Causes of secondary lymphedema?

[mzchief]

my GP suspects i have lymphoma, and has referred me onto the hospital.  i have many enlarged nodes in all the usual places, neck, underarm, groin.  most are painless.  a node inside the elbow however has caused what i think would be lymphedema.  it was first enlarged and spongy, then turned hard so i can't really feel a node now, just lots of swelling in the area.  the hardness has spread right down to my forearm and i have another bump/hardness near my wrist also.  
the doc i finally saw at the hospital however, was more concerned about a hard mass he felt in my left breast.  last week i had a chest xray, CT scan of the abdomen and chest.  no results until i hear from them.  but i got an urgent letter asking to go for a mammogram next tuesday, so i'm anxiously waiting.
however, all searches i do on lymphedema point to secondary lymphedema being connected to breast cancer and radiation treatment or removal of axillary nodes.

my question is... can you get lymphedema before any diagnosis or treatment of breast cancer?  my arm actually hurts now, it's very tender underneath the upper arm and very tight to bend at the elbow.  as it seems to have progressed pretty fast in the past month, i'm wondering if i should try and get seen earlier.  i have an appointment with a surgeon on may 29th is it ok to wait until then?

thanks so much for any advice.

[Cleveland Clinic]

Dear mzchief:  Lymphedema (of the arm) is a swelling that generally starts in the fingertips and moves up the arm.  It is caused by damage to the lymphatic drainage system.  The most common causes are axillary lymph node dissection +/- radiation therapy associated with breast cancer.  It is possible, however, for other conditions affecting the lymph nodes and causing them to enlarge to cause lymphedema.  The hard lump in your arm is not characteristic of lymphedema.  If your doctor is not aware of the changes that are occurring so quickly, you may want to give a call and see if your appointment could be moved up.  

[mzchief]

thanks so much for your prompt reply.
after all the reading i have done, i never knew lymphedema started in the fingers. so, i'm glad i posted my question!  i'm sure my swelling started inside the elbow, not the fingers.  although my hands in general are a bit swollen because my rings don't fit.  to be honest, all of my symptoms have gradually appeared over quite a long period of time, so i can't really be sure of what started first.

i will call the hospital on monday and see if i can see someone sooner.  although i feel they will just ask me to wait as my appointment is only 11 days away.  still, i think i'll push it along a bit simply because of the discomfort and tenderness i now have in my arm.

thanks again :)

[boninclyde]

I would try to push the appointment up sooner. Tell the of the pain. If it is something early diagnosis is very important but it sounds like this has been going on for a while. Infection (cuts, colds, flu) can also cause lymph nodes to swell. Does the breast hurt, itch or burn? Keep us posted.

[mzchief]

thanks for your reply and concern.  i actually didn't bother trying to move my appointment forward as it is just days since my mammogram.  i had that on thursday and my appointment is next tuesday.  so it's not such a big wait now.  even though it's been a very long time since i have been filling ill.

and, i've researched lots and am aware there are many reasons lymph nodes are enlarged.  i don't have a cold/flu or infection to my knowledge.  when my doc discovered them in march, she put me on 7 day course of amoxillin and no changes.  the nodes continue to grow in size.  as for pain in the breasts - no, not really.  certainly no itching or burning.  although one of the first symptoms i went to the docs with - before the summer of 2006, was sharp shooting pains in my chest.  she sent me for an ECG! even though they are actually in my breasts! i get those pains occasionally only.  so i thought nothing to worry about. not long now.. time will tell.  i'm crossing all digits :)

[mzchief]

hi there, just wanted to pop back and let you know that my mammogram was all clear! :) and, so was the CT scan, so i'm free from any nasties and that's a relief.  the consultant has said he thinks what i have is a "post viral" thing, which probably means ME/chronic fatigue syndrome.  i still have enlarged nodes so am pursuing this further.  although in a very tired and slow kind of way.
thanks for the responses, it was invaluable.

[boninclyde]

Thank you for up dating us. Good news it is not cancer. I am not to familiar with the other diagnosis. I am sure there is a forum on here that could help you though. I wish you the best.