Ovarian Carcinosarcoma

   My wife was Dx with Ovarian Carcinosarcoma IIIc and a secondary Primary Brest Cancer stage 1 on 03/29/06. During the 8 .5hr surgery to remove a 18c x 11c x7c tumor they also found that it had invaded her Colón.. After chemo of Caisplatin ever 3 week for 6 rounds  her CA 125 was <5 it never was over 35. Before starting Chemo she had a Lumpectomy on her Brest and a port  placed in her Right Shoulder..

    It has now been21 months since she was Dx  and she is doing Grate. She had her 3 month checkup yesterday and the OB/GYN/ONC  said that he could Feel or see anything at all. We are waiting for the CA125 that should be Back on Friday.

    All that I have read doesn’t paint a very bright future for her, to have even have made it this long is a wonder, based on studies. If you could see her you would not know that she had this Beast.     How having said all that is there a chance that they could have miss Dx her as far as the Carcinosarcoma  is concerned?

I'm sorry to hear of your wife's battle with cancer.  I am a 3 year survivor of ovarian cancer stage 3c.  At times I  myself have wondered if I was miss diagnosed.  So, I went to medical records and asked for my operate report, and any lab's, procedures, and most important pathology.  She is probably in remission.  This is different from "cure."  Think about a tulip bulb.  It's planted when the ground is cool but can't bloom until the sun  and the rain triggers it.  Then it starts growing (tumor).  Then it stops growing and becomes dormant (remission).  If the cells do not grow back for 5 years then we would figure that the bulb (cancer) was completely dead "cure".   

I hope this helps.  Remember your not alone and remember this is a battle.

Hi!

My mom was diagnosed with a stage 3C ovarian carcinosarcoma in June of 2007.  After surgery and 6 rounds of ifosfomide and cisplatin, she is now showing "no evidence of disease."  There is a great yahoo list for uterine and ovarian carcinosarcoma or MMMT (the old term for this rare and aggressive cancer.)  We share our experiences but also have members who troll the internet for the most recent research - you might want to check it out.

All the best,

Christiane in OR 

Hi Jo,

So far no kidney problems, but 2 bladder infections.  I believe that one takes the drug Mesna concurrently with ifosfomide to protect the bladder and kidneys.  Unfortunately my mom's doctor only does a CAT scan every 6 months and the CA 125 test every 3 months.  From everything I read, it would be much better to have the CAT scan every 3 months, at least for the first 2 years.  On the yahoo list, there are women who have had recurrences without an elevated CA 125 and it was caught by a CAT/PET scan.  We are encouraging her to look at getting treated for any future recurrence at a different institution.  She was operated on and received her chemo at Robert Wood Johnson in New Brunswick NJ - they managed to knock her cancer down, but the patient care was lacking in warmth and cohesiveness - she had a different doctor for almost every chemo treatment.  Because she and my dad are in the NY metro area, they have access to numerous large and  well-known hospitals.  It is always encouraging to hear from women who have managed to beat this disease back and I wish you continued success in the future.

 All the best,

Christiane in OR

PS: you can see a photo of my mom on our farm website: www.northvalleyfarm.com