Anyone else been diagnosed with a borderline ovarian tumor?

Posted by EW @ew62, Sep 3, 2022

Two years ago, I underwent a hysterectomy to remove an 11cm tumor on my left ovary, and all the markers pointed to cancer. After my surgery, results showed I had a borderline tumor. Thus I did not need chemo or radiation. I go in every six months for blood work and scans for further tumor development. I am tumor free thus far. Has anyone else been diagnosed with a borderline tumor? I am curious as there is not a lot of information about them.

Thank you!!

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@l23

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.

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@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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@l23

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.

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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.

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@saro2012

I was diagnosed with borderline serous ovarian tumor stage IIIA2 three months ago. I underwent TAH, cancer staging, tumor debulking, omentectomy, lymphadenectomy, peritonectomy. I will have a CT scan and tumor markers every 6 months. Can anyone comment on how they felt physically after surgery. I still feel a lot of pressure on my bladder and physically tired. Abdominal tenderness as well. I don’t know anyone who has had this extensive of a surgery. I would love to hear what others have felt like and what I might expect in the months to come.

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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.

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@saro2012

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?

Jump to this post

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.

REPLY

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?

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@kirstinleigha

Hello has anyone been diagnosed with Serous Boarderline ovarian tumor?

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I was diagnosed with borderline serous ovarian tumor stage IIIA2 three months ago. I underwent TAH, cancer staging, tumor debulking, omentectomy, lymphadenectomy, peritonectomy. I will have a CT scan and tumor markers every 6 months. Can anyone comment on how they felt physically after surgery. I still feel a lot of pressure on my bladder and physically tired. Abdominal tenderness as well. I don’t know anyone who has had this extensive of a surgery. I would love to hear what others have felt like and what I might expect in the months to come.

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@naturegirl5

@kirstinleigha This is very good news and I'm so glad that your questions were answered. Is the surgery scheduled yet?

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@naturegirl5
Yes ma’am. My surgery is scheduled for Thursday.
I had an appointment with fertility specialist on Friday, he did a ultra sound and found 2 more complex cyst on my left ovary 🙁

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@kirstinleigha

Hey everyone,
My appointment went well..
All of my questions were answered and my oncologist was amazing!!
I will be going back in for another surgery to have biopsies done and he will remove my fallopian tube because for some reason the obgyn left the fallopian tube.

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@kirstinleigha This is very good news and I'm so glad that your questions were answered. Is the surgery scheduled yet?

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@kirstinleigha

Hey everyone,
My appointment went well..
All of my questions were answered and my oncologist was amazing!!
I will be going back in for another surgery to have biopsies done and he will remove my fallopian tube because for some reason the obgyn left the fallopian tube.

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Leigha, this is good to hear. Having one's questions answered soothes the racing mind. When will you be having surgery?

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@candybeason45

My surgery is Tuesday and I'm so scared for what they will find. It's giving me anxiety & I already take anxiety medicine 😪 I pray u find out some good news your surgery will be a day or 2 after mine I will be sure to let u know what I find out. It definitely is scary and I know how u feel. The closer Tuesday gets here the more scared I get!

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@candybeason45 I sent you a direct message.
I had an appointment today and they found something on my left ovary 🙁

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