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sweiss
Posts: 5
Joined: Apr 2002

HI, I AM NEW TO THIS SITE AND JUST LOOKING TO TALK TO PEOPLE WHO ARE GOING THROUGH THE SAME THING I AM. I AM 22 YEARS OLD AND HAVE STAGE IIIC OVARIAN CANCER. I HAVE BEEN THROUGH SO MUCH OVER THE LAST COUPLE OF MONTHS AND HAVE ALOT OF FEELINGS OF ANGER IN ME AS I'M SURE ALOT OF YOU DO. I TRY TO BE POSITIVE, BUT I ALSO GET DOWN ALOT. PLEASE WRITE TO ME AND LET ME KNOW ABOUT YOU.

necia
Posts: 8
Joined: Jan 2001

Hi,
like you, I too have ovarian cancer stage 3.
I was diagnosed in the yr. 2000; I had total hyster. & started chemo right away. I had 6 "rounds" of chemo, the 2nd one & the 2nd to the last one make me sick all day. I also lost all my hair (my medical ins. refunded the cost of a wig)
That was quite awhile ago, & now I'm in my 12th month of remission.
Advice? You probly heard this before-but it's so true:
try to think positive, your hair WILL GROW BACK (why couldn't the leg hair stay away?)
try to be stress-free
just think about getting better.
it just take time.
necia

lynnk
Posts: 8
Joined: Apr 2002

HELLO. I AM 48 YEARS OLD AND HAVE STAGE IIC
I AM THROUGH 4 OR MY 6 ORIGINAL CHEMO TREATMENTS, BUT HAVE HAD A FEW PROBLEMS ALONG THE WAY. YOU ARE VERY YOUNG AND I AM SURE THAT THIS WAS VERY DIFFICULT TO ACCEPT.
I FIND THAT BEING POSITIVE IS VERY DIFFICULT
EVERY DAY WHEN YOUR WHOLE LIFE HAS CHANGED,
BUT BEING POSITIVE REALLY IS THE BEST MEDICINE. IT ALSO HELPS TO GET A SUPPORT GROUP OR TO TALK TO OTHERS WHO ARE IN YOUR SITUATION. I AM ALSO SEEING A SOCIAL WORKER
SINCE I LIVE ALONE AND NEED TO HAVE SOMEONE I CAN REALLY LET LOOSE WITH. I WOULD BE HAPPY TO HELP YOU IN ANY WAY I CAN. MY E-MAIL ADDRESS IS lshaffer@bellsouth.net/

crtsang
Posts: 105
Joined: Nov 2000

I was fortunate in having a much earlier stage of ovarian cancer than you. I imagine you're going through many of the same things I did, only more so. I also have a friend with stage IV, who was supposed to die in less than 6 months. That's now about twelve years ago, and she's going strong. Keep hope alive.
Yes, I too had a lot of anger, and fear. In fact, try as I might to be positive, I became seriously depressed. What helped me was therapy and Gilda's Club, i.e. talking with other survivors, and doing some things I wouldn't have tried otherwise (like art).
My advice? Be nice to yourself. Be supportive of yourself. It's natural to get down a lot. Don't add to it by criticizing yourself for "failing to be positive." There are lots of "negative" feelings that come with the cancer territory; don't confuse that with being negative (though others might). Find people with whom you can express those feelings. The more, the better.
Be as angry as you like. Just don't give up hope.
If this has helped at all, feel free to write me privately as well. If not, well, maybe it'll help someone sometime. No matter what, I'm pulling for you, and offer you a warm hug.
Carol

sweiss
Posts: 5
Joined: Apr 2002

CAROL,

THANK YOU FOR YOUR E-MAIL. ALTHOUGH I AM DEPRESSED I TRY TO KEEP HOPE ALIVE AND STAY POSITIVE. I'M DOING THE BEST THAT I CAN RIGHT NOW. MY BOYFRIEND HELPS ALOT BY KEEPING ME LAUGHING AND I WOULD NOT HAVE EVEN BEEN ABLE TO COME THIS FAR WITHOUT THE SUPPORT OF MY FAMILY.

THANKS FOR YOUR E-MAIL AGAIN THOUGH. IT MAKES ME FEEL BETTER TO KNOW THAT SOMEONE ELSE UNDERSTANDS THAT YOU CAN'T ALWAYS BE POSITIVE AND THAT, OF COURSE, ALOT OF NEGATIVE FEELINGS COME WITH CANCER.

THANK YOU,
STACIE

crtsang
Posts: 105
Joined: Nov 2000

Stacie, all anyone can do is their best. I'm glad you thought my message helped.
Carol

taggs's picture
taggs
Posts: 6
Joined: Apr 2002

I am new to ovca and to this site. I am having my staging operation in about two weeks. Until that operation, I will not officially be diagnosed. My gyn/onc believes that I am in the earliest stages (CT and U/S so no other tumors), but we will soon see. There is even a chance that it will not be ovca at all and my CA-125 level is elevated due to the sheer size of the mass (15cm and growing), although I am told that it is looking in nature.

Anyway, your post caught my eye. I am 23 years old. The doctor ruled out germ cell in my case... is that what you have? He said that germ cell would respond well to chemo and is the most likely form for women my age.

My mind has gone through a thousand questions... a million outcomes. But basically, I am just waiting until the surgery. I am angry that I was put off for several months because my GYN believed that I had a large functional cyst.

I know it is a small price to pay in the face of a life-threatening disease, but I am nervous about the foli and laparotomy scar that will be involved in the staging and Salpingo-oophorectomy. Any words of comfort/wisdom?

sweiss
Posts: 5
Joined: Apr 2002

Hi, I've never talked to someone who was my age and going through the same thing. It was good to hear from you although I am sorry that you have to go through all of this. I would really like to hear from you again. Where do you live? Write back soon. You can also e-mail me at zzstaciezz@aol.com

It's not fair and it really sucks! I, like you, was very angry also because I kept going to my gynecologist complaining of abdominal pain and I always saw a nurse practioner who would say it was constipation. Maybe if she knew what she was doing the cancer could have been caught in an earlier stage. I needed a complete hysterectomy and am going in for another surgery in 2 weeks.

Just stay strong. I know how hard it is. In the beginning my major concerns were the scarring from surgery and losing my hair from chemo, but know those are the least of my concerns. I am fighting for my life and there are times when I don't think I can take anymore, but be tough and you will get through it. My cancer isn't gern cell either which is what the surgeon thought it would be since I am so young. He said there was a one in a million chance that I could have ovarian cancer so it came as a big shock when that was what the diagnosis was. Why couldn't have we won the lotto instead?

It sounds positive that your Dr. thinks he caught it in an early stage and that it might not be ovca. Just try and think poitive although it is okay to be angry, because I still am!

What is a staging operation? I never heard of it. When my tumor was found I had to have immediate surgery to remove it. Please write back

crtsang
Posts: 105
Joined: Nov 2000

As "taggs" wrote, the staging operation is when they take a lot of samples from various places to determine if and where the cancer has spread. Based on that information, they decide how advanced your case is, also known as finding out what stage your cancer is. Stage 1 is very good; it hasn't spread beyond the ovary itself. Stage 4 is not so good; it means the cancer has spread beyond the abdomen, or to the lymph system. (Lots of websites can give you more accurate and detailed information than I can off the top of my head.)
Usually, staging is done at the same time as the first surgery--if they know that you have cancer. If they don't, it has to be done later. In your case, even if they didn't know for sure that it was, they may have taken the staging samples when they removed the mass anyway. I had to go back for surgical staging a few weeks after the operation that removed the ovary, because the cancer in it was a surprise.-
Carol

taggs's picture
taggs
Posts: 6
Joined: Apr 2002

Sweiss,

I couldn't stay away. I created a Web Page that includes my ultrasound picture. I have searched the web looking for similar pictures to compare mine to. Maybe, when my story has an ending, it will be a resource to someone else. Until then, I guess.

I wanted to wish you luck on your operation next week. How long will you be in the hospital? I should get out on Friday. I am scared. I guess that is normal. I have had operations before, but nothing that required a stay in the hospital. Of course, every old lady I know (no offense) has given me there horror stories about their hysterectomy. Bless their hearts, they aren't helping.

crtsang
Posts: 105
Joined: Nov 2000

Just in case you check this again before your procedure...I, too, was very scared before the hysterectomy, but it went smoothly. It took me a while before I was up to normal activities, but I've heard some people are ready to go back to work in a month. Since you're a good deal younger than I was, you'll probably heal faster than I did.
So, this old lady has no horror stories. It's scary, it can be emotionally difficult, but then so is cancer. Good luck to you.

Carol

taggs's picture
taggs
Posts: 6
Joined: Apr 2002

I am glad to hear back from you. I have no idea what anything is. I am having a laparotomy (big abdominal cut). They are going to remove my tumor and ovary. Then they are going to do biopsies of surrounding tissue, the other ovary, lympth nodes, etc... then I guess they put a bunch of water in my open cavity and suck it back out? They test the water to see if there is any cancer in that too. I was a little bit in shock and didn't understand all of it. Basically, they will know if it is OVCA by the time I wake up. Then by the time I leave the hospital they will tell me what stage I am in (1A-4). Somehow during the "staging" they will know if the OVCA is in other parts (like my other ovary) and will remove them during the surgery too. My doctor called it a "staging" because it was the operation in which he would determine the OVCA stage. I don't know if that is even a real term.

I am going to stay away from this site for a couple of weeks. I will be back in touch after the operation. The more I look at cyst/ovca sites on the Internet, the more panicked I become, so I have resigned myself to staying clear of them until I get some answers.

Talk to you soon.

sweiss
Posts: 5
Joined: Apr 2002

THANKS FOR WRITING BACK. PLEASE LET ME KNOW THE OUTCOME OF YOUR SURGERY. I HOPE ALL GOES WELL. I WILL ALSO BE GOING IN FOR SURGERY ON APRIL 24TH. THIS IS MY SECOND SURGERY AND THEY ARE GOING TO TRY AND REMOVE THE REST OF THE CANCER. GOOD LUCK!

als26
Posts: 48
Joined: Feb 2002

Hi-
I wanted to let you know that My mom was diagnosed with State IV OC.. I'm not sure what type, but I want you to know that she's currently on her way to remission.. At first the doctor's said it doesn't look good.. then she started chemo.. She's responding extremely well.. Her 10cm tumors have shrunk and the doctor just did a total abdominal hysterectomy. He removed 99% of her cancer.. She has a little left that will disappear with the chemo... She's seeing a gynelogical oncologist.. He was her surgeon too. He saved her life! So, hang in there, and don't get too down.. Just know that there is light at the end of this long tunnel.. Try to stay positive, because I believe it truly does make a difference. I still cry once in a while, but I try to stay focused. How did you know you had OC.. Were you bleeding, bloated?

Take Care,
ALS26

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