Borderline ovarian cancer recurrence anyone?

Has anyone on here ever had a recurrence of borderline ovarian cancer? Just curious.

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None here, but my surgery was 15 mos. ago.

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Hi....I was diagnosed with borderline (LMP) in June 2001...had surgery to remove my left ovary and tube...had been monitored with ca125 and physical exams fairly consistently. In Dec 2007 was diagnosed with stage 3c, low grade cancer. Apparently it's rare, but borderline can sometimes progress to low grade...so in my case it's not really a recurrence, but a stage progression of some microscopic implants. I don't want to scare you, but it's important to be viligent in follow-up. Good luck....

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how were you being monitored when they found the stage 3? how did you know?

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Hi...sorry it took a while to respond back to you. I didn't "know" anything was wrong when I was diagnosed. I had been routinely followed up since the original diagnosis by my gyn/onc (ca125 and physical exams). First it was every 3 months for 1 year, then every 4-5 months for 2-3 years and then every 6 months out to 5 years. All the while, the tests were great...ca125 keeping steady at 9-13. At the 5-yr mark, my gyn/onc believed it was safe to go to yearly exams. My first 1-year follow-up my ca125 went up to 35. We did a transvaginal u/s- nothing. I waited another month and repeated...u/s still fine but ca125 up again to around 40'ish. We repeated the following month - again nothing on u/s but ca125up (65). We also did a CT scan which showed nothing. He decided to go in to take a look...all the time thinking it was another borderline tumor on the right ovary.....but unfortunately...got the devastating diagnosis. It's hard to say when it all happened....maybe I shouldn't have gone the 1 year. How are you being monitored now?

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Carla,
Your story sounds so similar to mine. I was diagnosed in 1979. My cancer had spread but was still LMP. I had chemo and radiation then I was watched for years. Nothing until I had a bowel obstruction. I had to have surgery to fix that in 1997 and there it was. The cancer was in my abdomen. Then the watching really started, it kind of just sat there until about five years ago. That is when my CA125 started going up. The cancer was spreading while on chemo. The thing that seemed to help the most was Faslodex. Everything only works for six months at most, then we move on to another drug. Another doc put me on hormones in 1989 after I was "clear" for 10 years, my new doc immediately took me off them as he said " they fed the tumors". Now I think taking hormones may have my downfall. I have tumors in my chest and abdomen now. Just finished radiation. Waiting to see what is next.

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You alright Michelle?

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I think I'm fine, but I constantly worry. I have terrible pain that I have had for months. I think it may be adhesions, but who knows.

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I don't think the worry ever goes away. You need to be checked to be on the safe side though. Take care.

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Have any of you been advised to have your uterus removed I was told by my onco-gyno to have this done once my family was complete. Do one try ivf and then removal. He says it means it only has a 4% chance of returning. I was told borderline cancer is not the problem the problem is the returning of a ovarian cancer. Which many times can not be detected till its at an advanced stage. What do you think of this advise I am freaked out a bit!!!!!!!

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Hi,

I was diagnosed with stage 3a borderline last November with a cyst of 17cms on my right ovary and a 7cm cyst on my left, I also had a small cyst on my omentum and implants on my uterus... I had fertility sparing surgery and was left with the majority of my left ovary, it has been 6 months and I have just gone for my 1st scans and found a new growth on the remaining ovary currently 5cms in size, it appers to be again a borderline cancer. I am currently seeing a fertility Dr about trying to freeze eggs prior to removal of the last ovary... my appt is in 2 weeks... My oncoloist is currently happy to scan me every 4 weeks whist we try to undergo the fertility.

Its really important to keep up to date with your scans!!

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MIchelle,
I also have pain and no one can seem to figure out why. Urologist - now gastroentologist? I am due for a 3 year follow up colonoscopy - sched for June.
Saw oncologist Wed she said she doesn't feel anything that is hard - she sched me for a ct scan in July. She said it could be adhesions. ??? The pain is in my pelvic area and heads up into my stomach and up just below my breasts. - side hurts.
I just don't know why I should have pain.

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I had surgery to remove a mass in Aug 2007. When I came out of the surgery, I was informed that they had done a full hysterectomy on me. I wasn't worried about it as I already had 3 kids with no plans for more. They told me that it was a malignant tumor and that I would have to do chemo. After further testing they ended up diagnosing me with "Borderline Ovarian Carcinoma", which does not require chemo. Yeah!!! I have been monitored every 6 months since then and was fine in October 2008. Then in March 2009 the found "Something" on my CT scan and my Ca-125 was at 57. They had me do another CT scan in May and found the "Something" had grown a little and my CA-125 was at 62. I have been sent to UCDavis (in California) and am now waiting for a surgery date to remove it. The dr.'s seem surpised as this type of thing does not usually happen with borderline cancers.

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I am sorry to say that I too am a woman who was diagnosed with borderline in 2003. Did full ooferectomy and hysterectomy and was told no chemo needed. Had a recurrence in 2007 in one lymph node. Has chemo and radiation and have another lymph node that was out of the radiation field. Now I am back on chemo
Seems like more people with borderline are getting recurrences. Please check with your dr. and consider a CT scan. Best of luck. Let us know how you do.

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I was diagnosed in 1984 at age 27 - had hysterectomy - I never had children - was disease free for 21 years until 2005. Had surgery again to remove tumor near rectum and scattered disease. CA-125 never went above 8. Treated with chemo for 16 months.

CT scan in 8/08 showed tumor in same area on the other side. Had surgery in Jan and tumor was found to be inoperable. Imbedded in pelvic floor entwined with blood vessels to my leg. Completed 38 rounds of radiation 3 weeks ago. Now we wait for next MRI or CT Scan. I know it's still there because I can feel it.
This is all "Borderline OC". It's rare, but it can return.
Dr. tells me it will be with me the rest of my life. It is not agressive but very invasive.

From everything I have read about this disease, it is very hard to treat because it doesn't respond to chemo.

I take one day at a time and live my life as best I can.
BYW - I ended up with a colostomy because of this lovely disease. That sucks!

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