Anyone else been diagnosed with a borderline ovarian tumor?

I underwent total abdominal hysterectomy, tumor debulking and cancer staging for borderline ovarian tumor 3 months ago. it is state IIIA2. will be followed every 6 months with CT and CA-125. I have been off work, and will go back this coming Monday. For the first several weeks my doctor was saying i had ovarian cancer. it was not until the final pathology report that the diagnosis was confirmed as borderline. it was such a relief not to need chemotherapy. i am unbelievably grateful. yet i still feel a lot of uncertainty. my doctor said there is a high chance of recurrence due to how wide spread the tumor was. i am having difficulty getting going in my life again. it is difficult not to brace myself for another set back. anyone else feel so different after treatment and have trouble getting going in life again?

At 29, I had stage 1a borderline ovarian tumor (they classify it as borderline malignant on my chart), had ovarian torsion, ovary and fallopian tube was removed. The remaining ovary was preserved, but they keep pushing me to do a hysterectomy. I have check ups every 3 months (sometimes more if there’s a new cyst they have to monitor), but it’s been every month so far because they stagger the blood work (CA125 and CA19-9), physical exam (rectal and vaginal) and vaginal ultrasound. I’m almost at my 2 year mark and they told me after that, monitoring can be reduced to every 6 months.

I feel the same as you do, it’s hard to “continue” with life when recurrence is this cloud hanging above you at all times. They told me the rate was 20%, but when I did more research, the recurrence rate is higher the younger you are. I didn’t realize this when I had my surgery (which was an emergency) and I thought I was going to be “cured,” Instead I have to do follow ups for the rest of my life, it’s really hard mentally. My doctor said I should be grateful because I don’t have to do chemo, but I feel angry and tired and constantly worried.

I didn’t have as many surgeries as you had: just open abdominal and removal of one ovary and fallopian tube because it was a giant cyst. Recovery was hard and painful, I was constantly fainting for the first 2 weeks and in so much pain, but they wouldn’t give me oxy (which I’m grateful for, now watching all the documentaries about addiction).

I was very tired even months after my surgery and I had abdominal tenderness (wearing a binder helps). I don’t have the pressure on my bladder, although I did when I had the cyst because it was pushing down on my bladder, but after surgery, I had a lot of UTIs and yeast infections and BV, not sure if it’s related.

thank you for sharing your experience. it helps a lot of hear what other people have been through and to know that i am not alone.
that is really good news that you are almost to two years!
sending you good vibes. and sharing my intention to keep going one day at a time.

@l23. I was diagnosed with endometrial cancer (endometroid adenocarcinoma, Stage 1a) in 2019. No other treatment was recommended. I had a recurrence in late 2021 and so had radiation therapy. I'm at the two year mark and my next cancer surveillance appointments are next week. I will say that once the cancer diagnosis has been given the thought of recurrence never leaves. Sometimes it's buried further into my psyche and sometimes it rears up again.

I did not have the same diagnosis as you and I'm much older (71-years-old now) but I relate to your feelings of sometimes feeling angry, other times tired and worried. Yes, I am happy that I've not had to do chemotherapy but I drop all those "shoulds" as in "should be grateful" from my self-talk. "Should" talk isn't helpful. Follow-ups are difficult and anxiety-provoking. Still, I always keep my appointments and don't avoid anything I need to do for my own health.

When those worries pop up how do you give yourself self-compassion?

I was recently diagnosed for the first time at 60 with a Serous Borderline Tumor with microinvasion, and abdominal implants, staged at IIIb, and am waiting for a case review by the hospital tumor board for treatment recommendations. I am having a hard time relaying to others the diagnosis, and prognosis..recommendations as I wait to see what comes next for me?

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.

I hope you don't have to wait long for the review. Wishing
you the best.

Northside Hospital in Atlanta, GA, and, yes as confused (and so much more), as I am with the diagnosis and outlook, do look forward to having a group discuss my treatment rather than relying on my gyn-onc alone. I will update after Friday~

I'm treated at a teaching hospital, with 1200 physicians, this includes regional clinics. There are 3 gyn-oncologist at the hospital,
your hospital is at a different level, 2400 physicians, it offers a second opinion program-
https://www.northside.com/services/cancer-institute/cancer-second-opinion-program- and it is open 24 hours-
it sounds like a good place to be-