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New here - 19 year survivor and recently dx mother

Posts: 46
Joined: Dec 2012

Hi. I am a 19 year survivor of ovarian cancer - dx in 1993 (I was 25 years old, and i am 45 now) I had and immature terratoma germ cell tumor, stage 1, grade 3, found in an dermoiod cyst. I was pregant at that time, and went through 3 rounds of chemo - cisplatin, bleomycin and etoposide. I tolerated it well, and have been fine ever since. They say I am cured.

My mother is 73 yo, and was dx last week w/ ovarian cancer, most likely stage IV, as it has seemed to spread all over her abdomen according to cat scans. The surgeon is waiting for final biopsy result, and then thinks chemo first, surgery, then more chemo. We are in waiting mode right now - they sent her home from the hospital to wait for her next appt. in one full week to discuss tx options. Her stomach is HUGELY swollen, she can barely eat, and her abdomen is full of fluid. She was tapped once (2 liters removed) a few days ago, but unless she isn't eating at all , they don't want to do it again. I am terrified for her, but have been finding stories of hope that even stage 4's can get into remission. I just have not read much about others being so full of fluid. And, why is this taking so long? I am just imagining the cancer spreading by the minute while the doctors are doing nothing. We are treating at brigham and womens in Boston, so I know we are in good hands.

Any words of encouragement greatly appreciated. I am a wreck. And if I can encourage anybody else regarding my 19 years of cancer free from my own OC, I would be happy to. According to the onco, what I had, and what my mother has, are two very different things.

Thank you.

Posts: 93
Joined: Oct 2012

Congratulations on your 19 years in remission. That is awesome. Catching it early helps a lot. I am sorry to hear about your mom. I can tell you that I was stage 4 when I was diagnosed and full of ascities fluid. This was Aug 2010. The Dr had to drain quite a bit of fluid. My surgeon went in a week after diagnosis and drained the fluid and removed the ovary only. This was done laproscopically. Then I went on chemo for 3 rounds and then went back in for a second look and the full debulking surgery. Again done laproscopically. It is common to have this fluid build up. My guess is they are waiting a week to come up with a good solid plan. I wish your mom all the best. I know it is tough on her as well as you. BTW I know a women that is 75 and she was diagnosed stage 4 OVC this year. She had chemo, surgery, chemo and just finished her last round. She had 8 rounds total. She is doing VERY well and her marker is at 11. She will have a follow up CT scan in 3 months but she feels great and her hair is starting to come back already, Please keep us posted on how your mom is doing and how you are coping!!!! Sending positive thoughts, love and light to you both! Michele

lovesanimals's picture
Posts: 1364
Joined: Sep 2011

I know that the waiting can be torture. When I was diagnosed, I wanted my surgery that day so that the doctors could get all the bad stuff out right then and there. By the time I did have my surgery, I looked like I was seven months pregnant and could only fit into one very loose skirt. Your mom is so lucky to have you, a 19 year survivor, by her side. Sending lots of good thoughts and prayers to both of you as you await the next step.


kimberly sue 63's picture
kimberly sue 63
Posts: 421
Joined: Apr 2012

You give us great hope to be a 19 year survivor. And your mother is lucky to have you by her side. Once step at a time. Stay strong!1 Kim

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