Germ cell, Immature Teratoma grade 2

[heliotropes]

I was just diagnosed less than a week ago with grade 2 immature teratoma and have been having a difficult time coping for obvious reasons, but my situation is even more frustrating given the rarity of this kind of OC so I was wondering if anyone here knows anyone who was also diagnosed with this or has it themselves and could share their experience?

On April 21st I had surgery to remove my ovary/fallopian tube and the giant cyst that was ostensibly benign but upon extensive pathology testing post-op they found out what it actually was...

I have a PET scan scheduled for tomorrow, Tuesday, which will hopefully show there isn't a spread of cancer elsewhere then I have a staging surgery scheduled for this Thursday to look at my lymph nodes and omentum.

I feel like this whole situation would be at least slightly more manageable if I could even just google "immature teratoma" and be presented with a lot of medical and/or anecdotal information but unfortunately it's rather limited. Though I have been lurking through the posts and have seen some personal stories on here, any and all comments would be greatly appreciated :-)

[HVAC]

I did both. I had what they call debulking. They take all the female organs and the lining of all the other internal organs. I have had four different chemos. The first was bad but the others okay. I was late stage and full of cancer. I am also BRCA 1 positive so my body makes cancer all the time.

It is normal to want to know about everything. I did. Just understand everything on the internet is true. Studies only pertain to those individuals and there is usually a small amount of people. For example I was in a study for a year. I did better than anyone and I was on the placebo.

Alex

[heliotropes]

Hey Alex,

That must have been devastating thinking you only had two years at best left to live. I'm glad to hear that you've out-lived that and are doing better though! :)
I agree focusing on the statistics can be kind of scary and possibly counter-productive to maintaining optimism. I go between wanting to know ALL the possibilities and their likelihoods so I can stay informed, and just focusing on my situation and ignoring the outliers.

If you don't mind me asking, did you go through chemo treatment or surgery?

[HVAC]

I can't speak of teratoma. I have a rare kind of Ovarian Cancer called clear cell. I read about it on the internet and it did not give a lot of hope for me. Since then I have learned people are not statistics. I thought if I was lucky I would live two years. It has been three and I am doing well. I am planning a trip to Europe this fall. No one would know I even have cancer. Also I have learned a lot of information is out dated. They have made great strides in the last 5 years for Ovarian Cancer. They now call it a chronic cancer, meaning something women live with.

Alex