Borderline LMP Ovarian Cancer

[Chelan]

Last Year I was diagnosed with Borderline Ovarian Cancer my affected left ovary and tube were removed along with 2 chocolate cysts on my right ovary. I did not have staging surgery and because I don't have children they did not perform a hysterectomy. Although I didn't have staging done I was told the tumor was STage 1. I was told I should have a hysterectomy by the time I'm 35 or 40 (I'm 34 now).  My follow-ups are scheduled only for every 6 mos.  My CA-125 was 66 prior to surgery and has been bouncing between 36 and 56.  
Have I been given good advice?  What is recommended for follow-ups, age of hysterectomy, CA-125 values for those with Borderline Cancers.

Thanks.
Chelan

[solitary_step]

I wish I could help, but I'm writing more to commiserate.  1996 LMP tumor on left ovary - they took the tumor and left the ovary - no staging.

2005 LMP's all over ovaries, outside of ovary, up fallopian tubes, and one tumor burst into my peritoneum leaving me with a positive cytology for 8 months, [no staging] at which time yet another recurrence in left pelvic sidewall.  
COMPLETE SURGICAL STAGING was dreadful.  Spent 1 year + trying to walk up a flight of stairs by myself.  I healed poorly.  

They took my ovaries, tubes, cervix, uterus, multiple lymph nodes, omentum [covering of the stomach] and herniated my diaphragm - 2 years later the hernia is still visible and my stomach is a mess of bumps and lumps - I'm all twisted and my left side is bigger than my right side of middle torso.  

9 months after all that - tumor [adenoma] on left adrenal gland.  Benign but actively throwing off hormones.

At present: lesions in both kidneys too small to characterize.
Nodularity on left lung now seen on right lung.
I could go on but I'm sure you understand.  It's been hell.  

I was told no chemo because my tumors wouldn't respond.  I had rare tumors that acted oddly.  Serous, mucinous, and endometroid epithelial borderline ovarian cancer, with signet cell rings found in ascites fluid.

The oncologist and my surgeon agreed no chemo because they didn't think it would help.  I sit and wait and watch, and hope I catch the next one early.

You are you're own best advocate.  If you feel like something is not right - most likely it's not.  After all, you know you're body better than anyone.  Make absolutely certain you go for regular cat scans every 6 months without fail.  You don't want to go through what I just described - trust me, it was bad.

[westajul]

In Apr07 I had a LMP borderline tumor removed. Becasue of my age my doctor recommended a complete hysterectomy and both of my ovaries removed. I am in my mid 40s so my childbearing years were already over. My advice for follow up is to have a ct scan every 3-6 mos and also a ca-125 and cea test performed. CA-125 numbers can vary for a lot of reasons...so don't use them as a sole marker for cancer. My ca-125 numbers stayed around 25 yet I have had a recurrence of my cancer. Thankfully due to the ct scan and cea test my recurrence was caught very early. When my doctor didn't recommend any type of chemo for my LMP borderline tumor  I sought a second opinion from a GYN. Oncologist at MD Anderson and they agreed with the follow up recommendations from my doctor at home. If you have any concerns about your scheduled folow up...get a second opinion from another Gyn. Oncologist. Good Luck. Julie

[melenzbee83]

Hi,
I was diagnosed with LMP serous borderline tumour when i was 22. I had my left ovary removed and appendix. Since then I have been kept under close observation. I would recommend having your ca125's every 3 months and cat scans or and internal ultrasounds every 6 months (although these two are both useless for microscopic growths). You def should get staging and they should NOT  be guessing about the stage and type. Also ask for a complete histology which will determine if the type you have is likely or unlikely to turn invasive in the future.

I do find this diagnosis most frustrating as noone knows a lot about it, the best course of treatment etc.

Best of luck.
Keep us posted.
Mel