Anyone else been diagnosed with a borderline ovarian tumor?

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?

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?

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.

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.

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?

It is great to hear that you are doing well. I was diagnosed this week with a Teratoma 8.5 cm. My friend said, I have an 8mm socket, it's not that big of a deal. Well he was incorrect it's cm, not mm. Trying not to be afraid and wondering how many others have Adnexal Teratoma that is this large and what your outcome is? Did you need chemo or was if a complete or partial hysterectomy.

Appreciate any info available. Long time until Monday.. or it feels that way.

Welcome @mom4kody. I'm tagging members @stephkleier and @oakbourne who have experience with teratomas.

I can imagine that hearing that you have teratoma is worrisome and having to endure this worry of the weekend almost unbearable. According to this article, most ovarian teratomas are benign.
- What Is a Teratoma? https://www.healthline.com/health/teratoma

When will you talk with your doctor about treatment options? Is it causing you any pain? How was it discovered?

I will be on the phone tomorrow AM looking for help from my GYN and PCP. I'm also reaching out to the Neurologist who was treating me for Long Covid related symptoms and found a possible issue a few months back. She wasn't concerned but said when I see my GYN let her know. My GYN appointment is in 2 weeks but this past Wednesday, I went to the ER of the local hospital that had run my prior CT scan, with backpain, that I've never had before. I'm also having difficulty with bowel movements and taking every thing, I know of to relieve that issue. When I looked at my scan photos, I can see where my L4 L5 is narrowing on the right side and the 8.5 cm teratoma is on the left side.

It was interesting to see articles about autoimmune and teratomas on Mayo's site. Earlier this year, I had autoimmune testing performed and the scores were above normal but my PCP didn't refer me out or do anything, now this. Trying not to worry. Tonight, I found this article, which makes sense in my case since I'm having the bowel issues also.
(unable to post link, "Avoiding the bowel: a report of a mature cystic teratoma displaying fully developed intestinal tissue protruding from an ovarian tumor" 2009)

The entire thing is just disgusting and one of the nurses at the hospital said the growth could have been a possible twin that I absorbed? (That is messing with my mind). I'm an only child with much older half siblings. A sibling would have been awesome. Just trying to figure out what, when and where to go next. Thanks so much.

@angilee1 Hi it would be great to hear how you are doing. I haven't quite named mine yet but the pressure in my abdomen is getting to be miserable. Hoping to hear from my physician's office today. Any words of encouragement or to know how you are doing? Did "Martin's" family return? I hear they can come back.

Hello, I hope you are doing well. I had a 15cm teratoma that actually twisted my ovary, that being the way it was discovered. I did have surgery, removal of that ovary and tube because of the size had engulfed some of the tube as well. It had all sorts of tissues in it. It had lung, thyroid, bone, a tooth, lots of hair, skin tissue, and i dont remember what else. I used to have pics of it around here somewhere. It was pretty gross, lol. I called it my monster. A number of years later when i had a complete hysterectomy for other issues they discovered i had another one on the other ovary--which i heard was uncommon. I guess some people have all the luck. From what i have read, teratomas are very rarely cancer unless they occur in teenage or very young adults. The removal of the first teratoma was done laparoscopically and i recovered fully and quickly. Hope this helps.