Lexi Mestas | ovarian cancer | irritable bowel syndrome | transvaginal ultrasound | debulking surgery

DESCRIPTION

In her late teens, Lexi Mestas was suffering from symptoms of ovarian cancer, but didn’t know they were related to ovarian cancer until undergoing the necessary tests.  Diagnosed with Low-grade Serous Carcinoma, Lexi via debulking surgery, she had both ovaries removed, along with her spleen, appendix, omentum and a hysterectomy.  Lexi achieved survivorship, but lost her battle with cancer in 2023 at the age of 29.

TRANSCRIPT

Bruce Morton: Greetings and welcome to the Cancer Interviews podcast.  I’m your host, Bruce Morton.  No cancer journey is easy, but some are tougher than others, and one of the toughest is tied to ovarian cancer.  Our guest on this episode is Lexi Mestas of Mobile, Alabama.  Now, let’s hear her story, and Lexi, welcome to Cancer Interviews.

Lexi Mestas: Thanks for having me.

BM: It is our custom to start off the same way, and that’s to learn something about you exclusive of your cancer journey.  We would like to know where you are from, what you do for work, and when time allows, what you do for fun.

LM: I am originally from Biloxi, Mississippi, pre-Katrina, and post-Katrina, I moved to Mobile, Alabama, and from there I went to school in New Orleans, where I studied Political Science and Middle East Peace Studies, with a focus in Food Diplomacy.  Then I went to grad school in Rome, Italy, at American University in Rome, studying food studies and from there, I went to Philadelphia, where I worked in Camden University, doing nutrition education specializing in urban food access.  Then I was diagnosed in February 2021.  My focus is still in public health, but has changed a little bit to the ovarian cancer world specifically.  For fun, I love to spend time with my dog that I adopted after my diagnosis, treatment and recovery, spending time with my husband and my family.  I very much enjoy cooking and eating.

BM: For those of us who don’t know, what is food diplomacy?

LM: The idea behind food diplomacy, and I focused on a relationship between Iran and the United States, and how the relationship between their populations is different than between their governments, and this idea of culture sharing, food culture sharing could break down some boundaries and barriers that we typically face, in not knowing much about each other, so that we can build a healthier, sustainable relationship.

BM: Is food diplomacy related in any sort of way with a term we hear all too often, that of food insecurity?

LM: It’s not, but I have worked my whole career in food insecurity, SNAP education, SNAP, the Supplemental Nutrition Assistance Program, as an education piece and we aim to try and help people who are SNAP-eligible, maximize their benefits.

BM: As for your cancer journey, when did you notice something was abnormal, something that got your attention?

LM: I actually had symptoms for about eight years before my ovarian cancer diagnosis.  Ovarian cancer mimics symptoms of Intestinal Bowel Syndrome, or IBS, and low-grade serous carcinoma to start what is called “borderline,” and it has never been confirmed if that’s what I had, but I had the implants on my ovaries in that same fashion that someone with a borderline ovarian syndrome may have, which is a pre-cancer, if you will.  So, I started experiencing these symptoms when I was about 18 years old, and it was a lot of abdominal discomfort.  I had very heavy menstrual cycles, so I ended up being on birth control early, and I had intense breakouts, just a lot of overly active estrogen and weight gain and things like that.  I saw many different doctors.  I saw GI doctors, I saw gynecologists, and the decision was simply to put me on birth control and say that my problem was IBS and for me to be okay with living with a certain level of pain; but in February of 2021, the pain became just so unbearable that I was vomiting uncontrollably that I had to go to the emergency room.

BM: There was a tipping point in which you decided to be seen, albeit at a different level.  How would you describe the chain of events that came after that?

LM: I had had a couple of really intense episodes of pain, and it affected the color of my face, just an extreme kind of pain in my stomach.  I met with my GI doctor who said I was constipated.  I felt like I wasn’t being listened to.  Then it happened again, a couple months later.  This was a different kind of pain.  It again affected the color of my face, but this time it was accompanied with vomiting, and I just couldn’t control it.  It was a very intense kind of pain, and my husband called the nearest hospitals and asked what the wait time was in the emergency room.  We ended up going to Jefferson Hospital in Philadelphia, where I was living at the time.  I went in convinced that I had something going on with my bowels because I had been told for so long that I had IBS.  They took one listen to my bowels, and told me my bowels were fine, and they needed to figure out what was going on.  I then went through about 24 hours of them putting me through transvaginal ultrasounds and x-rays and all these different things for them to finally see I had a cyst on my left ovary that was so large that they actually could not see the ovary and they were convinced that my ovary was twisted, which was causing the pain.  We had emergency surgery.  I recovered quickly and was walking within a few hours.  They told me they saw nine total cysts, three on my left ovary, one the size of my hand, and they sent them to a pathologist, just in case.  That was February 9 of 2021.  On February 15, the surgeon who was in the emergency room that day, and my primary care doctor, called me to tell me I had cancer.  At the time they said they didn’t actually know if it was ovarian cancer because the sample they sent to Pathology was so small they couldn’t confirm exactly what it was.  What we did know was that we needed to take further steps.

BM: I am guessing that in the years that preceded this you had done some research and you had through these complications.  As horrific as this news was, to some degree, were you prepared for it?

LM: I don’t think anybody can really be prepared for the word ‘cancer.’  That is just very heavy on so many levels, what you feel.  There is, to an extent, a sense of relief that now you know what is causing your pain; at the same time, you feel that sadness, the anger, the frustration, the anxiety, there is very intense fear, especially with the kind of diagnosis I received.  I felt a little bit of relief that I felt better after my debulking surgery.  Most people really struggle through chemotherapy, but I did not.  I worked out, I exercised, I maintained my healthy diet.  So, I felt good, but it doesn’t take away from that sense of dread and fear that cancer can bring.

BM: And what is the name of your particular diagnosis?

LM: Low-grade cerous ovarian cancer.  It grows on your tissues.  Low-grade is different from the more common high-grade, which grows more aggressively and includes large tumors.  Low-grade has been described to me as growing like sandpaper on your tissue.  It includes very small tumors and the reason why it is so challenging, of course, all ovarian cancers are challenging because it does mimic IBS and different GI-related diagnoses.  Because of that, it is typically Stage III and IV, so it leaves you to fight this later in the game and leads to more complications and challenges than an early diagnosis.  It is tough because these cells are abnormal enough to be cancerous, but they are not abnormal enough to be responsive to chemotherapy, so typically, low-grade serous patients are not responsive to chemo, and it is treated as a chronic disease that we are expected to live with as long as we live and cycle through different treatments and therapies, which are funded in the way we would like to have leading to some sort of cure, or a treatment that works for all of us, and works for more than just a few years.  The average lifespan is 10 to 12 years for someone who is diagnosed with low-grade cerous and the majority of us are in our 20s and 30s, which is very sad for us, and we only receive one percent of all funding for ovarian cancer research, so we rely on private funding, which is why we have leaned on organizations like www.cureourovariancancer.org, which is just so incredible.

BM: And I want to get to Cure Our Ovarian Cancer just a little bit later, but you had referenced treatments and therapies.  If you would, describe those treatments and therapies.

LM: There are many.  The most important one is your surgery, your debulking surgery, where your doctor will help you remove all your visible cancer.  For most of us, because it is diagnosed at Stages III and IV, that means a full hysterectomy, appendectomy, spleenectomy, I personally had my spleen removed, scraping of the omentum, my bladder flap, it is quite an extensive surgery, and it takes a long time to recover from that.  Then it is typically followed up with six cycles of platinum-based chemotherapy by IV over the course of 18 weeks, and from there, the protocol right now is to put patients on a hormone blocker because most of our tumors are estrogen positive.  Mine is 90 percent estrogen positive, so they put you on letrozole hormone blocker.  However, it has been determined that the letrozole wasn’t working and I may be experiencing my first recurrence and the next treatment option available for me is called trametinib, which is typically given to those with melanoma.  There are other opportunities for treatment, such as avastin and other IV treatments that are platinum-based, for followup, but it is documented that 95 percent of those with low-grade experience a recurrence.

BM: Lexi, we get to the aftercare phase, and who would you say during your aftercare was your biggest source of support?

LM: I would start with my aunt.  She is the only person in my family who has ever been diagnosed with cancer.  She had Stage I breast cancer, but she also is a lifelong oncology nurse, so she was an incredible source of information as well as that love and care that you can get from a family member.  My husband has been incredible, as well as my parents.  As far as resources, I had two that were really wonderful, one not so much related to ovarian cancer specifically, but it is a program called Unite For Her, for anyone who is in the greater Philadelphia area.  If you have been diagnosed with breast or ovarian cancer, you can sign up to receive a gift package as well as a passport that will allow you to take part in free services.  I spent all of mine on acupuncture, which was very helpful for me.  There is also Cure Our Ovarian Cancer, which is the leading low-grade serous organization in the world, led by Jane Ludemann.  She is fabulous and very inspirational, but their website provides great website provides just great detail about what low-grade serous is, the research that is being done, research that they are supporting, doctors who they have brought together in this consortium and really help to provide a lot of hope, and connect you with a lot of different people with ovaries who are going through what you are going through; for me, most notably, the Facebook group page has been a great way to stay in touch with people who are going through what you are going through.  It can be very isolating to have cancer, let alone a rare subtype like this and to be young and going through this, so it is a great resource, and it is an organization that is doing wildly impactful.

BM: And its web address, and this is all one word, www.cureourovariancancer.org.  Now, getting back to your aftercare, Lexi, what would you say was the toughest part?  Was it chemo?

LM: I actually had a fairly easy time with chemo.  I had a tough time when it came to the steroids and sleeping for a few days.  I didn’t have the typical symptoms that most people have, like nausea, vomiting, camps, neuropathy, I didn’t have any of that, didn’t lose my appetite, I was able to maintain exercising.  I think the hardest thing is trying to live beyond the fear, of letting the fear be present in my life every day and trying to find some sort of normalcy.  I did not know what I was going to need after treatment, I don’t think anybody who is going through this for the first time, does.  Anyway, I made the decision to make a large, cross-country move to be near family and all that has been great for me.  The cultural shock (moving from Philadelphia to Mobile) has been a lot and I treated myself a little bit like I was dying I think in a way rather than seeing the other side as an opportunity to live, so I feel like I am 28 and I am retired a little bit in this sleepy town, so I am chomping at the bit to get back to living and make a change.  I honestly think that the mental struggle has been harder than any of the physical.

BM: And is there anyone, your aunt, your husband, who can help you with that piece or is that something that only you can do yourself?

LM: I think there is an element in which you feel like you can only do it yourself, but I am the only person I know that has this kind of cancer, going through it so young.  I feel very ‘odd man out’ when it comes to my sisters, and you know, everybody else can have babies and do all the things I can’t, and that is sad; but I think there are ways to get past that feeling, being isolated, and my aunt having gone through her own cancer journey is incredibly helpful, but leaning on the support from the Facebook group and knowing that I am not alone, and knowing these people are experiencing what I am experiencing and so many of them are well into their journey, they have defied the odds and are past the 10 or 12 years, and they have a lot of insight and support.  Some of them, at the drop of a hat, will take my call and be ready to talk to me and encourage me and let me know that a number is a number, I am not a number, and there is a lot of life to live, which is priceless when you are in my situation.

BM: It sounds like the people from the Facebook group have been a great deal of inspiration.

LM: Absolutely.

BM: You have talked about some of the things you can’t do, but you had mentioned that exercise had been a part of your life.  In terms of exercise and other things, what can you do now that your could do pre-diagnosis?

LM: During treatment and now, I exercise daily, I can do different types of yoga, I love to get on my rebounder and do different bounce routines on the trampoline, and right now, I am training for a 10K, am very excited about that, it is on my life list, running a race, so I have been able to maintain exercise and that feels very good to me.  I don’t feel like my body has changed much, I feel like most of my issues have been resolved with my cancer treatment and I feel like I can continue doing those things, and that’s been a good constant for me.  I was leading a county program, and my career was very social justice-driven in the public health world, and I am very action-based, so with the diagnosis that sometimes feels out of control, I feel like I don’t have much control over it other than maintaining good baseline health and trying to be positive, and exercise.  I found a lot of peace and I still do, in fundraising for low-grade serous, and advocating.  I worked ACS in Pennsylvania to speak with the correctional cancer caucus about raising research funding.  I made media appearances in Philadelphia.  I have done a number of podcasts, have my own Instagram page and have spoken out and provided people with resources and access to my own story through writing a blog.  My fundraising effort has hit $50,000, and it gives me a reason to be active in the solution, whereas when I was first diagnosed, I just felt so lost, so finding that has really provided me with a lot of direction.

BM: Lexi, we are going to move to our conclusion, and whereas we start our interviews from the same place, we like to end them in the same way each time.  That said, I will ask, if you had a one-on-one audience with someone who has been diagnosed with low-grade, if your message had any one overarching point, what would it be?

LM: Keep pushing for answers until you get the answers that you want.  If you feel that you are not being heard, not being listened to, it’s okay to ask for a second opinion, it’s okay to choose a doctor you feel is providing you the care that you need, and if you experiencing bloating or frequent urination, changes in your bowel habits, and you have abdominal pain in combination for more than two weeks, ask your doctor for a CA125 blood test and a transvaginal ultrasound, and really keep being your best advocate.

BM: By the way, when you brought up the things that you said one should request, I am curious; is it easy to obtain those sorts of screenings, and I ask because with other types of cancer, screenings are easy to get?

LM:  Insurance is always a challenge, but I think if you have a family history of ovarian cancer and you are experiencing these symptoms and you are being denied access to these tests, make sure that is being documented on your chart, and continue to ask and go see other doctors until you are able to get those tests.  I did not know that was something I should be asking for, I did not know these are symptoms of ovarian cancer, so the more that you are able to keep pushing and know that pain every day is not normal, the better your outcome will be.

BM: All right, Lexi, thank so much for some great information, and going forward, I certainly wish you the best with your disseminating key information that can be of use to other people, and best wishes with that 10K.  Lexi, thanks so much for being with us.

LM: Thank you for having me.

BM: And that is going to wrap up this edition of Cancer Interviews.  To echo what Lexi had said, as you go through the cancer journey, you are not alone, so until next time, we’ll see you on down the road.

Additional Resources:

Support Group:

Cure Our Ovarian Cancer: www.cureourovariancancer.org

SHOW NOTES

TITLE: Lexi Mestas, Ovarian Cancer Survivor – Mobile, Alabama, USA

In her late teens, Lexi Mestas was suffering from symptoms of ovarian cancer, but didn’t know they were related to ovarian cancer until undergoing the necessary tests.  Diagnosed with Low-grade Serous Carcinoma, Lexi via debulking surgery, she had both ovaries removed, along with her spleen, appendix, omentum and a hysterectomy.  Lexi achieved survivorship, but lost her battle with cancer in 2023 at the age of 29.

Additional Resources:

Support Group: Cure Our Ovarian Cancer http://cureourovariancancer.org

Cancer Interviews: https://www.cancerinterviews.com

Time Stamps:

03:31 Lexi reveals when she first noticed something wrong.

05:36 What happened after severe vomiting led to a trip to the Emergency Department.

07:39 Doctors found a large cyst on her left ovary, which led to emergency surgery.

08:40 Told by telephone that she had cancer.

10:22 Lexi says she felt better after debulking surgery.

10:43 Describes low-grade serous carcinoma.

13:25 Describes her treatment.

19:48 The hardest part about post-treatment.

23:07 Lexi says she can exercise daily.

26:22 Advises candidates for ovarian cancer to get all the information they need.

KEYWORDS (tags):

ovarian cancer

irritable bowel syndrome

low-grade serous carcinoma

bruce morton

transvaginal ultrasound

chemotherapy

debulking surgery

lexi mestas

hysterectomy

splenectomy

omentum

letrozole

trametinib

avastin