The story of Anna

What is your diagnosis? When were you diagnosed and has your diagnosis changed since the initial diagnosis?
I was diagnosed on November 15, 2019 with a stage III pituitary gland macro-carcinoma, a very rare type of tumor that had already spread to other parts of my body before it was found. I had been experiencing extreme migraines, vision loss, and eventually, seizures, for a few months prior to my diagnosis. While I always knew I was at risk for a pituitary tumor due to having several previously diagnosed neuroendocrine disorders, close to 98% of these tumors are benign, so I never really considered that it could be cancerous. That being said, because this type of cancer is rare, it is also incredibly hard to receive early detection and treatment, unfortunately. My diagnosis did change throughout treatment, especially because there is no standard staging system for pituitary tumors. Additionally, at different points over the course of the last few years, the cancer has spread to my brain, spinal cord, blood, meninges, and bone, and twice prior to relapsing I have been considered “NED” which stands for no evidence of disease.

Prior to my cancer diagnosis, I was no stranger to rate diseases or medical issues. I was diagnosed at the age of 8 with Addison’s Disease, also known as Primary Adrenal Insufficiency, and later was diagnosed with hypothyroidism, PTSD, Raynaud’s syndrome, ulcerative colitis, and lupus.

How did your diagnosis affect social aspects of your life?
I was a 20 year old college student when I received my initial diagnosis. My priorities were that of a typical college student, “What bar are we going to this weekend?”. Many people described me as a “party girl”, and I was an incredibly social individual with plans each and every weekend. Unfortunately, my priorities quickly changed after the cancer diagnosis, and I had to grow up incredibly fast. I still try to go out and have fun with my friends from time to time, but it’s gotten increasingly harder as treatment has become more intense. I find myself cancelling plans and feeling guilty for doing so, or having to leave events early because I’m just too exhausted. I’ve lost some friends throughout the way, but I’ve also gained quite a few. I think dealing with cancer is something most 20-something year olds don’t know much about, so it was hard for the majority of my of my friends to relate to me or properly support me. I don’t blame anyone for that, as I changed quite quickly, and often find myself wishing for my old life back. At different points throughout treatment, I’ve often felt lonely or angry, wishing I could be the person I once was. I’ve spent countless nights crying alone in my bedroom and throwing myself a pity party, feeling left out, feeling depressed, feeling angry

Did you find that any relationships changed or ended in the yesss since that initial diagnosis?
In the beginning, I was flooded with texts, calls, gifts, cards. People checked in on me constantly, and not a day went by where I didn’t receive thoughts and prayers. It almost feels like the longer treatment goes on, the less people put in the effort, instead of continuing to care at the same level.  For me personally, I also felt like friends didn’t share their problems or their joys as much because they always felt like I was going through something more important.  It was hard to make them understand that just because I was dealing with something it didn’t make their problems unimportant. I’ve wanted to maintain friendships throughout the process. I’ve wanted to have those normal conversations, and I’ve grown to miss the regular phone calls and life updates I used to receive from my friends.

Initially, how did you deal with a diagnosis of a terminal/serious illness at such a young age?
I didn’t.  I don’t know if I’ll ever be strong enough to.  I never let my mind travel to the place that would think about how serious it actually was; I felt and feel like that would be extremely overwhelming.  There is no rhyme or reason that was found in my case, which also doesn’t allow me to blame my diagnosis on anything.