extragonadal mediastinal germ cell tumor (yolk sac)

wishing_onstars
wishing_onstars Member Posts: 18 Member
edited March 2014 in Rare and Other Cancers #1
My fiance is 29 and was diagnosed with extragonadal mediastinal germ cell tumor (yolk sac) 4 weeks ago. He is on a vent because it has blocked his airway and collapsed his left lung. After 4 weeks of chemo it has not shrunk any. They said his tumor is the size of a grapefruit. If anyone has any experience with this?

Another question... we were wanting kids, does anyone know if chemo affects fertility and how long will it take to regain fertility if he survives (when he survives I believe he will survive).

Comments

  • karenwal
    karenwal Member Posts: 2
    #2
    Extragonadal Mediastinal Germ Cell Tumor
    My husband was diagnosed with extragonadal mediastinal germ tumor in 2007 (29 years of age) - the tumor was the size of his fist and was obstructing his aorta. He underwent 4 rounds of chemotherapy followed by surgery to remove the remainder of the tumor. It has now been 2 years and the oncologist said it is highly unlikely that the germ cell cancer will return. My husband ate a lot of alkaline food (lots of dark green leafy vegetables etc.) and drank vegetable juice (beetroot, carrot, celery, and apple) everyday. This helped to boost his immune system, which was really important during his treatment. Studies have also shown that some chemotherapy drugs become more effective in the area around a tumor cell if the body is more alkaline. So I highly recommend putting your finance on an alkaline diet if possible.

    My husband also used a P.E.R. machine which regenerates cells. www.pulsedenergytech.com
    He used this machine everyday after his chemo treatment and surgery and his fertility improved to above average. We are now trying for a baby! I hope my story gives you a glimmer of hope, because he is proof that fertility can survive.

    I truly hope that helps. My heart goes out to you both. God bless.
  • wishing_onstars
    wishing_onstars Member Posts: 18 Member
    #3
    karenwal said:

    Extragonadal Mediastinal Germ Cell Tumor
    My husband was diagnosed with extragonadal mediastinal germ tumor in 2007 (29 years of age) - the tumor was the size of his fist and was obstructing his aorta. He underwent 4 rounds of chemotherapy followed by surgery to remove the remainder of the tumor. It has now been 2 years and the oncologist said it is highly unlikely that the germ cell cancer will return. My husband ate a lot of alkaline food (lots of dark green leafy vegetables etc.) and drank vegetable juice (beetroot, carrot, celery, and apple) everyday. This helped to boost his immune system, which was really important during his treatment. Studies have also shown that some chemotherapy drugs become more effective in the area around a tumor cell if the body is more alkaline. So I highly recommend putting your finance on an alkaline diet if possible.

    My husband also used a P.E.R. machine which regenerates cells. www.pulsedenergytech.com
    He used this machine everyday after his chemo treatment and surgery and his fertility improved to above average. We are now trying for a baby! I hope my story gives you a glimmer of hope, because he is proof that fertility can survive.

    I truly hope that helps. My heart goes out to you both. God bless.

    Thank you!!
    You are a blessing! I started to think he was the only one with this type of cancer. And to know that your husband has survived and is still able to father a child! I think I am excited for you as the news you just gave me. Thank you so much. I will look into the diet, right now he is unable to eat anything due to the fact he is on a ventilator/trache. They put a feeding tube in him but he has been really sick so he hasn't been able to even have anything down when they put it in the peg tube. But I am still so happy you responded, thank you for the message of hope!

    Thank you,
    Talena
  • OncoSurge
    OncoSurge Member Posts: 21
    #4
    wishing_onstars said:

    Thank you!!
    You are a blessing! I started to think he was the only one with this type of cancer. And to know that your husband has survived and is still able to father a child! I think I am excited for you as the news you just gave me. Thank you so much. I will look into the diet, right now he is unable to eat anything due to the fact he is on a ventilator/trache. They put a feeding tube in him but he has been really sick so he hasn't been able to even have anything down when they put it in the peg tube. But I am still so happy you responded, thank you for the message of hope!

    Thank you,
    Talena

    best wishes
    It is fortunately not a very common cancer. However, mediastinal germ cell tumors are treatable. The current recommendations would be chemo therapy (4 cycles I believe) followed by complete resection (surgery) for any remaining mass. Tumor markers should be checked prior to chemo, after chemo, and after surgery.

    Variations on the above will depend on the individual patients underlying status at the time of diagnosis.

    Best wishes
  • cval31
    cval31 Member Posts: 2
    #5
    OncoSurge said:

    best wishes
    It is fortunately not a very common cancer. However, mediastinal germ cell tumors are treatable. The current recommendations would be chemo therapy (4 cycles I believe) followed by complete resection (surgery) for any remaining mass. Tumor markers should be checked prior to chemo, after chemo, and after surgery.

    Variations on the above will depend on the individual patients underlying status at the time of diagnosis.

    Best wishes

    Surgery
    how do you find a surgeon to do this operation? We are in NJ and I was told there were only two surgeon's that can do this surgery. Neither one is on my insurance. I am at a loss.

    Thanks,

    Cindi
    cval31@yahoo.com
  • OncoSurge
    OncoSurge Member Posts: 21
    #6
    cval31 said:

    Surgery
    how do you find a surgeon to do this operation? We are in NJ and I was told there were only two surgeon's that can do this surgery. Neither one is on my insurance. I am at a loss.

    Thanks,

    Cindi
    cval31@yahoo.com

    surgeon
    You need a General Thoracic Surgeon/Thoracic Surgical Oncologist. For the most part, the operation of removing a mediastinal (center of chest) mass is a straightforward procedure for a surgeon that has completed accredited training in Thoracic surgery. If your insurance would cover a heart surgeon, I suspect it will cover a General Thoracic surgeon. I am not from NJ nor have I been to NJ. But, I am pretty confident there are more then just a few General Thoracic surgeons in NJ. You may need to have your primary care physician and medical oncologist assist in facilitating the surgical care.

    OS
  • coadog23
    coadog23 Member Posts: 1
    #7
    cval31 said:

    Surgery
    how do you find a surgeon to do this operation? We are in NJ and I was told there were only two surgeon's that can do this surgery. Neither one is on my insurance. I am at a loss.

    Thanks,

    Cindi
    cval31@yahoo.com

    Surgery
    Hello,
    I had exactly what you are going through. I went through the 4 rounds and chemo to remove the remains. I had Dr. Kenneth Kessler remove what I had left. He is at the Simon Cancer Center in Indianapolis. Kessler works with Dr. Einhorn who pioneered the treatment for this cancer. It's where you want to go. He is by far the best in the world. That is not an opinion, but a fact. I went and saw him and had to come back 3 weeks later for the surgery. They will take the tumor out and some tissue around the remains of the tumor. They will send the tumor and tissue to be tested. If they find that there is no living cancer in any of these areas, his chances of this coming back is around than 3%. I know its a scary situation. I know I have 3 kids and a wife that had to deal with it with me. I hope this helps you. It's a very rare cancer, but can be cured.
  • cval31
    cval31 Member Posts: 2
    #8
    coadog23 said:

    Surgery
    Hello,
    I had exactly what you are going through. I went through the 4 rounds and chemo to remove the remains. I had Dr. Kenneth Kessler remove what I had left. He is at the Simon Cancer Center in Indianapolis. Kessler works with Dr. Einhorn who pioneered the treatment for this cancer. It's where you want to go. He is by far the best in the world. That is not an opinion, but a fact. I went and saw him and had to come back 3 weeks later for the surgery. They will take the tumor out and some tissue around the remains of the tumor. They will send the tumor and tissue to be tested. If they find that there is no living cancer in any of these areas, his chances of this coming back is around than 3%. I know its a scary situation. I know I have 3 kids and a wife that had to deal with it with me. I hope this helps you. It's a very rare cancer, but can be cured.

    Surgery
    I want to thank you for your reply. I just found it today. My husband had the tumor removed December 23, 2009. The tumor went from 15 cm to 6 cm from the chemo. They did the biopsy and we got the call on December 30th that didn't find any live cancer cells. We, just like you are so very happy. So we are starting the new year off great. We have 3 kids 19, 22, 25 also. It was very hard to go through this alone with my kids but we did it and I think we are stronger for it. Thanks again.

    Cindi
    cval31@yahoo.com
  • Nick2013
    Nick2013 Member Posts: 1
    #9
    coadog23 said:

    Surgery
    Hello,
    I had exactly what you are going through. I went through the 4 rounds and chemo to remove the remains. I had Dr. Kenneth Kessler remove what I had left. He is at the Simon Cancer Center in Indianapolis. Kessler works with Dr. Einhorn who pioneered the treatment for this cancer. It's where you want to go. He is by far the best in the world. That is not an opinion, but a fact. I went and saw him and had to come back 3 weeks later for the surgery. They will take the tumor out and some tissue around the remains of the tumor. They will send the tumor and tissue to be tested. If they find that there is no living cancer in any of these areas, his chances of this coming back is around than 3%. I know its a scary situation. I know I have 3 kids and a wife that had to deal with it with me. I hope this helps you. It's a very rare cancer, but can be cured.

    3%?

    Coadog, where are u getting 3%?  Is this for nonseminomatous?  Would love to read the research for for such great recurrence stats...

  • traci430
    traci430 Member Posts: 3
    #10
    Support

    My 29 year old son in law was just diagnosed with mediastinal germ cell cancer.  This diagnosis came as a complete surprise to all of us.  I'm looking for any kind of information that can be shared with us. 

  • sevenvoltes
    sevenvoltes Member Posts: 5
    edited July 2016 #11
    son's diagnosis

    My son 21 was diagnosed with extragonadal germ cell tumor last year. AFter rounds of chemo, left over tumor changed diagnosis to Esophageal Cancer but a year later on, treatments not doing any good to him. 

    Did your son had FISH test? 

     

     

     

     

     

Discussion Boards