I have a long story, but will try to keep it as short as possible.
I have been sick since October, high WBCs sometimes, chills, Strep Throat, The Crud, weakness, alot of drainage.
I was eventually sent to an Oncologist. He did a Bone Marrow Biopsy and PET Scan. Bone Marrow Biopsy came back OK but PET Scan revealed increased uptake of inflammation/infection in one of my neck lymph nodes. The condition is called lymphadenitis. As some of you may know, this is where a lymph node can be secondary to oral cancer.
The PET Scan also mentioned the importance of going to see my dentist, as did my Oncologist.
I am VERY VERY Scared. I have not examined my mouth, but I do notice that I feel something in my throat when I eat or drink. Like something is getting moved around. I read that this is one symptom or oral cancer.
I have only a few questions, does Oral Cancer show on a PET Scan?? My oncolgist kept repeating, see a dentist and the PET scan report also said "DENTAL".
I am so glad that you posted something!! I have tried to get someone to respond to me on so many message boards and never received an answer anywhere. Thank you very much for your caring!!
I hope you read this response.
Yes, I am a smoker, (very hard to say). I have been smoking since I was 16, but did quit for 7 years. I am 39 years old. I rarely drink.
I have been doing so much researching on the internet and most all of it is very bad. I read that lymphadenitis that happens in adults can be something serious, as opposed to children and teenagers.
One more thing I wanted to mention, if I already didn't in my previous post (cannot remember) brain fog, it's late. This lymph node is invisible, I cannot even feel it (I know that it it the submandibular node). It is not swollen, nor does it hurt. Never would have known it was there except for the PET Scan.
I think the Oncologist might have just turned me over to the Dentist to take care of the situation. I seen how he handled my mother with her Ovarian Cancer. Please excuse me when I explain this, but when he told my mother that she had Ovarian Cancer (late stages), he gave her very high hopes of cure, that put a sour taste in my mouth right off the bat, because I was already familiar with Ovarian Cancer and I knew what the outcome would be in the end.
I read that lymphadenitis from the submandibular node can come from dental issues (including oral cancer) due to my age.
One more thing that you mentioned about the lymph node getting bigger if it had it in it. I know that the lymph node is imflammed/infected because the PET Scan reported it, so I know there is no cancer in the node itself. But the fact that where the node (lymphadenitis) is means that it could possibly oral cancer.
Could I have this from my recurrent infections and sickness since last October?
Thanks again, I really appreciate your help!!
Last edited by futurehope; 03-22-2006 at 11:20 PM.
I have loads of probs with lymph nodes, lymphedenitis, and I have discovered after wisdom tooth removal and other dental problems that actually never existed, that the swollen glands and pain are all coming from viral problems and I have developed osteomyelitis in one wisdom tooth site from all of the bacteria it was floating in. I had parotitis and now HHV6. Don't jump to conclusions about cancer. Relax...stressing will only make it all worse. Try an ENT as well and get tested for viral things. Make sure you haven't got some bug or whatever before somebody starts digging around in your mouth...it will only cause more problems like osteomyelitis. If your teeth don't hurt directly (pain from below and not from top of tooth), then it I would say that it is not dental but a gland problem of viral or bacterial origin.
Hope that helps.
Let us know how you got on...
I did make it to the Dentist today. He and the hygentist looked at my mouth for so long, checking everything, even took some special x-rays. They found absolutely nothing!!! I wish they would have taken a sample of my gums and tested it.
They did tell me to go to my regular MD and get a referral to an ENT.
Which band of lymph nodes was your lymphedenitis located in?
I just do not understand why I keep getting these infections with high WBCs sometimes. Once in the 19 thousands.
I try to relax, but I have Panic Disorder and this whole going to the Oncologist/Cancer thing brought my panic back after it was in remission for 3 1/2 years!! My meds have been upped quite a bit, panic and anxiety gone, but I still worry.
Monday, I went to see an Infectious Disease Specialist and all he would test me for was Cat Scratch, Histoplasmosis and EBV!! Made me so upset, tried to explain to him that there were other things I wanted to be tested for. He had the nerve to say to me that if we find something, he believed that there would be an underlying problem like an immune disorder because of my previous health history.
Is this how you found your parotitis and HVV6? (through an Infectious Disease Specialist)?
This last 5 months has been killing me emotionally and I am down to 86 lbs. I am 5' 3 1/2 inches tall.
Thank you for responding to me and helping!!
I hope you see this response and get a chance to respond back and I hope you are feeling well!!!
Just relax and stay healthy food-wise and weight-wise or you will just make your immune system even weaker....I made that mistake because the nausea was and is unbearable at times but giving in to it has just made my system weaker so rather than it just being a regular case of HHV6, EBV and CMV that sometimes passes by without notice, I have developed ones considered for immunocompromised patients.
Firstly, I visted lots of dentists because I was clueless about it possibly being connected with viral illnesses etc...and I made the connection with infant roseola that I had contracted when I was about two, with HHV6 after one year of dental agony. I was given neurological medication to improve some secondary trigeminal nerve problems due to bad dental work and it was this very medication that trigerred the HHV6. Little did I know about it all at the time so when I suddenly developed nausea, lymphedentis, muscle weakness to the point of not being able to stand up, joint pain etc... it was too late to just stop taking the meds. Normally it takes 3 months for medicine induced lymphedenitis to return to normal but it woke up the HHV6 in me which has been worsened by high EBV and moderate CMV. I underwent parotitis which the dentist and doctor blamed on my wisdom teeth but who knows. It all seems to be connected somehow. I had a high level of staph and strep when they removed my wisdom teeth and one other tooth without any antibiotic protection so I think that that has also caused a mess in my mouth and the possible osteomyelitis that my weakened immune system can't fight off.
My lymphedenitis was generalised so it was felt all over my body, groin, lungs, armpits, but especially in the head area: back of neck and salivary glands. It has focussed itself on my head area now and when the load gets high, my legs get the wobblies because my groin swells.
Patience with the blood tests. The drs will follow a process of elimination, trying to eliminate the most common and likely things first (the tests for these things are also cheaper for them). If nothing is positive, then they will add some of the more complex tests for cultivating. When someone shows up with generalised lymphedentis, it is difficult to diagnose. If it is contained in certain areas, it narrows the possiblities down. Where are you swollen? Just the salivary glands? Your ENT will take a sample of your glands if he thinks it is necessary. I had a parotid biopsy done, very painful, because of the parotitis and a submandibular gland biopsy because of the lumpy jaw and pain. I literally looked like a chipmunk and the glands were hot and painful to the touch. Because nobody knew what was wrong, I was sent running back and forth from the ENT to the dentist and then finally the autoimmunologist who eliminated Sjogrens and other autoimmune causes of gland swelling. The drs wasted a lot of time and money on me because had my GP listened to me in the summer when I mentioned the HHV6 and roseola connection and that maybe I should be tested for that, he said he didn't know what it was and refused to do. Well, 2 MRIs, 1 CT scan, 1 izotop and about 10 blood tests later it i sback to square one. I feel like crying but yet I have to laugh at some of the ridiculous drs I bumped into along the way and the horrific experiences.
The next step for me...I seem to be doing it all backwards...is the infectious diseases dr or immunologist to determine to what extent all of the viruses have affected me. My body seems to be giving in to it all and not fighting at all so it is annoying me. I am drained from just walking or gardening for 5 minutes. In some way, bacterial is better because there is something the drs can do about it but viral sucks as there is very little that can be done. I also have to have the lower left jaw looked at which is a bit of a nightmare. I am worried about losing more teeth especially since certain immune problems don't allow your body to accept implants well. It is either osteo, a fractured tooth or the IAN has been affected by dodgy dental extractions.
Sorry for my rambling. The whole story is a long and complex one with many contributing factors.
Just stay strong, eat well and pamper yourself to keep stress and anxiety down. I also have anxiety problems and I am trying to keep them at bay to help strengthen my system.
Take good care,
Let us know how things go and ask about whatever you like...learning from others is often more helpful than drs who have never felt any pain and suffering.