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Dysgerminoma

jesper
Posts: 1
Joined: Oct 2000

Hi, Denmark calling.
Does anybody have experiences with the diagnose Dysgerminoma??
My wife has it, with a few metastases..
she has just begun chemo - and is pretty scared of it..
Hope you have experiences you'd like to share..

yours jesper

joanna's picture
joanna
Posts: 15
Joined: Nov 2000

Hello Jesper,
I was diagnosed with pure Dysgerminoma. I was told that this type of cancer is rare. Is your wife young? Dygerminoma usually hits teenangers and young 20 year olds. I was diagnosed with this in 2000 at the age of 29. I was told that I probably was one of the oldest to get this cancer. The stage they found the Dysgerminoma was stage IIIc. I had surgery-they removed 1 1/2 of my ovaries and some lymph nodes (mines also mestasized). After surgery I went through chemo. The chemo I had was called BEP regime(Bleomycin,Etoposine(VP-16), Cisplatin. Dygerminoma cancer cells is extremely sensitive to BEP chemo. Tell your wife that is very good news. From my personal study of this regime I found that the rate is 95-99% that the chemo will work against Dysgerminoma. Take It Easy *PEACE*

rachel5's picture
rachel5
Posts: 2
Joined: Oct 2001

hi joanna i also at the age of 28 was diagnosed with dysgerminoma. I had a complete hysterectomy with apendix and lymph nodes and omentum removed also. other stuff too i think. I was staged at a 1a. My onc claims I do not need chemo or radiation. We are playing the wait and see game. My tumor was 13.8cm! I also was told that my cancer was extremely rare, but with very high cure rate. write me if you would like..rachel5@epix.net

Lgabelhartman
Posts: 1
Joined: Nov 2003

Rachel, Jesper, and Joanna,
I am so glad I found you. My sister had surgery to remove an ovarian dysgerminoma and just started chemo last week. She, too, is having BEP. I'm really interested in knowing about your experience with BEP. She is having a really tough week. One of her kidneys began to underperform.Any info I could pass along to her would be appreciated. She knows no one who has had this chemo regimen or even a dysgerminoma.
Thanks,
Laura

joeyb
Posts: 2
Joined: Dec 2003

my wife is 33 and just finished 4 cycles of BEP for dysgerminoma that went to the bone. It was hell but se made it through. Now she is doing radiation. Love to talk more let me know if you have questions.

joe

gina71
Posts: 1
Joined: Apr 2004

Dear Joey I too just yesterday was told I have dysgerminoma. It is scarey because I went in for what I thought was a due date for a pregnancy. I had the ultra sound lady leave come only to return with a doctor who then sent me to another one thinking it was a cyst. Please let people know it is not only occur in young adults but also us over 30. I am 32, single mother of 3.

Kook
Posts: 9
Joined: Oct 2012

Hi would love to talk my niece has this stage 3 and is being treated at Sloan.

Redrosie
Posts: 1
Joined: Jan 2013

Hi, I just wanted to say that my step-daughter was diagnosed at 16 with ovarian dysgerminoma. Her left ovary was the size of a football the normal size is more like an almond. She had her left ovary and fallopian tube removed. She had no other treatment but her CA125 is and was being monitored. She is now 40 years old. This type of cancer has a very good prognosis. I thought this would be helpful information.

sera0406
Posts: 3
Joined: Nov 2009

My sister, 36 yrs old, has been diagnosed with Dysgerminoma Stage 3 C
[Lymph node & Peritoneal fluid & gutter washing: positive for malignant cells]. Her left ovarian tumor [20*20*10cms] was surgically extracted last week. We have been advised to undergo the BEP chemotherapy after a month.
Pls. advise us on information that you all may find useful at this stage.

shanta20
Posts: 1
Joined: Jan 2010

Hi!
I was diagnosed with dysgerminoma stage 3C. I underwent salphingooophorectomy removing my right ovary and 2 implants.
Then I had carboplatin and docetaxel chemotherapy for 6 months then second look operation.
I have ct scan evry 6 months afterwards.
The chemotherapy ended on October 2008 and this month I had my CT scan.
Sadly, the result is that there is a possible recurrence and i have to undergo treatment again. But my doctor said that I may opt to have chemotherapy or radiotherapy.
Radiotherapy's side effect is that I will never bear a child anymore.
Tell your sister to have faith.
There is new approach to cancer now if she would like other option.

Please see the website of Fuda Center Hospital in Guangzhou China.
I may opt to have medications for the recurrence there.
I wish your sister well.

sera0406
Posts: 3
Joined: Nov 2009

My sister, 36 yrs old, has been diagnosed with Dysgerminoma Stage 3 C
[Lymph node & Peritoneal fluid & gutter washing: positive for malignant cells]. Her left ovarian tumor [20*20*10cms] was surgically extracted last week. We have been advised to undergo the BEP chemotherapy after a month.
Pls. advise us on information that you all may find useful at this stage.
Regards,
Sera

Jillsbartlett
Posts: 1
Joined: Feb 2004

Hi Jesper -
I am 32, and was diagnosed with dysgerminoma in Sept. 03. Apparently I'm old to have this type of cancer. I had 1 ovary removed, and did 4 rounds of BEP chemo (though they stopped the bleomycin after 4 treatments because I was having lung problems). I finished chemo in January and all my test results have been normal since November, so it appears the chemo worked. Chemo was difficult - I had some complications with blood clots attached to my mediport (but I'm fine now). I'm grateful to be on the other side of chemo!

How is your wife doing? Is she done with chemo?

I think my biggest frustration has been that there's so little written about this rare type of ovarian cancer...I wanted so much to find something I could read about it (there are about a million books out there about breast cancer - why is there nothing about dysgerminoma?).

I have heard that even if the cancer has spread, it's still 96-100% curable with BEP chemo...

Jill Bartlett

candyk's picture
candyk
Posts: 2
Joined: Mar 2003

Hi, Jill-

I share your frustration! I was diagnosed with dysgerminoma 14 years ago when I was 15. Being so young at the time it never occurred to me to try to get more specific information about dysgerminoma. My doctors inundated my family and I with general cancer info and chemo info, but nothing specific to my type of cancer. At the time it was more helpful than nothing, but as I have gotten older, I have continued to try to find dysgerminoma info, but have not been successful. A couple of weeks ago I visited with a gyn/onc after a few years of only seeing a general practioner, and he was not much help with dysgerminoma info either. At least he had heard of it (I always have to inform new doctors about the type of cancer I had - I move a lot...).

One thing you might find interesting is that though my chemo treatments happened 14 years ago (I had 6 rounds; I was stage III), I had the same drugs you did. I guess I am living proof that they are a good combo!

Good luck with your follow-ups.

Candy Mickels Mejia

startwinin7
Posts: 1
Joined: May 2009

Dear all I found your stories about dysgerminoma from the American Cancer Society
web site.I am a Sri Lankan and my girl friend was
diagnosed with a similar type of disease. Now she is taking the BEP
combination of cheamo drugs. Hope that you all are long term survivors of
dysgerminoma. We are expect to listen your experiences about the above
disease. Hope that you will in contact with us to sharing your
experiences.
My email is startwinin7@gmail.com
Thanks

sera0406
Posts: 3
Joined: Nov 2009

Hi,
I'm enclosing a few experiences that were shared with me by some really wonderful people, who have been there and overcome it.
Take care,
Suraj

stephwetz
Posts: 1
Joined: Aug 2005

I too have a dysgerminoma. I had a tumor form on my ovary right after my son was born. They removed it but did not do chemo. Now two years later it is back on a lymphnode. I am starting chemo this week. Tell her to have faith in God and realize she can't control this. It has brought me peace to leave it up to God.

andreat6777
Posts: 6
Joined: Apr 2002

Dysgerminoma became a part of my life on 10/7/1986 at 9 years 4 months old. I had an exploratory lap and they had no idea cancer was going on. I was rapidly sent to St. Jude Hospital where a lot of tests were done--no signs of disease but because cells were on the edge of samples they wanted to repeat some biopsies. Biopsies were done and all looked clear. They opted for observation. No chemo.

Fast forward to Fall 1992. I was 6 years out and they believed it gone for good. Unfortunately I had been feeling awful and my mom was a bear in regard to my health. She insisted I return to the hospital before my first scheduled yearly appointment. In assessment triage they noted my BP to be insanely high. Systolic was up in the 200's and the diastolic (?) was in the 140's. There was an immediate suspicion a kidney was related and subsequent scans proved it.

Even then they believed I had a swollen lymph node but after a surgery with a urethroscope showed injection of dye coming out in a squiggly manner the urologist suspected tumor. I remember lying on the ct scan table having to drink the contrast straight and it being injected too. I overheard the doctor's anger at my having been told it wasn't dysgerminoma.

That was Nov 1992 and the Internet wasn't available so I didn't know my odds, knew no one else with it, and just assumed I wouldn't make my 16th birthday. I began Bleo, Cisplatin, and Etiposide about one week after the surgery to remove my affected kidney. My relapse was called stage IV yet after tumor board they elected not to do radiation and to leave my left ovary. I finished 2/15/93 and my 16th birthday came that Summer, then 17th, then 18th. Before I knew it I was 30 years old and had missed a lot out of fear of cancer coming back.

During treatment my menstrual cycle stopped and we were afraid cisplatin would cause infertility--actually I returned to St. Jude last week for their St. Jude for Life study and was told this was a possible sife effect. The side effects specific to these therapies seem to not have affected me too badly. My husband and I married in Aug 2002, our son was born in Dec 2003, and our daughter came along in July 2005. My poor husband had a vasectomy when our daughter was six weeks old because he said I would continue popping them out every 18 months lol. I do have very slightly elevated cholesterol that could be genetic or because cisplatin remains in the system apparently forever.

I have a complicated medical history in regard to also having something called Cowden Syndrome but for the problems known to be associated with BEP therapy my lung function is normal, heart seems ok--beats fast but regular. I do have SOME hearing loss in my left ear but it's higher tones and I have a little problem in conversations BUT it's not so extreme I need an aid. They said my brain has probably learned to compensate for the sounds I miss. The biggest thing is I don't hear birds any more lol. I'll take it.

So I had a metastasis to my kidney, took BEP from Nov-Feb, and am now approaching my 34th birthday (I just passed EIGHTEEN years off chemo--not bad for a girl who believed she wouldn't make 16). The biggest thing is my hearing and who knows--that could have been caused by the rock concerts my husband used to drag me to! Well, and my cholesterol is a little bit of an issue but not too bad yet.

Jenny1979
Posts: 1
Joined: Apr 2011

I too have recently been told I have dysgerminoma...not sure what treatment will be...find out wednesday. I am 32 but I also have thyroid cancer and was diagnosed at 26. I never thought that within such a short period I would have two separate cancers! I had my left ovary removed and will find out Wednesday the plan. Any advice would be great!

mzchichi719
Posts: 2
Joined: May 2011

Hi all, old original post but glad to see recent posts.
I am 24 years old and was diagnosed w/ ovarian cancer this January (2011). I had surgery to remove the tumor along w/ my left ovary and fallopian tube. I had chemo from Mar 2011 to May 2011, BEP 3 rounds (3 weeks each, a total of 9 weeks). I tolerated the chemo very well, and also they have very good anti-nausea meds now. They gave me Emend, Zofran, and Aloxi during my chemo infusions. Then they gave me Compazine and Ativan to take at home as needed for nausea.

My side effects included:

Ringing in the ears (started after first week). I don't think it has affected my hearing. I take vitamin E everyday because I hear it helps w/ neuropathy and ringing in the ear is damage to hearing nerves in the ear. It's from the cisplatin and it's been 2 weeks since my last dose of cisplatin and the ringing has gotten better and hopefully will disappear.

Skin changes (started in the first week). Randomly I would get itchy spots on my skin that starts of red (but not raised). After a couple of days it becomes just some dark streaks and not itchy anymore. This is most likely from the bleomycin.Nothing you can really do about it, I hear that the darkening will go away. I got it in a few places on my neck and on my upper arm and back. There's also random darkening of the skin on my fingers and palms. Be very gentle on your skin because any scratches or marks became dark and have not yet gone away for me. Also skin on the knuckles of my toes darkened.

Sores. I got some sores on my heels from a pair of shoes that I've always warn without a problem, although they're not the MOST comfortable shoes. I started wearing flip flops and now they dont hurt much anymore but the sores are still there (not open sores, but dark like a bump). Then I noticed another one on my elbow and know that's not from any kind of clothing. Myabe they pop up where there's extra skin? Again be gentle to your skin.

Hair loss (started in the 3rd week). It was noticeably thin a few days after it started (it goes fast). Shave it as soon as it is noticeable to others and you don't feel comfortable without a wig. It is much more devastating watching all your hear fall out and spending 15 min after each shower cleaning up the bathroom. It's scary to shave it at first but after I did it i felt soooo much better. Get a wig, wraps, etc. My eyebrows thinned the tiniest bit I think- so little i'm not sure. And my eyelashes thinned. I'm Asian so not like I ever had long thick lashes anyway :) Hair fell out for the rest of my body.

Nail changes. My nail beds became dark and streaky. So I started painting my nails :)

Taste change. Everything was bland, especially salty things, around the 6th week. I would literally eat salt and not taste it. Only lasted for about a week, which is great bc I love food.

Thrush. I had Thrush around the 6th or 7th week (like a yeast infection in your mouth) It's a white coating on your tongue due to low immune system from chemo. Had to use a mouthwash 4x a day to get rid of it - may have been the cause of my taste change.

Fatigue. I got really tired on the long weeks where I got treatment 5 days in a row. On weeks 2 and 3, I only got bleo on Mondays so I would feel a little tired monday and tues.

Nausea. I never threw up at all. I felt nauseated the weekend after the long weeks, I took the take home anti-nausea meds which helps. They have really good anti-nausea meds now.

Hard stool - take stool softener when you notice it. i never had constipation though but I heard alot of ppl experience it.

Low white blood cell count. They were always low on the 3 week so that week I would have to get neupagen shots. Counts raised again by the following week. However, neupagen shot side effect include bone pains, my lower backbones and my sternum were throbbing so badly.

Today was my last treatment woohoo! Now im just waiting for my hair to grow back, which I hear takes a while. I hear it could grow back wavy which would be cool. I'm paranoid that it won't grow back or will be thin but I think it usually grows back pretty much as thick as it used to be I am keeping my fingers crossed. This was the most devastating part of the entire thing for me, being a woman and all. I used to love my hair. At least it's temporary.

That's all I can think of now sorry for the long post. I will update if I think of anything else. You can also send me a msg if you have any questions and I can share my email address.

Hope this helps - It's such a rare cancer it's hard to find much forums about it.

salterduo
Posts: 1
Joined: May 2011

Hello!

I currently have been diagnosed with stage 3 c dysgerminoma with an area of metastasis. They had to take both my ovaries (making me infertile) but at least they got the cancer. I am having to have chemo BEP just like you and I start tomorrow for the first five days. It is so nice to see someone that has experienced this too b/c even tho I am a nurse I am not a chemo/cancer nurse so I don't know much about what to expect during and after chemo. Thank you for your post. If you'd like to send me ur email we could communicate that way and you could keep me posted on how ur doing. I, too, have been worried about my hair ( what can I say, we are women who like our hair). HOpe to hear from you soon.

szilvia
Posts: 1
Joined: Jan 2013

Hi,

I had a surgery on October 16 to remove a mass. It was only supposed to be 1 hour long. I was in there for 6 hours because they found cancer and started to remove everything. My ovaries, uterus, 10cm of my rectum, appendix and 4 lymph nods. We waited for the pathology results for 2 weeks. I am 36 years old and it is rare to have this kind of cancer at this age. 

They wanted to start chemo 1 month after the surgery. My wound opened up and I couln't start chemo. First I had to pack it with gauze strip but it drained a lot and did not want to heal.

Than the doctor ordered a CT scan and found out that I have a large cavity under the hole. He cut my wound up more and odered negative pressure treatment (wound VAC) I had a nurse coming to change the dressing every other day. They put a sponge in the wound than connected a suctioning device to stimulate tissues and promote healing. I had a 3.5 cm deep tunnel which did not heal. The nurses did not use the sponge correctly...I called the VAC company and after their instruction I started to heal. After 1.5 months my wound was closing. I got off the wound VAC. The next week a hole started to form and it was getting bigger. I got some bacterial infection. They put me on antibiotics and cut out all infected tissues. I had a 3 cm hole again. My chemo got pusshed back every week because of the open wound. Now I am 3 months after my surgery. I went to a wound care specialist today. The doctor gave me a collagen patch. He said I should heal in 4-6 weeks without chemo. If I start chemo healing time will be 20 weeks... I don't know what to do. Should I delay chemo an other month or would it be to late? I was stage 3. I am so weak and in pain already. Worried that it would just get a lot worse with chemo...

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

I had 3 rounds of chemo with 2 open wounds (one from hysterectomy, one from IP port) and had them packed every day by a nurse for almost 3 months. Nothing horrible happened. They started healing once chemo was finished.

LVGyrl
Posts: 1
Joined: Aug 2012

Hi Andrea. My daughter might have Cowdens Syndrome. I have some questions if you have a moment. Thanks.

nataliestone
Posts: 1
Joined: Mar 2013

Hi,

I was diagnosed with Dysgermonima when i was 23. ,y tumor was 1.5 kgs and 12 cm wide. They removed my right ovary along with it. i had no idea it was there until i went for a gyni check up...my first...after pressure from my mother! 

i was told i had a rare cancer but that cure rate was high, any way went through the chemo though time...but now its all gone i still get paranoid and feel i need a Chest pelvic and abdomen CT scan every year, which i do do.

What i would like to know if anyone knows... is what are the long term effects of the Chemo BEP on the body? i was told that hearing could be affect at about the age of 60, something to do with hipdisplasure? (not sure of the spelling) , also scaring on the lungs, dizziness…does anyone know?

and by the way had a slim chance a falling pregnant after the chemo...and i beat the odds and fell pregnant with a healthy baby girl! so for you young girls out there, there is always hope just have Faith!

thnks

Natalie

Kezhal926
Posts: 2
Joined: Dec 2013

Hi all!

 

My name is Kezhal Shah-hosseini. I'm 21 years old and was diagnosed with Dysgerminoma this past weekend after my surgery to remove the mass that was growing on my right ovary. Originally, I had gone into surgery thinking I had uterine fibroids (benign, non-cancerous tumors), so you could imagine the shock I was in when they told me I had this rare cancer. The mass was bigger than a volleyball, so my stomach was huge! 

 

I decided to start a blog to document what life is like everyday with Dysgerminoma, how I feel, docotor's visits, and what I learn about the cancer. I'll even talk about the chemo once that begins next month. I thought this is a great way to reach out to others and hopefully meet or talk to others who have this and to show that there is nothing to be afraid of :) We're lucky it is curable! 

Here is the link to it:

http://ahiccupinlife.wordpress.com

 

Hope this is/becomes helpful! :)

 

Best Regards,
Kezhal

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