Anyone have a LMP convert to OC?

[Betty1227]

Hi....I am newly diagnosed with stage III oc.  I was diagnosed with a low malignant potential ovarian tumor on my left ovary about 7 years ago (age 25).  My gyn/onc removed the left ovary and fallopian tube.  We were following my CA125 levels very closely with no concerns - always less than 10.  I was a "surgical cure".  At 5 years....my doc felt comfortable checking my levels yearly.  At the 1-year mark, my Ca125 began to increase moderately (transvaginal u/s and CT scan all normal).  We waited a few months and then repeated the CA125 - it went to 212. I had surgery to take a look and got devastating news...I had stage III ovarian cancer. Has anyone had a similar situation?  I felt extremely lucky to had found the tumor so early.....but am stunned at how fast it converted under close supervision.

[Casey06]

Hi again, my story is a little more straight forward, so I will try to give you the readers digest version:
45, premenopausal, many GI symptoms (gas, bloating, indigestion, abdominal pain).
GI doc does upper, lower, endoscopy, all clear, then CT, find 5cm mass on left ovary.
My ob/gyn says it's nothing, new og/gyn says cyst not causing my symptoms, but finally get a very nice GP to order CA-125 , which was 400, and follow-up TVUS, which confrms cyst persists, but no real change in size. Get referral to Gyn/Onc who is 99% sure it is endometrioma and endometriosis and recommends TAH/BSO because of age and I was not concerned about fertility (a little concerned about surgical menopause, so ask him to spare right ovary if possible). Have surgery and frozen path is seromucinous LMP and extensive endometriosis, so he does full debulk and removal of everything including appendix and omentum.
He said I was surgically cured an did not recommend any follow-up except at 1 year.
I did some research and saw every 4-6 months was recommended, so got 2nd opinion and path review at Roswell Cancer Center, which confirmed path, but new gyn onc wants follow-up every 4 months for 2 years and yearly after. My CA-125 was 8 post surgery.

Thanks for the reply and I hope your surgery goes well, when are you scheduled? If you have any questions about it, let me know.
I will keep you in my thoughts and prayers...keep in touch. Please do stay positive, many on here have had very good prognosis and are doing well.

Debbie

[hopeshell]

I am so sorry to hear about your recurrence.  I as dx with Stage 1a last July and I am 37.  I wish you well with your upcoming treatments.  Keep us posted on how you are doing.    Shelly

[Betty1227]

Hi Casey06,

Honestly, I'm not sure that I can answer all of your questions....I don't remember all of the details....I think I blocked most of them out.  I'll try my best...

- i don't remember the orginal size, but I know that it wasn't very large...it was completely an incidental finding.  I had this sharp pain on my left side for about 2 days.  My sister is an internist and had a history of cysts so referred me to her gyn for evaluation.  By that time the pain had stopped...I didn't even want to go to see the doc...but since he was a friend of my sister, I went.  He confirmed that it was a large cyst that had ruptured - the inflammation was confirmed on ultrasound. He performed a laparotomy and discoverd some cells under the left ovary. He sent me to a gyn/onc....who diagnosed me with a LMP.  The tissue sample was actually sent to Mass General for confirmation and consultation for next steps - they wanted to preserve fertility.  

My gyn/onc perfomed a complete staging...found tumor on my left ovary and a little bit on the right as well.  It was serous type. Apparantly, there were some in the peritoneal washings....all were biopsied and confirmed to be LMP.  I had a left salpingo-oophrectomy and follow-up included ca125 and physicial exams...every 3 months for 1 year, then every 4 months for the 2nd year, every 6 months for the next few years and then yearly once I hit the 5-year mark.  As I said, my ca125 was always less than 10.  I believe that prior to surgery it was high 100s.

So into my 7th year....my husband and I decide to start a family and I got off of birth control...my doc ok'ed it.  My first ca125 after that was elevated (55)...he wasn't concerned because he believed it was due to ovulatio/menstruation.  I had a transvaginal u/s - normal.  We repeated the levels and u/s for the next 2 months (he wanted to evaluated after a few full cycles off on bcps)...still slightly elevated (55, 65)...and normal u/s.  In dec...the ca125 went up to 212...he ordered a CT scan which was normal...but wanted to go in and check.......he saw tumor and pathology confirmed stage III ovarian carcinoma.  It's on my right ovary, and on the uterus....I am having a total hysterectomy + chemo.  We're still stunned at how nothing showed radiologically....and so sxs either.

I never had any issues for 7 years afer the origianl diagnosis....I wish you many, many more.  Just make sure you continue to follow the levels and physical exams.

What is your treatment?  How did you get diagnosed?  I'm curious to hear your story if you don't mind.

Thank you for your good wishes....I'm trying to stay positive and focus on getting better.

[Casey06]

Hi Betty, I am so very sorry to hear about your diagnosis of stage 3 OC. I was diagnosed with an LMP tumor on left ovary this past August (August 2006), so I am very interested about you original diagnosis and follow-up:
- how large was the originnal LMP tumor on left ovary
- was it confined to the ovary (stage 1a)
- what cell type was the original pathology
- was your CA-125 elevated with the original LMP tumor, if so what was the value
- did you have pathology of original LMP checked at a second hospital or cancer center
- what is cell type, stage and grade of the new dx. Where has cancer spread to.

My current gyn onc said a recurrance of OC after LMP is usually a "new" cancer and actually not a recurrance of the LMP, but I would like to see what others on this forum have to say.

Again I am sorry and wish you all the best with treatment of the new OC.