On 1/23/2008
KathyAM wrote:
Hi, I'm new here. I do not have a diagnosis yet but my internal medicine doctor thinks I either have lymphoma or I am reacting to something in the environment. I am 38 (almost 39), female, and have had enlarged lymph nodes for at least four months. I saw my internal medicine doctor three weeks ago, had a bunch of lab work that was normal, and then saw her again today. She noted no difference in the nodes and has referred me to an ENT doctor for biopsies.
I have enlarged lymph nodes: all of the left submandibular ones, behind the left ear, left tonsil, down the left side of my neck, left supraclavicular, a few left submandibular. They are painless and rubbery. Other symptoms: sleep study showed limb movements that occur while I'm asleep, including REM sleep (this is atypical of RLS, not sure if related to lymph nodes), reddish scaly patch of skin to the left of my nose resolved with a prescription antiinflammatory, very occasional night sweats - once a month at the most, and several times a day I will have a random burning sensations that last a few seconds up to several seconds...these occur just about anywhere and I'm not sure if they have any significance. Two years ago I tested positive for mononucleosis but am negative now. My problem right now is dealing with the possibility of having a potentially fatal disease, but at the same time thinking that I am worrying for nothing. If I do have it, I think I may have jeopardized my health by waiting so long for an appointment with my doctor. I could have seen another doctor earlier and then I would already know what was going on.
How did you deal with it, at first with the uncertaintly and waiting, and then with the actual diagnosis? I guess if you have to get cancer, lymphoma isn't the worst. My mother-in-law had Hodgkin's disease when she was in her teens and is now well into her sixties.
Thanks for reading. I don't want to worry my family too much about this, but need someone to talk to.
Kathy,
I read your message. I don't know if you have a diagnosis yet or not. My opinion is not to worry about things until they are real. If you are diagnosed with Lymphoma, it is not the end of the world. Like you said, your Mother-In-Law has survived for many years. If you do get the diagnosis of Lymphoma, there are many treatments for it. I am an oncology nurse and a 2 time lymphoma survivor. I had Chemo the first time in 2001,; and chemo/total body radiation/and stem cell transplant in 2006. If the biopsy diagnoses Lymphoma they will specify which cell type of Lymphoma you have and treat it accordingly. I still have follicular cells. I have 40% chance that they killed the diffuse large B-cells with the stem cell transplant. I live by the "Serinity Prayer" which says it all for me. Having had cancer has given me more appreciation for each day of life for what it is. I enjoy my days at work (I am able to encourage cancer patients daily as they see me doing well and working on my feet all day 12 hours shifts), and I enjoy my days with my family. Every single day of life is significant. You definetly need to stay on doctors until you are satisfied with your diagnosis and that an answer has been found. I was put off for 3 months before insisting they find out what my problem was. I finally went to the emergency room with a 102 temp, excruciating pain, and they told me the flu had been going around (it was September). I told them I have not had the flu for 3 months and they needed to find out what was wrong with me, I was not going home. So they did. Otherwise they wanted to send me home with the diagnosis of the flu. The second time, I had to have two biopsies before they got it right. They had not preserved the first sample properly and the B-cells disappeared before they got to the final destination lab. The cells were seen at the first 3 labs the slides were sent to, but not the 4th. They preserved the next biopsy properly and got it directly to the 4th destination and they saw the B-cells which are very aggressive cells and need to be delt with immediately. Follicular cells and slow growing and they just wait and watch till they cause a problem. You ARE responsible for your own health and do need to make the doctors do their job. I have faith in God first, and do have faith in my Oncologists to do what is best for me. You need to find a doctor you are confident in and feel comfortable with. Early detection, of course, is a key to cancer treatment. Actually, having cancer gave me the opportunity to take a look at my life, realize what is important, and live my life in that direction. I could go on forever with this, but will spare you. I do know that I am not going to save living my life until I retire, I am going to live it everyday as it comes.
God Bless You