i am wondering if there any specific questions i should ask. I am kind of in a cloud right now. Shes had 2 abnormal chest xrays and finally a CT showed abnormally enlarged lymph nodes in the right hilum extending to the mediastinum, And several other things. She has constant head itching and lower leg itching (seen allergist for severe hives at one point and she isnt allergic to anything they tested her for..said she has 'hive condition') and now pain in her shoulder..not the bone..just right where the neck and shoulder meet..that soft area. Her pulmo called and talked to the oncologist and he said she needed to be seen. I keep telling myself there are other reasons other than cancer that we are going to an oncologist..but i want to be prepared when we do go. So any advice, other than do not go nuts in the meantime? lol
You do not say what the abnormal chest Xrays revealed, just that they were abnormal. Any specifics?
The lymph node abnormalities (right hilum extending to the mediastinum), could be one of several issues. You should ask your doc about the follow possibilities: Infection in the lung area, Tuberculosis, Sarcoidosis, Lymphoma.
I suppose the CT did not show enlarged lymph nodes in the neck/shoulder area?
Possible further testing: Pulmonary Function Testing
The itching should be studied and write down the exact areas and types. The following is not suggesting a diagnosis, but provided for your review:
Don't be surprised if the doc wants to "watch and wait" and do a re-test in a couple months. Also be prepared that a diagnosis may not be made for a while.
Keep a clear head and write down all symptoms, no matter how irrelevant they may seem. Read the list to the Onc. Get copies of all test results at the end of each visit.
We hope all goes well for your daughter.
I just had to write in because of your screen log on...
I know it is very trying right now. If the physicians are trying to rule out or rule in blood cancers, there will blood tests (especially white counts). Sometimes these are a clear sign, but other times not. If the nodes are large but they are still not sure, they may also try to use antibiotics for a while, to see if an infection is causing the lymph nodes to be large. (This doesn't help if a virus is causing the large nodes). They also may consider doing a bone marrow biopsy.
If you can bring a friend or a relative who is really good about writing things down to appointments, that person can help record information from the doctors, or if you have questions you want to ask, that person can go through your check list and make sure you get everything covered you want to. I was particularly flaky about not getting all my questions asked and then torturing myself when I still didn't know.
If you are a worried mom, then I'm sure you're looking for information everywhere. There is a thread in the "My child has cancer" section called "How was your child diagnosed." Just as a head's up, people post there when something is confusing, troubling, & not going well. So I hope the whole section isn't scary to read. A lot of the time, our kids are doing fine, but we don't (usually) write in with a comment like this "having a great month, all things as expected." However, I think it might be a good thing here, since of all the comments I've read, I don't remember anyone's child having a lot of itching or joint issues. Here is that thread:
I would second the suggestion to keep a diary of symptoms, but maybe also what she's eaten, animals around, etc, in case they are trying to ID an immune response to something in the environment.
first i want to say thank you for your responses. Yes we finally got answer yesterday. She has a fungal infection-histoplasmosis. Very common around here. We have to do follow up blood work to check for false positive and also to check if the disease is still active. Then CT checks every 3 months to make sure the lymph nodes are reducing. If they are not, then she will proceed to biopsy to see if there is something else besides the infection going on. The medastinum nodes are very enlarged, but they are confident that it is just the fungal infection causing it. My prayers and thoughts are with all of you fighting cancer.