Risk of OVCA recurrence

[redhead154]

Dr. Goodman - I was diagnosed with OVCA Stage 1C in May 07 at the age of 27. My cancer was caused by endometriosis (extremely rare I know) and was found during a routine laparoscopic procedure to remove a cyst on my left ovary. The cyst was determined to be a Grade 3 endometriod adenocarcinoma. I've had a history of ovarian cysts, all of which were benign except for this one.

I was referred to a gyn onc for a laparotomy and surgical staging two weeks later. All the biopsies came back negative. My doc decided to leave my uterus and right ovary for child bearing, a decision I trusted him to make based on his findings during my surgery. I received 4 courses of carbo/taxol after surgery to prevent recurrence since my cyst was poorly differentiated.

I have done well and recently started having periods again. My doc said that I should wait at least six months before trying to get pregnant. It's now been 6 months. He's given me a 2 year window to try to have a child, after which time he recommends that I have a complete hysterectomy and removal of my other ovary.

I've been experiencing some pain and heavy bleeding with my periods. I also have a small cyst (under 2 cm) on my right ovary. I'm concerned about the possibility of a recurrence, particularly knowing that I have a cyst and could very well develop endometriosis again. My doctor said that the pain and heavy bleeding is likely due to the inflammation of scar tissue from the surgeries I've had. He's not concerned about the cyst because of its small size. My CA125 also went from 7 to 12.5 recently, but I know this could be because of ovulation.

I'd like your opinion on the possibility of a recurrence, particularly if I were to develop endometriosis again. I'm in the less than 1% of women that developed cancer from endometriosis, which makes me very wary of developing it again.

[aliwitsend]

I was a IC3 OVCA, large mass,  same cell type as you I think.   Almost 6 years out.  With no chemo, I would have had a 50% recurrence chance or was that survival.  Well with chemo, it was something like a 30% recurrence chance, but a 90-95% survival.  So far so good, but I haven't had a CAT in ages.  They took everything out, though I'd wanted my good ovary saved.  Hope this helps.  My doc was MD Anderson trained.  Very tricky they are, they don't want to talk about recurrence rates, one has to push & keep asking for answers, and they would rather talk about survival but that is kinda fudging the stats as far as I am concerned.  We want to know what is the chance we are
free and clear.  

[nyc lady]

I had all the classic symptoms...bloating, fullness, fatigue, constant urination.....I ended up in the ER but also running a high fever, they automatically started an IV of antibiotics, did a CT Scan and found that I have very big cysts on both of my ovaries and tubes....I was admitted and had surgery 4 days later, they removed my right tube/ovary and also removed cysts from my left ovary and tube, I begged to try to save an ovary as I wanted to perserve fertility.....no one mentioned cancer, never a thought and I had no access to the internet in the hospital, it was 8 years ago......the frozen pathologies all came back clear....it was 10pm, exactly 2 weeks after the day of the surgery my OB/GYN called that the final pathology came back with cancerous cells and he had already spoke to the GYN/ONC and I was to follow up with him or a GYN/ONC on my own.  I called the next day and was in the office with the GYN/ONC a couple of days later.  Stage 1A so I did not have to have chemo and since then I have been closely watched by the GYN/ONC (almost 8 years out and I am still on the 3 month plan).
Good luck and stay in touch.
Pam

[chloe08]

Thanks so much for getting back to me.
Mine has been consistent in size for 12wks but has changed in appearance (was considered simple then looked like it hemorrhaged  - so hemorrhagic cyst - then didn't go away so considered to be most likely endometrioma).
I just want it out!

[silver&gold]

Hi ,
I had 2 complex cysts or endemetriomas and they grew to approx 10cm each. My cancer was found in the pathology lab after having a hysterectomy . I was going backwards and forwards to the hospital for 18 months with debilitating symptoms but each time I went to my next appointment I saw a different registrar between 6 and 8 !!! and was fobbed off . I eventually  had to leave my job as my symptoms were bad and I was anaemic and night work is hard to deal with anyway without feeling ill all the time. It is true that these cysts have to be biopsied to find if they are malignant and although complex cysts are more suspicious only approx 5% turn out to be malignant so the odds are good .
  Hope all turns out well for you .

      Take care Angiexx

[chloe08]

Hi
I wondered if I could ask how each of you got your diagnosis?   Was there a cyst that looked suspicious and if so was the doctor fairly certain it was cancer?  I ask because i have been diagnosed w/ a possible 4cm endometrioma (had a 7cm one removed that was completely benign 2 yrs ago and now only have one ovary) on my ovary.  I have a consultation w/ a gyn/onc on Wed.  I/'m just nervous that this could be something else though most of what I've read indicates that TVUS is a good diagnostic tool for endometriioma (though I know biopsy is the only definitive).

[silver&gold]

Hi,
I was dx with clear cell ovarian cancer from malignant transformation of endometriosis. I posted a message to the doctor and she said that there is some evidence that ovarian cancer found in the presence of endometriosis has a slightly better prognosis and endometrioid is better to get than the clear cell . The doctor told me to stay away from all oestrogens where possible , eat no soy products and no hrt and maintain a healthy weight as oestrogen is made in fat cells. It is important that the endo doesn,t start growing again so I try to follow as healthy diet as possible . If you are concerned that  the endo is growing again go back to the doctor and ask for more tests , I was given the run around for 18 months and wish I had been more insistant .
  
  Take care Angiexx

[nyc lady]

I know that you posted this for Dr Goodman, hopefully you posted on the Doctor forum as well....my story slightly different....I was older 38, stage 1A (not from endo) no chemo and was told that within 5 years they would take my other ovary and uterus....it was 3.5  years....I too developed a cyst on my remaining ovary and after watching for a while there was a change....so it was removed. Benign.  

I don't think that anyone can give you the odds of a recurence....this disease is so unpredictable....but being stage 1C gives  you a good shot of long term survival with a low rate of recurrence.

Best of luck to  you and let us know how it goes.

Pam