Categories
Chemotherapy Metastatic Non-Hodgkin Lymphoma Patient Stories Treatments

Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Sandy was diagnosed with stage 4 non-Hodgkin lymphoma in 2024. Her initial symptoms included persistent coughing, weakness, and shortness of breath. After weeks of worsening symptoms and ineffective treatments, an MRI revealed a large mass in her chest, which eventually led to the collapse of her left lung due to a massive tumor. A biopsy confirmed the diagnosis of lymphoma, a cancer that Sandy later described as a blessing in disguise due to its responsiveness to chemotherapy.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Treatment began immediately, consisting of six intense rounds of chemotherapy, each lasting five days in the hospital followed by two weeks of recovery at home. The process was physically and emotionally grueling, marked by extreme fatigue, weight loss, and hair loss. Despite these challenges, Sandy focused on mental resilience, which she believes was critical to her survival. She emphasized the importance of maintaining movement, even during the most debilitating moments.

Sandy D. feature profile

To cope mentally with stage 4 non-Hodgkin lymphoma, Sandy turned to spirituality, meditation, and writing. She frequented a meditation garden where she found solace. Writing became a therapeutic outlet, leading to the creation of her book, Cancer Ramblings. Writing helped her process her experience and turn her pain into purpose.

Sandy celebrated her remission as a profound moment of liberation and gratitude, describing it as a second chance at life. She plans to monitor her health closely while maintaining a conscious lifestyle. She views sharing her story as a way to inspire others, providing hope and comfort to those facing similar challenges. Her key advice is to visualize a positive outcome and hold onto it as a guiding light through the darkest moments. Sandy’s enduring image was of herself running on the beach—a vision she ultimately realized.


  • Name: Sandy D.
  • Age at Diagnosis:
    • 45
  • Diagnosis:
    • Non-Hodgkin lymphoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Persistent coughing
    • Weakness
    • Shortness of breath
  • Treatment:
    • Chemotherapy (six rounds)
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.

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


Sandy D. feature profile
Thank you for sharing your story, Sandy!

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More Metastatic Non-Hodgkin Lymphoma Stories

Stephanie V.

Stephanie V., Primary Mediastinal (PMBCL), Stage 4

Symptoms: Asthma/allergy-like symptoms, lungs felt itchy, shortness of breath, persistent coughing
Treatments: Pigtail catheter for pleural drainage, video-assisted thoracoscopic surgery (VATS), R-EPOCH chemotherapy (6 cycles)
...


Stephanie R., Mantle Cell Lymphoma (MCL), Stage 4



Symptom: Elevated white blood cell count



Treatment: 6 months of rituximab + ibrutinib, 4 cycles of hyper-CVAD chemotherapy
...

Sheryl B., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: (Over 15 years) Skin irritation from temperature changes, rising WBC levels, unexplained fatigue, retinal hemorrhage, hardened abdomen (from enlarged spleen)
Treatment: 6 cycles Hyper-CVAD chemotherapy
...

Shari B., Mantle Cell Lymphoma (MCL), Stage 4



Symptom: None; lymphoma discovered at unrelated doctor appointment
Treatments: 6 cycles R-CHOP, 5 cycles phase 3 trial of Velcade + Rituxan (normally for multiple myeloma), allogeneic bone marrow transplant (BMT)
...

Shahzad B., Refractory Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Extreme fatigue
Treatments: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
...
Sandy D. feature profile

Sandy D., Non-Hodgkin’s Lymphoma, Stage 4



Symptoms: Persistent coughing, weakness, shortness of breath

Treatment: Chemotherapy
...
Sammie shares her non-hodgkin's lymphoma story
Sammie F., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Chest pain, back pain, bump on neck, night sweats Treatments: Chemotherapy, CAR T-cell therapy...

Richard P., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Relapse Symptoms: Swelling in leg, leg edema Treatments: R-CHOP chemotherapy, clinical trial (venetoclax-selinexor)
...
Paige C.

Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy
...
Nolan W. feature profile

Nolan W., T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL), Stage 4



Symptoms: Debilitating fatigue, flu-like symptoms without a fever, swollen lymph node under the left arm

Treatments: Chemotherapy (R-EPOCH & RICE), bone marrow transplant
...

Nina L., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy (R-CHOP)
...
Headshot of Nicky, who's living with stage 4 follicular lymphoma
Nicky G., Follicular Lymphoma, Stage 4
Symptoms: Fatigue, weight loss, lumps in the neck and groin

Treatments: Quarterly infusions of rituximab, radioactive iodine 131 infusion, platelet transfusion...

Mike E., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Persistent, significant back pain

Treatments: Surgery, chemotherapy
...

Mags B., Primary Mediastinal (PMBCL), Stage 4



Symptoms: Exhaustion, migraines, persistent coughs, swelling and discoloration in left arm
Treatment: Chemotherapy (R-CHOP, 6 cycles)
...

Luis V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Persistent cough, fatigue, unexplained weight loss



Treatment: Chemotherapy (R-CHOP and methotrexate)
...

Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4



Initial Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen

Treatment: Chemotherapy, targeted therapy, radioimmunotherapy
...
Kris W.

Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
...
Kim

Kim S., Follicular Lymphoma, Stage 4



Symptom: Stomach pain
Treatments: Chemotherapy (rituximab & bendamustine), immunotherapy (rituximab for 2 additional years)
...

Jonathan S., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Severe shoulder pain

Treatments: R-CHOP chemotherapy, methotrexate, focal radiation, autologous stem cell transplant
...

John S., Follicular Lymphoma, Stage 4



Symptom: Swollen lymph nodes

Treatments: Clinical trial, chemotherapy
...

Jason W., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: Hives, inflamed arms



Treatments: Calabrutinib, Lenalidomide, Rituxan
...

Harjeet K., Subcutaneous Panniculitis-like T-Cell-Lymphoma (SPTCL), Stage 4



Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatments: High-dose chemotherapy, allogeneic stem cell transplant
...

Erin R., Diffuse Large B-Cell Lymphoma (DLBCL) & Burkitt Lymphoma, Stage 4



Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatments: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
...

Emily G., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Pain in left knee

Treatments: Chemotherapy (R-CHOP and high-dose methotrexate)
...

Emily S., Burkitt Non-Hodgkin Lymphoma, Stage 4



Initial Symptoms: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough

Treatment: Chemotherapy, stem cell transplant, immunotherapy
...
David shares his stage 4 follicular lymphoma diagnosis
David K., Follicular Lymphoma, Stage 4 Symptoms: Sharp abdominal pains, frequently sick, less stamina Treatments: Chemotherapy (R-CHOP), immunotherapy (rituximab), radiation, clinical trial (bendamustine), autologous stem cell transplant...
Cindy M. feature profile

Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
...

Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4



Symptom: None



Treatments: R-CHOP chemotherapy, rituximab
...

Bobby J., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: Fatigue, enlarged lymph nodes
Treatments:Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD
...

Barbara R., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Abdominal and gastric pain



Treatments: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851
...
Ashlee K. feature profile

Ashlee K., Burkitt Lymphoma, Stage 4



Symptoms: Abdominal pain, night sweats, visible mass in the abdomen

Treatments: Surgery (partial colectomy to removed 14 inches of intestine), chemotherapy
...

Categories
bendamustine (Bendeka) Bexxar CAR T-Cell Therapy Chemotherapy Follicular Lymphoma Gazyva Immunotherapy Metastatic Non-Hodgkin Lymphoma Patient Stories R-CHOP Treatments Vorinostat Zydelig (idelalisib)

Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

Laurie, a Los Angeles resident, was diagnosed with stage 4 follicular non-Hodgkin lymphoma in 2006, when she was 46. Her journey to diagnosis began years earlier with vague symptoms—frequent sinus infections, a tendency for her right eye to dry out, fatigue, and a lump in her abdomen. Multiple doctors dismissed her concerns, with one attributing the lump to a hernia. But a diagnostician ordered a CT scan, and it revealed a grapefruit-sized tumor and spots on her lungs.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After undergoing a series of tests, including biopsies, Laurie learned she had follicular non-Hodgkin lymphoma, a type of cancer affecting the lymphatic system. Her initial response to the cancer diagnosis was shock, followed by depression and uncertainty about how to explain the situation to her young son and husband.

Laurie’s treatment regimen started with chemotherapy and a monoclonal antibody, which successfully reduced the tumors after 6 rounds. However, her cancer relapsed, and she explored additional treatment options, including a clinical trial using an HDAC inhibitor (therapy that helps control how cancer cells grow and divide by affecting the cancer cell DNA). It initially stabilized the cancer but ultimately failed after 11 months. Consequently, Laurie turned to alternative therapies, including radioimmunotherapy (delivering high dose radiation directly to the tumor cells) and a more aggressive chemotherapy regimen, but these also proved unsuccessful.

In 2011, Laurie enrolled in a clinical trial for a Pi3 kinase inhibitor (a treatment that works to block a pathway cancer cells use to grow and survive that can slow a cancer’s growth and help keep it under control), which kept her cancer stable for over 5 years, albeit not fully eliminating it. During this time, she learned about CAR T-cell therapy, a cutting-edge treatment using a patient’s own T cells to target cancer cells. While initially not available for follicular lymphoma, CAR T-cell therapy became an option for Laurie in 2018. She consequently underwent the procedure — a remarkable 7th line of cancer treatment. As a result, she achieved remission for the first time in 12 years. As of 2024, Laurie has remained cancer-free. Her oncologist considers her cured, as her CAR T-cells continue to be detectable in her system.

Throughout her treatment journey, Laurie faced numerous challenges, including the side effects of chemotherapy, radiation, and steroids. She developed avascular necrosis, which required hip surgery, a consequence of long-term steroid use. However, despite these struggles, Laurie’s battle with cancer transformed her into a passionate patient advocate. She now works with 3 nonprofits, helping others navigate cancer treatment and advocating for more accessible and less potentially toxic therapies like CAR T-cell therapy. Laurie emphasizes the importance of finding a specialized oncologist, self-advocacy, and the value of second opinions and clinical trials in managing cancer.

Laurie’s story underscores the evolving landscape of cancer treatment, particularly in the context of immunotherapy. She highlights the importance of staying informed and advocating for oneself or having someone advocate on their behalf, especially as new therapies emerge. Through persistence, resilience, and research, Laurie continues to support others facing similar battles. She shares her journey to inspire hope and grow awareness.


  • Name:
    • Laurie A.
  • Age at Diagnosis:
    • 46
  • Diagnosis:
    • Follicular lymphoma
  • Staging:
    • Stage 4
  • Initial Symptoms:
    • Frequent sinus infections
    • Dry right eye
    • Fatigue
    • Lump in abdomen
  • Treatment:
    • Chemotherapy
    • Targeted therapy
    • Radioimmunotherapy

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


Thank you for sharing your story, Laurie!

Inspired by Laurie's story?

Share your story, too!


Related Cancer Stories

More Follicular Lymphoma Stories

Courtney L., Follicular Lymphoma, Stage 3B



Symptoms: Intermittent back pain, sinus issues, hearing loss, swollen lymph node in neck, difficulty breathing
Treatment: Chemotherapy

John S., Follicular Lymphoma, Stage 4



Symptom: Swollen lymph nodes

Treatments: Clinical trial, chemotherapy

Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4



Initial Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen

Treatment: Chemotherapy, targeted therapy, radioimmunotherapy
David shares his stage 4 follicular lymphoma diagnosis
David K., Follicular Lymphoma, Stage 4 Symptoms: Sharp abdominal pains, frequently sick, less stamina Treatments: Chemotherapy (R-CHOP), immunotherapy (rituximab), radiation, clinical trial (bendamustine), autologous stem cell transplant
Headshot of Nicky, who's living with stage 4 follicular lymphoma
Nicky G., Follicular Lymphoma, Stage 4
Symptoms: Fatigue, weight loss, lumps in the neck and groin

Treatments: Quarterly infusions of rituximab, radioactive iodine 131 infusion, platelet transfusion

Categories
Non-Hodgkin Lymphoma Patient Stories

Michelle’s Stage 2 Non-Hodgkin Lymphoma Story

Michelle’s Stage 2 Non-Hodgkin Lymphoma Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Michelle is a survivor of stage 2 primary mediastinal large B-cell lymphoma (PMBCL) non-Hodgkin lymphoma. In her early thirties, she began experiencing symptoms such as neck pain, which she initially dismissed as a pulled muscle. This was around the anniversary of her mother’s passing from stomach cancer, and Michelle felt a growing sense that something was wrong. Following a series of inconclusive medical exams, an x-ray ultimately revealed a large tumor in her chest, leading to her diagnosis of non-Hodgkin lymphoma. Michelle’s diagnosis and subsequent journey marked a significant and transformative chapter in her life.

The discovery of the tumor stunned and terrified Michelle, particularly given her recent experience losing her mother to cancer. Genetic testing revealed no hereditary links to her illness, suggesting it was likely environmental, further compounding her sense of the unknown. Her treatment plan included 6 rounds of intensive chemotherapy, which involved 5-day hospital stays on a continuous drip. The treatment was effective but came with a host of side effects, including severe nausea, fatigue, appetite and weight loss, and hair loss, which further traumatized Michelle. She recalls how losing her hair and eyebrows created a “loss of identity,” as she struggled to recognize herself. Her physical transformation added to the emotional toll, which was exacerbated by continuing to work full-time.

Ringing the bell at the end of Michelle’s successful chemotherapy treatment marked the start of a difficult recovery journey rather than closure. She found that, contrary to popular belief, the end of treatment brought a new set of challenges: trauma from the experience, persistent health issues from chemotherapy, and anxiety about recurrence. Additionally, her body struggled to absorb nutrients due to chemotherapy’s impact on her digestive system. Despite these challenges, Michelle committed herself to her recovery, focusing on nutrition and mental well-being.

This experience led Michelle to change her career path, eventually becoming a certified integrative nutrition health coach to support other cancer survivors in recovery. She emphasizes that recovery is an ongoing process, requiring tools to manage stress, anxiety, and long-term side effects like lymphedema and scar tissue.

Michelle has found purpose in helping others navigate the post-treatment journey, hoping to bridge the gaps in aftercare support. Through her own trials and transformations, she has emerged with a renewed sense of identity and dedication to holistic health, embracing the perspective and purpose she found on the other side of her battle with cancer.


  • Name:
    • Michelle P.
  • Diagnosis:
    • Primary mediastinal large B-cell lymphoma (PMBCL) non-Hodgkin lymphoma
  • Staging:
    • Stage 2
  • Initial Symptom:
    • Severe neck pain
  • Treatment:
    • Chemotherapy

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


Thank you for sharing your story, Michelle!

Inspired by Michelle's story?

Share your story, too!


Related Cancer Stories

More PMBCL Non-Hodgkin Lymphoma Stories

Arielle R., Primary Mediastinal (PMBCL)



1st Symptoms: Swollen neck lymph nodes, fever, appetite loss, weight loss, fatigue, night sweats, coughing, itchy skin, trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Keyla S., Primary Mediastinal (PMBCL), Stage 1



1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Donna S., Primary Mediastinal (PMBCL), Stage 1-2



1st Symptoms: Visible lump in center of throat, itchy legs, trouble swallowing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Patrick M., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Bump pushing up into sternum
Treatment: 6 cycles of DA-EPOCH-R (dose-adjusted) chemotherapy at 100+ hours each

Crystal Z., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Categories
CAR T-Cell Therapy Chemotherapy Non-Hodgkin Lymphoma Patient Stories Radiation Therapy Treatments

Yiwei and Summer’s Stage 3 Non-Hodgkin Lymphoma Story

Yiwei and Summer’s Stage 3 Non-Hodgkin Lymphoma Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

In this father-daughter interview, Yiwei, a software engineer originally from China, shares his journey with non-Hodgkin lymphoma, from the initial symptoms to his recovery, alongside his daughter Summer. Yiwei describes how he first experienced severe itching and shortness of breath in early 2022, which led to a series of medical appointments. Despite initially suspecting an allergy, doctors ultimately discovered a large mass in his chest in July 2022. He was diagnosed with primary mediastinal large B-cell lymphoma (PMBCL).

Yiwei reacted calmly to the diagnosis, despite having being a healthy individual for over 20 years. His family, however, was shocked when they first learned of his cancer, particularly his daughter Summer, who recalls how the news interrupted a casual dinner outing. Summer, like her father, had initially thought he had contracted COVID-19, making the cancer diagnosis even more unexpected.

Yiwei underwent 6 rounds of chemotherapy followed by radiation, which he tolerated well, experiencing minimal side effects beyond hair loss. However, soon after completing his initial treatments in early 2023, his cancer relapsed, with tumors returning in his chest and appearing in his liver. This led to a second round of chemotherapy combined with CAR T-cell therapy. By August 2023, scans showed no evidence of cancer, and follow-up PET scans have continued to confirm his remission.

Summer highlights the long, complicated diagnosis process as a key reason for sharing their story on social media. Through her TikTok account, she raises awareness about the possible early signs of cancer, such as the persistent skin issues her father experienced, and the importance of advocating for one’s health. Her videos have connected with a broader community of cancer patients and survivors, helping others identify concerning symptoms and seek timely medical advice.

Yiwei further elaborates on CAR T-cell therapy, which uses the body’s own immune cells to fight cancer. He expresses admiration for this innovative treatment, noting its effectiveness in his case despite some potential side effects, including a temporary drop in his platelet count.

Both Yiwei and Summer emphasize the importance of mental strength during treatment. Yiwei advises others to stay calm and not to worry excessively, as stress can negatively impact recovery. Summer adds that loved ones can offer reassurance and practical help to support patients through their treatment. Together, they hope their story inspires others to stay vigilant about early symptoms and remain hopeful throughout their cancer journeys.


  • Name:
    • Yiwei T.
  • Age at Diagnosis:
    • 50
  • Diagnosis:
    • non-Hodgkin lymphoma (Primary mediastinal large B-cell lymphoma [PMBCL])
  • Staging:
    • Stage 3
  • Initial Symptoms:
    • Intense itching and rashes
    • Shortness of breath
    • Extreme fatigue
    • Elevated heart rate
    • Lower than normal blood oxygen levels
  • Treatment:
    • Chemotherapy
    • Radiation
    • CAR T-Cell Therapy

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


Thank you for sharing your story, Yiwei and Summer!

Inspired by Yiwei and Summer's story?

Share your story, too!


Related Cancer Stories

More Non-Hodgkin Lymphoma Stories

Arielle R., Primary Mediastinal (PMBCL)



1st Symptoms: Swollen neck lymph nodes, fever, appetite loss, weight loss, fatigue, night sweats, coughing, itchy skin, trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Keyla S., Primary Mediastinal (PMBCL), Stage 1



1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Donna S., Primary Mediastinal (PMBCL), Stage 1-2



1st Symptoms: Visible lump in center of throat, itchy legs, trouble swallowing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Patrick M., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Bump pushing up into sternum
Treatment: 6 cycles of DA-EPOCH-R (dose-adjusted) chemotherapy at 100+ hours each

Crystal Z., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Categories
Breast Cancer Chemotherapy Hormone Therapies Lumpectomy Metastatic Patient Stories Radiation Therapy Surgery Targeted Therapies Treatments

Nina’s Stage 4 Metastatic Breast Cancer Story

Nina’s Stage 4 Metastatic Breast Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Nina M. feature profile

Nina, diagnosed with stage 4 metastatic breast cancer at 34, shares her experience of navigating the complexities of her illness and advocating for her health. She initially noticed a hardening under her left armpit. A year later, the lump grew and her breast showed signs of dimpling. A mammogram and ultrasound finally revealed an abnormal lump and a biopsy confirmed stage 3 breast cancer. Shortly after, scans showed the cancer had spread to her spine, escalating her diagnosis to stage 4.

Nina quickly shifted into a problem-solving mode, managing her treatment plan, scheduling appointments, and staying organized amidst the overwhelming process. She expressed how emotionally challenging it was to balance her feelings while supporting the emotions of those around her.

Her treatment plan included chemotherapy, followed by a lumpectomy, and radiation on both her breast and spine. She continues to undergo regular infusions and medications to keep the cancer at bay. While the chemotherapy caused a lot of side effects, including hair loss, neuropathy, mouth sores, fatigue, and brain fog, she found strength in adapting to these challenges. Despite needing to remain in treatment indefinitely, her current scans show no evidence of disease.

One of the most challenging aspects of her cancer experience was induced menopause, which affected her physically and emotionally, particularly the loss of her ability to carry children. The lifestyle changes brought about by cancer were also difficult for Nina. However, she found solace in documenting her experience online, helping others understand the realities of living with cancer, especially young women and women of color.

Sharing her story became a way to raise awareness and a form of therapy. Nina’s advice to others is to advocate for themselves and to practice radical acceptance of the life changes that cancer brings. She emphasizes the importance of self-love and reevaluating what truly matters during difficult times.


  • Name: Nina M.
  • Diagnosis:
    • Breast Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Hardening under the armpit
    • Lump & dimpling in the left breast
  • Treatments:
    • Chemotherapy
    • Surgery: lumpectomy
    • Radiotherapy
    • Hormone-blocking medication
    • Targeted therapy
Nina M.
Nina M.
Nina M.
Nina M.
Nina M.
Nina M.
Nina M.

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


Nina M. feature profile
Thank you for sharing your story, Nina!

Inspired by Nina's story?

Share your story, too!


More Metastatic Breast Cancer Stories

Nina M. feature profile

Nina M., Metastatic Breast Cancer



Symptoms: Hardening under the armpit, lump & dimpling in the left breast

Treatments: Chemotherapy, surgery (lumpectomy), radiotherapy, hormone-blocking medication, targeted therapy
Sherrie shares her stage 4 metastatic breast cancer story
Sherri O., Metastatic Breast Cancer, HER2+ & Colon Cancer, Stage 3
Symptoms: Shortness of breath, lump under armpit, not feeling herself
Treatments: Chemotherapy, Transfusions
April D.

April D., Metastatic Triple-Negative Breast Cancer, BRCA1+



Symptom: Four lumps on the side of the left breast

Treatments: Chemotherapy (carboplatin, paclitaxel doxorubicin, surgery (double mastectomy), radiation (proton therapy), PARP inhibitors
Brittney shares her stage 4 breast cancer story
Brittney B., Metastatic Breast Cancer
Symptoms: Lump in the right breast, inverted nipple

Treatments: Surgery, chemotherapy, immunotherapy, radiation
Bethany W. feature profile

Bethany W., Metastatic Breast Cancer



Symptom: Lower back pain
Treatments: Chemotherapy, radiation, maintenance treatment

Categories
Bladder Cancer Chemotherapy Gemzar (gemcitabine) Patient Stories Surgery Transurethral resection of bladder tumor (TURBT) Treatments

Michelle’s Recurrent Stage 1 Bladder Cancer Story

Michelle’s Recurrent Stage 1 Bladder Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Michelle R. feature profile

Michelle’s experience with recurrent stage 1 bladder cancer started with intermittent blood in her urine, which led to multiple urgent care visits, where she was initially misdiagnosed, and eventually a diagnosis of papillary urothelial carcinoma. Upon diagnosis, she underwent TURBT surgery to remove the tumor and then chemotherapy.

Despite multiple rounds of chemotherapy, Michelle’s cancer recurs within three to six months after stopping treatment. Her doctor suggests ongoing monthly maintenance chemotherapy, but she negotiates for less frequent sessions due to the harsh side effects. She became vigilant about recognizing symptoms of recurrence, helping her manage the chronic nature of her cancer.

Facing the possibility of losing her bladder, she expresses a preference for an Indiana pouch, influenced by her friend’s experience and her desire for a better quality of life. She has already undergone surgery to improve her chances of adapting to the Indiana pouch, demonstrating her proactive approach to managing her health.

Michelle emphasizes the importance of self-advocacy in medical care, seeking multiple opinions, and making informed decisions. She acknowledges the emotional toll of living with cancer and stresses the importance of mental health care and self-care.


  • Name: Michelle R.
  • Age at Diagnosis:
    • 43
  • Diagnosis:
    • Bladder Cancer
  • Staging:
    • Stage 1
  • Symptoms:
    • Irregular occurrences of seeing streaks of blood in urine
    • Specific type of pain when bladder is full
    • Unexplained weight loss
    • Urinary urgency
    • Malaise
    • Fatigue
  • Treatments:
    • Chemotherapy: gemcitabine
    • Surgery: transurethral resection of bladder tumor (TURBT)
Michelle R.

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



I had been experiencing some streaks of blood in my urine… It was very random and not consistent at all.

Introduction

I live near Atlanta, Georgia. I’m a mother to an adult son and an auntie to my nieces and nephews. I have two brothers and a sister. I’m a genetic genealogist. If I’m not working my full-time job, I’m working my side business, Bless Your Vibes LLC.

I have recurrent stage 1 non-muscle-invasive bladder cancer (NMIBC). I’ve had nine recurrences, countless surgeries, and chemotherapy. As long as I catch it before it invades the muscle, I’ve been told I can deal with this for the rest of my life.

Michelle R.
Michelle R.

Pre-diagnosis

Initial Symptoms

I had been experiencing some streaks of blood in my urine. It would happen for a day or two and then nothing for a month, and then it would happen again. It was very random and not consistent at all. I already had a hysterectomy several years prior, so I knew it wasn’t related to that. I didn’t have any pain nor symptoms of a urinary tract infection, so I immediately thought about kidney stones.

Going to Urgent Care

When I went to urgent care, they did a culture and said, “You don’t have any infection, so it’s probably kidney stones. We’re going to give you antibiotics and send you on your way.” I went to urgent care a total of four times from June 2017 to February 2018.

She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding.’

The last time, I did a televisit. I knew they were going to give me antibiotics because it was the same old story, so I planned to call them during my lunch break. The doctor I spoke with during my televisit was more thorough than any other doctor I’ve ever had in my life.

She asked me questions and didn’t allude to any infection or kidney stones. She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding. Don’t say ‘blood without pain.’” She stressed that to me for whatever reason.

Seeing a Urologist

The urologist still didn’t indicate anything. They said, “We’ll try to figure out what’s going on.” I had a CT scan and some urine tests, but that was about it.

Michelle R.
Michelle R.

Diagnosis

Getting the Diagnosis

The urine test results came back through my patient portal and said I was positive for papillary urothelial carcinoma. I knew what carcinoma was, but I didn’t know what papillary urothelial meant. I panicked. It was Friday afternoon and everybody’s gone. The only person I told was my boss at work because I had to leave early.

First thing on Monday morning, I called the office and left a message. They called back and said, “We can’t tell you anything. You need to come in to see the doctor.” I couldn’t go in until later that week, so I had to sit with it for a whole week.

When I went in, the doctor was so matter-of-fact and cold. He started talking about treatment. I said, “Stop. Do I have cancer?” He looked at me like I should already know. I was numb. He said, “Based on the CT scan, it looks like there’s a large mass. Normally, we would go in with a scope and then proceed with surgery. But since we know that it’s cancer, can we bypass the scope and go into surgery?” I said yes because I wanted this out of me, so he scheduled it for two weeks after.

I had one friend… She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me.

Treatment

Discussing the Treatment Plan

With bladder cancer, you have high-grade or low-grade, muscle-invasive or non-muscle-invasive. My doctor pulled out a treatment chart and it showed everything. It was pretty clear-cut. It showed the schedule of treatment, which starts from removal or transurethral removal of bladder tumor (TURBT), and then it goes through the surgeries and the types of chemotherapy.

Michelle R.
Michelle R.
Preparing for Surgery

I remember trying to prepare myself. I was freaking out because up until the night before, I had no ride to my surgery. My son didn’t have his license yet and all of my friends worked. I didn’t have any family to help. I literally had no one. I started calling people that I casually knew and nobody stepped up.

Then I had one friend who I called and I was telling her about it when she said, “Why didn’t you ask me?” I didn’t even think about it because she’s disabled and she turned out to be the one who would step up. She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me. It humbled me. I didn’t even know then all the friendships that I was about to lose over this, but from back home, she’s the only friend I have left. I’ve lost all of them. 

I went into surgery and at the time, I felt like I had a lot of people depending on me, so I told the doctor, “I’m not just another patient. Treat me well. Do me right because I have a lot of people who depend on me.” I felt he was offended by that because he said, “I treat all my patients the same.” He was very dry.

I asked, “What’s the best-case and worst-case scenario?” He said, “Best-case scenario is I get it all, you go home today, and you rest. Worst-case scenario is you wake up and have a bladder bag.” He told me this right before going in and I was in complete shock. I couldn’t do anything else but pray.

I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me.

Surgery

After surgery, my friend was the first person to greet me coming out. She was in the recovery room and as I was waking up, I felt that he got it all and I was going home. I believed it in my head. After I got more coherent, I asked the nurse, “Did he get it all?” And she said yes.

I went home to recover, took the next day off, and went back to work the following day. It was like I had cancer and then I didn’t have cancer in that short time. I didn’t know at the time that it was going to happen nine more times over 6 ½ years.

One of the first things this doctor told me was, “I have patients who have been coming to me for 20 years. I go in and get it out, and they go about their way for 20 years.” At first, I was upset that he said that, but later, I was glad because that prepared me. He indicated that it was going to be normal to keep coming back.

Not every case is chronic, but I like to know things because I like to be prepared. It helped me put it into my head that I’m going to have to deal with this. On one hand, it helps me. But on the other hand, I don’t feel like I’ll ever have that winning moment. It’s going to be a lifetime thing to deal with.

Michelle R.
Michelle R.

Recurrence

I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me. It looked like a succulent flower because it was so tiny and had little shoots. I’m lying there looking at the screen, thinking, “How could something so beautiful be so deadly?” Then he said, “We can take care of this right now.”

I asked him, “What does this entail?” He said, “We pluck it off.” Then through the screen, I saw this little grabber thing come through and he plucks it. It was very surreal. You go from cancer to no cancer because once that’s gone, you have no evidence of disease.

If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.

Moving to Atlanta

I was moving from Ohio to Atlanta, so I asked him what I needed to do. He said, “Come see me one more time before you go.” I did that and I was clear, so I was okay.

I started searching for the top urologists, top oncologists, and the hospital networks in the area. I did a lot of research and called some of the hospitals, which included Emory because they were in my insurance network. I asked, “If you had a serious problem with your bladder and you needed a urologist, who would you go to?” They told me about this doctor and as soon as I connected with the office, it was so different.

This doctor is a urologic oncologist and supposedly the best in the network. I explained my situation and gave my brother’s address since I didn’t have my new address yet. They emailed me papers and everything. There was such an urgency to be seen and that made me feel very comfortable and that I would be taken care of.

Michelle R.
Michelle R.

When I went, they said, “We’re not even going to have a consultation. We’re going right into cystoscopy. I want to see what’s going on there.” I’m glad they did because that was my fourth growth and it had taken off. It was very large and from the pathology report, it was high-grade.

After that scope, they said, “We’re going to do the surgery and we’re going to do your chemo,” so I did that.

During my follow-up, I didn’t see the doctor, but I saw someone else from his team. I had been taking cues from my first doctor that it wasn’t a big deal. She was the first one who looked me in the face and said, “Do not put this off because you can die from this,” and that was the first time anybody said that I could actually die from this.

Up until then, it was very casual. From that point on, I took everything very seriously. If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.

There are specific symptoms that I now recognize when I have active cancer.

Being Aware of Symptoms of Recurrence

I’ve had this nine times now, so I’ve paid attention to my body and my symptoms, and I started recognizing patterns. When I have active growth, there is a very specific pain that I feel in the morning when my bladder is full. Once I empty it, the pain goes away. When I feel that, I know I have a growth.

I’m a plus-sized person. I’m fairly large. But before I was diagnosed, I lost a lot of weight. I lost 60 lbs and that was one of my other symptoms before I was actually diagnosed. I had unexplained weight loss and I had been trying to lose weight my whole life. 

Then I have a lot of sense of urgency to go to the bathroom, like when you have a UTI. I can’t wait for too long because the fuller my bladder, the more it hurts. Then I have a general feeling of unwell and being tired a lot. There are specific symptoms that I now recognize when I have active cancer.

One time, I was having bad pain in the morning. I had a cystoscopy not even a month prior and he said, “It’s probably because you’re still healing.” I said, “No, something’s going on.” He got me in and sure enough, it was another growth. This doctor trusts that I know my body and he’s fully on my team.

Michelle R.
Michelle R.

Maintenance Chemotherapy

For the last recurrence, we know that chemo worked. I got chemo for a whole year and didn’t have any growth, but when I stopped, I had another growth within three to six months, so I had to have another surgery and chemo.

I told him that it seems my growths occur between the three- and six-month mark, so he wants to introduce another chemo to mix with the original one I was taking and do monthly maintenance chemo probably for the rest of my life. I’m not down for that, so I said, “That’s hard on me. What if we go every two or three months?” That’s not even what the board recommends, but he’s willing to consider it.

He said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.

Side Effects of Chemotherapy

The chemotherapy drugs are all different. I get nauseous, but I don’t get sick. I have a little thinning of my hair, but I don’t go bald. I feel overall icky and tired. I go through hot and cold flashes, low-grade fevers, and night sweats. Those last probably about five days before I start to feel a little bit better. But when I went for the whole year, the longer I was doing it, the worse I felt every month.

It started like I was having aphasia or problems with recalling certain words. My memory wasn’t as good. I was having trouble concentrating and trying to process things. It was more complicated. I still have that problem where I trip on my words sometimes. It got progressively worse the longer I was doing chemo.

Michelle R.
Michelle R.
Taking a Chemo Break

I was supposed to do it until the end of the year, but I asked him, “Can I take a break for a month?” Since I had the six-week course before the monthly sessions, he said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.

It’s going to be a cat and mouse game, and the end result is a ticking time bomb. I’m going to do whatever I can to avoid losing my bladder and as long as I can tolerate the chemo. If it gets to the point where I can no longer take it, then I’ll probably have my bladder removed. There aren’t very many options for that.

Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that.

Facing the Possibility of Losing Her Bladder

There’s only one option that I would like. My best friend had urethral cancer, a rare form of it, and she got an Indiana pouch and that to me is the most tolerable. I don’t want to live with a bladder bag. It’s a decision I made before I met her. The only options I knew of were a neobladder or ileostomy bag, and I didn’t like either of those options because if the neobladder doesn’t work, then all you have is the bag.

I’m older and my child is grown and independent. I’ve suffered a variety of things throughout my life. I’m a chronic pain patient and with where I’m at in my life, I didn’t want to suffer, so I made the decision. Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that, and that was hard for other people.

I didn’t really talk about it, but I mentioned to people close to me, “Spend time with me now.” I didn’t come right out and say it, but I would drop hints. Then I met my friend and she showed me that and for the first time, I actually had hope that I could live with this little pouch and do the catheter. I could deal with that. Now that’s where I’m at. If I have to lose my bladder, I want the Indiana pouch.

Michelle R.
Michelle R.

When I was first diagnosed, I was fortunate to get involved with a cancer support center in my old town. I started going to support groups and would see there was only one other person with bladder cancer and he had a bag. He was pretty matter of fact about it and he was happy. He didn’t go through what I did, but his was found at a later stage.

You could tell which ones had a good support system and which ones didn’t. The ones who had a good support system wanted to fight and they fought until the very end.

At the time, I thought I had a good support system, so I was ready to fight. There was a woman who came in who had been diagnosed with stage 4 and it looked like there was no hope for her, but she had such a good support system. Her decision was to not do any treatment. She was going to live the rest of her days.

I remember that meeting because that’s where we got into quality versus quantity. She said, “Why would I prolong my life with the extra time I have being miserable, rather than have a shorter life and be absolutely happy and at peace with it?” That hit me so deeply because I wasn’t even nowhere near where she was as far as stage, but it put in my head that if I ever get to that point, that’s what I would do. It allowed me to process those choices and come to terms with it.

I knew people wouldn’t understand that. Even to this day, when I talk about it, people would say, “Why would you even think like that?” And these are people with cancer. You’re not me. You’re not going through what I do.

Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.

Shared Treatment Decision-Making

My doctor is still pretty dry, but I’ve grown to appreciate him. I had a different surgery a few years ago and prior to that surgery, I let him know right away, “I’ll do whatever I need to do to keep my bladder, but if it comes down to losing my bladder, I will pass. I want you to know that’s where I’m at.” He respected that and said, “I’ll do whatever you want.” I appreciated that for a variety of reasons. He must have written it in my file, so he knows that when I come in, we have the surgery and then chemo. It’s become routine now.

When I had the high-grade recurrence, it got to the point where we weren’t sure and I was scared. I had met my friend by then and brought it up to him. I said, “Can I do the Indiana pouch if I have to lose my bladder?” He said, “Let me see your abdomen.” At the time, I had a B belly, so my waist dipped in and right where the crease was is where the stoma would be. I asked, “How would that work?” He said, “It probably wouldn’t.”

I had this discussion with him. My concern was if I had a bladder bag, every time I moved, bent over, or sat, it would fold over on itself, so it would pinch off the flow. The stickers for the bag wouldn’t stick. I would then have a higher risk for infection and leaks. It solidified why I wasn’t going to live with a bladder bag.

Michelle R.
Michelle R.

I thought about it and said, “What if I got a tummy tuck to smooth that out?” I’m a bariatric patient too and I had lost some weight. He felt around and said, “If you could get this smoother, I think you would have a better chance,” so I started on that journey to get that done.

I had a panniculectomy, so now I have a big round D belly and I’m comfortable with the fact that if I had an ileostomy bag, I wouldn’t crease anywhere. But then I met my friend and that made me feel even better. Now that I’ve had the surgery, I could live with that. It was important that I had that discussion with my doctor because if he blew me off, then I wouldn’t have made that decision.

At my last visit, I brought up that I’m coming up to seven years. He said, “If you want to remove your bladder, we can do that, but I don’t think you’re there yet. This is all superficial, but I understand that if the chemo’s getting to be too much and doing all this is too much, we can do that. But I remember what your decision was initially.” Whatever I decide, he’s comfortable with it.

Where we left off was, I have to let him know whether we’re going to introduce this other chemo and try a few rounds every three months to see if that keeps it away. I can live with that and that’ll buy me a little bit more time. Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.

Importance of Self-Advocacy

Self-advocacy is absolutely critical. I talk about it on my social media and I have a lot of women sending me messages, not very many men, but I tell them that this doesn’t have to be a death sentence. It’s a health challenge, especially if you have the type that I have.

You have to advocate for yourself and understand what’s going on with you. Ask your doctor. Don’t feel like you’re putting him off. If he or she’s brushing you off, find another doctor. Get those answers and make those decisions.

Don’t let any doctor gaslight you. I’m a big proponent of that. I don’t think I would’ve been like this if it wasn’t for all the other experiences I’ve gone through in my life. It brought me to this point where I can advocate for myself and others.

A lot of people I talk to don’t know how to advocate for themselves. I’ve seen five oncologists, two different ones in the same week. There’s nothing out there that says you can’t go to another doctor. You have to fight for yourself and speak up for yourself.

Michelle R.
Michelle R.

Handling the Emotional Toll

I haven’t carried myself with grace. I’ve spent a lot of time crying and being angry at everything. Oddly, one thing I never felt was, “Why me? Why did this happen to me?” I don’t know why. I can’t tell you why, but I’ve not handled it very well.

There have been a lot of times that I get depressed. I shut down. I get gripe-y with people. I withdraw. I’ve always been a quiet person. Everybody says you have to remain positive and be positive. In a lot of aspects, that’s true, but you also have to be a realist and allow yourself to feel these feelings to get through them.

My counselor said, ‘Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis.’

Some things that I do that help me is seek mental health care. When I was first diagnosed, I was seeing a counselor and was on anxiety medication. When I moved, I didn’t need those anymore because back then, I had other situations I was dealing with that I wasn’t in anymore.

I practice a lot of self-care. I used to feel guilty about spending money on myself, especially as a parent, but I don’t anymore because it’s vital to my survival and helps me cope after years of dealing with my cancer.

You go through a grieving process too, much like a death. My counselor said, “Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis. You’ll never go back to life before that diagnosis, especially with cancer. You start grieving the loss of that life, so you need to go through all those steps and emotions to get through it.” For a lot of people, that’s hard.

The biggest stigma in the cancer community is to fight it and beat it. Either beat it or you lose. Normally, those are your only options. But when you have cancer that keeps on coming back, you don’t have that. You’re either sick or not sick. You never win. You never go the rest of your life not having to worry about it again. It becomes a part of you and you learn to deal with it. It’s like getting diagnosed with any other type of major illness. There’s before the diagnosis and after the diagnosis. You have to figure out how to live with it. Find a good support system and resources to help you.

bladder cancer ribbon
Cancer Care Book

Publishing a Cancer Care Book

When I was first diagnosed, there were different things that I had to keep track of. I had a little notebook where I was writing everything down on because I couldn’t keep track of everything, especially once I moved. I had to get new doctors, new patient portals, and new insurance. There was too much for me to keep track of. I found a group and talked to other people about it.

I’m a graphic designer by profession, so I thought about making a book for other people and created a guided journal called Cancer Care Book, which is available on Amazon (no commission is being earned with this link). It’s geared toward women, but men could use it too. It’s for anybody who has cancer but specifically for newly diagnosed people.

There are different sections in it where you can keep track of all your appointments and bills, write things out like a journal, or if you’re an artist, you can draw or doodle. There are coloring pages because I’m a big believer in art therapy.

There’s a section called The Tough Stuff where you can organize your bucket list items and final wishes. They may deny it, but everybody will think about what happens if they die and this is the perfect way. Nobody has to see this if you don’t want to.

If you get so sick and have a caretaker, you can keep track of all the information, like medication, and hand it off to a caretaker. There’s an emergency contact list on the first page, so if something happens to you, people will know who to reach out to. I put everything that I thought I would want when I was first diagnosed.

You can’t take care of anybody else if you don’t take care of yourself first.

Words of Advice

I made a video that showed six things that are key to your survival and the biggest one is early detection. Don’t wait. If you have any kind of symptom or you feel like something is wrong with your body, get it checked out. Don’t put it off. Early detection is key.

Advocate for yourself no matter what. Get those answers and get education.

Find your tribe. Find your support. They’re out there. On my website, I have a Resources page with over 500 websites for all cancers.

Take care of yourself because much like when you’re flying on a plane and they tell you to put the oxygen mask on first, you can’t take care of anybody else if you don’t take care of yourself first.

Anyone who has had a cancer diagnosis needs to get some kind of mental health care to process everything. You can find a lot of help in support groups and support centers, but they’re limited and can only help you so much. If you’ve never seen a counselor or a therapist before, once you get a diagnosis, they should be next on your list of doctors to see.

You have to come to terms with your mortality. A lot of people think they’re going to live forever. You have to shift your thinking. Cancer could take you out, a car accident could take you out, or a fire could take you out. Anything could happen. You need to reevaluate your life and make better choices of what’s important to you and your closest loved ones.

Michelle R.

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Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.


Michelle R. feature profile
Thank you for sharing your story, Michelle!

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More Bladder Cancer Stories

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Symptoms: Intermittent pain in the gut and burning sesnsation

Treatments: Chemotherapy (dd-MVAC), surgery (cystectomy)
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Michelle R., Recurrent Bladder Cancer, Stage 1



Symptoms: Irregular occurrences of seeing streaks of blood in urine, specific type of pain when bladder is full, unexplained weight loss, urinary urgency, malaise, fatigue
Treatments: Chemotherapy, surgery (TURBT: transurethral resection of bladder tumor)

Margo W., Bladder Cancer, Stage 1



Symptom: Blood in urine

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Symptom: Blood in urine
Treatments: BCG immunotherapy, surgery (cystectomy)
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Karen R., Urothelial Cancer, Stage 1



Symptom: Recurrent UTIs

Treatment: BCG immunotherapy

Categories
Adriamycin (doxorubicin) Breast Cancer Chemotherapy Colon Colorectal Doxil (doxorubicin) Eloxatin (oxaliplatin) Hormone Therapies Patient Stories Radiation Therapy Surgery Taxol (paclitaxel) Treatments Xeloda (capecitabine)

Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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. 2 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. 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)

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


Thank you for sharing your story, Lauren!

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Nina M., Metastatic Breast Cancer



Symptoms: Hardening under the armpit, lump & dimpling in the left breast

Treatments: Chemotherapy, surgery (lumpectomy), radiotherapy, hormone-blocking medication, targeted therapy
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Symptom: Four lumps on the side of the left breast

Treatments: Chemotherapy (carboplatin, paclitaxel doxorubicin, surgery (double mastectomy), radiation (proton therapy), PARP inhibitors
Brittney shares her stage 4 breast cancer story
Brittney B., Metastatic Breast Cancer
Symptoms: Lump in the right breast, inverted nipple

Treatments: Surgery, chemotherapy, immunotherapy, radiation
Bethany W. feature profile

Bethany W., Metastatic Breast Cancer



Symptom: Lower back pain
Treatments: Chemotherapy, radiation, maintenance treatment

Categories
Chemotherapy Diffuse Large B-Cell (DLBCL) Metastatic Non-Hodgkin Lymphoma Patient Stories prednisone R-CHOP Steroids Surgery Treatments

Mike’s Stage 4 Diffuse Large B-Cell Lymphoma (DLBCL) Story

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. 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
  • Treatments:
    • Surgery: removal of spinal tumor
    • Chemotherapy: R-CHOP (cylophosphamide, doxorubicin, vincristine, rituximab, prednisone)

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



Everybody has a different journey.

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 to Walmart, 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 to the 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.

You know it is your game to play.

Thank you for sharing your story, Mike!

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Stephanie Chuang



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Categories
Chemotherapy Endometrial Cancer Patient Stories Radiation Therapy Surgery Treatments Uterine

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Lexie’s High-Grade Endometrial Stromal Sarcoma Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Lexie W. feature profile

Lexie’s life changed dramatically when she was diagnosed with cancer three times. Her symptoms started with a prolonged period and severe cramps. Initially misdiagnosed, she eventually discovered she had cancer. The first treatment involved surgery, but subsequent relapses required more aggressive treatments.

During her first relapse, severe cramps led to the discovery of a softball-sized mass. She underwent surgery and chemotherapy, maintaining a positive attitude with support from her husband and family.

Later, respiratory issues revealed another mass in her chest. Proton beam radiation followed by chemotherapy initially seemed successful, but cancer spread to her lung lining, necessitating further treatments.

Throughout her journey, Lexie faced severe side effects from chemotherapy. She learned the importance of self-advocacy in medical care and relied on her strong support system and medical team. She focuses on controlling what she can, finding silver linings, and encouraging others to seek support.


Karyopharm Therapeutics logo

Thank you to Karyopharm for its 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.


  • Name: Lexie W.
  • Diagnosis:
    • High-Grade Endometrial Stromal Sarcoma
  • Symptoms:
    • Prolonged period
    • Severe cramps
    • Difficulty breathing
  • Treatment:
    • Surgery
    • Chemotherapy
    • Proton beam therapy
Lexie W.


I had a period that lasted over a month. I kept thinking that it was normal and that it was going to stop.

Introduction

I live in Scottsdale, Arizona, but I grew up in a small town in Minnesota.

I love going to different coffee shops and checking out the vibe and the coffee. I love hiking and being out in nature during the day. I did a lot of camping growing up. That was usually our vacation.

I love to travel and go to different places. It’s fun to see different cultures. I love to spend time with friends and family.

I have been diagnosed with cancer three times. What I have now is high-grade endometrial stromal sarcoma. It was low-grade at first, then it became high-grade.

Lexie W.
Lexie W.

Initial Cancer Diagnosis

One time, I experienced intense cramps but I knew they weren’t period cramps. I know my body very well and I knew that something was off, so I went to the emergency room. They gave me Midol and sent me home.

Another time, I had a period that lasted over a month. I kept thinking that it was normal and that it was going to stop, but my sister told me I needed to get checked so she scheduled an appointment for me.

I was eventually diagnosed with low-grade endometrial cancer, but I didn’t do chemotherapy or radiation. I felt I got off a little easier, having to undergo surgeries and then continue living my life.

A doctor came in and said, ‘You’ve got a huge mass the size of a softball that’s pushing up on stuff.’ I asked, ‘When are we going to find out if it’s cancer?’ He said, ‘It is.’

First Relapse

Symptoms

I experienced very similar symptoms and I was still being so ignorant of it. I didn’t think of cancer, which was crazy to me, but that’s how I live my life. I don’t try to allow those thoughts to come in too often.

At the time, my husband was traveling for work. I was walking with a friend and I was a little bit hunched over because I was having a lot of intense cramp-like feelings. I kept telling her I thought it was my appendix, thinking it was appendicitis.

I went to the ER and that was pretty tough because I was by myself. After they ran all the tests, a doctor came in and said, “You’ve got a huge mass the size of a softball that’s pushing up on stuff.” I asked, “When are we going to find out if it’s cancer?” He said, “It is. We can tell,” so that was tough.

Lexie W.
Lexie W.
Reaction to the Relapse

I was overwhelmed, but I never felt like my life was over. I thought it was another fight I was going to have to fight. It was more about putting my game face on. It was another obstacle in front of me that I had to conquer.

It was tough to make the phone call to my husband. I told him I was going to the ER and he knew the entire time what it could be. When I called, I could barely get words out. He said, “I’m on my way.” It’s so good to have such a good support system, so that was tough, but we got through it.

They all came to the same conclusion. Chemotherapy was necessary knowing that I already had cancer once before.

Treatment

I ended up going through surgery to get the mass out and then I had to decide whether I was going to do chemotherapy or not to make sure that we got rid of all cancer cells.

Make sure that you get a second opinion so that you’re as informed as possible before making a treatment decision. I ended up getting the opinion of a few different doctors. I gave them all of my test results and they all came to the same conclusion. Chemotherapy was necessary knowing that I already had cancer once before and it came back and is now high-grade.

Lexie W.
Lexie W.
Side Effects of Chemotherapy

Chemotherapy was intense. I also got pneumonia during treatment. There was one point when I was lying on the floor and, in that moment, I felt like my life was over because I was so done that I could not fight anymore.

Chemotherapy was brutal on me. The fatigue was pretty intense. The brain fog was pretty bad too. I had hair loss, but it never mattered to me, which is crazy because I was so superficial growing up.

Since the first time I got cancer, one of the silver linings is my priorities changed. It wasn’t about making sure my hair or makeup was perfect. I couldn’t care less. There was hair loss, but I never cared about wearing a wig. The only time I wear a head cover is to protect myself from the sun, but otherwise, it’s part of my journey, so I go with it.

I was exhausted. I’ve already done this twice. I didn’t want to do this again, but I wasn’t ready to give up.

Second Relapse

Symptoms

I’ve gone through cancer twice and I thought a cold was going to knock me out because, at the time, I couldn’t breathe very well and I was fatigued. I thought it was COVID.

I went to the ER because I also couldn’t breathe. They ran a test and said I didn’t have COVID. They ran a few tests to make sure and did a scan. The doctor came in and said, “You have a big mass in your chest that is pushing up on all of the important tubes that help you breathe.”

Lexie W.
Lexie W.
Treatment Decision-Making

I thought that they could remove the mass and then we were good, but the mass was next to some important organs. At that moment, I was exhausted. I’ve already done this twice. I didn’t want to do this again, but I wasn’t ready to give up.

After my first relapse and going through chemotherapy, I told my family that if it happened again, we’d be waving the white flag. I couldn’t go through the treatments again. It was too much. That was a hard pill for my family to swallow because it could cut my life short.

But when I was put in the actual situation, I decided I wasn’t done yet. I still had too much to do in my life. It was difficult because I had to think through. Was this something I wanted to do? Did I want to go through the different treatment options? Is this going to affect my quality of life? That’s how I choose to make my decisions these days.

When I looked at my PET scans, it looked like everything was gone. The only thing that was showing was a little bit of red near the scar tissue.

We ended up not doing surgery. We did proton beam radiation, which is different from the traditional one. I was so grateful to be able to go to a facility that had that available because that’s not very common everywhere. It has fewer short-term and long-term side effects.

After radiation, I did three cycles of chemotherapy. The radiation seemed to work, so that was great news.

When I looked at my PET scans, it looked like everything was gone. The only thing that was showing was a little bit of red near the scar tissue. According to my radiologist and doctor, they were pretty sure it was scarring, so I should be good to go and continue to live my life. We could do a couple more rounds, but ultimately, it was my decision. I weighed the pros and cons, and I felt good that it was gone.

Lexie W.
Lexie W.

Cancer Spread

I was able to live my life normally for a couple of months, so it was a nice little reprieve from a mental health standpoint. I needed it because I was tired of fighting.

I did my follow-up PET scan a couple of months later, which showed it had spread. It’s in the lining of my lungs. I don’t say I regretted my decision, but it was the decision I made.

Treatment

I had to do a lung surgery. I’ve been doing chemotherapy. I’m cautiously optimistic. I hope that the PET scan will show that it worked because I had to make another hard decision of what type of treatment plan I wanted to go with for this next round.

I had three different options. I took some time to think. I was tired of it. I wanted to move on with my life. I went with the most aggressive options, which also had the highest risk. If the PET scan doesn’t show what I hope and believe it will show, then I don’t have a whole lot of options.

I have a decent amount of anxiety, but I’ve been raised to focus on what I can control and then let the rest go.

Having a Strong Support System

With the medical team that I have, it’s a collaboration. They keep me informed and give me all the options. If they believe an option to be better than the others, they’re going to voice their expert opinion. One thing that I like about where I go now is they have a tumor board. As we talk about self-advocacy and getting second opinions, they’ve already integrated those into their model, which is so reassuring.

If they come across unique cases that they’re not as exposed to, they bring the case to the tumor board, so they can weigh in. They bring the information back to the patient to help the patient make an informed decision.

Because of that collaboration, I don’t feel like I’m on an island. All of my family members rally together during these times. They try to get as much information as they can and filter what’s valuable to help me make an informed decision. It’s a lot of weight to be the sole decider, but I guess that’s part of life. We have to make decisions all the time. How do you do that successfully? It’s a team effort.

Lexie W.
Lexie W.

Living Life

I’m like a duck where I’m calm on top of the water and swimming for my life underneath. I have a decent amount of anxiety, but I’ve been raised to focus on what I can control and then let the rest go.

There’s a lot in my life that I cannot control and this is one of those things. I remind myself that I’m doing everything that I can and I have to be okay with it. Then let the rest be what it is.

I didn’t understand that I could advocate for myself. You know what’s best for you, so it’s important to push for what you know is right.

Importance of Self-Advocacy

Self-advocacy is so important to be able to make an informed decision. You can’t do that without getting all of the information and advocating for what you feel is right. The reason why I think it’s so important to push for what you feel is right is because of my situation. They kept telling me that it was just period cramps when I knew it wasn’t, but they’re the experts and so I felt a little bit defeated and didn’t necessarily know what direction to take.

I needed my sister to advocate for me because I didn’t know what self-advocacy was. It was my first time going through cancer, so I didn’t understand that I could advocate for myself. You know what’s best for you, so it’s important to push for what you know is right.

Lexie W.
Lexie W.

Words of Advice

Live positively because the opposite sounds so miserable. Of course, we all have our moments. I’m not saying I’m positive 24/7; that’s unrealistic. I have days when I feel down. You need to have more up days than down days. I choose to be positive.

Go big or go home because life is too short. Take full advantage of your situation and find the silver lining.

You’re not alone. I don’t want people to ever feel like they’re alone. There are communities and resources out there to help you.

Life is too short. Take full advantage of your situation and find the silver lining.


Karyopharm Therapeutics logo

Special thanks again to Karyopharm for its support of our independent patient education content. The Patient Story retains full editorial control.


Lexie W. feature profile
Thank you for sharing your story, Lexie!

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Share your story, too!


More Endometrial Cancer Stories


Categories
Avastin (bevacizumab) CAPOX (capecitabine, oxaliplatin) Chemotherapy Colectomy Colorectal CRC Immunotherapy Keytruda (pembrolizumab) Patient Stories Surgery Treatments

Nick’s Stage 4A Colorectal Cancer Story

Nick’s Stage 4A Colorectal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Nick S. feature profile

Nick’s symptoms began a year or two before his diagnosis, including changes in bowel habits, size, and consistency, blood in the stool, and abdominal pain, which he initially attributed to aging or irritable bowel syndrome. After experiencing fatigue and escalating pain, he went to the ER where he was diagnosed with diverticulitis and sepsis. Despite initial treatment, he required a laparoscopic washout due to a perforated colon and subsequent complications, including an abscess.

During a follow-up colonoscopy, doctors found a mass, which was later confirmed as adenocarcinoma. He underwent a sigmoid resection, removing part of his colon. While clear margins were achieved, 19 of 49 lymph nodes tested positive for cancer.

Nick began CAPOX chemotherapy, experiencing severe side effects like fatigue, neuropathy, and an acne rash due to the addition of Avastin (bevacizumab). When they noticed an elevation in his tumor marker and growth in his lymph nodes, he was switched to Keytruda (pembrolizumab), an immunotherapy, to reduce the cancer to a manageable level.

Nick emphasizes the importance of mental health support to manage anxiety. He advises listening to your body, advocating for yourself, and using support systems. He encourages seeking thorough medical evaluation for unexplained symptoms and finding strength in support groups, hobbies, and loved ones, stressing perseverance and finding reasons to keep fighting.


  • Name: Nick S.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 4A
  • Initial Symptoms:
    • Change in bowel habits, size & consistency
    • Blood in stool
    • Abdominal pain
    • Fatigue
  • Treatment:
    • Surgery: sigmoid colectomy
    • Chemotherapy: CAPOX (capecitabine & oxaliplatin),
    • Immunotherapy: bevacizumab, pembrolizumab
Nick S.

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



My symptoms started a year or two before diagnosis. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain.

Introduction

I’m a stage 4A colorectal cancer fighter. My wife and I live in Chippewa Falls, Wisconsin. We have a wonderful 28-year-old daughter.

I’m a full-time firefighter and critical care paramedic. I’ve been doing firefighting for about 16 years and paramedicine for about 13 of those 16 years.

Nick S.
Nick S.

Pre-diagnosis

Initial Symptoms

My symptoms started a year or two before diagnosis with stage 4A colorectal cancer. It started with a change in bowel habits, size, consistency, some blood in the stool, and abdominal pain. I had some acid reflux type of reactions that my wife and I chalked up to aging and not being as healthy as I could be. My wife has irritable bowel syndrome and I thought some of it was IBS because some foods would trigger some reactions in me.

I was working full-time for the department for about a decade and a couple of years later, I decided to change over to a neighboring department. For these jobs, we have to pass a physical agility test.

I have been working by myself daily. I was in pretty good shape. The test is a pretty rigorous test to be able to do what we do. I was 48. I was doing this at an older age than the 20-year-olds they were usually hiring.

I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away.

A couple of months later, we responded to a house fire. At some point, my battalion chief pulled me off the line and said, “You look wiped out. I’m going to sit you out for a little bit to catch your breath.” I felt a little tired, but, again, I was getting a little older.

I sat out and went back in for another round. This time, the chief was on the scene and said, “Nick, take your gear off. You don’t look good. Go back to the ambulance. You’re going to be doing rehab, making sure everyone else is doing okay, but we don’t want you going back in.” I thought something was weird.

I called my wife to meet me in the ER. I didn’t know what was going on. I’ve got bad abdominal pain. I haven’t slept. I’m going to go get checked out.

Nick S.
Nick S.
Diverticulitis & Sepsis

I was diagnosed with diverticulitis and sepsis, so they started me on antibiotics right away. They weren’t sure if surgery was going to be necessary, but they transferred me to another hospital. At that point, I was stable.

When I got transferred, I met with a thoracic surgeon and started to realize that things were serious. He said, “We’re not going to go in right away. We’re going to keep an eye on you tonight. Hopefully, things will subside with some more antibiotics and some steroids, if we have to. But we’re going to keep an eye on you and evaluate you. We’d like to avoid surgery.”

The next day, when they were getting my vitals, the nurses said, “We see you’re slated for surgery.” That turned into a laparoscopic washout. They found that I had a perforated colon in the sigmoid area, the area right before the rectum, but that had healed itself.

All of a sudden, I heard the doctors say, ‘That’s not good.’ I remember seeing a black mass on the screen.

They went in through a couple of small incisions, washed everything out to make sure there was no fecal matter, and stitched me back up. I had a couple of surgical drains. I was in the hospital for five or six days and then I was sent home to heal.

I ended up getting readmitted a couple of days later because I had some drainage coming from my drain sites. After a CT scan, they found I had an abscess. I believe E coli was one of the culprits. There was something else too, so they needed heavy-hitter antibiotics.

After another two weeks of antibiotics, the PICC line was removed. I met with the surgeon and everything was looking great. He said, “Let’s do a follow-up colonoscopy to check how the diverticulitis is.”

Nick S.
Nick S.
Colonoscopy

I wanted to sleep through it. I was joking with them and we were all relaxed when all of a sudden, I heard the doctors say, “That’s not good.” I remember seeing a black mass on the screen. He tried advancing past it and I said, “Ow,” but I didn’t feel it. I said “ow” instinctively. He said, “We can’t get past this mass. We’re going to pull out.” The tone changed. You could have heard a needle drop in that procedure room.

They wheeled me back into the recovery room where my wife was waiting. On the way there, one of the nurses handed me a polished stone that had the word “hope” stamped on it. I didn’t think that choked me up, but I carry it wherever I go. In hindsight, it meant a lot and drove home the seriousness of the situation. We didn’t know exactly what was going on, but something wasn’t right. I have enough medical training and field experience to read the room and know it wasn’t good.

The doctor eventually came back in and said they couldn’t diagnose it yet. They took a small sample to send off for testing to confirm what they thought it was. He wouldn’t say whether it was cancer or not.

The good news was they got the tumor with clear margins. They felt it hadn’t spread far…

Diagnosis

Getting the Biopsy Results

I was waiting for the results at home. When I finally got the notification on my phone, I checked it and it said adenocarcinoma. Now we know what we’re dealing with. It’s cancer of some sort. I never thought about it as a possibility.

Treatment

Sigmoid Colectomy

During the colonoscopy, he said we were going to have surgery because what it was had to come out. He referred me to surgery right away. Luckily, it was the same surgeon who performed my earlier surgery who I trusted with my life. 

I met with him about a week later. They were going to do an exploratory surgery until they knew exactly what it was in there and then do their thing.

Nick S.
Nick S.

I remember being in the room when my mother-in-law came out too. My wife was there, of course. They wheeled me in, put in the IVs, and told me to start counting back from 100. I don’t think I hit 95. Hours later, I woke up in my hospital room with a slightly sore throat. They performed a sigmoid resection. I can’t remember how much of my colon they took out, but I didn’t require an ostomy, thankfully. They were able to resect it and reconnect it right away.

The good news was they got the tumor with clear margins. They felt it hadn’t spread far, at least in the tissue of the colon. But the surgeon sampled some lymph nodes right next to the tumor site. They took out 49 and 19 of them tested positive for cancer.

I stayed positive. The whole reason I’m in this fight is my family.

CAPOX Chemotherapy

At that point, I was referred to oncology. I met with my oncologist. His nurse was a former ER nurse who I was familiar with and seeing a familiar face went a long long way.

He explained what he planned on doing based on the CT scans. They saw some inflammation in other lymph nodes and they weren’t sure if that was post-surgical. They wanted to do another CT scan to check, but they were happy about the margins being clear. I was staged at 3C then. It metastasized a little bit past the point of origin but not very far.

The first day of chemo was going to include labs and a CT scan to see where we were at. The plan was to do CAPOX: capecitabine, an oral medication, and oxaliplatin, an IV medication. I would do the oral chemo for two weeks and then on the third week, I would go in for the IV chemo. They would do labs on those days to make sure everything was okay.

Nick S.
Nick S.

Unfortunately, the doctor didn’t like what he saw on the CT. He wanted to get a little more defined imaging, so he set me up for a PET scan and delayed the chemo. A couple of days later, we came back to start chemo again and get the PET scan read.

The doctor confirmed that it had spread to the lymph nodes in the abdominal area, along my aorta, and up to my left shoulder. It had spread a lot further than we thought it had.

I felt like every time we made a plan to move forward, we were getting kicked back a couple of steps, but I stayed positive. The whole reason I’m in this fight is my family. I believe that someday, this cancer will get me, but I’m not going down without a fight. I’m stubborn, so it’s going to be a long fight. I won’t go down without swinging.

I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.

Side Effects of CAPOX Chemotherapy

Chemo wasn’t fun. It knocks you out. I felt fatigued on the first day. For probably a week and a half, when you start getting the infusion, you can’t drink cold drinks. It felt like swallowing glass shards. A lot of fatigue and neuropathy kicked in.

I didn’t like being out in the cold and I love ice fishing. You’ll catch me outside at -20°F on a normal day, but with chemo, not a chance. I had to be bundled all the time.

My eyes were always drying out, so they hurt a lot. I had insomnia, joint pain, and muscle pain.

They added Avastin (bevacizumab), which is an immunotherapy, to my chemo routine. That caused a bad acne rash on my back from the waistline up to my neck. The doctor had never seen nor heard of it, but we can only attribute it to Avastin.

Nick S.
Nick S.

Working While in Treatment

I was able to go back to work full-time as a firefighter. I have a four-day weekend so I tried to time my infusion, so I had a couple of days to recover post-infusion and feel somewhat human before returning to work.

My work was very accommodating. We’re firefighters, so we don’t sleep all day, but the chief said if I needed to rest, I could go to the dorm, which I appreciate. I never took him up on it. I tried to stay with my brothers and sisters training or doing calls, and that worked great.

I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.

Switching to Immunotherapy

The initial plan was for six months or eight cycles of chemo and Avastin. Unfortunately, because of the restaging, I was going to be on treatment for the rest of my life. I might get some time off if we get no evidence of disease at any point, but it will come back at some point and I’ll have to go back on treatment.

My tumor marker was through the roof when this all started and it was dropping with chemo. We were seeing shrinkage in the lymph nodes. Chemo sucks, but it’s doing what it’s doing, so we stayed very positive.

When we got to cycle six, we noticed my CEA was going up a little bit. We were doing CT scans every three months and we noticed some growth in the lymph nodes. The doctor said, “We’re going to stop the chemo. It’s not working. You can only receive so much oxaliplatin before it becomes completely ineffective. This saves us a couple of cycles where if we need to go back to it, we can go back to it. We’re going to switch over to an immunotherapy called Keytruda (pembrolizumab).”

Nick S.
Nick S.

The side effects of immunotherapy are supposed to be much less than chemo and I’m all for that. I switched from chemotherapy to immunotherapy in August 2023. I still have very slight neuropathy every now and then in my toes and my fingertips. Nothing debilitating but a reminder that I was on chemo at one point and that probably won’t get any better or any worse, hopefully.

Keytruda is a half-hour infusion. Side effects are minimal. Between cycles two and three, while we were camping, I noticed that my resting heart rate was higher than it should be. I was not exercising as much and a little out of shape, but I shouldn’t have a resting heart rate of 130-140 beats a minute. I was sweating a lot without doing anything, so I couldn’t figure it out. I talked to the oncologist and they ran some thyroid tests.

One of the known side effects of Keytruda is thyroid burn. It’ll cause hyperthyroidism until the thyroid burns out and then it’ll cause hypothyroidism.

The support of my family, my work family, and my friends is what gets me through this.

Treatment Plan

We want to do Keytruda for 18 more months. It’s a two-year plan. We’ll see what it does and go from there. Hopefully, the response brings everything down to normal levels, I won’t have evidence of disease, and I can ride that out for a while.

Fingers crossed, maybe Keytruda is the cure for colon cancer, but realistically, I don’t think so. I think it’ll be a lifetime battle, but it’s going to be a long life. The support of my family, my work family, and my friends is what gets me through this.

Nick S.
Nick S.

Managing Scanxiety

As a paramedic, I’ve dealt with patients with panic attacks and anxiety. Anxiety’s a real thing. A lot of times, it doesn’t seem like it with the patients you’re dealing with, but now that I’m put in that position, it’s a real thing. I’ve dealt with it even before cancer through another set of unfortunate circumstances and luckily, I have a great support group in place.

We see a lot of things as paramedics and firefighters, so after a while, you realize things aren’t normal. I had to start paying closer attention to my mental health. I started seeing a therapist and she’s great. She taught me how to deal with stress, anxiety, and my feelings.

What we go through as cancer patients is not something most people go through nor is it something they understand.

Stay strong and recognize that the stress is real. What we go through as cancer patients is not something most people go through nor is it something they understand. Take a deep breath. Listen to what your mind and body are telling you.

Your feelings are valid. Don’t try to brush it off and try to be strong by pushing your way through it. Rely on your support team. If you have a therapist, talk to that therapist.

Most oncology teams come with a social worker. Use that resource. Rely on your family for strength. Tell your spouse what you’re feeling even when you don’t want to. Sometimes talking about it gets it out there and puts it away, as opposed to it weighing you down.

What helps me is retreating home, spending time with family, or staying busy with work. Rely on your hobbies if you have any. If you don’t, find some. I’m a big fisherman. I love fishing. You could put me on a lake and even if I couldn’t catch a fish for days, I would be in my happy place. Find something that helps you disconnect from the cancer and what you’re going through.

Nick S.
Nick S.

Words of Advice

For anyone who might be experiencing symptoms that you’re not quite sure of, listen to your body. Talk to your doctor. Advocate for yourself. If you feel something’s not right, push for tests to try and figure out what’s going on. The answer, “We don’t know what’s wrong with you,” is not acceptable. Push to find answers.

For cancer warriors who are going through this, keep going. You’re not alone. There’s support beyond your family, friends, and coworkers. There are a ton of support groups online. There are social workers available. There are platforms like The Patient Story.

(For more support options, please visit one of our many partners such as Colontown or the Colon Cancer Coalition.

You’re not in this alone. Some days, it may feel like it. Some days, I get down in the dumps, but I find something to get me back up. I find a reason to keep going. There are a million reasons to keep going and even if you find just one, that’s all it takes.

Listen to your body. Talk to your doctor. Advocate for yourself.


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