Marisa’s Stage 4 Synovial Sarcoma Story

Marisa shares her experience living with stage 4 synovial sarcoma. Diagnosed initially with stage 3 in 2017, Marisa’s symptoms began in high school when she noticed a small bump on her foot. Despite consultations with podiatrists over the years, the bump was misdiagnosed as a benign cyst until after its removal in 2017. By that time, the lump had grown significantly during her pregnancy. The devastating cancer diagnosis came when her daughter was six weeks old, marking a life-changing moment.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Marisa’s treatment included chemotherapy, a below-knee amputation in 2017, and multiple surgeries for lung metastases, starting in 2020. She underwent four pulmonary wedge resections, a segmentectomy, and later, radiation therapy to target residual cancer. Unfortunately, the cancer became more aggressive, spreading to her bones and lungs by early 2023. Despite numerous treatments, including 27 lung radiation sessions and systemic chemotherapy, Marisa remains optimistic and continues to monitor her health closely.

Mentally and emotionally, the impact of cancer has been profound. Marisa finds it challenging to balance parenting, work, and being a stage 4 cancer patient. She’s candid about the toll it takes on her and her family, especially explaining her illness to her young daughter. However, Marisa has chosen to focus on small joys—mundane daily tasks and moments with loved ones that now hold deeper meaning.

Marisa emphasizes the importance of self-advocacy in health care, urging others to trust their instincts and pursue answers when something feels wrong. She shares her story to provide hope to others battling sarcoma or cancer. She aims to raise awareness about the disease and inspire others with her determination to live fully, even while managing ongoing health challenges. Her message is clear: life with stage 4 cancer is not the end—it’s an opportunity to cherish each moment and look forward to advancements in medical science.

Name: Marisa C.
Age at Diagnosis:
- 24
Diagnosis:
- Synovial Sarcoma
Staging:
- stage 3 (2017)
- Stage 4 (2021)
Symptom:
- A small bump on the foot (stable for years, then grew during pregnancy), pain when pressed, difficulty wearing closed shoes
Treatments:
- Surgeries: below-knee amputation, pulmonary wedge resections, and segmentectomy
- Chemotherapy
- Radiation: lungs and hip

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, Marisa!

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More Synovial Sarcoma Stories

Kara L., Synovial Sarcoma, Stage 1B

Symptoms: Pain behind left knee, needle-like sensation in left foot
Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions)
...

Jillian J., Synovial Sarcoma, Stage 3

Symptom: Pain in leg for over 15 years
Treatments: Surgeries (tumor resection, thoracotomy)
...

Marisa C., Synovial Sarcoma, Stage 4

Symptom: Small bump on the foot (stable for years, then grew during pregnancy), pain when pressed

Treatments: Surgeries (below-knee amputation, pulmonary wedge resections, segmentectomy), chemotherapy, radiation (lungs & hip)
...

Angela’s Stage 4 Leiomyosarcoma Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Angela J., who has been diagnosed with uterine leiomyosarcoma, shares her experiences and challenges related to her illness. She provides a detailed account of her journey from the onset of symptoms to the current state of her health.

Angela describes how she first started experiencing irregular menstrual cycles in 2017. Over time, these cycles became progressively worse, accompanied by increased pain, heavier bleeding, and other symptoms. She sought medical help and was put on hormone treatments to manage the symptoms. Additionally, she underwent a uterine ablation in hopes of reducing the bleeding and controlling her condition. However, despite these efforts, the symptoms persisted and worsened over time.

In 2023, Angela’s condition deteriorated, leading to severe pain and significant weight gain. An emergency situation ensued, which required her to undergo surgery. It was only then that the doctors discovered that she had uterine leiomyosarcoma, a rare and aggressive form of cancer. This diagnosis marked a turning point in Angela’s journey, leading to a shift in treatment and care.

Following the diagnosis, Angela underwent chemotherapy. The chemotherapy regimen brought its own set of challenges, including difficult side effects. Despite these hardships, she received the positive news that her cancer had stabilized and is not currently progressing.

Angela shares her experience with the ongoing adjustments to her life post-diagnosis. She is currently on disability retirement, which has allowed her to focus more on personal interests and passions, such as painting, arts and crafts, and spending time with her grandchildren. She finds solace and joy in these creative activities, as well as in writing a book, which has become another outlet for her emotions and reflections during this period.

Angela expresses a sense of resilience and hope as she navigates her new reality. She expresses gratitude for her current stable condition, acknowledging the difficulties she has faced but also the strength she has found in creativity and family support.

Name:
- Angela J.
Diagnosis:
- Uterine leiomyosarcoma
Age at Diagnosis:
- 46
Staging:
- Stage 4
Initial Symptoms:
- Pain in the left hip, thigh, back, and abdominal area
- Difficulty passing stools, alternating with diarrhea
- Nausea
- Swollen abdomen and stomach
- Feeling full quickly
- Rapid weight gain
Treatment:
- Surgery (hysterectomy, partial salpingectomy)
- Chemotherapy