Germ Cell Tumours

[Pinzerino]

Hi,

I'm just wondering if anyone else has any experience of Germ Cell Tumours as opposed to epithelial ovca? I have just finished treatment and have not met anyone with this type and find it difficult that everyone assumes that it is the same form of cancer when, in fact, it more resembles testicular cancer than anything else. Just wondering how alone I am in all this!

[Honey3]

Hi, I joined this site because my then 16 year old daughter had an immature teratoma last year. It was unusual in that it also contained a carcinoid tumour. After a second major op (lasting 5 hours) she was told she is cancer free and did not need chemo, though she has to have regular blood tests and MRIs until April 2012. I have learned a lot about this type of cancer so please feel free to ask any questions or tell me about your cancer if you want to do so. I hope all is well now.

[Pinzerino in reply to Honey3]

Thank you Honey,

I don't so much have questions about the cancer because I've had it for a year and a half and consider myself to be very clued up on the disease and my treatment.

I didn't have carcinoid in mine- it was mature teratoma, yolk sac and undefined immature teratoma.

That's great news she didn't need chemotherapy

[KatyA]

Hi

Not sure if you'll still be checking this since you asked the question in January and it's now October...

I'm currently half-way through some chemo for a dysgerminoma, a type of germ-cell, and have yet to find anyone else who's been through the same thing.. I'm being treated at a specialist unit on Harley Street and even the nurses and doctors there keep commenting on how 'special' I am. Have seen lots of men there having the BEP chemo, but no women...

I'm 29. I had a baby in summer 2010, and went to the doctor's because of pains in my right hip in summer 2011. It turned out that there was a lump on my right ovary which had caused my ovary to twist three times (hence the pain). I had two surgeries: one to remove the lump, and then, after we found out that the lump was cancerous, a second to remove my right ovary and tube. My husband and I then did a round of IVF to put some babies on ice, just in case (although everything should be fine), and I started chemo three weeks ago and will be done mid/late November

The chemo is just a belt and braces really though: no trace of the disease anywhere else, and my consultant's expecting me to make a full recovery. So all will be well, it's just a matter of getting through the next few weeks...

I'd love to hear from you (or anyone else who's got some experience with this): the information generally available about ovarian cancer is geared almost solely towards epithelian, which has very little relevance in my situation (and has scared a lot of my family and friends), and that's when it's mentioned at all - so much of the support/information etc about women's cancers seems to be focused on breast cancer..

To anyone who's facing this: do not worry. This is incredibly curable: the treatment isn't nice (my hair started falling out yesterday...), but cure rates are in the high 90%s, so it's a price worth paying. Just make sure you see an expert: it's a very rare thing and most oncologists won't have seen one before.

[Nic1985 in reply to KatyA]

Hi Katy, I’d love to hear how you are getting on, 6 years later? My sister is nearing the end of treatment for a germ cell tumour (yolk sac 3c). She’d love someone to chat to.

Best wishes,

Victoria