Extragonadal Germ Cell Tumor

[sheckert]

My boyfriend has been diagnosed with an extragonadal mediastinal non seminona germ cell tumor of the yolk sac subtype. Apparently this cancer is grouped in with testicular cancer although it is in the chest and lungs and not in the testicles. It is the same cancer cell as testicular cancer but not the same location. He finished his first week of BEP two weeks ago and has been feeling fine, with the exception of some fatigue and a few nights of an upset stomach. This may sound absurd, but I am concerned that the chemo is not working because he is not having any symptoms from the chemo. We are supposed to find out after his 2nd round of BEP if his tumor marker (AFP ?) is down and this will tell us if it is working. He has also developed a ringing in his ears as well as nosebleeds, headaches, and some lower back pain. I was just wondering if anyone is familiar with this or has this type of TC.

[dadmo]

Your boyfriend does indeed have testicular cancer and he needs to either be seen by or treated by an expert. This is very important and I can't emphasize it enough. He needs an expert involved. Click here for a list of experts.
Can you tell us anything about his case? What were his markers at the start, where exactly did they find tumors? How are his lungs and lymph nodes by his kidneys? Where is he being treated? Were not doctors but there is a lot of experiance that can be shared. The people here have seen and survived it all but again the key is proper treatment.
Don't worry about not having symptoms from the chemo, his hair will certainly be affected even if it just thins and as time goes on he will feel worse. His next markers are very important so please let us know what the result is.

[Scott]

Welcome, sheckert. On the off chance you haven't already found it, check out the TCRC information on this page and the links it includes regarding extragonadal germ cell cancer.

[Eric]

After my first cycle i had just a little nausea in the week-end. I was wondering if it was working. I got the answer a week later when i found myself at the hospital with low WBC. They took a chest X-ray to verify for a possible pneumonia. At my surprise my mediastinal mass had almost completely disapeared. Finally almost a year after chemo i can say that had almost no ringning and i have no numbness in finger or feet. The only thing i still have is a little bit patchy mustache. Don't worry if there is not a lot of symptoms, chemo work better than you think. I wish you all the best

[emilyalex]

My husband was diagnosed with retroperitoneal EGCT in October. He finished 4XBEP on Christmas Day. He was not nauseous or sick either, but the chemo did bring his tumor markers down and shrink some of the tumors. Unfortunately, his numbers have begun to rise again, but his disease was/is very widespread. I highly recommend seeking the advice of one of the experts, as Dadmo mentioned. What we're dealing with is not as common and it is extremely critical to contact someone who is familiar with EGCT. Our oncologist is not, but we have been consulting with Dr. Einhorn from Indiana University. If you e-mail him with questions, he will respond. We made the trip from Houston to Indianapolis with all of our scans and pathology slides in December to meet with him and it was one of the best decisions we've made.

If you have any specific questions, you are welcome to send me an e-mail or private message and I will tell you absolutely everything I know about EGCT. I think I've ready pretty much everything the internet has on it! You have come to the right place for info and advice. The people here are wonderful!

Emily

[sheckert]

I will give as much information about his case as I know. His tumor is in the right portion of his chest cavity (mediastinal is the term the Dr. uses) and it is about 8-9 cm x 10 cm. There are also a few small nodules the Dr. detected in his lungs, other than that his testicular ultrasound, MRI, and PET scan came back normal. The chest and lungs are the only places they have detected the cancer. The doctor said that this develops in the embryonic stage and is rather rare due to the location. His cancer is considered high risk due to the location. There is a possibility of him needing surgery to remove any remains of the actual tumor after chemo. There is also a genetic pre-disposition of him developing Leukemia later. Ryan's AFP markers prior to starting chemo two weeks ago were 36,000. His oncologist said that he will do a weely blood test to check WBC, but the marker check will not be done until after the end of the first full four week cycle to determine whether or not the chemo is working. The scheduled treatment is 1 week on (5 days a week, about 5 hours a day) and three weeks off. During the off weeks he still has to go in to have an IV of Bleomycin and a WBC check every Monday.

We live in Fishers, IN and his oncologist is Dr. Stephen Schultz. He studied at IU and has consulted with Dr. Einhorn regarding the case. We really feel like he is in good hands. Dr. Schultz has been very positive, straight forward, and honest from the first appointment. He said there is a 50% success rate and if the BEP doesn't work then plan B is the VIP salvage treatment and the success rate goes down to 39% (I got that percentage from the internet).

Thank you for your time.

[Lori]

Welcome to the forum and glad you posted. I've found this to be a great outlet. Although my husband didn't have EGCT his cancer had spread to the mediastinum as well as the neck by the time we discovered it. I'm hoping the chemo shrinks the tumor, but if your boyfriend will need surgery in the mediastinum I highly recommend Dr. Kessler at IU. He works closely with Dr. Einhorn for all lung/tc cancers. Jon's surgery was 8 hours and involved scraping all components of his chest to get the tumor out. Although nothing in writing, we heard 2 pounds of teratoma was removed. Dr. Kessler, his time and IU were incredible. We never doubted the hands we were in and I only had a few anxious moments during the 8 hour waiting period.

Sounds like you are in good hands with your oncologist. Don't worry about the none symptoms. Jon went through High Dose and he had very few of the normal symptoms - but it did work.

Remember to take care of yourself and if you need anything, we are here!

[dadmo]

It seems like you have taken all the right steps, having Enihorn involved is great and should improve your boyfriends odds. The spread doesn't seem too bad but his markers are on the high side. I know by pure classification he's poor risk but those statistics are an average when they include doctor's who don't know what they are doing.