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Anyone else been diagnosed with a borderline ovarian tumor?
Gynecologic Cancers | Last Active: Sep 29 6:15pm | Replies (70)Comment receiving replies
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.
Replies to "At 29, I had stage 1a borderline ovarian tumor (they classify it as borderline malignant on..."
@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?
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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.