When one receives a diagnosis of cancer, it is very common to seek out support groups. With a rare disease such as medullary thyroid cancer (MTC), finding this support can be difficult. After I was diagnosed, I scoured the internet to find something that would resemble a support group for my disease.
It took 6 months to finally connect with the Facebook group that eventually led me to engage with many MTC patients. This group became the best place to discover the newest research on MTC.
More than 2 years after my diagnosis, I met in person a “meddie” (MTC patient) for the first time. The only reason this was possible was due to both of us being young when diagnosed. We were both referred to the “Young Adults with Cancer” medical team. Within this medical community, a nurse decided to reach out to both of us to see if we would like to meet.
This nurse connected with me to see if I was willing to meet with a newly diagnosed patient. A couple of weeks later, we met at a Starbucks and started sharing our stories. Not only was this beneficial to this new patient, since she could ask me some questions as she started her journey, but it also helped me feel less lonely.
We were able to relate to each other and the fears associated with being diagnosed with cancer, let alone at such a young age. This connection was very helpful for my mental health as well.
I am grateful to the nurse who made this introduction. Without her, I probably would never have met other MTC patients living within driving distance of me.
Read more about medullary thyroid carcinoma
Patients with a rare disease often feel alone and like no one understands them. Yet there is also no real way for patients to connect to each other unless they by chance come across each other on social media, or as in our case, a medical professional reaches out.
I would like to encourage health care providers to connect MTC patients with each other. They most likely feel just like I did, alone and scared and misunderstood. As much as doctors or psychologists are helpful, no one can understand a cancer patient as well as another cancer patient. This is even more true with rare cancer such as MTC.
To health care providers treating MTC patients, be the person your patient needs. Be the advocate to connect your patients to each other. This will mean so much to them. It will help their mental health and physical outlook.