Mediastinal seminoma

Dilefan
Dilefan Member Posts: 2
in Rare and Other Cancers #1

Hello,

 

      I’m a primary mediastinal seminoma patient aged 32. I didn’t  have biopsy before treatment and surgery was taken as initial treatment because the tumor is small with clear border . The tumor was radical resected last month,so did thymus and surround  adipose tissue .The tumor size is 4*1*3.5cm and there is no metastasis to lymph gland. serum tumor marker is normal. Someone suggested CTH should be taken but I don’t want it at all...  Really hope for your advice.

Comments

  • annie4145
    annie4145 Member Posts: 218 Member
    #2
    I would encourage you to

    I would encourage you to follow the recommendations, unless you have a very good reason not to.  You are very young.  Try to do the most that you can do to make sure that it doesn't reoccur.  But if you want a second opinion before you begin treatment, that is fine too.  Talk to a reputable hospital to get a second opinion. 

    YOu can also do some standard research of your own.  Find out what the standard of treatment is, and what the prognosis is with and without this treatment.  (if it is just a percentage or two better, that is one issue.  If it is 10 or 15% better outcome that is another issue.

    I have used google scholar, and also looked at  the NCCN guidelines for my cancer.

  • Chrishur
    Chrishur Member Posts: 1
    edited April 2020 #3
    annie4145 said:

    I would encourage you to

    I would encourage you to follow the recommendations, unless you have a very good reason not to.  You are very young.  Try to do the most that you can do to make sure that it doesn't reoccur.  But if you want a second opinion before you begin treatment, that is fine too.  Talk to a reputable hospital to get a second opinion. 

    YOu can also do some standard research of your own.  Find out what the standard of treatment is, and what the prognosis is with and without this treatment.  (if it is just a percentage or two better, that is one issue.  If it is 10 or 15% better outcome that is another issue.

    I have used google scholar, and also looked at  the NCCN guidelines for my cancer.

    Treatment of primary mediastinal germ cell cancer seminoma

    Hi. Agree with reading as much as possible if you get this very rare cancer.  90 percent survival odds if under 37 and healthy, about 66 percent if over 37.  Be thankful it's not the much worse nonseminoma variety.  I have stage 3 seminoma that regionally metastasized and was 13x9x9 cm before I started four cycles of six day inpatient weeks of VIP (Etoposide, cisplati, and ifosamide).  Surgery is by FAR the best and safest option.  VIP is brutal, much worse than the cancer symptoms.   Chemo also causes cancer down the road.  However, that wasn't a choice for me due to the size, location, regional invasion and metastisis.   I am currently post chemo, but my bone marrow now isn't working.  My oncologist thinks it might in another month or two.   I suffered hemorrhages in both eyes (lost vision in left eye) due to low platelets  and have become transfusion dependent.  

    As of now, post treatment, a 5x1.7x6.7 cm mass remains.  TBD if it's active or residual scar tissue.  A PET with radioactive sugar will determine if I still have active cancer in my body.  After that, it's targeted radiation and/or surgery.   My body can't handle more chemo... although I would probably try anything with at least a 10 percent chance of success (beats the other option, right?).  I write this long paragraph to outline the treatment path of how PMGC semiNoma cancer might unfold.  Good luck!   Live in the moment and make the absolute most of everyday you have.   

    Here is a good article that outlines much of what I have experienced:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3996080/#!po=8.33333

     

     

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