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Extragonadal Germ Cell Tumor - Chest

Posts: 2
Joined: Jan 2011


I am caring for my fiance that was diagonsed with extragonadal germ cell tumor in his chest originally in Feb 2009. He went through 6 months of chemo and then a major surgery that affected his lungs and had to be partially removed. The surgery was im September 2009. By his first check up that following November 2009, they saw his tumor growing again. It took them exactly 1yr to determine that it was cancerous, so November 2010 he started chemo again and this time it is worse. His doctor is a very good doctor, but doesnt have much expierence with this rare cancer. He even consults with Cancer Care Alliance and the Doctor in Indiana that specializes in this. He agreed to do the stemcell treatment in order to give him very high doses of chemo at once if that is what we really wanted but he said that all the other doctors said to not do it because they feel its not worth putting him through that suffering with only a 1% chance of survival because this is a relasps and the cells are resistant to chemo. He said he wanted it and is now in the process of preparing for his stemcell transplant. We choose this regardless of the 1% chance because when we asked his doctor what the other options were, he said 0% chance of survival and they would just maintain it until it took over his body and spread......well we would rather go through hell for that 1% chance then none!

I just wanted to see how others were treated and if they relapsed and if so did they survive and for how long???? The difficulties with rare cancers is there isnt much data to know what works and doesnt. When his doctor said that it was only a 1% chance, I said well isnt that how statistics are made?? :P

Posts: 1
Joined: Oct 2011

Hi! I came upon your question as to the survival rate of Germ Cell cancer. Three years ago, my son, age 27 was diagnosed with a massive tumor in the chest wall. He is alive and cancer free today. Please contact me if you are still interested in information. I am more than willing to share.

Posts: 5
Joined: Aug 2015

My son 21 had tumor in chest and diagnosed with germ cell tumor primarily. After 4 cyles of BEP, left over tumors were changed to Esophageal Cancer. 

It is one year now and treatment as far as EC is concerned does not work at all. AFP is increasing..

Could you please tell me your son's lab test? Did he had FISH test? 

Desperate mother I am.

Posts: 1
Joined: Jul 2016

Hello. I just saw your post, as I have been desperate to find for more information for this kind of cancer, as it is very rare. My fiance got this kind of cancer. We found out a few days ago. Can I please get some information from you for this?


Posts: 3
Joined: Oct 2015

My 29 yr old son in law was just diagnosed with Mediastinal germ cell cancer.  I'm looking for any information that I can get about this.  He just completed his 1st very aggressive, week-long round of chemo.  What can anyone tell me about what to expect?

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