Vandana Mahajan, a palliative care counselor, was diagnosed with thyroid cancer 15 years ago. She lost both her thyroid and parathyroid glands after cancer surgeries. In discussion with PatientsEngage, she reflects on her challenging journey and how her cancer diagnosis ultimately led her to find her identity.
What were the initial symptoms that you experienced, and how did that lead to the diagnosis you received?
In 2009, at the age of 36, I was diagnosed with thyroid cancer. Two years prior to that, it was initially diagnosed as an allergy by doctors. But I was sluggish, had digestion issues, and had pain in my right leg. Once, I developed severe diarrhea that persisted for 21 days despite medications, and the reason was not known. During this time, I noticed a big lump on my neck which was diagnosed as a goitre. I was advised to go for a biopsy. After FNAC and excisional biopsy, a 4 cm nodule in my left thyroid was discovered. I underwent my first surgery on 29 June. Post-surgery, I was informed that there was damage to my vocal cords, resulting in voice fatigue and inability to speak for a long period. Subsequently, I underwent my second surgery for Follicular carcinoma. I lost my voice entirely during that time and was experiencing extreme stiffness in my body. It was very terrifying experience.
Additionally, due to the involvement of parathyroid gland, my body stopped producing calcium. To maintain calcium balance, I had to take 8 calcitriol tablets daily. Unfortunately, I was not referred to an Endocrinologist for consultation. After experiencing all these, I firmly believe that it is crucial to provide proper discharge instructions to every patients.
Was any other treatment advised after surgery?
Yes, I went through radioactive ablation. In thyroid cancer, when cells are detected in the body, I was not given thyroid supplements, as TSH had to be high for i31 diagnostic test. I experienced sluggishness, facial swelling and digestion issues. Before 2 days of i31 scan procedure, I had to ingest radioactive Iodine capsule and stay isolated in room alone. The scan lasted for 35 minutes. Additionally, I had to consume a heavy dose of radioactive Iodine for 4 days without any human contact. I was not informed about what to expect during this time and it was emotionally challenging for me. Although chemotherapy was not part of my treatment plan, ingesting radioactive Iodine and staying in an isolated room were very challenging for me.
More details in the conversation above.
How long did the entire process of diagnosis last?
It continued for 5 years. If my TSH levels rose, my bodily functions were about to shut down. So without Thyronorm it was very tough for me. I experienced loss of appetite, hair loss and irregularity in menstrual cycle. I was emotionally broken as there was no one to provide psychological support during this phase. I feel family members and caregivers should understand the importance of this thing.
What are the various aspects you went through?
After losing my thyroid and parathyroid gland, I understood the importance of it. I had developed uncontrollable asthma, bone pains, poor digestion and struggled to sleep. I experienced brain fog, concentration issues and challenges with my thought process. Then I met a palliative and pain physician and this consultation improved my quality of life. It supported me emotionally too. Again, I do wish I had been provided guidance earlier.
Were you advised on fertility issues or menopause?
Certainly, at age of 36, I feel it is very important question to be addressed. But nobody told me about this and there was no conversation regarding the relationship between me and my husband. At the age of 40, I experienced peri menopause and underwent a biopsy of the uterus. After 4 years due to erratic bleeding and adenomyosis, I underwent hysterectomy.
Despite oral supplements and iron injections, my hemoglobin level was very low and nothing seemed to help. I was experiencing continuous asthmatic attacks and developed ectopic heartbeats. During that time, I had developed low magnesium levels. I had to take 14 pills every day, including Calcium, Magnesium, Thyronorm, Diuretic, Opioid and a medicine (provit) to clear my bowel.
Did you undergo voice therapy?
Yes I did. I was told that if I spoke, I would never speak again. I had to carry a calcium injection with me. If I speak for long, I feel a tug in my voice and I get tired easily. Even today, it becomes hoarse and I can’t raise my voice.
How did you put together a multidisciplinary team to support you?
Yes, everyone’s cancer journey is difficult. I visited the Nuclear medicine department and received consultation from an Oncosurgeon. Unfortunately, it did not help me to improve my quality of life. I decided to go for a Psychiatrist consultation, as I felt emotionally broken at that time. After undergoing psychological treatment for 2 years, I gradually regained myself back. I find myself fortunate enough to have had a good team of doctors - Endocrinologists, Pulmonologists, and Gastroenterologists supporting me.
How did you decide what you wanted to do in life? How do you keep yourself motivated?
Cancer has given me a purpose. With the help of a friend, I started volunteering and joined Tata Memorial Hospital to raise awareness. During the sixth year after cancer diagnosis, I enrolled in a post-graduation programme in counseling with specialization in palliative care. Feeling a strong need for psychological support and recognizing its importance during this time, I made it my mission to provide emotional support to cancer patients and ensure that no one should walk alone in this tough phase of their lives. Today I am a palliative care counsellor and patient advocate.
