Genetic testing helped stacy martin survive gastric cancer | prophylactic total gastrectomy

DESCRIPTION

Stacy Martin says genetic testing saved her life.   The testing indicated she had the CDH1 mutation.  The mutation gave her an 80 percent chance of getting gastric cancer and a 60 percent chance of breast cancer.  She opted for a prophylactic total gastrectomy to remove her stomach and addressed the possibility of breast cancer with a bilateral mastectomy.  Without a stomach, Stacy has had to change the way she eats, requiring food every two hours, and having to completely chew everything she eats.  Despite this live-changing surgery, Stacy is leading a healthy and happy life.

Unlike most people with cancer, Stacy’s diagnosis was not preceded by symptoms.  Her mother had already been diagnosed with Stage IV uterin cancer.  That prompted Stacy and her siblings to undergo a genetic panel test.  It revealed Stacy had the CDH1 mutation, which meant she an 80 percent chance of getting gastric cancer and a 60 percent chance of breast cancer. 

She had three options but chose to be proactive with a prophylactic total gastrectomy in 2019, a procedure that removed her stomach.  It was after the surgery that pathology revealed Stacy had gastric cancer in her removed stomach. 

After successfully addressing the possibility of stomach cancer, she did the same with breast cancer with a bilateral mastectomy in 2020.

Stacy Martin said the toughest part of her cancer experience wasn’t the treatment, but what she dealt with upon its completion.  She said she had to learn how to eat, and that without a stomach, she had to eat every two hours.  While she took snacks with her wherever she went, she had to alternate between snacks and something more substantial, making sure she got enough protein and carbohydrates.  Anything she ate had to be completely chewed because she no longer had the gastric juices in her stomach that break down food.  The only thing she can’t eat are raw oysters because she says they are impossible to chew.

Stacy says genetic testing saved her life but admits it is not for everybody because the decision to go forth with such testing is a deeply personal decision because some people don’t want to know what the tests could reveal.

Despite her cancer journey, Stacy lives a happy life.  She resumed her passion of hiking near her home in Chattanooga, Tennessee, and consumption of nuts resulted in her establishing Seahorse Snacks, which she operates out of her home.

Additional Resources:

Seahorse Snacks: https://www.seahorsesnacks.com

No Stomach For Cancer: https://www.nostomachforcancer.org

TRANSCRIPT

Bruce Morton: This is the @CancerInterviews podcast.  I’m your host, Bruce Morton.  On some of our interviews, we address the subject of genetic testing.  As it turns out, our guest on this episode underwent genetic testing and it helped her get in front of gastric cancer, and she says, saved her life.  She is Stacy Martin of Chattanooga, Tennessee, here is her story, and Stacy, welcome to Cancer Interviews.

Stacy Martin: Thank you, Bruce.  I am very excited to be here.

BM: Stacy, first things first.  Before we explore your cancer journey, we would like to know a bit more about you.  So, if you would, tell us about where you are from, what you do for work, and when there is time for fun, what you like to do for fun.

SM: I live in beautiful Chattanooga, Tennessee.  I am currently employed in sales.  I sell packaging displays and signage.  I am also an entrepreneur, so I own a business called Seahorse Snacks.  We make healthy and delicious snacks in unique and unusual flavors.  I sleep occasionally when I am not doing those two things, but when I have the rare opportunity to have fun, I love to travel, I love to eat out, going to farmer’s markets and finding new ingredients.  This is an amazing place for hiking and I like to take advantage of every opportunity I can get, even though I cannot get that many of them.

BM: Most of us diagnosed with cancer were driven to seek medical attention because of some unusual symptoms we experienced; but in your case, symptoms weren’t an issue.  Tell us what led to your diagnosis.

SM: Anybody who knows me knows that I am pretty non-traditional, so the following is non-traditional.  In the fall of 2017, my mom got diagnosed with Stage IV uterin cancer and they were trying to figure out why she had it, so they did a genetic panel test on her.  They tested for 86 different genes to try to explain why she had uterin cancer.  It turns out the cancer was totally unrelated, but she learned she carries the CDH1 mutation.  I was sitting in the office with her and the genetics doctor when we got the news and thought that this didn’t sound good, but we were often fighting Stage IV uterin cancer.  It seemed like a very secondary situation, but we did learn she had the CDH1 mutation and that it was hereditary, so that there was a 50 percent chance that I and my siblings had the mutation.  So, it took me about a year to be willing to get tested because there are a lot of implications that come with genetic testing.  We still have the protections with life insurance that come with pre-existing conditions.  I don’t know where are with that today, but in those days, your pre-existing conditions could not be held against you; but as far as life insurance is concerned, that’s not true.  So, I wanted to make sure I was covered before I got my genetic testing because once it comes back, I could be determined ineligible for life insurance coverage.  I got my ducks in a row and it took about a year, and in that year I moved from Atlanta to Chattanooga, and I didn’t have a doctor here.  I called the Mayo Clinic.  They sent a kit, I got my blood drawn and sent it back up, and then one day in the room where I am sitting right now and I got a notification on my app that said you are CDH1 positive, and I didn’t know what that meant.  It was incredibly overwhelming.  The doctor wasn’t there, I couldn’t get ahold of anybody, I literally thought I was going to die, even though I was in the room with my mom when they told her of her diagnosis.  When it comes to your personal news, the situation is very different.  So, that is how I found out it was the genetic mutation.  It took over my whole life.  That’s how I found out, but it ended up saving my life.

BM: Stacy, it is never a good day to learn you have cancer, but every diagnosis is different, and every patient is different.  Against that backdrop, how did you handle getting this awful news?

SM: I cried.  When I learned I had the mutation, there was nobody around to help me.  I wasn’t in an office for a consult to help walk me through this, so three days later I finally talked to the doctor.  She said I needed to come in to do a bunch of assessments, but she told me I wasn’t going to die.  She said I needed to come in and we would figure it out.  Then I went to the Mayo Clinic to get all my tests, but I actually didn’t learn I had cancer until I had my stomach removed.  After they did the pathology on my stomach, they found 17 spots of cancer that we did not know were there because my scans came back normal, and that’s the tricky part about gastric cancer is.  The syndrome that is associated with the CDH1 mutation is called Hereditary Diffuse Gastric Cancer.  It doesn’t grow tumors.  It grows in the lining of your stomach, and it is really hard to find.  So, somebody explained to me if you took a handful of salt and threw it on a beach, then someone told you to find the salt in the sand.  It is very tricky, so even though I did the right things, they still didn’t find it.  After I had my stomach removed, they did the pathology and that’s when I got diagnosed with cancer, which is also pretty non-traditional. 

BM: By the way, we hope you will find time to like and subscribe to our channel.  And if you click on the bell icon, you will be notified the next time we post an interview.  We also want to remind you we are not distributors of medical advice.  If you seek medical advice, please contact a licensed healthcare professional.

Stacy, you had had your stomach removed, you learned you had cancer and with different types of cancer, there are numerous treatment options, while with others, there is only one way to go.  With your diagnosis, what were your treatment options?

SM: With the CDH1 mutation, they thought it occurred in one of nine million people, so it was very rare.  I pretty much had three choices: I could do nothing, I could do surveillance every six months and wait for them to find something or I could have a prophylactic total gastrectomy, which is removing my stomach, then getting along with my life.  I chose the latter.  So, hereditary gastric cancer represent only two percent of all gastric cancers in the world and stomach cancer is the fifth-most common cancer in the world but is the third-most deadly.  Most of the time when people are diagnosed with gastric cancer, it is typically in its late stages and there are not a lot of treatment options available.  Science has come a long way in a very short period of time, so there are treatments that are evolving very quickly, but still, more people are not surviving than are surviving.  When I learned of my diagnosis, the five-year survival rate as somebody with a Stage IV diagnosis was less than five percent.  That was a whole part of my decision.  If I didn’t act right away, if they found cancer, they wouldn’t find it until it is too late.  I am not interested in living, with how much time I have on this Earth, suffering, so that is really what motivated me to be proactive, but it turned out to be the right choice for me.

BM: Stacy, you mentioned statistics.  The following is not a statistic, but it is most definitely part of the equation in your treatment.  When one is diagnosed with a rare cancer, it is bad enough that you have cancer, but what is also bad is that there is a scarcity of cogent, competent doctors to treat your type of cancer, so I have to ask: Was it difficult to find a good care team and were you pleased with yours?

SM: That’s a really excellent question. Through the studies and the research, we found it is more common than we thought.  Instead of one in nine million, it is more like one in 200,000.  I went to the Mayo Clinic because that is where my mom was being treated.  While I was there having my initial assessments, they told me about a study that was being conducted at the NIH, the National Institutes of Health, specifically on CDH1, and so I did a lot of research, and I found the study.  Dr. Jeremy Davis was leading the study, and he did two gastrectomies a week, which was more than anybody on this planet was doing.  He was leading the research to figure out what turned on the gen to turn on and be cancerous.  He was trying to figure out if there were early screening protocols.  Because he had done so many gastrectomies, he was able to determine he doesn’t automatically recommend total gastrectomies for everybody because of the repercussions after the procedure.  I am very, very grateful to be alive, but I am little more high maintenance than I was before.  I was so fortunate to learn of this study from the NIH, which I truly believe resulted in my getting the best care possible.  He had a whole support team to support all of his patients that included a dietician because nutrition support post-treatment is life-changing, we had a pharmacist available because our bodies don’t all react the same way.  There is a psych team because some people develop food aversions and aversion to eating, if you think about having to eat every two hours, which is a huge hill to climb.  So, it was really wrap-around services for everything you needed to make sure your outcomes were as good as humanly possible.  Also, I was really, really excited to participate in research because for me there weren’t a lot of options, so if we could find a chemo-preventive way to treat this so that more people can live to have a better quality of life and not automatically have their stomachs removed, I am all for that.  Unfortunately, the study closed at the end of 2024, so that is no longer happening, but the research that came out of it can benefit everybody in the world.  One of my biggest concerns was, I didn’t even have a doctor here in Chattanooga when I moved here, when I found out about this.  I didn’t want somebody Googling, “How do I take out a stomach?” while I was in the office and then claim, “I can do this.”  So, I was very picky.  I went through all kinds of options.  I even looked into going to Switzerland to get my genes edited so we could go ahead and take them out and wouldn’t have to worry about anything else.  Anyway, I was very, very fortunate to find the study when I did; and there are other great providers in the country, but they are few and far between because this cancer is so rare.  So, making the decision and having the privilege of getting the care where I wanted to get it was truly a blessing, but also an investment because the quality of life on the other side hinges on how that goes. 

BM: So, you had the study on your side and a top-tier care team.  Looking back on the prophylactic TG, what was the toughest part of the procedure?

SM: I don’t think anybody has ever asked that question before.  I think a lot of the unknowns, because everybody’s journey is different. I am a huge foodie, so eating, enjoying meals with people, enjoying that part of my life is a major part of my life, so I didn’t know how that was going to be.  I didn’t know if I was going to need a feeding tube or if I would need a colostomy bag.  There are just so many unknowns.  I was very protective of my mental space before I went in for the surgery.  I was trying to convince myself that I made it through.  I have a great track record.  I have made it through every one of the challenges I have had to face thus far in my life, so I felt like this was going to be any different.  Even though I don’t know what is going to happen, I know that I have made it through everything thus far and I didn’t feel like that trend was going to change, so I really had to believe in that.  So, a part of this genetic mutation is that it is an 80 percent chance of getting stomach cancer and a 60 percent chance of getting breast cancer in my lifetime, so there are two cancers associated with it.  It only took one surgery to get rid of my stomach, but it took three for my mastectomy.  You would think that would be a much easier situation, but I guess it is just a little more nuanced, and it took a couple more tries.  Even though the surgery was life-changing, the eating and the learning how to live after the treatment the first year was by far the toughest.  I had my surgery in 2019, so I am pretty far removed, but the first year was so tough.  It was the healing from the surgery, the actual surgery, the changing your brain, self-care was no longer negotiable.  Before I would just work and I would eat later.  But now, my snacks are not negotiable.  I don’t go anywhere without food.  I always wonder if I have snacks and what I am going to eat.  That used to be exhausting, but now it is autopilot.

BM: You have talked about your eating routine.  Tell us a little more about it.  What can you eat and what can’t you eat?

SM: So, at the beginning I was on a very restricted diet.  I felt like I was a toddler, so I ate a lot of cheese sticks and chicken fingers; but after about three months, you are pretty much set free to experiment.  Now I eat everything, except raw oysters and that is because I have to chew everything.  Your stomach does a lot of work to break down your food.  I don’t have a stomach, so the breakdown of the food has to start and finish in my mouth.  I have to chew everything to a puree before I swallow.  The way that I eat is a little bit different.  My food pyramid is a bit upside down now.  I start with protein and it is mainly meat, so, animal protein, then vegetables, then if I have room I will do carbs, but now I am the protein whisperer.  I know how much protein is in everything I eat.  That is how I choose to fuel.  That is what keeps me full and keeps me steady.  All calories are not created equal, so I eat a lot of snacks back-to-back it doesn’t make me feel good, so I will eat a meal and then a snack and then a meal and then a snack because that is how we figured it out. 

BM: Once you sensed you were moving toward survivorship, how exciting was that?

SM: My recovery coincided with COVID.  I had my surgery in 2019.  I was ready to go back to work in 2020 and then in March, COVID happened.  It was interesting because it extended my runway for healing because everybody was stuck in the house and we couldn’t do things.  It occurred to me I was already good at this because I had been doing it for the last four months.  That helped me ease back into the world, also I wasn’t missing anything because the world wasn’t participating in anything at that time.  It sort of was a gift in that aspect of things and I found during that time that I wanted to engage in advocacy, which provided me a way to give back.  I was a direct beneficiary of research and funding, so that’s I got into my advocacy work.  That is a celebration of my survivorship, also that’s when I started my company.  Seahorses don’t have stomachs, so that’s why it’s called Seahorse Snacks and in my quest of wanting to find things to eat, I made them for me.  It is really hot here and I don’t want to keep a cooler with me, so being able to throw these snacks in my purse and eat ‘em on the go is incredibly convenient for me, and so that is where it all started.

BM: Stacy, we are about to wrap up now, but we have one more question for you.  If you ran into someone who was on the fence about genetic testing and they asked you for advice, what would you tell them?

SM: That’s an incredibly personal decision, and you are the only one that can make it.  There are a lot of great things that can come out of it.  It allows you the information to make decisions, but there is also information that you may not want to get.  When I got tested, I thought I was just going to get it so I could rule it out, so I could move on with my life.  That is exactly NOT what happened.  A lot of my extended family members absolutely know about my journey, they know about the whole thing and they still have not gotten tested.  It is an incredibly personal journey, so wanting to know and being willing to deal with the repercussions of your decision, but also being prepared, like with the life insurance part of things, that’s not a small factor in the decision because it affects your future opportunities, so it’s not a thing to do lightly.

BM: Excellent.  Stacy Martin, Chattanooga, Tennessee, the queen of Seahorse Snacks, thanks very much for sharing your story, so much useful information and we hope that it helps somebody and it gives them information that they can use to make a cogent, competent decision where genetic testing is concerned.  Stacy, thanks for being with us on Cancer Interviews.

SM: Thanks for having me, Bruce.  It was my pleasure.

BM: And we want to remind as we always do when we conclude, that if you or a loved one are on a cancer journey, you are not alone.  There are people out there like Stacy Martin who provide information and inspiration that can ease the cancer experience.  So, until next time, we’ll see you on down the road.

Additional Resources:

Stacy’s Healthy Snacks: https://www.seahorsesnacks.com

SHOW NOTES

Stacy Martin, Gastric Cancer Survivor – Chattanooga, Tennessee, USA

Stacy Martin says genetic testing saved her life.   The testing indicated she had the CDH1 mutation.  The mutation gave her an 80 percent chance of getting gastric cancer and a 60 percent chance of breast cancer.  She opted for a prophylactic total gastrectomy to remove her stomach and addressed the possibility of breast cancer with a bilateral mastectomy.  Without a stomach, Stacy has had to change the way she eats, requiring food every two hours, and having to completely chew everything she eats.  Despite this live-changing surgery, Stacy is leading a healthy and happy life.

Additional Resources:

Stacy’s Healthy Snack Business: https://www.seahorsesnacks.com

Time Stamps:

03:25 Stacy reveals the unusual way in which she learned she had a genetic mutation.

06:30 News of her mutation led to the removal of her stomach, which led to her gastric cancer diagnosis.

08:54 Discusses her treatment options.

11:10 Stacy is asked how difficult it was to find a competent team to treat her rare cancer.

15:28 Is asked to name the toughest part of the procedure.

16:56 Said the mutation revealed a 60 percent chance of breast cancer.

17:30 Learning how to eat post-treatment was a challenge.

18:37 Stacy on the foods she can and cannot eat.

KEYWORDS (tags):

gastric cancer

stomach cancer

genetic panel test

prophylactic total gastrectomy

CDH1 mutation

hereditary diffuse gastric cancer

stacy martin

breast cancer

mastectomy

bruce morton