Chronic scerlosing mediastinitis

  My husband Jerry, has been diagnosed with a rare tumor in his right chest.  The doctors are calling it chronic scerlosing mediastinitis.  At present no one seems to know what to do about it.  He had a Stent put it to take pressure of the Superior Vena Cava.  But they claim they could not Stent to Right Pulminary Artery, because it is too damaged.  He was taking steroids (40mg. a day) for 3 months.  This did nothing.  I guess the only case history they found indicated that steriods helped shrink this in someone else.  Needless to say it did not help Jerry.  This is about the size of a lemon.  They say it is inoperable, because of its location, ie. wrapping around major arteries in the chest, close to the aorta, etc.  I have found some info. on the Internet relating to mediastinitis, which says it can be fatal at times, due to the blockage of breathing.  My husband is only 45 years old, and we are getting a little scared lately that he will not be around to see old age.  The doctors seem pretty lax in pursuing anything.  They are currently just checking it with a CAT Scan and blood tests every 3 months.  But if it continues to get bigger they are acting as if their hands are tied.  They say it has the consistency of cement.  That radiation will not penetrate it.  Isn't there some sort of medicine out there that can help?  Could they remove the lung, in order to get rid of most of it?  I have heard about some pills, that they are testing, some sort of radiation pills that are so strong they will kill anything, is there such a thing?  My husband was diagnosed with this back in April of 1998, but he has had this tumor since 1988.  At that time it was like the size of a dime or smaller, since it was not cancerous they did not operate.  Now ten years later its huge.  Whats to stop it from getting larger and killing him.  With all the advancements in medicine, there has to be something.  Are there any doctors that you can recommend at the Clinic for us to consult with.  My husband is willing to be operated on again or even take experimental drugs to see if these could possibly help.  We are at our wits end.  Thank you in advance for any guidance you can give to us.   Kathy

[CCF CARDIO MD APS]

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Dear Kathy,
At this point, only an aggressive thoracic surgeon would be willing to take on this case.  It sounds as if
your husbands doctors have nothing but palliative care planned, correct?
The place to find aggressive thoracic surgeons is at major medical centers like
the Cleveland Clinic, the Mayo Clinic, etc.  Why don't you consider a second opinion at such a place, after
all it could be a matter of life and death (especially if that tumor continues to grow and weaken the walls of
the major vessels in the chest.)
Meanwhile I will speak with Dr.Rice here at our institution, an excellent thoracic surgeon, regarding any new
"up and coming" treatments other than surgery for this condition.  You can use the number below to set up an appointment
with Dr. Rice if that is a possibility, for a second opinion.
I hope this information is useful. Information provided in the heart forum is for
general purposes only. Only your physician can provided specific diagnoses and therapies.
Feel free to write back with further questions. Good luck!
If you would like to make an appointment at the Cleveland Clinic Heart Center, please
call 1-800-CCF-CARE or inquire online by using the Heart Center website at
www.ccf.org/heartcenter. The Heart Center website contains a directory of the
cardiology staff that can be used to select the physician best suited to address your
cardiac problem.