Unique is for Unicorn: When Cancer is Rare

Unique forms of cancer are what I categorize as "rare." When I was first diagnosed, the thought of it being rare hadn't crossed my mind. All of the research I had done featured the same types of ovarian cancer: Epithelial, Germ Cell, and Stromal. I happen to be in a category, where about 2 to 5 percent of women diagnosed with ovarian cancer, have a rare form.

My diagnosis seems promising at first

After my total abdominal hysterectomy, my first procedure, we were told there was a lot of "mucus." But from what the oncologist could see, the cancer was a low-grade type. I am no expert in the grade types, but low-grade sounded promising. The final diagnosis was not detected on the ultrasound or CT scan; it was determined once the pathology was returned.

What are the odds?

What are the odds that I would end up with a cancer that is rare? I am not sure if there is an answer to this question. I remember getting a call from my oncologist after the pathology returned, thinking, “of course”. Looking back on it, I find it funny but interesting at the same time. Honestly, it just made my journey even more unique.

Strangely, during the call with the oncologist, the provider did not advise of the actual type of cancer. It was determined during my second opinion that I had a rare form of ovarian cancer: ovarian mucinous carcinoma arising in a teratoma with pseudomyxoma peritonei.

A blessing in disguise

Because of the rare form, I was referred to another oncologist for a second opinion. A huge positive is that I did not have to find another treatment team for my case. I also did not request a second opinion. I will always give major kudos to the physician for taking initiative and consulting another physician for my case. My thought process was always positive because I knew I would have more than one opinion on my case. Also, having a second opinion was a reminder that I would be allowed to ask any additional questions. And luckily the new treatment team had experience with similar cases to mine.

During my visit with the new team, they ordered new labs, CT scan, colonoscopy, and EGD. The purpose was to rule out the primary source being elsewhere. The orders alone showed me that I was in good hands. After the team provided me with statistics, a treatment plan, and a good amount of hope, I was ready to take on the journey.

Perhaps, having a unique cancer was a blessing in disguise.

Find people who will support you

At the beginning of my journey, I joined a Facebook group and advised the ladies of my treatment plan. I was met with not so nice comments.

However, I found another group for women with this unique form of ovarian cancer. I was met with a warm welcome and I quickly realized that I was not alone. Was it interesting learning that I had a rare form, absolutely! But I was not afraid because I had a great treatment team on my case that welcomed any concerns that I had.

Are you living with a rare form of ovarian cancer? Tell us about your diagnosis experience in the comments!