my fight with ovca

kayandok

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

hosslady

Ovarian Cancer, to kayandok
I would reccommend a second opinion. John's Hopkins says that 95% of an ovarian cancer patient's survival rate is the surgeon.

I have had a great oncological gyno surgeon from Vanderbilt, who is Dr. Gautam G. Rao (pronounced like "now"). He's now at Centennial Medical Center. Email him at www.tnoncology.com or call (615)986-7660.

I have never met a more caring, honest and positive surgeon. He is CALM and I love his caring staff, one nurse even gave me her home phone numbber, and I can call them anytime with a question or concern.

Don't just go along with a Dr. if it doesn't feel right.

God bless,

hosslady from Tennessee in remission from Ovarian and endometrial cancers.(5 1/2 hr. surgery)

saundra

Conservative Japan
I have a son in Japan with severe arthritis of the spine and find that though Japanese medical care is good, sometimes it is minimal or conservative. I think I would want another opinion also. Generally, the treatment in the US is consistent. I also think that the surgeon is important. Welcome to the board and come back and share more often. We need others over the world sharing their experience. You never know when you will say just the right thing to help someone else. Saundra

kris43

pelvic tumor
I had a friend who was diagnosed in Jan of 2007 with stage IV ovca - she could not have surgery because the tumor had attached itself to the pelvic wall. She did 4 rounds of chemo and it shrunk enough to then do surgery - continued with chemo, but complications soon enough took over and she lost her battle June 1, 2007.

I think if the tumor really is attached there are too many risks until the get the think shrunk down. But follow the advice of the others - if she can come to the States as you did - then maybe somebody else will be able to help.

Best of luck and thanks for sharing your story!

Kris

green50

Been there
Yes some tumors cannot be removed unless they can shrink them. I have taken gemzer and carbo but not those two together. Gemzar didn't help me but it is a milder chemo and not as bad side effects neither gemzar or carbo make you lose hair but can eventually give you fatigue. I too would have a second opinion. I didn't and when I was alergic to a medicine I went to an emergency room and they did all kinds of test and all I thought I needed was benadryl. The pathologist said it looked like I had precancerous conditions. I went to my dr. IN Florida at the time and he said there is nothing there. That was in 98, in 2002 I had stage 3 ovarian cancer and if I had a second opinion in 98 I may not have had to go through this. But thats hindsight. Anyway your friend is wise to get the second opinion. I really like the cancer center in Muncie Indiana. My prayers to you and your friend.
Sandy Green

kayandok

Thanks
Thanks everyone for your input. I really do appreciate it.

k

saundra

kayandok said:

Thanks
Thanks everyone for your input. I really do appreciate it.

k

come back soon
Come back get to know us. We hate to have you join our group but love the sisterhoon. Hugs to you.
saundra

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