Anyone else been diagnosed with a borderline ovarian tumor?

Hi @angilee1, welcome. I’m tagging @ew62 to make sure she sees your incredible informative and helpful post as well as the offer to answer questions they might have.

That’s a pretty amazing bucket list things to have accomplished. Congrats on the wedding, the trip to Paris and Disney, the promotion AND getting into a doctoral program. Phew!

How are things going on Tramatinib?

Hi! I was diagnosed with a borderline tumor in 2015. Mine tumor also 11cm! I named it Martin because I thought it might be a teratoma (these benign tumors can sometimes have teeth and hair in them, look it up it is really weird). The surgery involved removing both ovaries, fallopian tubes, uterus (including cervix), and omentum (had not heard of the omentum before). I also had borderline cells in my other ovary.

I wish you the best. My borderline tumor caused me excruciating pain because I had ovarian torsion (it was twisted around connective tissue) and also pushing against my other organs. Every time I had to go to the bathroom, I felt like my poop was jamming against the tumor. Once I had the surgery, I felt amazing. I have not had that much pain since.

My CA125 started creeping up in 2017 and I went in for a biopsy via laparoscopy. They found evidence of low grade serous ovarian carcinoma. This can arise from a borderline tumor, but rarely happens. I started taking an aromatase inhibitor and my scans stayed stable for a really long time. Each time my CA125 went up I had a scan and was moved to a different aromatase inhibitor. Things were scary but I continued to live and live so I stopped being as scared. It has been 5 years since that diagnosis (7 years total for both the borderline and carcinoma) and in spite of the recurrence, I'm still here! I start Trametinib this week.

After my borderline surgery, I went crazy doing bucket list type things. I had gastric sleeve surgery and lost 95 pounds (from 270 down to 175) because F being fat. I was suddenly brave enough to fight for a promotion which meant I could move to another state closer to a cancer center. Then I got an even better job, negotiated for more pay, and applied for a doctoral program, which I am in now. I got an annual pass to Disneyworld, married my partner of 12 years who has been there every step of this journey, went on my first cruise and was surprised by my then partner with a trip to Paris and visited Disney Paris. Phew!

Feel free to message me as I am happy to answer any questions.

Thank you for moving my question to the appropriate place! I am being monitored every six months with blood work, scans, and visit with one of the OB/GYB team members. So far, all has gone well, but my visit last September showed a small lesion on my lung. I am going in for a scheduled six-month visit soon, so it will be interesting to see if the lesion has gotten bigger. From my understanding, I will be monitored for five years.

Two years ago, an 11cm tumor was found on my left ovary, and all the markers pointed to cancer. I had a complete hysterectomy and found out it was a borderline tumor, and I did not require chemotherapy or radiation. Has anyone else been diagnosed with this?

Welcome @ew62. You'll notice that I moved your question to the Gynecologic Cancers group here: https://connect.mayoclinic.org/group/gynecologic-cancer/

I did this because the term "borderline" tumor is specific to ovarian tumors. Ovarian masses or abnormal cell activity whether benign, borderline or cancerous can look similar or the same on diagnostic imaging. Borderline ovarian tumors are abnormal cells that form in the tissue covering the ovary. They are not cancer and are usually cured with surgery.

Fellow member @leannn also had a borderline ovarian tumor.

Monitoring is important. EW, will you continue to be monitored every 6 months or will that extend to less frequently in the future?