials with you. You’ll more than likely have instances where you need them out in public. 

There are times I currently think my life would be easier with an ileostomy bag still because I wouldn’t have to worry about going to the bathroom. 

The time after the reversal is extremely difficult because of your body trying to adjust. It takes a very long time for your body to get used to digesting things, and it’s very stressful. I just want people to know that it’s normal to get frustrated with it.


What happened after your treatment ended?

I was just happy to be alive. I just put my head down and tried to move on. I didn’t want the attention. I’m not a “poor me” kind of person. I liked talking about normal things. I just moved on. 

I made sure I was on top of my Lynch syndrome screens. I had a clean colonoscopy in July of 2017, and it was back and worse in November.

I had some pain before then in September, but I thought it was just part of the healing process. It was getting painful to urinate sometimes. I didn’t think it was back, though, because I had just had a clean colonoscopy. 

I wasn’t vocal enough about it. I didn’t want to be paranoid all the time and always at the doctor, but now I know I have to be one of those people.

If there’s anything that bothers me now, I send it to my doctors in the portal. I have everything documented now. 

How did you process news of the recurrence?

That was the worst day of my life by far. I was in total shock and in hysterics, which is not like me at all. My doctors were, too. I didn’t have my husband with me that day either, and that was a mistake.

It was just a follow-up. I didn’t think he needed to be there. I didn’t want to call anyone right away, so I just sat there in disbelief after I calmed down from the initial emotions. 

It happened too fast. That’s a testament to the Lynch syndrome. It normally probably wouldn’t have recurred that fast, but this was 4 months after a clean colonoscopy. That was just too fast for me. I was only 9 months out of surgery. 


What was the treatment plan the second time around?

I did immunotherapy. It was a pleasant day in the park. It was skipping and frolicking. It was absolute magic, especially for someone with Lynch syndrome. I felt fine. Treatments only lasted half an hour. It was amazing.

Getting a second opinion

I got a second opinion at MD Anderson about 6 weeks after my first immunotherapy treatment. There were 2 treatments in between starting and my second opinion.

When I saw the doctor there, he did a sigmoid scope, and there was nothing there. That’s not to say it was completely gone, but there was no visible tumor. I was only 6 weeks out of starting immunotherapy. 

This is the beginning of treating Lynch syndrome with immunotherapy. Eventually, the goal is to just have people go right to immunotherapy, and they won’t have to go through chemo and radiation.


What are the lasting effects from treatment?

I can’t go anywhere with big crowds or lines because of the bathroom. I can’t go eat at a restaurant where they only have one stall because it takes me a long time to go to the bathroom. 

There are a lot of physical limitations like that, as far as where I can go and what I can do these days. It’s hard for people to understand if they’re not going through it.

Have you found anything to alleviate any side effects?

I’m a big proponent of medical marijuana. I’d never had anything to do with weed before my recurrence. I firmly believe that there are cancer-fighting properties in cannabis.

I had mentioned before that several people in my family had Lynch syndrome, and none of them who were weed smokers got cancer. I really feel like that has something to do with it. I don’t think it’s a coincidence that I got cancer and they didn’t. 

I would just smoke before bed. I really feel like there was something to it. I just think of it as a medicine or vitamin. It’s the only thing that helps with my migraines. I’m not walking around stoned all day or anything, but it helps so much when you treat it with respect. 

My friends find it hilarious because I was so anti-drug. I would never have smoked weed before this.

»MORE: CBD, Cancer & Treatment Side Effects

What support was the most impactful

I couldn’t have done any of this without my husband. He was with me always. He’s amazing. He was physically taking care of me. He was there on the frontline with me. He had to work, too, so my parents and in-laws came in separately to help.

I had good childcare. I felt guilty because I couldn’t pick my son up. You can feel guilty about that stuff for the rest of your life if you let yourself. 

It wasn’t too hard to ask for help after surgery because I had no choice. I just couldn’t do things. I had to know my limits. Now, there’s nothing anyone can really do for me other than understand me. That’s all I can ask for. 

I heard from a lot of people I hadn’t heard from in forever. Friends visited. Some people came to the hospital a few times. People would send cards and texts.

I didn’t need a parade or anything, but feeling support from all over was nice. 

»MORE:  What kind of support cancer patients say helped the most

How has cancer affected your relationship with your husband?

I always knew my husband was a good guy, but this will put people to the test. He just went above and beyond.

I’ve known him for a long time, so it wasn’t surprising, but it was nice to have him stick around and be loyal. If anything, it’s affected us for the better.

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

How has it been for you being a mother with cancer?

My son is young. I still haven’t explained it completely to him because he’s so young. I just tell him my butt is broken. He knows I’m in the bathroom a lot. That’s just what I do. He’s so used to it at this point because he was only 10 months when this all started. He just knows I have some issues. 

Everything I do is for him. I had less of an option to give up because of him. I would’ve fought just as hard if I didn’t have him, but he made it more terrifying. That’s what’s frightening for everyone, I would assume, is who you’d leave behind if it didn’t go your way.

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

How has this experience shaped your perspective?

Cancer gives you instant perspective. I’m a pretty empathetic person to begin with, but it just reinforces the idea in my mind that you really have no idea what someone next to you is going through.

Sometimes, I’m not the most patient person, but I have a lot more patience now. I don’t get angry at things that don’t matter. I’m more calm. I’m more grateful for little things. That is one bonus of going through this. I don’t get obsessed with nonsense that goes on around me. 

I still want to do well, but I’m not money-obsessed. I’ve always been on the “I just want to be happy” train, and this has just solidified that. It’s not to say that I don’t want to make any money, but I’m more inclined to enjoy the way I make a living now. 

What was it like to be faced with your own mortality?

The second time around, I thought that was it. I thought I had to plan my funeral. I really didn’t know if I was going to make it.

I looked at my surgeon when I got the news about the relapse and asked, “Am I going to die?” He didn’t give me an answer because he couldn’t. I’ve blocked some of this out of my mind, but yeah, it was hard to be faced with death. 

The treatments and everything I’ve done are all very new. When the world-class surgeon at MD Anderson was giddy about my results, I knew they were special. I knew that was not normal.

He was so excited. For someone of that caliber to be that excited, I knew it was something groundbreaking.

Do you have any advice for someone who has just been diagnosed?

Take control of your health. Be your own advocate. Don’t take every doctor’s word for it. Do your own research as well. If you have a chance to go to one of the better, bigger institutions like MD Anderson or Sloan Kettering, please do it. Don’t second-guess it. 

You have to attack it and take control of the situation. You have to make sure you are getting all the answers you need and listening to the best minds possible, because not every doctor is the same.

You don’t bring a knife to a gunfight. You want the best care? Go to the best. So many people come from afar to go to those places.

Thanks for sharing you story with us, Jackie!

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