Author: Chris Sanchez

Francina’s Stage 2B Breast Cancer Story

Post author By Chris Sanchez
Post date October 24, 2024
1 Comment on Francina’s Stage 2B Breast Cancer Story

October 24, 2024

Francina’s Stage 2B Breast Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Francina is a breast cancer survivor, a mother of 2, and a grandmother of 4. She enjoys traveling, going on cruises, and spending time with family and friends. Francina is an advocate for cancer awareness, working with the American Cancer Society Cancer Action Network and the Sister to Sister Alliance to educate communities on cancer prevention and the importance of early detection.

Francina discovered her breast cancer during a routine mammogram. After further tests, she was informed that the mass was cancerous. Despite the shock, she remained calm and turned to her faith, vowing to use her journey to bring glory to God. Her treatment journey included two surgeries, chemotherapy, and radiation, and thanks to biomarker testing, she received a treatment tailored to her specific cancer type. After going through these challenges, she is now cancer-free, and has been so for 6 and a half years.

Throughout her journey, Francina relied on her faith, support from family, and her church community. She credits her strength and positive mindset for helping her fight cancer, as well as the help of a close friend who accompanied her through treatment and recovery. She emphasizes the importance of self-breast exams, early detection, and knowing one’s family medical history.

Name: Francina B.
Diagnosis:
- Breast Cancer
Staging:
- Stage 2B
Initial Symptoms:
- None
Treatments:
- Surgery: lumpectomy; removal of cancerous sentinel nodes
- Chemotherapy: doxorubicin, paclitaxel
- Radiation

Thank you to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.

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

I’m enjoying life.
You know, God has given me another chance and the opportunities afforded me not only enable me to use my voice, but also to enjoy life.
And that’s exactly what I’m doing.

Introduction

My name is Francina. I’m a breast cancer survivor. I am a mother of two, a daughter and a son and a Nana of 4. 2 boys and 2 girls. I am one who loves to travel. I love going on cruises. And I also love spending time with my family and friends.

I’m also an advocate with the American Cancer Society Cancer Action Network, and also I’m with Sister to Sister Alliance, a support group. We go out into the communities and events like health fairs to empower, to equip, and to enlighten men and women about cancer.

I’m enjoying life. You know, God has given me another chance and the opportunities afforded me enable me not only to use my voice, but also to enjoy life. And that’s exactly what I’m doing.

Pre-diagnosis

Initial Symptoms

Well, I didn’t experience any symptoms. It was my annual routine mammogram, and maybe about a few days, maybe a week later, I got a phone call from my doctor.

They needed to do another mammogram and also ultrasound because they had seen a mass.

They wasn’t really sure what it was, but they were concerned.

Diagnosis

So I went and I got my mammogram done. I got my ultrasound done, and I was on my way to the gym.

As soon as I get to the gym, I get a phone call from my doctor that the mass was cancerous.

And she said, I’m going to set you up with other doctors, you pick what you want and go from there.

… you don’t hear everything that’s being said because you’re still trying to figure out them 3 words. “I have cancer.”

Reaction to the Diagnosis

And so I’m sitting in my car and so I call my pastor and I call her aunt.

And after that I said, you know what, God? Because I never questioned Him. I never asked Him why. I said, If I’m going to carry this, it’s going to be to Your glory.

I said, I’m not going to call my children yet because I know they’re going to have many questions. So let me go, wait and see and talk to my doctor, you know, get information so that I can share with them.

My concern was having to go home and tell my husband. So I went into the gym and I worked out. I went home and my husband was in the bedroom, and I went and told him, and immediately it was negativity. You know, you go there thinking the worst. And so I had to throw my hand up and said, I don’t receive that. And I walked out the room. And so it was a process.

I had a friend that I went to talk to. I used to take care of her son for 2 and a half years, and he had passed away. So I went to her, you know, and let her know what was going on. And she’s a godsend.

I thought that her son was my reason. No, it was her because she went with me through my whole cancer journey from day 1: treatments, surgery, changing my bandages. I mean, the whole bit. And even took notes that I didn’t even know she had taken.

Because, you know, when you go to see your doctor and they tell you that you have cancer, you know, your mind is all over the place. And you don’t hear everything that’s being said because you’re still trying to figure out them 3 words: I have cancer.

Treatment

Options

So my surgeon was very compassionate. He explained everything to me until I understood. He gave me options.

Then he said, you go home and you pray about it, and you come back and let me know what your decision is.

Lumpectomy and biopsy

So I elected to have a lumpectomy done.

And in the process of having the lumpectomy done they found in my sentinel nodes that I had 3 cancerous cells. That means it was outside of the mass.

And so 2 weeks later, I had to have another surgery where they had to go into my armpit. And you have 3 tiers where they took out 2 tiers of cancers.

And it was clear. Clear margin. So the cancer had not spread. So that was a blessing.

So then I had to have a biopsy done so they would know what type of cancer I had.

Chemotherapy and radiation

So in the process of finding out what type of cancer I had, I was able to get a treatment that was tailor-made for my specific cancer. So I had the first round.

I had 4 rounds of chemo every 2 weeks, and then I had to have 12 rounds of another chemo.

The first chemo was doxorubicin, what we call Red Devil. That’s really a powerful, potent treatment.

And then I had paclitaxel, which was for 3 months.

After that, I had either 32 or 33 rounds of radiation.

And from there I was cancer-free. That was 6 and a half years ago.

Being Cancer-Free

And it was due to biomarker testing that at the time I did not know I had it done. I just found out the early part of this year. And it was that that contributed to the type of treatment that I needed for my specific cancer, which worked.

And like I said, to God be all the glory because I am cancer-free. I am healed.

And the moment when the doctor pulled me in and said, hey, your scans are clear. Oh, I mean, I was ecstatic, but I already knew because I had a conversation with God, you know, and he gave me 3 words as well. And his 3 words was: I got you. And when God said he got you, he got you.

So I never was stressed or worried about my cancer journey at all.

“I had people”

You know, everybody says something different, but it was just the stress mentally, you know, physically and emotionally of going through and the challenges that I had because of it.

I had to stop working, I was no longer able to work. And so in the process, I exhausted my savings. And so I had no health, no health care.

And so I applied for assistance, but I didn’t qualify, and I had no income.

But I had people.

My social worker was awesome. And she connected me to organizations as well as my niece, because I had a sister that passed away from breast cancer in 2015. So she wasn’t as fortunate.

So I used my voice on behalf of her as well as those that are next to me, but also coming behind me.

Advice Francina Wants to Share

Get tested

So based on my experience, I now advocate testing.

You know, we have to advocate. We have to stop being silent, being quiet, and to let people know cancer does not have to be a death sentence.

Early detection is key. And so, you know, you want to make a point of people to go ahead and get their screenings done. And those that are not old enough to have mammograms to do self-breast exams monthly.

So I’m about educating and giving information, you know, sharing my story, my journey so that I can help others along the way.

And my advocacy has also extended to me urging my daughter to get tested too. And she does get tested, every 6 months. And I also have a sister on my father’s side who also gets tested.

My niece also gets tested because it was her mother that passed away, and I’m her aunt. So, you know, you got to look at that connection. So they all are proactive in getting their screenings. They get MRIs and do self-breast exams as well. I have 2 granddaughters I’m trying to teach about doing self-breast checks.

When we go to health fairs, there are a lot of young adults that are not old enough to get mammograms, don’t know how to do self-breast exams, don’t even know about it. So I’ve asked them, you know, when you go get your physicals, do you talk to your physician? They say, no.

I said, when you go, you ask them to not only perform it, but to show you how to do it yourself, because a lot of times people find those lumps themselves. Also, they’ll be the first to see a change in their body.

So they need to know what to look for. So we like to educate and give information so they are aware.

Link with support groups

Connecting with support groups helped, surrounding myself with positive people. And also learning from them about people who beat cancer. Not just seeing the success, but gathering information from them.

But it was also inspiring to see patients who are now 5 years, 10 years, 20 years cancer free. You know, that was the stuff that gave me something to push forward to.

That can help you through your journey, because there are a lot of people that have already been through what we’re going through so they can help us.

You know, they can be an encouragement and inspiration to us and also be there to support us.

Cancer doesn’t have me.
I’m going to be in control.
It’s not going to take me.

Develop a positive mindset

And also having a positive mindset was so important.

Cancer doesn’t have me. I’m going to be in control. It’s not going to take me.

I’m going to enjoy my life, you know, and do some of the things that maybe I wouldn’t have normally do.

But, you know, just to be an inspiration and encouragement to other people that listen, you can fight this, you can beat this, you can overcome this. You can still have quality of life.

Put your mind to do the things that you want to do, and surround yourself with positive people. Get connected to support groups.

Lean on family and friends

It was so amazing to be supported by my church family, their prayers, having them rally around you and cheer you on.

Plus the support from my family was so heartening. Because when I did finally tell my children, my daughter looked at me. Mom, she said, you know, you’re a strong woman, you’re going to beat this.

My son wanted to run and come to his mama. You know, but they all know that their mama is a fighter.

I’m not one to give up. I’m not one to quit. So I’m going to push. I’m going to press.

But my daughter, every time I look around, she was leaving Maryland, coming to see about her mama. If I didn’t sound right on the phone, she was there.

So, like I said, my family means a lot, because they see me doing my journey. But it also helps them too, as we’re creating memories and also leaving legacies that they can follow and continue with.

Be aware of any family history

Another key thing that I tell people is, know your family history.

See, when I was growing up you didn’t ask questions as a child. So now all your matriarchs and the patriarchs are no longer here.

You know, you don’t have the information. So it has to start from me with educating my children and my grandkids.

And I’m seeing me when I’m going through and understanding what I do and why I do it.

So with their support and the support of my friends, you know, I’m I believe I’m making a difference.

Learn about biomarkers and why they matter

I also wanted to talk a little bit about biomarkers and their importance. Basically, they get a sample from your tumor and they test it, you know, and then and it determines the type of cancer that you have.

Well, I’m still learning about biomarker testing, but what it did for me was it was able to target the type of cancer that I had. So a lot of people are not aware that they’ve had it done because, you know, you didn’t hear of it. Even my doctors, they didn’t tell me anything about biomarker testing.

It was my advocacy group that was discussing it because it’s something that we’re trying to get out there trying to talk with our lawmakers. Making that a policy. We’re not there yet. So we’re trying to get petitions and we’re educating, you know, our lawmakers. With personal stories.

That’s something that we could bring to the table when it comes to insurance companies, because right now, a lot of insurance companies will not pay for it because they feel that it’s experimental. But when you got these positive outcomes from people who have had it done to me, you know that makes it makes a difference.

So now they can go back and see, okay, what treatment would be best to combat this type of cancer. And so for me, that’s what they did.

So the regimen that I was on, even though it was hard, it was something that did what it needed to do. And that’s why I am cancer-free because it was targeted for my specific cancer.

It’s cost effective because, if you really don’t know what you what you’re dealing with, you don’t really know what type of treatment is best for that. You’re trying different regimens and it puts a lot of stress and strain on the patient.

But if you’re a doctor and you know something is targeted that this is going to work for this type of cancer, if you use this type of treatment, this medication, then, okay, you’re saving your patient, but you’re also giving that that person quality of life and also extending their life.

I want everybody to be advocates for themselves.
Because who knows your body better than you do?

Advocate for others—and yourself

Let me finish by sharing the most important efforts in the work I’m doing with the American Cancer Society when it comes to the black and African American community.

Bringing about awareness, equipping them, empowering them to get out there and to do what they need to do for themselves. Leading by example. Sharing my story with them and letting them know.

Again, cancer is not a death sentence. Early detection is key. We must get out there and do our screenings, and also do our monthly breast exams, and not allow fear to keep you from getting the care.

Because everybody deserves to have some type of quality care.

I want everybody to be advocates for themselves. Because who knows your body better than you do?

And sometimes you go to doctors and you tell them things are going on and they push you off. And my thing is, if you go to a doctor and they cannot do what you’re asking or requiring them to do, go somewhere else where somebody will.

Because there are people that have been diagnosed and they’re already stage 3. Stage 4. Whereas if they would have had it done initially, they may have caught it earlier.

So we have to also be advocates for ourselves. We deserve to have care. We deserve to be listened to and to be understood.

Special thanks again to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Francina!

Inspired by Francina's story?

Share your story, too!

Name:
- Ashley S.
Age at Diagnosis:
- 34
Diagnosis:
- Adrenocortical carcinoma
Staging:
- Stage 4
Initial Symptoms:
- Swollen ankles
- Very low potassium levels
Treatment:
- Surgery (removal of tumor, open-heart surgery)
- Chemotherapy (EDP, Cabometyx, Carboplatin, mitotane)
- Immunotherapy (Keytruda)
- Radiation

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

Thank you for sharing your story, Ashley!

Inspired by Ashley's story?

Share your story, too!

A major turning point came when molecular testing revealed that Kelsey’s cancer had a specific mutation that slowed its growth. This extended her life expectancy from five years to potentially 12–15 years. Additionally, a new FDA-approved drug, targeted to her specific mutation, offered hope of turning her cancer into a manageable chronic illness rather than a terminal one.

Kelsey has been documenting her cancer journey on TikTok, which has been both a form of video journaling and a way to connect with others in similar situations. She credits her transparency and openness with helping her process emotions and maintain a strong connection with her husband. Kelsey also advises others on the importance of mindset, advocating for maintaining hope and a positive outlook, even amidst the challenges of cancer.

In closing, Kelsey shares an impactful story from a woman who told her there was “magic in cancer,” referring to the perspective shift it brings. Despite its difficulties, Kelsey now values the profound sense of living in the present, which she considers to be one of cancer’s unintended gifts.

Name:
- Kelsey S.
Age at Diagnosis:
- 30
Diagnosis:
- Brain cancer (astrocytoma with an IDH1 mutation)
Grade:
- Grade 3
Initial Symptoms:
- Tingling and numbness in left arm and hand
- Sensation progressed to her leg
- Seizures
Treatment:
- Surgery (craniotomy)
- Radiation
- Chemotherapy (Temodar [temozolomide])

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

Thank you for sharing your story, Kelsey!

Inspired by Kelsey's story?

Share your story, too!

Tags astrocytoma, Driver Mutations

Chemotherapy Immunotherapy Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Treatments

Ashley’s Stage 4 Lung Cancer Story

Post author By Chris Sanchez
Post date October 18, 2024
No Comments on Ashley’s Stage 4 Lung Cancer Story

October 18, 2024

Ashley’s Stage 4 Lung Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Ashley, a 36-year-old mother of two, living in Northern California, shares her experience of being diagnosed with stage 4 non-small cell lung cancer.

Ashley had initially experienced trouble swallowing, chest pain, shortness of breath, fatigue, and swelling in her body. Prior to her diagnosis, she dealt with repeated misdiagnoses and medical gaslighting. Specialists brushed off her symptoms as due to work stress or anxiety, or misdiagnosed her with conditions like asthma, pneumonia, and long COVID. It wasn’t until a trip to the emergency room, where doctors discovered blood clots and conducted a CT scan, that her lung cancer was revealed. It took Ashley by surprise; she had no history of smoking and was otherwise healthy and very active and athletic.

Ashley reflects on the biases in healthcare, particularly against people who don’t fit traditional risk profiles for lung cancer. She explains how her healthy appearance and lack of smoking history contributed to doctors dismissing her symptoms for over a year. She believes that this is a systemic issue in healthcare, not just individual doctors’ fault. This is why she advocates for the importance of self-advocacy and trusting one’s body.

After her diagnosis, Ashley underwent chemotherapy, radiation, surgery to remove one lung, and immunotherapy treatments. She notes the importance of biomarkers in determining treatment for lung cancer. She does not have any biomarkers, which limited her options to immunotherapy, radiation, and chemotherapy. Her experience included serious side effects, including liver failure from immunotherapy. She had to stop immunotherapy and explored other treatment options, including clinical trials and further radiation therapy.

Ashley emphasizes the need for patients to advocate for themselves and seek second opinions. She shares her experience with various doctors, particularly the importance of one doctor making eye contact and truly listening to her concerns, which helped her feel validated.

Ashley’s journey has taught her the value of mental health support, palliative care, and integrative services, such as physical therapy and nutrition. She highlights the importance of having a support system, both in terms of healthcare providers and loved ones, to navigate the complexities of cancer treatment. Despite the challenges, Ashley remains proactive in managing her care and encourages others to stay informed and engaged in their treatment.

Name:
- Ashley V.
Diagnosis:
- Non-small cell lung cancer
Staging:
- Stage 4
Initial Symptoms:
- Trouble swallowing
- Shortness of breath
- Fatigue
- Loss of appetite
- Chest pain
- Swelling in her body
Treatment:
- Surgery (removal of lung)
- Chemotherapy
- Immunotherapy
- Radiation

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

Thank you for sharing your story, Ashley!

Inspired by Ashley's story?

Share your story, too!

Hannah’s story begins in 2014 or 2015, when she first experienced symptoms such as pelvic cramping and bloating. Over time, her symptoms worsened, leading to more frequent UTIs and alarming signs like blood in her urine by 2022. Despite these symptoms, doctors initially dismissed her concerns, attributing her issues to common health problems or “white coat syndrome.” It wasn’t until December 2022, when her blood pressure spiked significantly, that a trip to urgent care led to a CT scan. It revealed a mass on her appendix, which doctors suspected was cancer.

Hannah describes the emotional toll of waiting for a diagnosis, especially the fear and uncertainty that followed the news that her cancer had likely spread. In late December, she received the devastating diagnosis of stage 4 appendix cancer with signet cell ring features, a rare and aggressive form. After an underwhelming and confusing initial consultation with her doctors, she and her husband sought a second opinion at Mayo Clinic, where a specialist provided a clearer plan of action and more promising news. Although her cancer was high grade, only 50% of it showed the signet cell features, which gave her hope.

Hannah’s treatment plan included 5 rounds of chemotherapy before undergoing a complex 12-hour surgery in April 2023. The surgery involved removing several organs, including her ovaries and uterus, as well as parts of her colon and ureter. This news was particularly hard to process, as it meant the end of her hopes for having biological children. She also had to deal with various physical challenges during recovery, such as learning to digest food again, managing pain, and dealing with temporary tubes and a catheter.

Despite the overwhelming circumstances, Hannah continued to push herself, slowly regaining strength with the support of her husband and sister. She also found solace in connecting with others through appendix cancer support groups, which helped her cope with the isolating nature of her rare diagnosis. Genetic testing confirmed that her cancer wasn’t hereditary, and a follow-up test after surgery indicated she was cancer-free at that time.

However, in early 2024, doctors detected a small spot on her lung, which they suspected was a recurrence of the cancer. She underwent 5 rounds of radiation, which she described as the easiest part of her treatment. Though her recent scans suggest another recurrence, Hannah remains focused on living fully, cherishing her relationships, and advocating for herself in the medical system.

Hannah’s key message to others facing similar health challenges is the importance of self-advocacy, seeking second opinions, and doing thorough research.

Name:
- Hannah R.
Age at Diagnosis:
- 30
Diagnosis:
- Appendix cancer (mucinous adenocarcinoma of the appendix; appendix cancer with signet cell ring features)
Staging:
- Stage 4
Initial Symptoms:
- Bloating
- Fullness
- UTIs
- Blood in urine
- Painful intercourse
- High blood pressure
- Spotting
Treatment:
- Surgery (appendectomy, cytoreductive surgery)
- Chemotherapy (FOLFOX, HIPEC)
- Radiation to treat recurrence

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

Thank you for sharing your story, Hannah!

Inspired by Hannah's story?

Share your story, too!

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

Thank you for sharing your story, Amanda!

Inspired by Amanda's story?

Share your story, too!

Chemotherapy Colorectal Hysterectomy Patient Stories Radiation Therapy Rectal Surgery Treatments

Jessenia’s Stage 3 Rectal Cancer Story

Post author By Chris Sanchez
Post date September 27, 2024
No Comments on Jessenia’s Stage 3 Rectal Cancer Story

September 27, 2024

Jessenia’s Stage 3 Rectal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Jessenia, a 35-year-old mother from New Jersey, shares her emotional journey of being diagnosed with and treated for stage 3 rectal cancer, a type of colorectal cancer.

Jessenia’s story begins when she was pregnant with her son. One day, after noticing blood after using the toilet, she went for a checkup and the doctor initially diagnosed her with hemorrhoids. However, persistent pain and symptoms led her to seek further medical help, culminating in a visit to the ER. Although an unempathetic doctor brushed her off, she was eventually diagnosed with rectal cancer.

Jessenia describes her shock at the diagnosis and the fear that followed, especially as she had recently lost a loved one to cancer. Despite these fears, she leaned on the support of her husband, who never left her side through the grueling treatment process, which included 6 weeks of radiation and oral chemotherapy. The treatment left her physically weakened, causing her to drop a considerable amount of weight and experience severe side effects like nausea.

Faced with the possibility of living with a colostomy bag for life, Jessenia initially resisted surgery, opting instead for aggressive chemotherapy and radiation. Unfortunately, the tumor only shrank slightly, and surgery became necessary. She ultimately had a temporary colostomy bag and struggled emotionally with this new reality. Despite her discomfort and initial reluctance to manage the bag, her husband stepped up, learning how to care for it and providing her with unwavering support.

Throughout her journey, Jessenia dealt with physical and emotional pain, from dealing with the side effects of her treatments to undergoing a full hysterectomy to reduce the risk of the cancer spreading. The loss of her reproductive organs was difficult to accept, especially as she only had one child. However, she and her husband made peace with the situation, focusing on their love for their son.

Jessenia learned to adapt, even eventually embrace life with her temporary colostomy bag, and resumed her daily activities. She reflects on her experience, offering advice to others facing health challenges: accept your situation, stay positive, and avoid stress. Her strength and determination helped her through the darkest times, and she emphasizes the importance of advocating for oneself in the healthcare system.

In the end, Jessenia shares her realization that one should live one’s life fully, regardless of one’s circumstances. She traveled and made memories throughout her cancer journey, determined to spread awareness and inspire others to get checked for symptoms. Her message is clear: don’t let fear stop you from living, and always seek help when something feels wrong.

Name:
- Jessenia L.
Age at Diagnosis:
- 35
Diagnosis:
- Rectal cancer
Staging:
- Stage 3
Initial Symptoms:
- Constipation
- Bloatedness
- Bleeding after using the toilet
Treatment:
- Chemotherapy (including oral chemotherapy)
- Surgery (full hysterectomy)
- Radiation

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

Thank you for sharing your story, Jessenia!

Inspired by Jessenia's story?

Share your story, too!

Sara, a 29-year-old content creator, model, and marketer from Montreal, Canada, shares her journey with Crohn’s disease. Diagnosed with ulcerative colitis at the age of 3, Sara’s early symptoms included blood in her stool, frequent bowel movements, and pain. Her condition was managed with medication throughout her childhood, but in 2006, her condition worsened, resulting in a diagnosis of Crohn’s disease, which affected her entire digestive system.

Sara’s treatment involved numerous medications, including prednisone, which led to long-term complications like compression fractures in her spine. Despite this, her condition worsened to the point where, in 2008, she underwent emergency surgery and woke up with a colostomy bag, marking a major shift in her life. The surgery was life-saving, as her intestines were severely inflamed and she was malnourished. The adjustment to ostomy life was challenging, especially due to societal stigma. Sara hid her ostomy for 15 years, struggling with her self-image and the fear of judgment.

Over time, Sara underwent 4 more surgeries, resulting in a permanent ileostomy. In her late teens and early 20s, she struggled with accepting her condition. She refrained from wearing bikinis or discussing her ostomy openly, and she often Photoshopped her images to hide the bag. Her turning point came when she began opening up to close friends and received their acceptance and support, which motivated her to slowly embrace her new reality.

In 2019, Sara took a bold step by wearing only bikinis during a family vacation to Cuba, challenging herself to overcome her insecurities. This experience marked a milestone in her acceptance of her body and her ostomy. Through time and self-growth, Sara became more comfortable with her condition, even sharing it with her community on social media to raise awareness and encourage others.

Sara highlights the importance of building a supportive community for those with IBD or ostomies. She stresses that exposure and setting small challenges can help overcome fears and stigma. Connecting with others who share similar experiences, she believes, can offer comfort and help in adjusting to life with an ostomy. Sara’s journey also emphasizes self-acceptance, growth, and the importance of not comparing oneself to others but instead focusing on personal progress. After years of struggle, she now lives openly with her ostomy and works to inspire others with her story.

Name:
- Sara L.
Age at Diagnosis:
- 3
Diagnosis:
- Crohn’s disease (IBD)
Initial Symptoms:
- Bloody stool
- Loss of appetite
- Frequent bowel movements
- Severe pain
Treatment:
- Corticosteroid therapy (Prednisone)
- Tumor necrosis factor-alfa inhibitors (Humira [adalimumab], Remicade [infliximab])
- Chemotherapy (methotrexate)
- Immunosuppressive (Imuran [azathioprine])
- Anti-inflammatory agent (Pentasa [mesalamine])

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

Thank you for sharing your story, Sara!

Inspired by Sara's story?

Share your story, too!

Madison’s Stage 4 Melanoma Story

Post author By Chris Sanchez
Post date September 20, 2024
No Comments on Madison’s Stage 4 Melanoma Story

September 20, 2024

Madison’s Stage 4 Melanoma Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Madison, a 28-year-old physician assistant from Kalamazoo, MI, was diagnosed with stage 4 metastatic melanoma, a kind of skin cancer. She discovered a lump on her left upper arm in the spring of 2023, but didn’t have it examined until a dermatology appointment later that summer. Because she and her doctor initially believed it to be a benign tumor, she agreed to wait until after her wedding and honeymoon for an excision. However, in October 2023, her doctors diagnosed metastatic melanoma.

When she was 18, doctors had previously biopsied a suspicious mole on Madison’s left forearm, and incorrectly diagnosed it as non-cancerous. Her modern-day medical team reviewed her past medical records, and discovered that the mole was actually cancerous and should have been fully excised. This delayed diagnosis allowed the melanoma to potentially metastasize, a known risk of melanoma reoccurring years after the initial diagnosis.

Following her melanoma diagnosis, Madison underwent a PET scan that showed no signs of disease elsewhere, which was reassuring. She opted for surgery at the primary and metastatic site and continued with regular scans. In March 2024, however, Madison found another lump on her right back. Subsequent scans revealed a brain tumor in the right temporal lobe and additional subcutaneous tumors in her back and hip, leading to her stage 4 diagnosis.

Madison began dual-agent immunotherapy (Opdivo [nivolumab] and Yervoy [ipilimumab]) in April 2024. She tolerated her first session well, but after the second, she experienced severe side effects, including high fevers and a rapid heart rate. She went to the hospital, where she was diagnosed with autoimmune hepatitis, a potential side effect of immunotherapy. While hospitalized, her liver enzymes spiked, leading to suspicion of cytokine release syndrome—a rare but serious complication. Eventually, after an infusion, her liver enzymes stabilized, and she continued to taper off steroids.

Despite the challenges, Madison’s latest scans in July showed no evidence of disease in her body. Her brain tumor had shrunk by half, though she still faces the decision to proceed with radiation therapy. She remains realistic but hopeful, acknowledging the slim chances of further shrinkage without radiation. Madison’s outlook has been positive, driven by her innate optimism and belief in holistic approaches to health, though she recognizes the importance of conventional treatments when necessary.

Throughout her journey, Madison emphasizes the importance of second opinions in cancer treatment, as they can provide different perspectives on treatment options. She encourages others to trust their instincts, be advocates for their health, and take care of their bodies. Her message is clear: listen to your body, seek multiple opinions, and prioritize your well-being above all else.

Name:
- Madison C.
Age at Diagnosis:
- 27
Diagnosis:
- Melanoma
Staging:
- Stage 4
Initial Symptoms:
- Abnormal mole on arm when she was 18 (misdiagnosed)
- Hard lump on upper left arm
Treatment:
- Surgery (excision at primary and metastatic site)
- Dual-agent immunotherapy (Opdivo [nivolumab] and Yervoy [ipilimumab])
- Radiation (pending)

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

Thank you for sharing your story, Madison!

Inspired by Madison's story?

Share your story, too!

Lauren, from Houston, Texas, is living with stage 4 breast cancer and stage 4 colon cancer. Her journey began in 2014 when, after breastfeeding her second child, she discovered a lump in her breast. As her doctor initially dismissed it as fibroadenoma, Lauren did not undergo further testing. Two years later, she developed pains in her breast and noticed that her left nipple looked strange, and upon further examination, doctors diagnosed her with stage 3 breast cancer. She underwent chemotherapy, a mastectomy, and radiation, followed by hormone therapy for several years.

In 2021, Lauren began experiencing stomach pains and noticed blood in her stool. Following a colonoscopy, she was diagnosed with stage 3 colon cancer after doctors discovered a cancerous lymph node. She underwent surgery and chemotherapy but struggled with side effects, particularly from the chemotherapy drug oxaliplatin. Lauren also began to explore alternative treatments like high-dose intravenous vitamin C and fasting, inspired by research on treating KRAS mutation cancers, which are known to be particularly aggressive and difficult to treat.

In 2022, after experiencing further stomach pain, a PET scan revealed that the cancer had spread to Lauren’s abdominal lining and spine. Her oncologist gave her a terminal prognosis, estimating that she had around 10 months left to live. Desperate, Lauren intensified her vitamin C treatments, fasting, and other therapies. Remarkably, by December of that year, her PET scan showed no evidence of disease, although her doctor cautioned her to remain vigilant.

Lauren’s journey took another turn when a biopsy revealed that her spinal cancer was not colon cancer but a recurrence of her breast cancer, which had resurfaced and spread while her immune system was weakened. Although she has had to deal with recurring spots of cancer in her spine, Lauren has successfully managed her colon cancer, with her tumor markers remaining low. She credits her alternative treatments, alongside traditional therapies, for keeping her cancer at bay.

Now, Lauren undergoes PET scans every 3 months to monitor her condition. While managing cancer has become part of her daily life, especially with gastrointestinal side effects from her colon surgery, she remains proactive in her treatment and hopeful for the future. Despite the challenges, Lauren emphasizes the importance of staying informed, advocating for oneself, and maintaining hope, especially for those dealing with KRAS mutation cancers.

Name:
- Lauren B.
Age at Diagnosis:
- 31
Diagnosis:
- Breast cancer
- Colon cancer
Staging:
- Stage 4 for both
Initial Symptoms:
- Lump in left breast that grew
- Strange appearance of nipple
Treatment:
- Surgery (radical left mastectomy, lymph node removal; removal of part of colon and appendix)
- Chemotherapy (Doxorubicin and Taxol; Oxaliplatin and Xeloda)
- Radiation therapy
- Hormone therapy
- Complementary treatments (fasting, high-dose intravenous Vitamin C)