Anyone else been diagnosed with a borderline ovarian tumor?

what hospital has a tumor board? Never heard about this before? Who is on it? I think you are fortunate that you have
a team reviewing your case.

@charlotte 12 Many if not most hospitals who provide cancer care have a working tumor board. This is generally a weekly meeting with specialities who provide for cancer patients which included pathology, oncology, radiation oncology and in some cases internal medicine. Other larger medical centers will include other specialties such as gyn-oncology or genetics. The purpose of the tumor board is to discuss patients who have complicated diagnoses and needs in order to decide, in a collaborative way, what is a recommended treatment plan.

National Cancer Institute: Tumor Board Review

-- https://www.cancer.gov/publications/dictionaries/cancer-terms/def/tumor-board-review

I was diagnosed with endometrial cancer at Mayo Clinic in Rochester, MN. Since my diagnosis was not complex and the cancer was not aggressive my gyn-oncologist did not bring my case to the tumor board (I know this because my husband is a retired pathologist and this came up during one of my consults).

Does this answer your question?

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.

I am hoping so, this is all so new to me, and still processing everything that I have been told in the last week or so. I hope to feel a little better after speaking with my surgeon this Friday. I have done a little more research and have questions regarding the actual pathology of the primary tumor and the satellites. What has been your experience thus far?

@slanepac2024, how are you doing? Have you got a treatment plan now? Have you started?

I'm asking too many questions. 🙂 Let's stick to - How are you?

@slanepac2024 So you are now 3 weeks out from surgery? Is that correct? Is the 6 week follow-up (now 3 weeks away?) with your surgeon? I had to wait 6 weeks after my hysterectomy while I was healing before discussing treatment recommendations with my gyn-oncologist. It felt like a long time to me but it also took me at least 2 weeks before I felt I could go back to work.

I get concerned whenever someone says that they don’t feel comfortable with their support team. What about your surgeon? Has your surgeon spent time with you and do you feel comfortable talking with them?

Given what you’ve written here I’m wondering if you’d like to get a second opinion at Mayo. You aren’t that far away from the Mayo Clinic in Jacksonville, FL. You could ask your surgeon to make the referral or send off a request yourself. Here is the link:

Mayo Clinic Appointment Requests (for all 3 Mayo Clinics including the one in Florida):

— http://mayocl.in/1mtmR63

MD Anderson is also a good choice. I don’t know how virtual visits might work at MD Anderson. I do know you can schedule virtual visits with Mayo Clinic depending on the reason to meet with the medical provider.

Thanks for your response Colleen! I am now just over 4 weeks out, and have my post op, “cuff check”(!!), on 10/10, second opinion with Emory on the 8th. I have only seen my surgeon once since the surgery, and that was before the tumor conference met. I did speak with his PA that Friday, and she basically said that they discussed treating me with Letrizole, and apparently visits every 3 months for at least 2 years with an exam and blood work. Depending on those results and symptoms, a CT. I have a lot of questions and no, I don’t feel as if I have any support from anywhere other than blogs such as this. I am being followed by the high risk breast care center at the same hospital, Northside, and go tomorrow for a diagnostic mammogram and a bone density test, but they are not involved with the ovarian diagnosis. It is somewhat baffling that you’re given a diagnosis that is lifelong as I do have MRD in the abdomen and pelvis..that there is not more of an outreach or support of really any kind~my cytology came back c/w malignancy, and confirmed a serous neoplasm..the path is stg 3a Serous BOT with micro invasion..not sure when that bleeds into LGSOC..path wise.. anyways, will try to get a virtual with mayo, still working as an Orthopedic PA and am 1099, so no benefits or PTO unfortunately ~