Clear-Cell Adenocarcinoma (ovarian cancer) - any advice?

[Sarahen]

I am 41 years old and I have Stage 1C ovarian cancer-- clear-cell adenocarcinoma.  Due to a spill during my original surgery (to remove a large, complex ovarian cyst), cancerous cells were spilled into my abdomina cavity.  Hence the "C" after Stage 1.  I am now facing an uncertain future.  Everyone around me wants me to find some bright side--as if the cancer will decide not to make any new tumors if I think positive thoughts.  I'd rather be realistic.  I want to make the most of my life, but the odds of long-term survival are unclear, and a cure is almost certainly impossible.  I do hope that research will yield new breakthroughs while I still have time, but I have no idea how much time I've got.

The information I've been able to find online indicates that outcomes for clear-cell adenocarcinoma are "poor" compared to other types of ovarian cancer (as if regular ovarian cancer weren't bad enough!)  Also, none of the studies seems to even track survival rates beyond five years.  Why?  I'm sure SOME patients must live longer than that.

I've had a radical hysterectomy, plus removal of all lymph nodes and omentum.  There were no other tumors, but the cancer IS loose in my system, so I'm going through chemotherapy (taxol and carboplatin.)  After the chemo, I'm not sure what to expect.  Eat lots of vegetables and wait for new tumors to show up on a PET/CAT scan?  That's it?  Wait for how long?  How "poor" are my prospects, since I have clear-cell?

Has anyone out there had clear-cell adenocarcinoma ovarian cancer?  Does anyone have any advice?

[doicat]

Oh Sarah:

Please don't let the dire articles on our cancer get to you!  I have also researched this cancer to death (excuse the pun, me and my dark humor!) and after reading the words "dismal" in an actual medical journal made me ill!  To Heck with that!  I have since learned that the articles just are NOT what is actually going on with those with clear cell.  It's just because we are such a small percentage of OVCA that there are just no real numbers that have been studied.

You need to contact "silver and gold".  She is also an early stage clear cell and will give you good advise on all of this.  There is also Teresa222, who is clear cell 2c? I think.  She is an absolute ROCK!  You need to hook up with her also.  

Yes this type of cancer is rare and because of that, there has not been a lot of studies.  Most are coming out of Japan where this type of cancer is much more common...why?, that is something that would be interesting to find out.  

The only thing that I can tell you now, with you just starting this is...keep on you doctor's back!  Don't let him peg hole you into the "standard".  Keep pushing him to look at YOU and your cancer.  I would highly recommend that you push for a CT after the third chemo of carbo taxol, and, of course keep up and watch your ca 125. Ask your onc if he/she thinks this is a good marker for YOU. If and when he/she suggests something always ask "what else?"  I mean, the ONC is working for you!  Ask for OPTIONS. Don't just go down the road with the standard!

Please feel free to PM me anytime!  I have also found many other clear cell ovca ladies on another site...(I lurk elsewhere sometimes).  I'd be happy to send you the link to them also.  It kind of felt good to see so many others with clear cell out there, also looking at things!  Think there was one lady there who has been on a low dose of Doxil for 8 years???  I'll find the link tonight.

Honey, don't give up hope...don't ask for prognosis yet (What the H**L do they know)...you are too new in the game to do that.  Your stage is early, and you are young and strong!  You can get through this thing!  

Hugs to you and your precious girl!

Doicat

[silver&gold]

Hi Sara,  as Doicat mentioned I am a survivor of early stage 1 Clear cell . I was diagnosed in April 2005 and had 6 carboplatin and paclitaxol chemo treatments . I know most of the information (although very little) is very scarey but I agree with Doicat that its not actually what is going on with Clear cell.
Please read internet articles with a certain amount of trepidation because Clear cell is fairly rare and so there is not very much statistical or accurate information available .
Did you have Endometriosis found  when you had surgery? I ask this because my team of Oncologists in the UK have told me that my cancer was Endometriosis that had turned malignant , there have been a few reports in Japan that endo found alongside Clear cell OVCA has a more favourable prognosis.
Please do not feel that it is a hopeless situation , I was really terrified when I learned I had this blasted disease ! . I was really worried because my omentum and my lymph nodes were not sampled during surgery ,but my Oncologist has told me that the chance of reccurance is small now . Luckily for me the CA125  is a reliable marker to track a reccurance , as Doicat said ask your Oncologist if yours are reliable .            
Please feel you can  send me a message anytime , if there is anything I can answer or you are just worried and want to talk like Doicat Im here for you.

Take care

Love Angie

[Teresa222]

Sarah,
I am another of the Clear Cell OVCA fighters out here.  Doicat and Silver&Gold have given you excellent information. Of which, there is not much for me to add.

I was dx in Oct. 07 and got the standard first round of chemo: Carbo/Taxol.  I found out afterwards that I was Platinum Resistant just like Doicat. But, mine was to late for them to change the chemo cocktail for me. I had a tumor show up two months after I completed the first round. I had additional surgery with EVERYTHING going wrong. I was in the hospital 35 days. What we are trying to advise you of is that it seems many Clear Cell ladies are resistant to Platinum.  You need to PRESS this issue with your ONC when you start your chemo. Also, the CA125 does not seem to be very accurate with me because all the time I was showing 6's and 9's, I had this big, fat tumor growing inside me just above my cervix.  I won't go into any more details on my treatment for now. I know your head must be spinning with all you are trying to digest.

Can you tell us why the doctor said the tumor burst?  Did you have a GYN/ONC do the first surgery. I hope that is the type doctor you now have you treating you. That is very important. They are the most educated and trained with OVCA. My ONC only sees women with cancers below the waist. That is how specialized the field has become.

If I can be of any help to you, please let me know. Keep us informed as to how you are doing.
Teresa222