Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Samantha R. is a three-time cervical cancer survivor from Las Vegas, NV, who has turned her experience into a passion for health advocacy. She emphasizes the importance of listening to one’s body and advocating for oneself in the healthcare system.
Samantha’s story started in 2016, when she first experienced symptoms like irregular bleeding and pain, which led her to visit her OBGYN. After a Pap smear revealed abnormal cells, she underwent a LEEP procedure. However, she delayed follow-up appointments, which allowed her condition to worsen. Eventually, her doctors diagnosed her with cervical cancer at the age of 27, shortly after her wedding.
Samantha and her husband were devastated by her diagnosis, especially since they were eager to start a family. Her treatment involved a radical hysterectomy, which was physically and mentally challenging. The surgery altered her life significantly, affecting her identity as a woman and her future family plans.
Samantha’s cancer’s recurrence, in 2018, was marked by severe symptoms that her doctors initially dismissed as stress or a UTI. After months of her pushing for answers, they finally diagnosed her with a large tumor in her cervix and intestines. This led her to find a new medical team who took her concerns seriously. She underwent surgery to remove the tumor, followed by chemotherapy, immunotherapy, and radiation throughout 2019. By the end of the year, her medical team declared her cancer-free, but her journey wasn’t over.
In March 2020, Samantha faced another recurrence. This time, the cancer had significantly affected her intestines and surrounding organs. Despite being told by one oncologist that nothing more could be done, she sought treatment in Los Angeles. There, she underwent a pelvic exenteration, extensive surgery that removed all organs in the pelvis. The procedure gave her a 50/50 chance of survival, and after two and a half months in LA, she finally entered remission.
Samantha emphasizes that the mental health impact of cancer is often overlooked. The trauma of her experiences left her with PTSD, anxiety, and a constant fear of recurrence. She credits her mental health recovery to therapy and self-compassion, acknowledging that healing from the emotional scars of cancer is a long and ongoing process.
Samantha advises those facing similar challenges to advocate for themselves, seek second opinions, and connect with support communities. She highlights the importance of accessing social workers and other resources available through healthcare facilities. For those without insurance, she recommends seeking help from nonprofits that offer mental health support and community-building opportunities. Above all, she encourages people to offer themselves grace and compassion, recognizing that they are doing the best they can in difficult circumstances.
Samantha’s story is one of resilience, self-advocacy, and the power of community. She has learned to navigate the complex and often frustrating healthcare system and now dedicates herself to helping others do the same.
Name:
Samantha R.
Diagnosis:
Early stage cervical cancer, adenocarcinoma
Initial Symptoms:
Irregular bleeding
Pain
Treatment:
Surgery: radical hysterectomy, pelvic exenteration surgery
Chemotherapy
Immunotherapy
Radiation therapy
Hormone replacement therapy
Hyperbaric oxygen therapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy)
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Joe’s Rare Desmoplastic Small Round Cell Tumors (DSRCT) Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Joe F., a fitness enthusiast from Brighton, MI, shares his journey of being diagnosed with a rare and aggressive cancer, desmoplastic small round cell tumors (DSRCT), a type of soft tissue sarcoma. Only around 200 cases of this kind of cancer have been reported worldwide since its discovery in 1989.
Joe’s story begins with mild abdominal pain and fatigue that led him to seek medical advice, only to discover through a CT scan that he had multiple tumors in his abdomen and pelvis. This shocking diagnosis came as a blow, especially considering Joe’s dedication to a healthy lifestyle for over 22 years.
Initially, Joe’s doctors misdiagnosed his illness as small cell carcinoma, a type of lung cancer, which led him to seek a second opinion at MD Anderson. However, the oncologist there discovered that the primary tumor was not in his lungs after all. A clinical trial doctor at MD Anderson re-evaluated his biopsy results, diagnosing him with DSRCT.
Joe’s treatment journey was grueling, involving 6 cycles of aggressive chemotherapy–vincristine, doxorubicin and ifosfamide. Despite the challenges, including severe side effects like debilitating bone pain, Joe’s physical fitness allowed him to endure the rigorous treatment regimen. After completing chemotherapy, Joe faced another hurdle when he found out that all the specialized surgeons at MD Anderson had retired. He sought out Dr. Lilja at Memorial Sloan Kettering Cancer Center, a leading surgeon for this type of rare cancer.
Joe’s surgery was divided into 2 intense procedures, each lasting about 10 hours. The first surgery involved removing tumors, lymph nodes, his spleen, part of his diaphragm, and the omentum, which is a layer of fat that holds organs in place. Remarkably, Joe was up and walking within 24 hours post-surgery, demonstrating his resilience. After a short recovery, Joe underwent a second surgery to remove more lymph nodes and tumors from his pelvis, which concluded with the oncologists declaring him in remission.
Despite this positive news, Joe remained cautious, knowing the aggressive nature of DSRCT. To minimize the risk of recurrence, he opted for 2 additional cycles of chemotherapy, followed by whole abdominal radiation. Radiation therapy proved to be another significant challenge, causing extreme fatigue and severe side effects that sometimes led him to question his ability to continue.
Recently, a scan discovered that Joe’s cancer had recurred in 2 lymph nodes in his neck. He has resumed chemotherapy and will likely be on chemo for an extended period.
Joe’s experience highlights the unpredictability and severity of cancer. His story is a testament to the importance of perseverance, a strong support system, and the will to fight through the toughest of battles. Joe continues to face the physical and mental toll of his treatments, but his commitment to overcoming this rare and aggressive cancer remains unwavering.
Name:
Joe F.
Diagnosis:
Desmoplastic Small Round Cell Tumors (DSRCT)
Initial Symptoms:
Mild abdominal pain
Fatigue
Treatment:
Surgery: removal of tumors, affected lymph nodes, spleen, part of diaphragm, omentum
Cancer details: Rare, <3% of all soft tissue tumors, more common in women 1st Symptoms: lump found in right armpit Treatment: Chemo, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation
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Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Jennifer’s story is a powerful testimony to resilience, self-advocacy, and the love of life, even in the face of stage 4 melanoma. She discovered her cancer in 2019 after what she thought was a simple bug bite turned out to be something far more serious. Despite the initial shock, confusion, and overwhelming emotions following her diagnosis, Jennifer has remained steadfast in her determination to live life on her terms.
One of the critical aspects of Jennifer’s experience has been her proactive approach to her treatment. After her initial diagnosis, she sought a second opinion at MD Anderson, which she credits with extending her life. Her advice to others is clear: find a specialist in your type of cancer and ensure that you are fully informed about your diagnosis, including getting genetic and biomarker testing done as early as possible.
…find a specialist in your type of cancer and ensure that you are fully informed about your diagnosis…
Jennifer M. – Melanoma
Jennifer’s life as a single mother battling stage 4 cancer adds another layer of complexity to her story. Financial struggles, the lack of systemic support, and the challenges of balancing work with her health needs make her situation particularly difficult. Yet, she finds strength in her love for her children and her sheer will to live. Her perspective on life has changed, focusing more on her own needs and desires, and choosing to live in the moment despite the constraints.
Jennifer’s story also highlights a broader issue—the need for better support systems for single parents and individuals facing severe illnesses. Her experience underscores the importance of self-advocacy and taking control of one’s treatment path, as well as the critical need for awareness and early detection when it comes to melanoma, a cancer often misunderstood as just a “mole.”
Jennifer’s journey serves as a reminder of the importance of living fully, advocating for oneself, and seeking the best possible care, no matter how daunting the circumstances may be.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
26-year-old Payton G. hails from Dallas, TX. She is a survivor of stage 3 lung cancer (adenocarcinoma with mucinous features).
Payton’s cancer first manifested as chronic sputum or phlegm in her chest, and acid reflux so bad that she would wake up choking on stomach acid. The first doctor she saw put her on antacids and referred her to a sleep specialist. But Payton also began to experience a strange pain in the left side of her chest.
When one night, the pain was excruciating enough to wake Payton up, her husband rushed her to the hospital. A CAT scan revealed an enormous abscess on the lower lobe of her left lung. Antibiotics were prescribed and initially shrank the abscess, but doctors took a closer look when they stopped working. A chance biopsy undertaken by one doctor, acting on a hunch, finally revealed Payton’s cancer.
Payton underwent a successful complete lobectomy to remove the tumor. She underwent 4 rounds of chemotherapy (Alimta and Cisplatin), and experienced some side effects such as excessively dry skin, hemorrhoids and extreme fatigue–but was declared NED after another CAT scan failed to turn up any evidence of disease.
Payton credits her family and faith for healing her and for helping her stay hopeful all throughout. “No matter what comes your way, as long as you have breath in your body, there’s still hope. There’s hope in God, there’s nothing too hard for God.”
Name: Payton G.
Diagnosis:
Lung cancer (adenocarcinoma with mucinous features)
Staging:
Stage 3A
Initial Symptoms:
Chronic phlegm in the chest
Acid reflux
Pain in the left side of her chest and back
Treatment:
Surgery: complete lobectomy to remove the tumor
Chemotherapy (Alimta, Cisplatin)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Hollan is being treated for stage 3A small cell carcinoma of the ovary, an extremely rare kind of cancer.
Hollan’s symptoms–severe pain in her abdomen and under her stomach, bloating, hot flashes, and fever–started back in November 2023. She initially shrugged them off as nothing more than gas pains, but saw a doctor when they persisted; only to be told that all she had was a urinary tract infection and to be sent home with antibiotics.
Hollan got a second opinion, but was told that it was nothing more than a really bad stomach virus. She returned to the emergency room and insisted on a CT scan, which revealed a volleyball-sized mass in her abdomen along with 19 lbs of fluid. The doctors successfully removed both fluid and mass and sent the mass to pathology. After a month, the diagnosis came back: stage 3A small cell ovarian cancer.
Hollan and her family quickly found a specialist in Cincinnati who could treat her cancer. He ended up administering HIPEC. The treatment was successful. Despite side effects such as hair loss, bad mouth sores, significant hearing loss, neuropathy in her extremities, and reduced kidney function, she is now NED. She is now preparing to undergo a stem cell transplant as part of her treatment.
Hollan’s experience has helped her develop a completely new outlook on life. “Cancer has absolutely changed me and changed my mindset about life and death,” she says. Having had mental health struggles in the past, her brush with cancer has fortified her will to live. She urges fellow cancer patients to listen to your body and advocate for yourself.
“You just have to get through cancer and whatever that means to you, make it be what you live for… So I just hope that you can find something that will hold you here.”
Name: Hollan C.
Diagnosis:
Ovarian cancer
Staging:
Stage 3A
Initial Symptoms:
Severe pain in abdomen and beneath stomach
Bloating
Hot flashes
Fever
Treatment:
Surgery: removal of mass in abdomen
Chemotherapy: HIPEC
Stem cell transplant
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Mike’s Stage 4 Diffuse Large B-cell Lymphoma (DLBCL) Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Mike got through stage 4 non-Hodgkin diffuse large B-cell lymphoma (DLBCL). He has been in remission for 3 years now.
Mike did not experience any initial symptoms at all. His cancer was uncovered quite by accident. In the process of setting up his new house, Mike supposedly hurt his back and began to experience profound, persistent pain. His back pain got so bad that at one point he thought he was experiencing a heart attack. A visit to a chiropractor worsened the situation; a chest adjustment led to Mike experiencing a shock throughout his entire body, and a few hours later, he could barely walk.
An MRI revealed the cause of Mike’s pain: a spinal tumor. His surgeon removed the tumor, and it was found to be cancerous. Mike’s oncologist also put him on chemotherapy; he was treated with R-CHOP (cylophosphamide, doxorubicin, vincristine, rituximab, and prednisone).
Mike responded well to his treatments, despite struggling with side effects like intense leg pain, hair loss and, strangely, weight gain; he was still able to work while undergoing chemo.
Aside from his treatments, Mike also credits the steadfast care and constant attention provided by his wife, a nurse, and his family, as well as the comfort and stability provided by his faith and his friends, for his recovery. His story underscores the importance of finding care–not only medical care, but also emotional support, given the toll cancer can take on one’s emotions–as well as how crucial faith can be during treatment and afterwards as well.
Name: Mike E.
Diagnosis:
Diffuse Large B-cell Lymphoma (DLBCL) (Non-Hodgkin Lymphoma)
Staging:
Stage 4
Symptoms:
No noticeable initial symptoms
Persistent, significant back pain which led him to have the MRI that exposed his spinal tumor
It is your game… play it the way that you need to. You will know when to do it.
You know it is your game to play.
Introduction
My name is Mike.
I live in Rincon, GA, which is about 20 minutes outside of Savannah, GA. I’m originally from Savannah.
I had non-Hodgkin diffuse large B-cell lymphoma. I have been in remission now for 3 years.
Pre-diagnosis
My symptoms, well, I did not have any symptoms. I guess I may have, but I didn’t notice, and it was all found by chance.
We moved into a new house. I bought some big pots to put out in front, and you must bear hug them to get them off the truck, and that is what I did. I thought that I had pulled a muscle in my back.
So, for about two weeks, I dealt with the pain of it, and it just kept getting worse and worse. The week that I was diagnosed, the pain got so intense that I had thought I was having a heart attack.
We called the ambulance and took a little ride to the hospital. It turned out that my heart was fine, but I still had pain, so a couple of days later, on a Thursday, I went to a chiropractor.
When he adjusted me in the chest area, I had a shock go from the tip of my head to the bottom of my feet. By the time I had left his office, drove a mile down the road toWalmart, and got out to walk in, I could barely walk. I went back to him that afternoon, and he just did not know what was going on. That evening, when I got home, I had to use a walker.
On Friday, the day afterwards, we set up an MRI with the neurosurgeon that I had used before. But I could not do it, because I could not lie down.
Saturday rolled around, and my wife, who is a cardiac nurse, set up for me to go tothe local hospital here in Effingham County, where I successfully got an MRI.
Discovery, Diagnosis and Treatment
Surgery
Well, in the MRI, I did not know it then and there because no one told me, but they saw a tumor on my spinal cord.
On Monday, December 21, 2020, I checked into the hospital. On Tuesday, I had surgery, and stayed in the hospital overnight.
Then we went down to Tybee because we had rented a house down there for Christmas.
When we were down there, the tumor was sent off so they could check it to see if it was cancerous. However, the surgeon had already known that it was; I guess he had done so many surgeries like that, that he could already tell if it was cancerous or not.
A couple of days later, we had a meeting with an oncologist to discuss my treatment. The combination of drugs I would be taking is known as R-CHOP.
It turned out to be a pretty rough treatment.
Chemotherapy
The first treatment was on that infamous day of January 6, 2021, and everything was going on in Washington, D.C.
Not only that, but Covid was going strong, so no one could go with me to have chemo, and so I was kind of on an island by yourself. I got used to it–and as you’ll see, I wasn’t actually left alone.
The people in the hospital who administer the drugs are wonderful. They have a big heart for people like us and they made it easy. Of course, wearing a mask the whole time you are there is no fun, but they did make it very easy.
I had 6 rounds of R-CHOP every 3 weeks.
Effects of the treatment regimen
During the first round of chemo of R-CHOP, I was told that it was so important to stay hydrated. So when I would get home after treatment, I felt like I would almost drown myself because I had drunk so much.
I had been told that one of the side effects of my treatment regimen would be nausea, but it was a pleasant surprise that that was not the case for me. I think I had needed to take only 2 nausea pills the entire time, which was awesome.
Another thing too that was a bit unusual was that I actually gained weight during my treatment. People normally lose a lot of weight, but I actually gained 30 pounds.
I also lost all my hair after the first rounds of chemo. That was a big thing for me.
Additionally, I had intense leg pain after my infusions. They gave me Neulasta for that, and that is something that I still struggle with today because of the neurological damage done to my system.
I was also informed that I needed to watch out for the third round of chemo. I go to church with a guy who said to me, “Wait until your third round.” But it was not the third round that kicked me in the behind; it was the fourth round. It just wiped me out.
I would have a treatment on a Friday afternoon, and it lasted about six hours. I would get home, and I would be wired that whole afternoon and all night. Then I would not go to sleep until about noon on Saturday. I would just be wired, not hungry but we did have somebody at the church that would make me some vegetable soup and banana bread, and that helped me out tremendously for a bunch of days after I had my treatment. The part of being wired, that was always the worst part of it. Then, by Tuesday, I would be able to go back to work.
I am in sales, and I do not see how anybody in a factory job or anything like that could go through it and keep a job. That being said, I was still able to function for the most part while I was on chemo.
As a matter of fact, I continued to work the whole time I was being administered R-CHOP. On days that I did work, sometimes it was a pain, and on the whole I felt like I was in a cloud. I was still able to work, though, which is great.
I complained one day to the neurosurgeon about why I was not walking better, and he commented that I should feel blessed that I was even walking.
Remission
After I had finished my treatments, I went for a PET scan.
It showed 2 lumps in my stomach that were lit up. My oncologist said, feel free to search for a second opinion. So we did that.
My wife, the nurse that she is, spoke with my sister and a good friend of hers whose brother is an oncologist in Atlanta, and he suggested going to Moffit Cancer Center down in Tampa.
We went down there, and he did some tests that my oncologist here did not do.
All the tests determined that the lumps were not growing at all.
So this means that the treatments were successful and my cancer was in remission.
I have been in remission now for 3 years. I go every 6 months to have a check-up.
PTSD
I may be cancer-free now, but there are moments that I have PTSD. I experience some triggers that remind me of things that were not so pleasant during my treatment time.
Just as an example, I have some photos of the Red Devils, part of the chemo that they call the Red Devils. Those are potent. Anytime I look back and see the pictures of those, I can almost taste them. They were that bad.
That being said, though, I can say that I’ve come away stronger.
Before all this happened, I could not take an MRI, PET scan or CT scan or anything like that without being sedated. Now I have learned how to deal with everything like that.
I think the last MRI I had lasted about an hour and 30 minutes, and it was not bad at all. Getting my port taken out was easy. I am not afraid of needles. I am not afraid of MRI machines, PET scans, or CT scans, either. Not any more.
Looking forward after remission
My experience has changed my life.
You start to think more about your family than about material things that do not really mean a whole lot. The shoes, the watches, the shirts, you know—they do not mean that much.
I am semi-retired now, and cannot wait for the time that my wife will retire, too. As I mentioned earlier, we had built a house about six months before I was diagnosed. We had just moved into the house and were getting things done around the house, and then I was diagnosed with cancer. So, there were a lot of things put on hold, but a lot of those things just do not mean anything to me any longer.
The only thing I want to do now is buy a motorhome and travel. Have a smaller house and travel back and forth. My wife is not quite on the same page with me, but she is getting there, and so I am hoping that that dream will come true. All she wants to do is spend time with our 3 grandkids, which of course is wonderful also.
We have done a lot in our life together. We’ve been to the Caribbean a few times and rented boats and sailboats. We spent time out, about ten days, on a sailboat sailing around the British Virgin Islands, which was nice.
What helped Mike during his treatment
Wife and family
I have nothing but praise for my wife, who is a terrific nurse, and she took such good care of me while I was in the thick of treatment.
She was my rock when I needed a rock, gave me my pills, set my appointments, cooked supper. She was beside herself because she could not go to me for my treatments. But she was still able to drive me to them and drive me home.
With her being a nurse it just came naturally. I did not have a bell to ring, but she was always there for me and was willing to do anything that I needed. She took over.
It’s so important to have somebody to talk to; there were a lot of times that I would get upset, it is an emotional time, and when you are diagnosed with cancer, it tugs at your emotions. So, there were many times that my wife and I would sit there and talk about things.
Anytime that I was uncomfortable, and there were a lot of times my back was hurting from the surgery, I have a 12-inch scar in the middle of my back where they took the tumor out. So, to make me more comfortable, she rubbed my back, her and the grandkids too. They would get a rolling pin and roll it up and down my back, and that always felt good.
I’m well aware that it was no walk in the park for her. She had to take care of the house and its day-to-day concerns. That right there is a huge burden, paying bills and things like that. That weighs heavy on those people and the caregivers.
Faith and friends
My faith and our church family have also really risen to the occasion and have really helped me through this whole thing. A big part of how I have been able to deal with the last three years is because of my faith.
Our faith in God got us through these tough times. I talked to God a lot during those days, and I had peace. I would not say that I was worried because I looked at it this way: If I go first, I win.
You know, sometimes people say it takes a village, and it really does. I just thank the Lord.
I would not say that I was worried because I looked at it this way:
If I go first, I win.
Lessons Mike wants to share
Be mindful of the caregivers too
When I know that somebody has cancer, it is not only “How is that person doing?”, but also “How are the caregivers doing?”
You know, because it is tough on them, and you can see it if you are around people enough. They need prayer, too. They need just as much prayer as the sick person.
My advice to the patient would be to be patient with the caregiver. You are both walking down a road that you have never been down before, and they are going to think one way, and you are going to think another way, but always remember to be patient.
You know, we all run out of patience from time to time, but for me, as a patient, getting upset with my caregiver, I did not like that, and I apologized because, yes, it is a tough thing to go through, and I am the one going through it, but they are going through it also.
They need their time, and they need their respect, and as patients, we have got to give it to them and love them because they love you the best way that they can. We have got to love them the best way that we know how.
Without them, it would be a lot harder. It is hard enough, but going through that time without my wife as my caregiver… I do not know if I would have made it.
We are all on different journeys
My final message would be: everybody has a different journey.
You can ask a question about how you get through chemo and all that, but I think everybody is going to have a different answer. My answer would be: it is your game; play it the way that you need to.
If you feel like doing something, do it. If you are tired, and that is another thing, fatigue, good grief, the fatigue is just unbelievable, and if you do not feel like doing something, do not do it.
Eventually, you will have to get up and do something, but you will know when to do it.
Brittany’s Stage 4 Liver and Gallbladder Cancer Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Brittany, a nurse who works in surgical oncology and a proud mother of 2, was diagnosed with stage 4 hepatocellular carcinoma (liver cancer) and cholangiocarcinoma (gallbladder cancer). She is now officially “no evidence of disease” (NED) thanks to surgery and immunotherapy.
Brittany’s story starts about 3 years ago, when all of a sudden, she stopped menstruating. A pelvic ultrasound failed to turn up any potential cause. In September 2021, she began to lose appetite and her weight began to drop, and she ended up losing a total of 15 to 20 lbs. Her PCP ran a full array of lab tests, but they all came back normal.
In January 2022, Brittany started experiencing bad pain in the upper right quadrant of her abdomen. She rushed herself to a hospital where she had more lab work done and, this time, a CT scan of her chest, abdomen and pelvis as well. Once again her tests failed to turn up anything–but the CT scan found a 10cm mass on her liver.
Brittany transferred to a larger hospital where she spoke with a specialist in liver surgery. A few days later he and his team operated on her to remove the diseased portion of her liver (which amounted to 60% of the organ). However, they found out that her gallbladder had also been affected and portions needed to be removed too, and moreover discovered lesions on her lungs. Further testing finally revealed the true nature of her cancer, and the lesions on her lungs determined that it was stage 4.
Though Brittany’s doctors were optimistic about her chances, they were also realistic, given that liver cancer is not easy to treat and that cholangiocarcinoma is known to be extremely aggressive. But Brittany was determined to beat the odds and overcome her cancer.
Brittany began to undergo immunotherapy in April 2022 and was administered atezolizumab and bevacizumab every 3 weeks. Her cancer responded favorably to the treatment; her liver has been cancer-free since the resection, and all the lung lesions have disappeared.
Brittany’s last treatment was administered in December 2022. Since stopping treatment, she has gotten a CT and MRI with lab work every 3 months; these have recently been spaced out to every 6 months for surveillance.
Brittany would like to share that her experience has definitely changed her life. She refuses to take things for granted any longer, makes sure to enjoy every moment, and is intent upon giving back as much as she can. She also urges fellow patients to take full charge of their own healthcare, to educate themselves fully, and to be their own advocates. “Don’t believe the statistics!” she adds–they’re really just numbers.
Name: Brittany B.
Diagnosis:
Hepatocellular carcinoma (liver cancer) and cholangiocarcinoma carcinoma (gallbladder cancer)
Staging:
Stage 4
Initial Symptoms:
Amenorrhea
Unexplained weight loss
Loss of appetite
Pain in right upper quadrant of abdomen
Treatment:
Surgery: removal of portions of liver and gallbladder
Immunotherapy: atezolizumab and bevacizumab
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Melissa, a nurse from Sandy Hook, CT and a mother to a 16-year-old daughter, was diagnosed with a jugular foramen schwannoma–a rare kind of brain tumor involving nerve cells and which arises from or extends into one of the two large openings in the base of the skull through which structures like cranial nerves pass.
Melissa first started experiencing symptoms including frequent migraines in 2012, but they were misdiagnosed as being due to Lyme disease, partly because she had a visible tick bite diagnosed with the disease. In time, her migraines became extreme and were accompanied by terrible vertigo, and she also started to have trouble swallowing and to have voice hoarseness. In 2016, she had an MRI conducted, and it revealed the tumor.
Her doctors went back to the scan conducted in 2012–and, by comparing it with the 2016 scan, were able to determine the tumor’s progression over time. The doctors brought up many possible treatment options, including radiation and traditional chemotherapy. But Melissa took her time and did thorough research, and ended up watchfully waiting until the time came to take action.
At that point in time, Melissa’s doctors found that her tumor, although benign, was wrapped around and was starting to affect 3 of her cranial nerves, which was why she had been finding it increasingly hard to swallow, and also that her jugular vein and carotid artery were already completely blocked by the tumor.
Melissa chose to undergo a craniotomy, brain surgery that involved the removal of part of her skull so that the tumor itself could be accessed and excised. Her doctors, however, could remove only part of the tumor and were forced to leave in portions that had invaded her brainstem and cervical spine. Moreover, she experienced significant complications post-surgery–she woke up paralyzed on her left side and unable to speak properly.
Melissa is currently undergoing procedures including facial retraining to enable both sides of her face to communicate correctly again, and regrafting of those parts of her face where function has not yet returned. She has also had a Gore-Tex implant injected into her vocal cords to help strengthen her voice. She and her doctors are also continuing to monitor the remainder of the tumor.
Melissa is sharing her story to help put a face to this rare brain tumor and to show that there are medical interventions to counter it. She wants people to realize that life is short and to prize every moment, because, in her words, “Even the little moments are the big moments.”
Name: Melissa C.
Diagnosis:
Jugular foramen schwannoma (rare brain tumor)
Initial Symptoms:
Plenty of migraines
Headaches with vertigo
Trouble swallowing and voice hoarseness at the end of many of her days
Treatment:
Surgery: craniotomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Share your cancer journey and make a difference. Whether you’re a cancer survivor, patient, caregiver, or advocate, your story is important and matters. Sharing your story with others can inspire hope, educate, and create a lasting impact.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Christina P., or Chris, was diagnosed with stage 4 pancreatic cancer and given 6 months to live. That was 16 years ago.
No less than 5 years prior to her cancer diagnosis, Chris had already been struggling with its initial symptoms–weight loss of as much as 100 lbs and bad stomach issues. Her diagnosis stunned her, especially when she found out that the affected parts of her pancreas and liver could not simply be removed, and when she was told she had just a few months left to live. Additionally, she was dissatisfied with the doctors she initially saw and the treatment options they discussed with her.
But after Chris found the right team for her at the Cancer Treatment Centers of America (which now operates as a nonprofit called City of Hope), she worked with them on her treatment plan and prepared to fight.
Chris’s treatments proved to be intense, especially her intra-arterial chemotherapy regimen. But they were effective. Although she has not been declared NED, she had her last chemotherapy session in December 2011 and was placed on a “chemo holiday” in January 2012–which is still ongoing.
Chris now helps make sure that other cancer patients, including those who have pancreatic cancer, get not only support but also reassurance, advice, and hope. She sits on the board of the National Pancreatic Cancer Foundation and also founded her own nonprofit, the Purple Iris Foundation. Her foundation works to raise awareness regarding cancer, provide support, and give hope to individuals and families affected by cancer in Maine. She also tells her story to help others like her learn about the importance of faith and hope, even when facing the most dire of situations.
Name: Chris P.
Diagnosis:
Pancreatic Cancer
Staging:
Stage 4
Initial Symptoms:
Significant weight loss (at least 100 lbs.)
Stomach and digestive problems
Treatments:
Intra-arterial chemotherapy to liver and pancreas (cisplatin, mitomycin, oxaliplatin)
Intravenous chemotherapy (FUDR, leucovorin)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I pinch myself every day, grateful for every breath I get to take.
I really do not waste my 2nd chances.
Introduction
My name is Christina or Chris.
I am 56 years old, and I am a 16-year stage 4 pancreatic cancer survivor.
Pre-diagnosis
My story started approximately 5 years before I was diagnosed; approximately 2003 to 2008.
I had significant weight loss of I would say at least 70 pounds.I went from 160-170 pounds down to 100 pounds soaking wet.
At that time, the doctors I saw did not see anything wrong with the weight loss, and neither did I. I ran a daycare, so I was always running around after kids.
It was the first time I was skinny, and people were asking me, “Are you okay? You’ve lost a lot of weight. Your clothes are hanging off you!”
I also had a lot of digestive issues; I was popping Tums all the time.
I got tired of having to deal with all that, so I went to my doctor, and they threw me on some Nexium and Prilosec; they did neither scans nor an MRI. They just thought that those medicines would suffice.
Well, fast forward a year, and they had not worked, and I got tired of going to my doctor, so I stopped seeing them, and just started taking Tums again.
A couple years later, I had changed careers, and worked at a call center for a major bank.
At work one day, I felt like I was dying, and when I say that, I mean I could not eat, I could not urinate, I could not poop, and I literally felt like everything was stopping in my body and it got so bad that I started crying to my boss saying, “I have to leave.”
I went and called my doctor and got in the next day and they ordered scans. They said, “Chris, you are never sick.” I replied, “Well, I was, but I just got tired of coming to you because you did not take what was going on seriously.”
Discovery and Diagnosis
My cancer was finally diagnosed in 2008.
I think that was a Thursday or a Friday, and I got the scans.They got me in quick to get them.
The MRI was on a Monday or Tuesday. I had gotten the call to come in, and I said, “Well, can you just give me the results over the phone.”
They told me that I was not going back to work at this point because I just was not feeling good, and when I went in, I did not bring anybody with me because I thought it was just another appointment.
That is when they told me I had a 5-and-a-half-centimeter mass in my pancreas and numerous lesions in the right lobe of my liver.
They did not call it cancer because it was just my PA, but she was crying when we were talking, so she knew the significance of it.
My life flashed before my eyes.
When I asked her if they could just remove it all, she just shook her head and said no. I was like, “Oh. Oh!”
She also mentioned an oncologist, and I said, “Wait a minute, what!” Then I just lost it.
After that, I was in denial until I met with the oncologist. I kept thinking they had the wrong person; it was something stupid, an old sports injury, but reality set in when I saw the oncologist.
Consultation with the Oncologist
Oncology came about 2 weeks later with me advocating.
My appointment was set out a month later, and all the reading I did said that I had 6 months to live if it was a late stage. I did not know the staging at the time, so I had no idea.
When I got there, I went in and met my nurse, and I called her Nurse Ratched. She was not very nice. She asked me if I needed any Ativan, and I told her I was fine. I guess she was trying to prepare me, but I am not sure.
The oncologist comes in, and he was a nice guy. He told me I had stage IV pancreatic cancer. I said, “Oh, ok.”
I just sat there wrapping my head around it, and I did not ask him for my time frame to be alive, but I was told I had 6 months with treatment.
“Woah! I am 40 years old; how can that be? That cannot be. There must be something I can do!”
I was numb at that point, and I said, “Okay, well, I would like to have a second opinion and would like to go to Boston.” I live in Maine, so Boston is the next place down, so to speak.
That is what got “Nurse Ratched” started up. She said that they could do just as well up here, and I said, “I do not feel that this is the place that I need to be to beat this. No offense to you, but we are rural, and I would like to go and get a second opinion.”
With a little convincing, more from me, I successfully got them to schedule me a second opinion. That took me roughly 2 weeks to get into.
I went down to Boston, and I talked to the oncologist via email. She had a clinical trial, but she said I had the wrong type of pancreatic cancer for the clinical trial. I went down anyway for the appointment.
They kept changing where it was and who I was to see, but I finally got in to see my oncologist, just to be told to go home and to do what they told me to do and get my affairs in order. I asked them, “What are you guys not understanding? All you have to do is get me in the ring, and I will fight.”
I went home after that. It was laughable. I had to laugh because I did not want to cry.
Cancer Treatment Centers of America
At that point, I had a list of the top ten cancer facilities in the United States. I had been seeing a commercial for Cancer Treatment Centers of America, and it featured a long-term survivor of stage 4 pancreatic cancer named Peggy Kesler.
I did have some insurance issues which had to be addressed to get out there. Changing insurance is like an act of Congress, literally. You must applyfederally to get that changed. The major bank I had worked for, I had some great advocates there, and through them, they found a loophole that I could change my insurance through a life-changing event. That is either getting married, having a child, or moving. My boss said that he would marry me, and I replied, “I love you for that, but no.” I did appreciate him wanting to do that. I just did not feel that somebody else needed to go on this journey; I just could not do it.
My other big boss found a loophole with changing address, so the facility I went to is in northern Chicago, and I took out a P.O. Box there, which changed my address. That gave me the change of insurance that I needed to get to the facility of the Cancer Treatment Centers of America.
That was a whole story in and of itself. They flew me and my mom in, and we got to have our first consult, a 7-day consult. They run you through everything, and everything is under the same roof, so you do not have to go anywhere.
We were treated like rock stars as soon as we walked in. I was not full of faith until I stepped through those doors, and I felt God had His hand on me. I did not speak about faith a whole lot prior to cancer, but I must say that they gave me my faith back, and they gave me a lot of hope.
They did not tell me that I was going to die. They said, “Well, you are young. This is what we are going to do for you. Just let us know.” I replied, “I am here–let’s do it. Let’s start treatment.”
Treatment
Intra-Arterial Chemotherapy
The treatment regimen I had was a clinical trial that was called intra-arterial therapy. It was a clinical trial between MD Anderson and Cancer Treatment Centers of America, and two oncologists worked on it.
My brilliant oncologist was Dr. Robert Levin. I was a good candidate because I was young, and I had not had chemo.
Basically, it is like a health catheter. Only it goes directly to the organs that are impacted by cancer and, for 15 hours, circulates 40 times the amount of chemo through those organs. So, in my case, through my pancreas and liver.
I was strapped down and had sandbags so I could not move and even some morphine. I was able to do one of those treatments each month.
My intra-arterial was cisplatin, mitomycin, and I want to say the third was oxaliplatin or something like that. They were 3 old-school drugs.
With the intra-arterial, I went through at least 8 to 10 blood platelet transfusions. I missed a little bit of chemo. I may have taken 6 weeks off when that happened, but every 3 to 4 weeks, I was out there getting it, and my job was to make sure my body was ready for whatever they did.
My intra-arterial treatment was one of the hardest things I have ever experienced medically before pancreatitis. I knew it was going to be hard, but I did not realize how hard it was.
Now that I look back on it, I think I just did what I had to do to survive, but when I look back on it now, I think, “Wow, just wow!”
They do not even do the intra-arterial anymore because of the toxicity that it can cause, and people can bleed out if they move. You are just as good as dead because the chemo will go into your body, the full dose of it, and that would probably kill you right off the bat.
I did a total of 4; I did one in August, September, October, and November. Then my blood work plummeted: platelets, red blood cells, white blood cells. Everything just tanked.
Intravenous Chemotherapy
So I ended up having to stop the intra-arterial treatment. But I was also doing a drug combo called FUDR, which has leucovorin mixed in with it. That was my regular chemo that I continued with for 3 and a half years.
I started to get neuropathy, and we did not know if it was from residual stuff from the intra-arterial therapy, so they dialed back my FUDR so that I had a better quality of life as well, and the neuropathy came to an end.
I am very grateful for that.
Really, it was just learning to live with the fact that I might have to do chemo for the rest of my life, and it was just preparing myself for that and the chemo; they dialed it back enough that I had 2 to 4 days of being down and then the rest of the month I was out learning to live again.
I would go to concerts. I would go to ball games. People were buying me tickets to things left and right and I was saying, “Let’s do it!”
I would get back from something, and the next morning, I would have to catch a flight out, and I knew I could sleep on the plane.
I knew if I only had a certain amount of time, then I wanted to make sure I utilized my time doing what I really wanted to do and what I loved.
Chemo Holiday
I was put on a chemo holiday in January 2012.
I had my last chemo in December 2011, and when I got in, my oncologist, Dr. Levin, said, “We are not doing chemo this month. We are going to have you go on a chemo holiday.”
They wanted me to “go on holiday” because it would allow my body to kick back in and see what it can do.
Like I said before, I had 4 intra-arterials that were 40 times the amount of chemo, and then I had already had 3 and a half years of chemo every 3 to 4 weeks. I have not ever been able to figure out how much chemo I had, but it was a lot.
I did not want to go on a chemo holiday. They had to talk me into it. I was scared, thinking that the chemo was what was keeping me alive. But in the end I agreed to it.
December 2011 was the last day of my chemotherapy, and I have been on a chemo holiday ever since.
I go back every 3 months for scans. Between my 1st 3-month check and my 2nd one, I started with what I thought was a gallbladder attack. Once, I had to go in locally here in Maine, and what they realized was that my pancreas was shriveled up because of the chemo, and all I had left was the head that they could see.
My liver is doing great because that regenerates, but the pancreas does what it wants when it wants to, and it can’t be forced to do otherwise.
We just work symbiotically together and find the best way through each day.
Uncharted Territory
As I have been getting into treatment, I started looking into what to do if your pancreas stops working.
You cannot live without a pancreas, and I am thinking, what happens if it stops working? What do you do? Nobody can really tell me that, even an endocrinologist.
I am in uncharted territory right now. I have gone to Johns Hopkins and NYU, and had a great gastro doctor at what is now the City of Hope. Basically, they told me that we are in uncharted territory.
I said to them, “Okay, great, how about you study me.”
My whole goal is to get somebody to study why I survived and how my body is acclimating well, where most people would be in bed most days.
Being Positive–Giving Hope
I wanted to share how important it is to be positive.
You have to be positive. You really do. People say it is kind of toxic positivity, but I tell them those are your words; you can be whatever you want.
For me, being positive is how I get through my life, and that is just how I have to be because you do not get second chances. I have lost a lot of friends to pancreatic cancer at all stages.
So, I am going to be that positive person. I am always going to remind you that there is light at the end of the tunnel.
I talk to people all over the world with pancreatic cancer, and I leave them better than when I found them because they are scared and crying, and by the end of the conversation, we are laughing, and they have the tools and the positivity and the hope that they need to face it head-on.
If anybody wants to hear the whole story, I am writing a book. It is just that I have to process things as I write it and a lot of that stuff is pretty heavy, and it is a good way to let it go. I am hopeful that by the middle of next year, I can have it done.
Resources that Helped Her and Which Can Help Others
I used a non-profit called Patient Airlift Services to help get me out there for treatment every time I had an appointment. They did not miss once. Occasionally, they still provide me with vouchers to get out for my checkups.
It is a wonderful organization that helps people and kids with cancer get to where they need to go. I still go out for my checkups out there.
I do have my own non-profit here in Maine, the Purple Iris Foundation, and we can help if you are from there. It was started because of my battle, and it started with me planting hope gardens and Purple Iris because it means faith, hope, courage and wisdom and all of these things I am still gaining today.
So, we wanted a soft name for a not-so-nice thing like cancer, and we have grown to where we now do patient assistance grants, monthly grocery cards, and gas cards for low-income “Mainers.” That way, they can have a leg up on getting to their treatments and eating nutritious food and things of that nature.We do all cancers, but pancreatic cancer is my baby, and I will always be an advocate for that.
Pancreatic cancer has some great financial assistance elsewhere too, like the National Pancreatic Cancer Foundation Project Purple, there is one in Connecticut, and there is the Dawn Hill Fight Foundation.
So, anybody that is out there facing this, there are so many places that you can call with pancreatic cancer, and they can get you in for clinical trials.
I am going to be that positive person.
I am always going to remind you that there is light at the end of the tunnel.
Final Thoughts
Seek out and get yourself second and third opinions. Do not wait until you start treatment to find a second opinion. You need to do it before you start treatmentbecause your first line of treatment is your most important. After all, that is your first line of defense. Always just do your due diligence before actually starting a treatment.
Do not settle. Just do not settle. People do not settle on buying cars; they go to find the best deal. Why not find the best possible treatment facility for your pancreatic cancer?
Find good facilities. Reach out to doctors. You want to have that good team. Treatment needs to be a team approach. And it is also crucial to find a place where you just feel comfortable and where they have your back.
Have backup plans just in case your main plan does not work. Create that game plan, so you know in your head, ok, well, if this does not work, then we have this, this, and that.
Clinical trials are so very vital. I would not be here without a clinical trial.
Nutrition is huge. Keeping your body fueled is such a key to survival.
We are all scared. Cancer is a scary thing. I had to put on my big girl pants and just have faith that I was getting to the right place and that faith has stayed with me for the past 16 years. It took me 1200 miles from my home, but I found a way to make it happen.
Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatment: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
Cancer Details: Found after Galleri blood test and MRI 1st Symptoms: None Treatment: 5FU (folfirinox), Gemzar, NK cell expansion therapy, Dendritic cell expansion therapy, Neoantigen peptide vaccine
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Nine years ago, Alli was diagnosed with colon cancer, but what she actually has was appendix cancer–and she only found that out many years later. She is currently NED, or “no evidence of disease,” and in her words, “It’s taken a lot to get here.”
Alli had initially experienced intense abdominal pain, which had been diagnosed as appendicitis. Her appendix was successfully removed, but its “angry” appearance led her doctors to send it to pathology for a closer look. It was initially diagnosed as colon cancer because it behaved like colorectal cancer. She then underwent surgery to remove a portion of her colon.
Alli was declared NED and enjoyed 7 years of being cancer-free before she experienced what seemed to be a recurrence of her colon cancer–but her doctors finally determined that what she had was actually stage 4 appendix cancer.
Alli is sharing her story with us today not only to stress the importance of proper diagnosis and treatment as well as advocating for oneself, but also to help shift perspectives regarding stage 4 cancer and how it may not necessarily be a death sentence; to establish the importance of properly listening to one’s body; and to reframe healing after cancer as an opportunity to build a better, more complete version of the person one used to be.
Name: Alli M.
Diagnosis:
Appendix cancer
Staging:
Stage 4
Symptoms:
Severe abdominal pain
Treatment:
Surgery (right hemi colectomy, appendectomy, HIPEC)
Chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with avastin and xeloda)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers Treatments: Hyperthermic intraperitoneal chemotherapy with mitomycin C (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
Symptom: Severe abdominal pain Treatments: Surgery (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with bevacizumab & capecitabine)
