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cancer free 9 years from dysgerminoma

jessyann's picture
jessyann
Posts: 4
Joined: Feb 2012

Hi I just joined and when I was first diagnosed with stage 2 dysgerminoma Praise GOD I didnt have to have any type of treatment because it was all removed with surgery. there weren't any support groups around. I was 18 when I was first diagnosed. My Dr said dysgerminoma is very rare and rarely ever comes back. I would love to talk to anyone who has concerns or questions just because I didn't have anyone to talk to about this.

lovesanimals's picture
lovesanimals
Posts: 1222
Joined: Sep 2011

I had to google "dysgerminoma" because I had never heard of it. I found out it refers to a germ cell tumor, usually occurring in the ovary and to a younger woman, as you already know. I'm very happy that you've been cancer-free for 9 years and we welcome you to this board. Thank you for being willing to share your story!

Kelly

jbeans888's picture
jbeans888
Posts: 313
Joined: Mar 2011

Welcome! I haven't heard of your dx either. Did you do chemo at 18yrs old?

tatem222
Posts: 3
Joined: Dec 2011

Thank you for coming back to this board and congrats on being cancer free. I was diagnosed with dsygerminoma in December 2011 and have completed two of my four cycles of BEP. When I received my diagnosis, I actually learned the most about the BEP chemo regime from the testicular cancer pages as they follow the same regime. It is always encouraging for me to hear from survivors. What stage were you diagnosed at? Did you go through chemo?

Ashley

Kook
Posts: 9
Joined: Oct 2012

My 21 year old niece just finished her her fist week of treatment at Sloan NY BEP Stage 3. We would love to talk anxious and worried

jessyann's picture
jessyann
Posts: 4
Joined: Feb 2012

Hello everyone, it has been a while since I have been on here. Going through a new season in life after being Cancer Free for 11 years. I just recently went back to my oncologist for a check up and I have been having horrible mood swings hot flashes night sweats and constant cramping and my Dr believes I may be going through premature ovarian failure since I still have one remaining ovary, I was wondering if anyone else has experianced anything like this. I go this next week for a transvaginal ultrasound to see if my ovary is still working or has stopped. If it has stopped I will be looking at a complete hysterectomy which by now I would welcome since my family is complete with 2 growing little boys. Thanks Jessica

me_and_my_mom
Posts: 44
Joined: Dec 2012

Hi Jessica,

 

I am a 20 year cancer survivor  - I had an immature terratoma. They said it was a germ cell tumor - it has been so long I am starting to forget the specifics! It was removed surgically, then I had 3 months of chemo (BEP protocol - just like in testicular cancer). I've been fine ever since - it's like a distant memory. I had both ovaries removed though, because the one they were going to leave behind was so damaged from previous (benign) cysts and surgeries it was non functioning anyhow. I was 25 years old, and am 46 now. I went into immediate surgical menopause w/ surgery, so have been supplementing w/ bioidentical hormones ever since w/ good results. It's hard to find an MD who is knowledgable about them, and then you have to have them made at a compounding pharmacy, but it's worth it. 

I have two boys also - my oldest was 2, and I was pregant w/ my second when I was dx w/ OC. I went through the surgeries and chemo while pregnant w/ him. He was born 8 weeks after I finished my chemo, and he is 20 now, and fine. We thought we were done having children, and were so grateful to have been able to have 2 - but as the years went on, we felt something was missing. WE adopted our daughter from Korea when the boys were 7 & 10 - she is 13 now. 

If your ovary is not working, will you have your uterus out as well? I wish I had mine removed, then you do not have to worry so much about balancing the estrogen w/ enough progesterone.

Good luck to you!

me_and_my_mom
Posts: 44
Joined: Dec 2012

Hi Jessica,

 

I am a 20 year cancer survivor  - I had an immature terratoma. They said it was a germ cell tumor - it has been so long I am starting to forget the specifics! It was removed surgically, then I had 3 months of chemo (BEP protocol - just like in testicular cancer). I've been fine ever since - it's like a distant memory. I had both ovaries removed though, because the one they were going to leave behind was so damaged from previous (benign) cysts and surgeries it was non functioning anyhow. I was 25 years old, and am 46 now. I went into immediate surgical menopause w/ surgery, so have been supplementing w/ bioidentical hormones ever since w/ good results. It's hard to find an MD who is knowledgable about them, and then you have to have them made at a compounding pharmacy, but it's worth it. 

I have two boys also - my oldest was 2, and I was pregant w/ my second when I was dx w/ OC. I went through the surgeries and chemo while pregnant w/ him. He was born 8 weeks after I finished my chemo, and he is 20 now, and fine. We thought we were done having children, and were so grateful to have been able to have 2 - but as the years went on, we felt something was missing. WE adopted our daughter from Korea when the boys were 7 & 10 - she is 13 now. 

If your ovary is not working, will you have your uterus out as well? I wish I had mine removed, then you do not have to worry so much about balancing the estrogen w/ enough progesterone.

Good luck to you!

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