worried MOM

[worriedmom]

Hi everybody,
I am a mom of an eight year old boy.We found a mass on his right testical on aug 18, we got him in to the doctor ultra sound and he had surgery last wenesday. He is healing well the doctor called yesterday to tell me that they had to send his biopsy to johns hopkins . His tumor was the type that would have been in an older male not a child....They did say it was contained. So i am justworried and confused at this piont...... Any advice
Christine

[Kman99]

Wow! I am very sorry for what you're going through and for your 8 year old son too. It is very natural for you to be worried and confused, but you found a great site to help you through this!

Do you have any specifics yet on the tumor? The fact that the tumor was contained is a good thing in my mind. Has he had his blood tested yet for tumor markers?

Also, once you know more, it may be a wise decision to seek a 2nd opinion.

Send an update when you can and please ask any question you might have.

[Karen]

Hi Christine,
As I was typing this I noticed Kman said almost exactly what I was typing! Post the blood work, CT and final pathology and we will help in any way we can.

[dadmo]

worriedmom:
Pediatric testicular cancer is very rare and the treatment may be different from what an adult would get. Check out these earlier posts that concerned an 8 month old. Just click here. I would strongly recommend getting in touch with an expert A list of them can be found here. Dr. Einhorn seems to be the fastest to reply so I would start there

Here's Dr. Einhorns contact information

NAME : Lawrence H. Einhorn
PHONE : (317) 274-3515
FAX : (317) 274-3646
E-MAIL : [email protected]
DIVISION : Hematology/Oncology

It is important to have the pathology report but don't wait send Dr. Einhorn an e-mail describing your situation.

Please keep us posted.

[worriedmom]

Thank you all for the posts, my info is limited at the moment his hormone marker test were in normal range. The mass was 3.0,3.5,3.8. He has not had a CT scan. The doctor just keeps saying he needs the biopsy results before we sit down and talk about what we do next.He said it will take up to two weeks to get them back from johns hopkins.... They had not seen the type of tumor he had in a child his age at this hospital. Yet he would not tell me the "type "of tumor it was???? grrrrrrrrr. I just want to make sure he is healthy and taken care of .
Christine

[dadmo]

Your Dr. is right that until the tumor is typed they won't be able to set a course of action but I would still give Dr. Einhorn a heads up.

[Kman99]

Christine,

When you say 3.0, 3.5, 3.8....is that CM (centimeters) or MM (milimeters)?

As Dadmo said, the tumor type is important. If your docs havent seen this size or type tumor, then you definitely need to start thinking about a facility/doc who has. Assuming you're in the Baltimore region, there is a recommended facility/doc in Phily, NYC (Sloan) and of course IU.

Do you know what his AFP and HCG levels are? If they are indeed within normal ranges, that is another piece of positive news. Although keep in mind normal markers does not mean there is no testicular cancer.

2 weeks to get the results seems long to me, so I would push your docs and possibly even call the pathologist at Johns Hopkins to speed things up.

[Karen]

Christine,
Purely speculation on my part, but if the markers are normal and it's a type usually seen in older men I suspect your doctor is alluding to a seminoma. I agree with they guys that you need to go to an expert for this, at the very least for a consultaion and second opinion. He needs a CT scan to determine the stage, along with the markers and patholoy. Chest X-ray is done in adults as well. This is a time to be as assertive as you can possibly be, and get copies of all tests...you can start with the blood work and preliminary pathology report now. No reason why the doc can't at least give you that. Is this a urologist you're dealign with at this point or an oncologist?

[worriedmom]

Hiyas everyone
Right now we are seeing the urologist. It was C.Ms.I will get a copy of the blood tests and prelim report.We are in columbia SC . Thank you for all of the advice and least I dont feel so alone anymore .
Christine

[Karen]

You are definatley not alone!!!

[Kman99]

Christine,

That's a pretty big tumor. Was his testicle enlarged prior to it being removed?

Since you're in Columbia, the closest expert facilities are in Tenn - click the attached link

http://tcrc.acor.org/experts.html#tennessee

[dadmo]

Christine,
I don't want to make this anymore confusing then it already is but don't let the doctors do anything based on the tumor markers alone. I have to do some checking but I seem to remember that prepubescent boys will not have the same values as those that have been through puberty. Your son may appear to have elevated tumor markers when in reality they may be normal for his age.

[worriedmom]

Ok i will remeber that.I was told they were in normal range. His tumor was big his testical looked like it was the size of an egg.He had not said anything about it .If he had not been sitting in my lap in his underware I would not have found it we got lucky
Christine

[Karen]

Take a look at the attached article. May also direct you to other groups with experience in childhood tc.

[worriedmom]

Karen
Thank you for the info .
Christine