my fight with ovca

Hi everyone, this is a great board and I have learned a lot by reading for a few months. Thank you for sharing your stories, thoughts and feelings. Even though I have not participated until now, I have been moved, helped and encouraged. I decided to introduce myself and tell you my story briefly (not sure if that is possible). It seems everyone's story is unique and yet so many of the feelings/struggles and the "fighting spirit!" is so much the same.

I live in Japan (this is my home now for 30 years) and was dx with OVCA 3C on June 26th, 2007. I will never forget that day. I was in recovery after a 3 hour surgery to remove two 4 cm cysts on my ovaries. The very sweet older doctor, professor of Gynocology, took my hand, looked into my eyes and very matter-of-factly, in perfect English said, "I'm sorry to tell you that you have cancer." I looked up and asked him what stage. "He said, 3C. We will begin chemo right away." As he quickly disappeared, I felt like he had dropped a 300 pound boulder on my stomach and left me there to die. This was the last thing I expected.

Now, 15 months, 10 1/2 cycles of chemo and 3 surgeries later, (not in that order) I am here to say that I did not die and in fact am feeling pretty good. As of June 2008, I am NED and enjoying every day of my life as a special gift from God.

I did want to share one important thing. It was a board, very much like this one that saved my life. After the first surgery and 2 cycles of chemo, my numbers went down, but I became very uncomfortable, I knew the cysts were growing (they didn't remove the ovaries or all of the cancer). A CT showed that, sure enough the ovaries had grown to 10cm and were pushing on the ureters, making my CRE (kidney count) go way up. So, at that point, the onc suggested I try another chemo. I just had no peace about the whole treatment plan. Meanwhile, I had been doing a lot of reading on many boards and sites about OVCA. I briefly shared my story and questions. Someone encouraged me to get a second opinion. I flew to the US, got a second opinion, a total debulking and hysterectomy including lymph removal. I came back to Japan and did carbo/taxol for 8 cycles. Then, after that, I went back to the US and did second look surgery and everything was clear. Pretty aggressive, but somehow I came through realizing how strong that desire to live and fight for your life really is!

Recurrence is certainly on the horizon, I'm sure, but I don't dwell on that. At the same time, I am reading all of your stories and all the info I can to prepare myself for that day when/if it comes.

Meanwhile, my very good friend J, who also lives here and has also been on this OVCA journey is having a recurrence. On that note, I do have a question for anyone who has had recurrence and did surgery to remove any tumors. She has one 7cm tumor sitting on her pelvic bone. She has had a PET/CT and MRI and the doc is not sure if there is any tissue between the tumor and bone or not. In any case, the Japanese gyn/onc says it is too risky to try and remove the tumor, and only recommending chemo. He is recommending carbo/gemzar, as toxol will be too toxic for her. (She still has a lot of neuropathy from the first treatment of 4 rounds of taxol) Any experince with this kind of thing? What is the general feeling about what a US gyn/onc would do? She is Canadian and is seeking a second opinion now, but is pretty sure he would say the same thing the Japanese doc is saying.

Any input very welcome.

Thank you again for allowing me to share my thoughts, and I'm sorry this is so long.

k