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Sjogrens Topics => Living With Sjogren's => Topic started by: dry2010 on June 09, 2011, 10:25:26 AM

Title: Ongoing Saga
Post by: dry2010 on June 09, 2011, 10:25:26 AM
 :( I have been to the Rhuemy for lumps in my neck thought it was sjogrens related gave me pred took it a couple of months weened off. Lumps still there so went to ENT who did a ct of the neck report says no lymphendopathy. Now have raised white bumps behind my tongue can't see unless you move my tongue still not sure what they are my brain screams cancer. I also went for my yearly mammogram on this past monday and they called me today I need additional mammo and ultrasound something has changed from November was having discomfort so had a ultrasound decided it was a cyst. all these things are on the left side of my body so now I am totally terrified that I have cancer that is spreading because no real resolution was ever reachd.

Has anyone had these bumps in the back behind there tongue? Anyway my husband is going with me to the ENT tomorrow to get him to get serious and do some biopsies. Another thing my neck hurts when I sleep.

Title: Re: Ongoing Saga
Post by: Cheryl on June 09, 2011, 01:30:20 PM
Please don't borrow trouble.   I know that it's hard not to worry, but there can be explanations for your symptoms that have nothing to do with cancer.   Sjogrens sometimes gives us swellings, bumps, etc. that are never explained at all.

I hope your visit to the ENT puts your mind at rest about the neck lumps and that your recheck on the mammogram shows no problems.  Hang in there!
Title: Re: Ongoing Saga
Post by: Patze on June 09, 2011, 01:40:03 PM
Hi Dry,

No I've not had white lumps in my neck (had some years ago but went away on their own), and never under my tongue.

Good luck at the ENTs and I'll keep my fingers crossed too (way to go hubby :)).

Take care of yourself, okay?  And don't forget to keep us updated!

Title: Re: Ongoing Saga
Post by: KellyG999 on June 09, 2011, 04:21:22 PM
Hi there. I get raised white bumps far in the back on my tongue which makes swallowing even more difficult than just from the dryness. It's annoying at best, debilitating for me at times at worst. Keep a positive attitude - cancer shouldn't even be in your thought process! You don't need the extra worry.

I remain unimpressed with rheumatologists and their knowledge of "less text-book" type AI cases. If it doesn't jump right out, they seem to miss is. That's been my experience anyway. I am sure there are good ones and I aim to locate one.

Good luck.

Title: Re: Ongoing Saga
Post by: Pisces24 on June 09, 2011, 04:50:31 PM
I've had white raised bumps back on the tonsil part of my throat.  It was just an infection and antibiotics cleared it up.
I had to have another mammo too about 2 yrs ago. They did a needle biopsy and it wasn't cancer. So they put a marker there. Doesn't set off any airplane travel scanner though.  :D

If you have an infection,  your neck could hurt when you sleep.  I used to get my partroid gland swelled up (it is directly under both ears almost if not on the neck). One time is looked like I tried to swallow a tennis ball and it stuck.   It was infection backed up.

I had a needle aspiration on a lymph node in my outside neck a couple times. It is not bad - like a bad needle stick. They use air to suck up cells into the tube and then look at them under a microscope. Maybe that would be an idea as that gives them something to put under a microscope and see. AND, I take it you had a blood test?  If your ANA is high, that would point to your body fighting something.

Good Luck with the drs!
Title: Re: Ongoing Saga
Post by: eyeamdry on June 09, 2011, 06:39:18 PM
Kelly, I'd like to add something where you say: "you shouldn't even be thinking of cancer now...."  I will not say I disagree, but this attitude could be fatal. 
I got breast cancer 4 months after my Sjogrens diagnosis.  I mean I was dx with breast cancer after my SJS diagnosis.  I'd had a lump in my breast for some time and my GP said we'd watch it along with extra mammograms.  Well, I was so sick with Sjogrens, but didn't know what was wrong, I let this lump go longer than I normally would have.

So shortly after I was dx with SJS, (4 months) I finally got serious with my lump and told my GP I wanted it out.  He set up an appt with a surgeon.  I went down to have my regular mammogram and while they took the mammogram, I was told I'd better get in touch with a surgeon.  I'm standing there in one of those gowns that open in the front just looking at the radiologist.  They did an ultrasound and also repeated what they said.  I saw a surgeon a few days later who did the biopsy and it was indeed breast cancer.  I always tell people to never ignore lumps, bumps or anything that could be cancer.  I know we don't want to overburden ourselves.  It is so easy to forget one part of the body when another part isn't working right.  Well, folks, we can't do that.  It is not good to worry about having cancer, but it is good to get to a dr asap and have things checked out.  I was also dx with squamous cell skin cancer 4 days before my breast cancer.  That wasn't a very good week for me.  Am doing ok though.  Lucy
Title: Re: Ongoing Saga
Post by: KellyG999 on June 09, 2011, 08:31:45 PM
I didn't mean to imply it shouldn't be checked (cancer) just not to fill your mind with it while waiting for results. I have (over the years) caused myself a lot of extra suffering and fear worrying about things that I couldn't change. So, I guess a better message is, be cautious but think optimistically. Chances are, it will be negative! - Cancer is not to be ignored.
Title: Re: Ongoing Saga
Post by: Joe S. on June 09, 2011, 09:07:28 PM
When I was at the dentist today they checked the back of my neck for lymph infections as well as glands and other lymph nodes. I was told that in their office it is standard for Sjogren's patients. (There may be complication issues that they are trying to be aware of.)
Title: Re: Ongoing Saga
Post by: newhorizons on June 09, 2011, 09:33:21 PM
Hi Dry, Lately the use of a tongue cleaner has helped keep my tongue from having these bumps on very back of tongue.

Also, use Natural Tea Tree Oil Toothpaste purchased at Natural Food Store. Use it every day of two or especially when my tongue burns at back and little mouth mirror indicates bumps starting to form.

These two items, tongue cleaner and TTO toothpaste have prevented me from having any mouth ulcers in many, many months.

No cavities last year adds to the plus of my thinking; just don't forget to floss those teeth.

Weekly I have issues with swollen parotid gland and all is worst on the right side of my body.  My daughter that also has Sjogren's is complaining that all her bad joint and gland issues are on her right side, also. 

This AI issue has to be coming through the genes and something is triggering it.  Think the researchers are on the right track, just got to find what is environmentally 'sealing the SS deal'.   

Title: Re: Ongoing Saga
Post by: irish on June 09, 2011, 09:40:22 PM
Do not panic over the white spots under your tongue. There are salivary ducts that open into the floor of our mouths and they are located under the tongue on sides. These can have drainage "laying" in the opening of the duct. There can also be little salivary stones found in these ducts on occasion. I have had these for years and they get so hard and sore. I use the warm packs and massage the floor of my mouth with my middle finger to help loosen up the thick mucus so that it is easier to be drained out.

The salivary glands that have ducts that drain into the floor of the mouth are the submandibular and sublingual. There are a couple ducts that drain into the floor of the mouth right at the front of the frenum of the tongue. That is the tissue that attaches the tongue to the floor of the mouth.

Also, please do not panic about the area in your breasts. First of all, I agree with Lucy. Lumps in the breast are nothing to mess with. I will then add that Sjogrens affects the secreting tissues in the breast. We can have swollen, sore breast tissue (usually on the sides of the breast and a ways up under the arms plus underneath the breast). I have dealt with this for 50 years. I had my first mammogram when I was about 21 and had several little hard spots in one breast.

In the past couple of years I have been called 2 different times to come back in and have more scans/ultrasounds done to recheck a couple areas. I can't remember what the first one was about, but the last time they found an enlarged lymph node in my breast tissue. This is a typical symptom of the Sjogrens. It was gone the next time I had a follow up mamogram.

I have had so many mammograms over the years that I think I will get breast cancer from over exposure to the radiation. Remember, I am old and the older x-ray machines were not as safe.

I guess if it was me I would try to not get to wound up about things until you find out if it is worth wasting the energy. When we have sjogrens the stress of all this worry and upset is really hard on us. You will find that you will have a lot of "owies" over the years with sjogrens. After a while you will find that it pays to stay calm until the doc tells you to worry. This maybe sounds weird, but there have been so many times in my life that I have had bad things happen and when I think back I wonder why it didn't kill me. Not everything we suffer with is fatal, we just think it is.

Also, be aware that swollen nodes in the neck or anywhere else usually hurt off and on. Some people have a ton of pain and others can be really swollen and hardly suffer. We just have to make sure to get these lumps checked out so the docs can have a "baseline" and be familiar with our lumps. Good luck. Irish
Title: Re: Ongoing Saga
Post by: eyeamdry on June 09, 2011, 10:12:59 PM
To wit:  cancer is fatal if not treated, Sjogrens is not.   Some people here worry more about SJS more than I did cancer.  We already know most lumps in the breast or elsewhere are NOT cancerous.  The only way we know this, though if they don't go away, is to have a biopsy.  I cannot tell you how strongly I feel abot that.  Now, 4 years after both cancer and Sjogrens diagnosis, if I have a brand new pain somewhere in the body, do you think I worry if it's Sjogrens OR cancer.  Yep, if I think it's SJS, I don't worry. 

This brings in the fact that there are some things worse than Sjogrens.  Yeah, it's true.  It's true that some of the medications for Sjogrens are tough or unable to take.  Some cancer drugs are tough and unable to take.  I can take all the Sjogrens drugs I've tried.  I have discontinued some because they did not work, but not because they gave me problems.  Now, the cancer drugs are another story.  I've tried two post-cancer treatment drugs, Aramidex and Tamixofin.  I was sick in bed with the first and with Tamoxifin it took a year to give me bleeding from the uterus and I'm still working with that one.

I am sorry to mess up this thread.  I won't post anything more about this here.  Promise.  But I don't want people to forget there are worse things than Sjogrens.  Cancer is probably only one.  Best to all, Lucy
Title: Re: Ongoing Saga
Post by: dry2010 on June 11, 2011, 07:55:23 AM
So I had my appt with the ENT said the white spots in my mouth behind my tongue were mucuos membranes no worries  :-\ Not quite sure I agree but I still am having problems with my left side neck which ct was clear no lymphendopathy. My ear crackles on that side he said no infection is from euthstatia tube I can have a tube like they do for kids that would solve the problem. It hurts when I lay down at night so I worry alot that he is missing something. He is sending me to a Neuroligist for my neck pain felt around says it is not lymph nodes could be spine/neck issues. Can't sleep I am exhausted..

I have to deal with my mammo redo wed so I am a total mess. I am so tired of all the weird things popping up all I pray it is all sjogrens betwee this and dealing with my son's death last March I am ready for the loony bin :(

Title: Re: Ongoing Saga
Post by: Joe S. on June 11, 2011, 08:46:27 AM
Dry2010, I am going to recommend the polar fleece mumps scarf. That helped me quite a bit with ear, tube, and gland noise and pain. I sleep with the mumps scarf to help me feel better.
Title: Re: Ongoing Saga
Post by: dry2010 on June 11, 2011, 08:55:04 AM
Where do you get the scarf ??