Feels Like The Run Around

for 5 months i've had two swollen lymph nodes under my chin, painless and pretty large. i went to my primary doc and she did some blood tests and everything was normal save for a little bit of anemia, but to play it safe she sent me to an ent.

first appointment with him was all of 5 minutes. he felt my neck, but only the area i had pointed out, told me he wanted a ct scan and to come back after that. then he asked me if i was feeling any other symptoms, but didnt specify symptoms of what? i told him i'd been sweating at night and had little to no appetite. he scribbled something down and then told me to schedule an appointment with the lady at the desk. 

2 days later i had the ct scan, and today i did the follow up...only it was like a 180. he said that my lymph nodes were in deed enlarged, and then went on like i knew what he was talking about, size and shape wise. my first appointment he seemed at least a little interested in my nodes, but today he told me that it was probably nothing to worry about and he wants to just watch and wait. . .it's already been almost 5 1/2 months now...how much waiting does he want? so i asked him what else could be done, then he went into a byiopsy, talking about removing my node. 

finally we settled on doing another cbc, and something to look for virus' in my blood, so i'm stuck waiting for the results and feeling really frustrated by his seeming lack of interest. i dont know if my worrying is unnecessary but i've had a bad run with docs actually paying attention, and i just dont want to miss something that is literally right in front of him.

any advice would be appreciated greatly

max 

Hello Max by all means I am not trying to scare you by telling you the following.  In April I noticed my one of my tonsils was swollen my Dr sent me to the ENT after penicillin did not get rid of the swelling. They ran a ct scan, a week later I had surgery to remove them. May1st I returned to the Dr only for them to tell me that they did a biopsy on my tonsils and found Non Hodgkins Lymphoma  At that point they ran some more tests right away and found it in more parts of my body.  I will let you know that It wasn’t easy to get where im at now.  I had to switch doctors and go to several opinions.  Run around wasn’t even the word for what they did to me!!.   I do suggest that if you feel that the ENT or DR you are seeing is not taking your matter serious enough you may need to consider switching. Better safe then sorry. Its your life and remember we only get one.  You have to be on top of the Docs for answers or else they’ll just leave you in limbo.  I’m not saying all Doctors are like this but I found this to be the case with my personal experience Kepp me posted.

Good luck!   feel free to ask me anything.

Thanks,

BDay Girl

MightyMax, I hope things will get better for you.  I have Non-Hodgkins b-cell follicular lymphoma, and was diagnosed in April 2006.  Mine is still in the "indolent" (or slow growing) stage.  Thank God I have been on the old "wait and watch" approach since diagnosis.  When your doctor scheduled the ct scan, he found what he needed to know to set your observation, and you should be getting another ct scan, if not before, at least at the one year mark.  You need to be ready to ask him *all* the questions you need answers to, and if you don't feel like he is the right doctor, tell him you want a second opinion, or ask your personal physician to find you another doctor.

The main thing that I found they were looking for as far as symptoms go is night sweats, itching (but no rash), and unexplained or unplanned weight loss.  Perhaps you need to be more direct when mentioning your night sweats.  Let him know how little you know, and how frightened you are.  When told directly how you feel, he might be able to help you understand more about where you are at physically with your illness.  Mine felt that I needed to be on some type of anti-anxiety medication, but sometimes I just need to be told I am doing alright, and I don't want to start any meds until absolutely necessary, and I explained that to him and am doing fine.

I know sooner or later I will have to go on chemo, it's not exactly avoidable, but I have developed some different interests that allow me to concentrate on things other than my health.  That alone has saved my sanity...

The longer you do the wait and watch, the longer you have to live.  I'm not being flip.  I just have learned that I am living for life, and not waiting to die...  I did do that, too.  A positive attitude is hard to find this early in the diagnosis for you, and it was for me, too.  But a positive attitude will help you deal with this a lot better, and I think it will lengthen your life.

I wish you luck, and well being.  It is a hard life to live, but we can't give up!  And I hope you don't have to go with a biopsy or removal of the gland.  My biopsy came back inconclusive, and they removed the largest of the lumps for testing.  It's painful, and the lumps will always be there, worrying you if you let them...  Driving you crazy.

Keep me informed, please.  And I hope you listen to your heart on how to best cope with this, and realize that if you are not in an aggressive stage, you are really doing okay.  It may not seem like it, but you are.

Best wishes!!