Melinda’s Stage 4 Rare Adrenal Cancer Story
Interviewed by: Taylor Scheib
Edited by: Katrina Villareal
Melinda was diagnosed with stage 4 adrenal cancer in November 2021. Her story began with a confusing array of symptoms that baffled doctors for months before her cancer diagnosis.
In July 2021, Melinda experienced swelling in her face, stomach, hands, and feet, which she initially attributed to allergies. She developed unexplained high blood pressure and also noticed unusual symptoms like acne on her back and chest, an itchy and tingling tongue, burning and discharging eyes, hair loss on her head, and hair growth on her upper lip and chin. Additionally, she suffered from bloating, stomach pain, food aversions, easy bruising, slow healing, and eventually missed her periods. Despite these alarming symptoms, her doctors in various specialties struggled to pinpoint the cause.
In October 2021, after months of frustration, Melinda saw an allergist who, unlike others, took the time to review her medical history and symptoms thoroughly. Concerned about the swelling in her stomach, the allergist ordered a scan, which revealed a large tumor on her right adrenal gland. Initially thought to be a non-malignant pheochromocytoma, further tests at the Mayo Clinic revealed it was adrenocortical carcinoma, a rare and aggressive form of cancer affecting just one in a million people annually in the U.S.
This diagnosis brought Melinda a mix of emotions. The confirmation of cancer was terrifying, but she felt relieved to finally have an explanation for her symptoms. She quickly flew to the Mayo Clinic, where a team of seven surgeons successfully removed a 24 cm tumor that weighed 3.2 pounds and had wrapped around her vena cava.
After surgery, Melinda was prescribed EDP-M (etoposide, cisplatin, doxorubicin, and mitotane) and later underwent stereotactic body radiation therapy (SBRT). Despite initial treatments, her cancer metastasized to her liver, lungs, spine, and hips. Melinda describes the difficult side effects of treatments and also faced complications that required additional medical interventions.
After finding that EDP-M was ineffective, Melinda’s oncologist switched her to a combination of Keytruda (pembrolizumab) and Lenvima (lenvatinib), which started showing positive results in reducing her tumors. She highlights the importance of consulting with specialists and having a collaborative medical team, which she believes has been crucial to her progress.
Melinda reflects on the importance of self-advocacy in her health journey. Despite moments of self-doubt, she was persistent in seeking answers. She emphasizes the value of being thorough, organized, and proactive in medical situations. Melinda’s experience also highlights the role of complementary therapies and the need for better access for those with chronic illnesses.
Melinda’s journey highlights the importance of self-advocacy, mental health, and the support system during cancer treatment. Her experience as an LGBTQ+ patient underscores the need for more inclusive and understanding healthcare practices. Despite the challenges, she chose not to focus on prognosis. Instead, she focused on maintaining a positive mindset and living her best life.
- Name: Melinda N.
- Age at Diagnosis:
- 32
- Diagnosis:
- Adrenocortical carcinoma (adrenal cancer)
- Staging:
- Stage 4
- Symptoms:
- Swelling in the face, stomach, hands, and feet
- High blood pressure
- Acne on back and chest
- Itchy and tingling tongue
- Burning in the eyes with discharge
- Hair loss on the head
- Hair growth on upper lip and chin
- Bloating and stomach pain
- Food aversions
- Easy bruising
- Slow healing
- Missed periods
- Treatment:
- Surgery to remove the tumor
- Chemotherapy: Lysodren (mitotane), EDP (etoposide, doxorubicin, and cisplatin)
- Radiation: Stereotactic body radiotherapy (SBRT)
- Immunotherapy: Keytruda (pembrolizumab)
- Targeted therapy: Lenvima (lenvatinib)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
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