Anyone else been diagnosed with a borderline ovarian tumor?

Thanks for your reply , Kim! My CT scan with contrast (chest, abdomen and pelvis) was clear which was a relief. So after a Tumor Board review out was decided there would be no follow up with the the Cancer Centre due to the fact the tumors were Borderline and there was no microinvasion or micopapillary architecture and the fallopian tubes were normal and the Bilateral Salpingo Oopherectomy had been done. I realize our resources are stressed and their time is better spent working with people with cancer but I still I still had so many questions about my pathology report and would have appreciated a quick phone consult even at that point by someone with an oncology background. I tried to contact someone at the lab but they would only speak to my doctor which frustrated me as I needed an actual 'conversation' to have follow up questions answered. I spoke to my GP and Gynecologist about follow up and my GP said, annual CTs for the first 5 years, Bloodwork, watch for any changes in my health and we discussed seeing a geneticist, (testing would be out of pocket as I don't qualify for coverage as I don't have a history though both mom and sister had gynecologic issues young) and I do have a consult date for that. I'd be interested in the BRCA gene and wonder if that could change the situation. I think she suggested ultrasounds but my gynecologist did for sure. I was happy finally my gynecologist reached out to the Oncology Gynecologist who sent the report (that took weeks to come after the Tumor Board reviewed it) as she couldn't answer some things and wanted guidance in follow up. To my surprise I then got a phone call from that specialist a few days ago which really helped and made me feel better. She did recommend follow up CTs but not annually due to the large amount of radiation, annual ultrasounds, blood work annually though I didn't have a raised CA125 and they don't seem to put alot of faith in that test. Levels aren't always high even with cancer. I was instructed to watch my health, follow up if I notice any new symptoms....that was that. Had they known the tumors were borderline, the oncologist said they would have taken the uterus too at but no recommendation to do it now. Very small chance of reoccurrence. Re the atypical cells in the pelvic wash she said they wouldn't do any treatment for that. I feel that is a real grey area and it's value pertaining to a diagnosis from what I've read has changed over the years. There are other reasons people have positive washes though it makes sense that my epitheal tumors were probably the culprit and had shed before or during the surgery. Unfortunately the wash was done after, not before surgery (as recommended) which is disappointing but they had no indication from the many ultrasounds I had that they were BOTs. The whole ultrasound experience was a let down for me. It lacked consistency and direction. I think these tumors were challenging to visualize and an MRI should have been done I feel. It was recommended once but they resorted to more frequent ultrasounds. Four years this went on! I'm just glad we did the surgery when we did. It's been 20 weeks now since surgery. I had thought of seeking out another opinion but I think I need to just live and trust the expert I spoke to. My Gynecologist is being very supportive. Getting the first premature cytology report back 4 days after surgery saying everything pointed towards cancer was devastating, and even though after pathology it was downgraded and the diagnosis was BOTs I find it has taken a while to get my head around thinking I'm going to be ok, but I have to be positive. P.S. sorry for the delay, I thought I sent this! I did see a geneticist and it was quite interesting chatting to him and I am still thinking of doing it. It would possibly be helpful if I were to have a cancer diagnosis of any type in the future. He did say things change all the time and they'd be testing for new things in the future. I think it is probably more helpful if you already have cancer and you're going to the geneticist so they can assist in ensuring you're getting the best treatment available with your specific gene history. My sister and mother (with a European Jewish heritage which has higher incidences if ovarian cancer apparently) both had alot of ovarian issues and they had theirs removed quite young. There could have been a possibility their hysterectomies could have prevented any cancers, who knows. I will make a decision on that soon. It could be beneficial for my adult children but the geneticist did say you need to be comfortable receiving the results, good or bad. I saw my gynecologist 3 months after surgery and see her again in in November.
What did your second opinion reveal?
Hope all is well.

Hello Skyegirl,

Sorry for the delay in my reply.

Yes, I did get a second opinion pathology report from MD Anderson. They diagnosed a Seromucinous Borderline Tumor which they did not stage and said that it was not possible to stage based upon the slides alone.

My current follow up protocol is lab tests (C125, CEA and CA19-9) and CT scans with contrast every 6 months for the first five years and annual follow up thereafter. At I write this, two of my lab tests have gone up slightly and of course, I am concerned about a recurrence.

On my own, I had to seek out a gynecologist/oncologist for my follow up. My original gynecologist who was consulting with a gyn/oncologist said that I didn't need follow up after the surgery and first lab tests post surgery. I was very upset by what seemed like a cavalier approach and that is when I researched dozens of gyn/oncologists on my insurance plan and I chose one who actually had done a residency at MD Anderson and she has other credentials that I liked as well.

I hope this helps and I hope that you get the follow up care that you need.

Hugs,
Kimberly

I know it's been awhile since your post but I am curious to know if you got a second opinion and what happened? I also have a diagnosis of borderline tumors on both ovaries after a bilateral Salpingo oopherectomy. Last month. My case was reviewed at our Cancer center in a major city in Canada and I am waiting to discuss the report with my gynecologist but was told by the nurse at the centre that they would not be doing any follow-up other than a CT scan and regularly checks with my gynecologist. It seems a little premature to make that prognosis before I've had the CT scan even.I too I'm not 100% happy with this and wonder if I should look for a second opinion somewhere. I would have at least appreciated a consult with an oncology gynecologist so they could explain more about these tumours. Hope all has gone well with you. Thanks in advance.

@slanpac2024 So you second opinion with Emory will be on 10/8? That's good that it is scheduled. Will you see a gyn-oncologist? Presumably your slides have been sent to Emory for their pathologists to read? Hopefully the provider at Emory will spend the time with you to answer all of your questions and explain whether they would recommend. If I read your note correctly the Emory appointment is 2 days before going back to the original surgeon? That's actually a good thing because then you can compare and decide what you'd like to do next.

As a 1099 does that mean you work under a contract and not a regular full-time employee? Do you get your health care insurance from another source? Presumably your health care insurance will pay for the second opinion at Emory. You might want to call your insurance company about Mayo Clinic to make sure you are covered there. This health care insurance gets very complicated especially when you go out of state or for a second or third opinion.

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 ~

@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.

Hi Colleen, doing pretty well physically. Went back to work last week for one day, at 2 weeks post op, and worked 3 full days this week. I don’t know if I have said it before, but I am a PA in Orthopedics-clinic based. So aside from a little discomfort and fatigue at the end of the day, I managed to get through it, and know it helped out mentally to be busy and thinking about others, and not so much about everything that is going on. I did start Letrizole last weekend, and will discuss more at my 6 week follow up. I am going to get a second opinion at Emory, and had a patient yesterday who also has SBOT,(!) but stg 1, and is treating at MD Anderson. She recommended possibly getting virtual second opinions there and possibly elsewhere, so trying to figure out how that works. Haven’t been to pleased with my surgeon’s support staff, or maybe it’s the lack thereof, but feel like I had the procedure and am just supposed to sit back and do nothing for 6 weeks.. I don’t know~

@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?

Sounds like you really got your life on track, well done snd good wishes for your full recovery

My hospital has a tumor board. The various specialties meet weekly.