Posted 6/16/2008 11:22 PM (GMT -6)
I understand your concern. I've both submandibular glands and surrounding lymph nodes out due to autoimmune disease and in one case they showed possible precancerous changes. Fortunately, they were taken out early, which has been my way of dealing with it. I also have scars all over my neck from the surgeries.
I also have been exposed to TB and had active TB for a short time period. From what I understand, active TB is very responsive to antiobiotics, and a chest xray should help clear that up. It's worth getting one if you test positive on the PPD skin tb test, and I would recommend getting one. I think TB is very misunderstood and underdiagnosed and treated in the US vs. other less developed countries where they see many more active cases and understand more the progression of the disease. There is a medication, INH, which can help if you test positive.
On the lymphoma side, I had something called a gallium scan which helped me alot, both to make me less afraid and to determine areas of inflammation and confirm my sjogrens diagnosis. It also can form a baseline for future scans. It did say possible lymphoma, but I don't feel that I have it now at least so I'm not worrying too much.
Gallium likes tumors, but it also likes inflammation of any kind, sinus infection, dry eyes, any inflammation. Your rheumatologist can order a gallium scan to determine if you have significant uptake of gallium in key lymph sites. This can help ease your concerns and also make the docs realize where you do have problems. I think everyone should have one once a year, at least anyone with a serious disease. It's like a full body cancer screen of sorts.
It's important that you pay attention to your neck size and swelling. You should see some of the swelling I had that occured really rapidly in my neck, I looked like Java the Hut--I had no neck, it was like a triagle from my head to shoulders, my neck was really swollen. Examining your mouth is important too to make sure that you aren't having any dark patches or constant irritation or problems. If your neck swells or glands swell elsewhere, you need to get them taken care of right away and if they stay swollen and don't go down, you need to push to get them dealt with. A good ENT is your friend there, especially one that might have some plastic surgery training. If you have trouble swallowing and things like that you need to get it checked out. Also, good dental care and making sure you don't have leaking filling or crowns will save your lymph nodes in your neck, most chronic irritation leading to non-functioning problematic glands comes from teeth, leaking fillings, crowns, or ear infections untreated.
The good news is that they have approved Rituxan, a medicine for lymphoma, for use in sjogrens syndrome (probably because we are 44x more likely to get lymphoma). You might ask about that and get information on it. Also, there was a press release someone here posted about plaquenil, being a tumor necrosis factor suppressant, possibly preventing cancer. This is a really good thing too. Mayo recommended I eat plenty of antioxidents and I try to eat or drink as much as I can. Crystal light has some good drinks that contain antioxidants if you can't have sugar.
I know how you feel and it is really frightening. I think Rituxan holds promise for me if my liver can handle it, but my rheumie after hearing what Mayo had to say, feels its too much of a risk for me unless I'm in dire need. I don't know if he will change his mind or not.
Anyway, I'm around, not always every day, but I understand your fear and you are wise to listen to your body and get these night sweats checked out. I went into really early menopause due to my autoimmune problems and endocrine, having polycystic ovary for a long time without knowing it and I got horrible night sweats. I found that the soy based over the counter estrogen replacements got rid of the night sweats, and so then I knew why I was having them. I think I took estroven.
The best thing is to have the doctor, and perhaps even see the OB/gyn, figure out whats going on and do some testing of your hormones and other stuff. In some ways its good your doc doesn't see them as part of lupus because it should cause him to check out every other possiblity first before just saying, "oh its your lupus" and you hopefully will get better care.
I hope you are okay and feel for you. I know your fear, but feel assured that some of the drugs we take are good at preventing a lot of problems, and I think drugs like Rituxan and other new drugs will be able to stop cancer before it starts. Lets hope so.
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn