Ovarian Cancer and What it Means
Clear Cell Carcinoma is rare and aggresive
The cancer I’m diagnosed with is clear cell carcinoma. When I had surgery they found endometriosis. It is the strongest risk factor for clear cell carcinoma. Half to three quarters of cases are associated with origins related to endometriosis. The interesting thing is I had no symptoms of endometriosis. I never had much pelvic pain, never heavy bleeding—nothing to indicate the disease.
OCCC is rare, only making up 10-12% of cases of ovarian cancer in the United Stats. There are higher rates in Asia. OCCC is also one of the most aggressive forms of ovarian cancer, however it also is most often caught in stage I or II.
There are some mutations, which you can look up on the below sites, and these mutations make OCCC act differently than other ovarian cancers.
Commonly, the symptoms of OCCC are mistaken for other things. They include pelvic or abdominal pain, bloating or distention of the abdomen, urinary frequency, and fatigue. They’re vague things that are so common and often dismissed by doctors. Pelvic pain? Cramps, you’ll be fine. Bloating? Eat better. Urinary frequency? Well, you’re getting older. Fatigue? Work on sleep hygiene.
Interestingly, other than the abdominal pain (except my ER trip), I had the other symptoms. I’ve had urinary problems for years, and actually have a bladder stimulator. I do wonder now if they are related. It’s still an issue after surgery, so I’m not certain.
Fatigue I’ve been struggling with quite a bit for a while. Interestingly, endometriosis causes it as well. And since I had that for who knows how long, it is possible that that might have triggered fatigue. Then, this year, when the fatigue got so much worse (something I was attributing to low iron), the cancer must have been influencing it. I was having days where I literally had to sleep at lunch before going back to work in order to make it through the day.
One of the things I luckily missed is that there is a higher risk of blood clots, and hypercalcemia (elevated calcium) is more common with OCCC. When we’re talking about the tumors, they are often large, unilateral (on one side), and look cystic with solid parts when imaging is done.
On my CT and ultrasound, the found the mass to have solid parts, which could either be a complex cyst or cancerous. At first, the cancer doc thought it was an infected ovary because there were no other signs of cancer, and my white cell count was so high, indicating infection. I also had inflammation. I’m not sure what caused that, and it hasn’t been clear either. They never did identify the source of the pain I had that night in the ER. All I know is they said there was “free fluid” in my abdomen along with the mass. Did a part of it rupture? Perhaps. It isn’t clear what happened, however, if it had not happened, it might have been months that allowed the cancer to continue to progress.
In my pre surgery bloodwork, my CA-125 had settled down from the high of nearly 3000 to under 200. The doc also ran a CA19-9, which also came back elevated. These two numbers mean a strong indication of OCCC.
The only way to get a definite diagnosis of OCCC is to have surgery and sent the tumor into pathology. At the time of my surgery, they went in and took out the right ovary and fallopian tube along with the tumor. It was sent to pathology while I was asleep. No matter the outcome, the doc was removing uterus and the other fallopian tube to limit risk of further cancer. When pathology determined it was cancerous, they removed the left ovary, the cervix, and the omentum. It stayed laparoscopic, so that helped out in the healing from the surgery.
And the outcome? Early‑stage OCCC can have outcomes equal to or better than high‑grade serous carcinoma, but advanced OCCC has worse outcomes due to chemotherapy resistance. Stage I has about an 85% survival rate. This means that my outlook is very good. Catching it this early, while it was contained to the ovary alone, is good for this.
Chemo will start soon, and I’m prepared to the whole thing. It’s not going to be fun; I know that. However I will be ready for it. More updates coming up as things progress.
Citations
PathologyOutlines.com. “Ovary – Clear Cell Carcinoma.”
National Cancer Institute. “Ovarian Epithelial, Fallopian Tube, and Primary Peritoneal Cancer Treatment (PDQ®) – Health Professional Version.”
American Cancer Society. “Ovarian Cancer.”
Kuroda, T. et al. “Clear cell carcinoma of the ovary: a clinical and molecular perspective.” International Journal of Clinical Oncology (2020).
Anglesio, M. et al. “Clear cell carcinoma of the ovary: molecular insights and future therapeutic directions.” Gynecologic Oncology (2011).
Sugiyama, T. et al. “Clinical characteristics of clear cell carcinoma of the ovary: a distinct histologic type with poor prognosis and resistance to platinum-based chemotherapy.” Cancer (2000).
National Organization for Rare Disorders (NORD). “Ovarian Cancer.”
World Health Organization (WHO). “Female Genital Tumours – WHO Classification of Tumours, 5th Edition.”