Hello

I also have been diagnosed with immature teratoma (right ovary).

I had it removed in july last year but tought it was a mature teratoma, only found out it was the immature kind after the biopsy results almost a month later. So around october I started the journey of understanding what had happened and what still needed to happen, but because it is so rare I found it very hard to find a doctor that gave me the sense of security that they actually knew what to do. In november I had an MRI and it showed that I probably had 2 secondary tumors (one behind my uterus and another next to my liver).

I started chemo in march of 2018 and had 3 cycles of BEP. I found treatment pretty rough. The first 2 weeks of every cycle were the hardest: nausea, sensitivity to smells, dangerously low blood pressure, bloating and gas, constipation or diarrea, overall discomfort. My hair fell after 2 weeks of the first cycle. Also had neuropathy and some dark nails which didn't bother me that much, but then last week some nails started getting loose, I think they're gonna fall :( . Had some calluses in my hands but they're gone now. And I have some dark marks in my skin as well.

After chemo was finished I had a new MRI but the results weren't positive for the tumor near the liver. So now I'll have another surgery (in 4 days) to remove those and have a full histerectomy. After the biopsy results from this surgery will see if more chemo will be needed.

Sorry for the long post, I made it as short as I could (and still left some details out haha).

As you girls said, a good support system is great. For me it's friends and family <3. Still I missed talking to people that actually know what it is to go trough this, thank god I finally found you (would love to be added to the FB group if that's okay).

How are you girls now? Are you all done with chemo and everything?

Hello

I also have been diagnosed with immature teratoma (right ovary).

I had it removed in july last year but tought it was a mature teratoma, only found out it was the immature kind after the biopsy results almost a month later. So around october I started the journey of understanding what had happened and what still needed to happen, but because it is so rare I found it very hard to find a doctor that gave me the sense of security that they actually knew what to do. In november I had an MRI and it showed that I probably had 2 secondary tumors (one behind my uterus and another next to my liver).

I started chemo in march of 2018 and had 3 cycles of BEP. I found treatment pretty rough. The first 2 weeks of every cycle were the hardest: nausea, sensitivity to smells, dangerously low blood pressure, bloating and gas, constipation or diarrea, overall discomfort. My hair fell after 2 weeks of the first cycle. Also had neuropathy and some dark nails which didn't bother me that much, but then last week some nails started getting loose, I think they're gonna fall :( . Had some calluses in my hands but they're gone now. And I have some dark marks in my skin as well.

After chemo was finished I had a new MRI but the results weren't positive for the tumor near the liver. So now I'll have another surgery (in 4 days) to remove those and have a full histerectomy. After the biopsy results from this surgery will see if more chemo will be needed.

Sorry for the long post, I made it as short as I could (and still left some details out haha).

As you girls said, a good support system is great. For me it's friends and family <3. Still I missed talking to people that actually know what it is to go trough this, thank god I finally found you (would love to be added to the FB group if that's okay).

How are you girls now? Are you all done with chemo and everything?

Hi Gabbi,

There is a closed FB page where you can join and share experiences with people who are like you - going through it, as well as those who have gone through it. Just search for Germ Cell Ovarian Cancer Support Group. I have tried to PM you the details but it wouldn't work! 

I'd recommend it as you don't feel like you are on your own xxx

Hi,

Realised I never actually responded to your questions!

I am 11 months post chemo, and 10 months post surgery. I am back to work, although am lucky enough to be able to work two days (of 4) from home.

I feel much more like my old self, although I never will be the same. I did feel I was able to recover quicker after the hysterectomy physically than from chemo. Weird! I felt very emotional about the loss of my fertility though (& still do)

How are you feeling about it all? Where in the country are you being treated? 

If you accept my friend request on here, I can PM you the details (not permitted to do it on the forum)

Thank you for responding so quickly (sorry it took me so long hehe got caught up in the arrangements for surgery). 

I'll definitely look up the FB group, thankz :))

Interesting you said you're feeling more like yourself but will never be the same. I've been feeling that's how is gonna go for me as well, but i'm trying to think that's not necesseraly going to be bad thing.

I didn't mind the loss of fertility (i was/am more worried about the effects of menopause and all that on my body but my gyno said that are many solutions for that). But I'm really really sorry is hard for you :/ I hope you become more "ok" with it with time.

My surgery went well but it was pretty big, everything that could've been taken out was (lol). So recovery's been a little tough especially because I had to have a chest drain (not sure if that's the name in english) because it turns out the tumor was kinda glued to my diaphragm and my f-ing god sometimes felt like someone was stabbing me in the ribs with a hot metal stick. But after 9 days it's finally gone (I literally took a pause writing this to have it taken out). So I hope recovery will go much smoother now.

ps.: I'm actually from Brazil and living in Brazil.

I currently have this, I had surgery for a suspected dermoid and have just has the call to say was an immature teratoma and that the oncologist and pathologist were discussing me at their next meeting.

Am not sure what will happen as already had just the lump removed...trying not to Google too much as freaking out after being led to believe it was benign.

Will they operate again and take the ovary it was near or just moniter me?! I'm still having hip,back and groin pain have told the doctor who rang me so she can add it to the notes. 

Hopefully hear back next week, but has anyone else had similar and can advise me more? What stage were you and what was the next steps? 

Xx

Hi, I'm sorry to read about your diagnosis. I hope you are doing well?

I hope you don't mind me asking but I wondered if you could tell me what if any symptoms you had before your diagnosis?ive been diagnosed with a 8x6x5 mature teratoma which is being removed laproscopically next Thursday. But I'm worried it could be malignant. I know most dermoid aren't but I've been very symptomatic for quite some time, fatigue, constant need to wee (I can't go far without needing to go), pain in the pelvic area, acid reflux and back pain.

I know that I won't find out anything for certain until its removed and sent off for testing but I am just curious to hear the symptoms and journey to diagnosis from someone who has been diagnosed with a dermoid that turned out to be malignant

Thank you x

Hey Manbar, I noticed you were hoping to hear back about Goldie2811's symptoms before they got their diagnosis.

Unfortunately Goldie hasn't been on the forum since May 2021 so there's a chance you may not get a reply.

I really hope that won't be the case but if Goldie doesn't respond, then do feel free to reach out to others on more recent discussions you find about this topic on the forum.

You're also welcome to talk things through with our team of cancer nurses on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

We're thinking of you Manbar and wishing you all the best with your laparoscopy next week.

Kind regards,

Steph, Cancer Chat Moderator