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Date of last update: 9/9/2017.

Forum Name: Pediatric Topics

Question: 16 year old with enlarged thymus or thymoma

 lucky5 - Wed Jan 18, 2006 10:38 pm

I have a 16 year old son who had a osteochondroma removed from his hip last year. Following surgery he had chest pain and his neck swelled which lead to a catscan of the chest. The results showed slow flow through the superior vena cava vein, a mediastinal mass or a very prominent thymus measuring 3.0x2.0. We then had a petscan which showed low tymic uptake suv 2.8. The doctors decided to watch it for one more year since thymoma's are not very common in his age group. We just had the follow up catscan done which showed that it had grown and now measures 3.9x 2.6. The doctors would like to watch for one more year, but we are hesitant because it has grown. His spleen is slightly enlarged, striations in the kidney(striated nephrogram), terrible bone pain and a non ossifying fibroma in left leg. He has fatigue and cannot finish his workouts anymore. I forgot to mention that he had gone through puberty by age 12 and his growth plates had closed by 12. He had an advanced bone age test of approx 7 years advanced maturation. Have you ever seen this in a young adult. Thank You, Mary
 Dr. Heba Ismail - Fri Jan 27, 2006 8:09 am

Some doctors prefer not to interfere if the mass is not compressing the surrounding strutures and causing any form of compromise.
However, it seems to be already causing compression as evidenced by the slow flow in the superior vena cava, the neck swelling and chest pain.
I suggest you seek a second opinion.
 lucky5 - Fri Jan 27, 2006 8:51 am

Hello Dr. Ismail,
Thank you so much for replying to my post. Since my last post we had a new catscan done to follow up on the kidneys and spleen that is now questioning whether or not this is benign or malignant etiology. The test showed new nodules in the left lung and enlarged lymph nodes near the spleen. W e are worried now. Have you ever seen this in a patient. All of sudden it seems that whatever is wrong is spreading. I am flying our son to Indiana to see an oncologist that specializes in the thymus for a second opinion. Are there any questions that you would recommend I ask at this point. I am worried that if we continue to watch more growths will develope. Thank You, Mary
 Dr. Heba Ismail - Fri Jan 27, 2006 8:58 am

You have done the correct thing by seeking an oncologist's opinion.
Remember to obtain a full explanation for what he thinks this is, it is your right. Then we can discuss the options together.
 lucky5 - Fri Jan 27, 2006 9:17 am

Dr. Ismail,
Thank you so much for taking the time to help us. I am taking our son out of state to see Dr. Loehrer who is supposed to be 1 of 4 doctors in the country who specialize in thymoma's. We are still hoping it is all a benign condition. I will send you a post when I get back with our options. I apprectiate your help.
 lucky5 - Thu Feb 02, 2006 3:03 pm

Hi Dr. Ismail,
We just returned from our trip to get an opinion on our son's very rominent thymus and are now more confused than before we went. He said he does not think it is a thymoma or lymphoma right now because of the shape. It measures 3.9 but has not taken an oval or round shape. The location is behimd the chest cavity so is risky to do a biopsy. The doctor said if it grows more or change size then come back, but in the meantime not to be concerned. Do you think we should go with this opinion and just scan it again next year? Also none of the doctors there have ever seen striations in the kidneys. What could a striated nephrogram indicate? The radiologist that read the catscan urged us to see an ocologist for the kidneys that it could be benign or malignant. What do you recomment we do? The nodules in his lungs were not addressed either so I am not sure where to look anymore. We are exhausted from watching our son suffer with bone pain and not having reasons why these things are occurring. Is there anywhere I could send these catscans that would have seen all of this before in one person? I hope you can help me figure out what my next step should be. My email is
Thank you, Mary
 Dr. Heba Ismail - Fri Feb 03, 2006 8:38 am

I've forwarded your post to our oncologist.
He may be more helpful than me.
 lucky5 - Fri Feb 03, 2006 9:00 am

Hello Dr. Ismail,
Thank you for taking the time to forward my post. I appreciate any help at this point.

 Dr. Tamer Fouad - Sat Feb 18, 2006 4:40 am

User avatar Hello,

As I said in my earlier post, the PET scan result is at least reassuring. Could you supply us with the details of the CT report?

Best regards.
 lucky5 - Mon Feb 20, 2006 7:03 pm

Hello Dr. Fouad,
Thank you for responding to my post. Sine my last post we have seen another oncologist and are now scheduled for another petscan this Friday. The oncologist that we are seeing requested that we get the slides from the pathology department that diagnosed the bone tumor last year as a osteochondroma. The doctors want to be absolutely sure it was not an osteosarcoma since there has been too many new findings since that tumor was resected. Is an osteochondroma and an osteosarcoma similiar in appearance? The area that it was removed (femoral neck) now has infiltration. Here are the details from catscan. The catscan on December 21 showed growing enlarged thymus 3.9 x 2.6 appearing solid with linear bands of fibrosis adjacent to major fissure in right lung. On January 18th showed lung nodules in the lingula and lower left lung, slightly enlarged spleen since December which is a little concerning since mono and viral infections were ruled out. There are mildly prominent mesenteric lymph nodes also present since december. The low attenuating bands of foci in the kidneys bilaterally are of unknown etiology. Our son has severe chronic bone pain, pain in hip and flank pain. We are trying so hard to help him, but all are puzzled and hoping going back to the bone tumor may give them answer an begin to treat him. Also he has a non ossifying fibroma that seems to be stable in his knee. Could you recommend anything we should be doing or maybe help me with questions to ask at the hospital on Friday? Is it possible the tumor was an osteosarcoma and is causing all that is happening? I realize that you volunteer your time and understand you have many posts to read. I appreciate any help. Sicerely, Mary

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