Anyone else been diagnosed with a borderline ovarian tumor?

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.

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

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.

@ew62 Me!! December of 2024. A 21 lb 43 cm mass. Crazy! Life changing. That was the right ovary but the left had a small one too.

@alh4791, welcome. Finding a cancerous tumor is life changing. A 21lb 43 cm mass, that's sounds completely crazy. My goodness.

What treatment has been recommended? How are you doing?

Me-- in Dec of 2024. Mine was very large. 42 cm. Life-changing really.

@colleenyoung so sorry for taking so long to respond. I forgot my password or something and always meant to come back. I am not allowed to do HRT. I see an oncologist every 6 months for 5 years. We do cancer makers and so far so good. I had a major abdominal scar but it is healed and I exercise a lot. I do not like the hot flashes. Ugh. Different emotions. It's been hard but its part of my story. I'm doing pretty good considering. Thanks for asking

@alh4791 Thank you for coming back and letting us know how you are doing. So far, so good sounds, well, excellent to me. Lifestyle is what we all can do. And keeping up with our surveillance appointments. Like you, I find exercise helps me so much. It's good for the body and the mind. You mention that you have different emotions which is difficult. May I ask what kind of emotions you are experiencing? How do you cope with these changes in emotions?

We are all here for you whenever you drop in. Isn't that a nice thing about Mayo Clinic Connect?

@naturegirl5 I'm really happy to connect with others on here, and I think it is very helpful.. Come to think of it.I don't even know how I found it but i'm really happy that I did.. I think, as far as the hysterectomy, it comes with a lot of physical changes and sometimes emotions get out of control- a little. Hormones are off. I always wanted children and I think the hysterectomy, just solidified that I will never have them.. That's something i've had to work through and I'll continue to work through, I believe.. I still struggle some with the fact that the mass was there and I didn't know it was there for a while.. But I do have supportive people in my life, and I do have people I can talk to. Maybe just accepting the fact that life isn't exactly how you want it all the time... I've always known that, but sometimes it hits you the wrong way. Thanks for reaching out

@alh4791 Thank you for your reply. With all the changes including a hysterectomy your reply shows that you are making room, emotionally, for it all. You have supportive people, people who listen to you, and are working towards accepting that the life now and ahead isn't quite how you thought it would be. You are so right. Deep down, we know that but we can hope for the life we designed for ourselves.

I'm happy to know that you feel the connection here on Mayo Clinic Connect is helpful for you. Like you, I stumbled on Connect after my hysterectomy for endometrial cancer. That was almost 7 years ago. It's the only site I've "stuck with" because I feel that we support one another by sharing our own stories with respect for one another.

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