So, in a shocking twist, Sparrow was right. I have Serous Borderline Ovarian Carcinoma, often referred to as Borderline Ovarian Tumor. Stage 1c. This means that it’s in each ovary and has spread to my abdominal cavity, but has not yet formed a tumor. When that happens, I become a stage 2.
Borderline behavior is widely disputed amongst doctors, often misunderstood, and a major sticking point for GYN Oncologists. On the beginning of each article written by doctors, there is usually something that says exactly that. Such as:
“The borderline category of ovarian tumors is one of the most controversial topics in gynecologic oncology and pathology, and is confusing to both clinicians and patients.” – Johns Hopkins Pathology
In short, every university or hospital has a very different opinion for what works and what does not for Borderline Patients.
I will be conducting a ton of research myself to mix all of those opinions up and to come to a better informed conclusion for what I should be doing. My Oncologist here was talking Chemo. I see him Monday. Mayo says that all the chemo in the world is not effective and does not prevent new tumors from forming. Their method of treatment is Radical Hysterectomy, and then watch and wait. Every 3 months for 24 months I will have a CA-125, CA-199, Vaginal Ultrasound and a CT Scan. When the next one pops up, we do surgery. Rinse, Lather, Repeat. After 24 months, we move the testing intervals back to every 6 months. There’s no preventative. There’s no awesome studies going on to participate in. There aren’t enough patients who have it to even try. The clinical studies that have been conducted in the past have taken place over many years (as many as 16) to try to understand both the behavior and recurrence rate. I do not have ovaries anymore, so my only option is to wait for the next ones to pop up.
Unless my doc here can present a compelling reason for why he believes that Chemo would be effective, I think I’m going to skip it. I’ll see him on Monday to find out what he thinks and we’ll go from there.
In the meantime, I’m going to approach all of the Universities and Oncologists that have conducted trials and research on the disease, and see if I can’t get my hands on some of those summaries.
Basically, I have just found my next project. J No sense sitting here waiting for this to take over my life. I’m going to learn as much as I can about it, learn from others who have it, and then see what we can do to journal our relapses, progressions and remissions to learn more about the behavior of the disease. If we can get some doctors to pay attention to and help us, that’s even better.
Hell…some people do Sudoku to pass the time. I’m going to learn oncology.
{ 3 comments… read them below or add one }
Best of luck with your research, now that you at least know exactly what you are facing.
hi shannon. just want to say hi and that i am enjoying reading your blogposts. your strength really comes through in your writing. i am thinking of you and want you to know i am by your side in this journey.
much love
Isn’t it a relief to “know” something? Even if you have to learn more, at least you have a diagnosis finally. I am wishing you the best of luck and love and light. I don’t know many people stronger than you. You are in my thoughts and prayers. Love, love, love, LOVE you.