Primary or Secondary? Lymphoma risk.

[jjj3]

Hello all!  First I want to apologize for how much I'm worrying but I'm really having a hard time coping with this.  I'm so afraid I won't be here for my kids.  My first husband was killed in an accident 9 years ago when my daughters were 3 and 11 months.  I swore I'd do everything I could to make sure I would live to be really old, and now I'm afraid I'll get lymphoma.  I've spent (way too many) hours reading studies regarding lymphoma and SJS, hoping to find something to make me feel better, but I feel worse.  I have a lump under my arm that has been watched for years (doesn't show up on ultrasound, docs aren't worried, but watching), I have bad veins (purpura?) on legs, many lymphocytes in biopsy.  I'm a complete wreck right now.  I'm so sorry if I'm overreacting.

From all I've read, Primary SS carries a 5-10% risk of lymphoma, with not much elevated risk for secondary.  I don't know which I am.  Can you all help with that?  I am hypothyroid after half my thyroid gland was removed due to a benign tumor.  My dentist said perhaps that triggered autoimmune thyroiditis and thus, we can assume secondary.  However, I read one study of patients with Primary SS who were hypothyroid.  I still keep going back to that biopsy with so many cells (more than my ENT had seen in a long time).  In one study, that seemed to be an indicator of increased risk.  Do any of you know the answer?  I don't see the rheumy until June 23rd and I very well may drive myself crazy by then.

Again, I'm so sorry for my craziness.  I'm just really losing it here.

Thank you everyone.

Cathy

[Scottietottie]

Hi Cathy 

I can understand you worrying and of copurse you want to be there for your kids but you don't want to worry yourself to death - as that would defeat the purpose!   

Statistics can make things look worse than they are and I truly think the lymphoma statistics do that.  Out of a whole population a small percentage get lymphomas. Out od a whole population and very small percentage get SjS. Within those with SjS there is a marginally increased chance of getting lymphoma but I understand that it tends to be a treatable lymphoma.

Statistically we a all far more likely to get killed in an automobile or crossing a road!

Write all your questions and concerns down for your doc so you make sure you ask him as much as possible in June and hopefully he'll reassure you. It must be an added worry when you've had a tumour removed from your thyroid but at least it was benign. Is the swelling in your armpit tender - or just 'there'. has it grown? Could it be a blocked sweat gland? It's good that someone's keeping an eye on it anyway.

You've got to banish the fears of what 'may' happen (and may not) to the back of your head and enjoy your kids in the here and now, dealing with the 'is happening!'

Take care - Scottie 

[jjj3]

Thanks for the quick response Scottie.  The doctors believe that the lump in my armpit is a large lymph node.  It's not tender, it's moveable, not hard, and has been there at least 3 years.  I've also had melanoma, so perhaps my cancer worry is a little higher than most because of that.  I really wish the ENT who did the biopsy would not have told me that he has seen that many lymphocytes "in a really long time". 

Can anyone chime in on whether my SJS could be secondary to the thyroid problem?  I don't know if my hypothyroidism is considered autoimmune.  Thanks everyone!

[Annj5]

Hi Cathy,

When I was first diagnosed, the lymphoma statistics really freaked me out too! It was always something in the back of my mind that I worried about.

When I went to a national conference on Sjogren's, I had a chance to talk to one of the speakers there (a physician involved in research in autoimmune disease). I asked him specifically about lymphoma. His response to me was basically that the lymphoma related to Sjogren's is not only very treatable - but most often curable. This made me feel so much more at ease about this potential problem.

I agree with Scottie - this is a worrisome issue but it helps to put it into perspective with other, more immediate risks.

Hugs,
Julia

[jjj3]

Scottie and Julia,

Thank you so much.  I feel a little better.  Julia, your response brought tears (happy tears) to my eyes.  I've read so many scary things.  Perhaps the survival statistics I read were from studies done before the low grade lymphomas were so treatable. 

Thank you again!
Cathy

[Linda196]

Cathy, the only way to know if your SjS is secondary to Autoimmune thyroiditis, is to have a definite diagnosis of AI Thyroiditis. That requires the presence of antithyroid antibodies in the blood.

The comment by your doctor about "the most lymphocytes he'd seen in a long time" is quite misleading to me. A saliva duct is fairly large, compared to the minor salivary glands that a biopsy shows. For example, the 2 to 6 glands included in a biopsy specimen of 4 mm² contribute only a small portion of the total amount collected by each duct. A positive biopsy relies on the presence of at least 50 cells in a minimum of 4 glands, and even if they were the only glands draining into a duct, that would indicate at least 200 cells in the duct. Please, before you let this worry you to death, ask your doctor for clarification, and tell him that his comment caused you distress.

[Scottietottie]

Hi again Cathy 

I have Hashimoto's thyroiditis (autoimmune) and was dxd with it before I got an SjS dx. In fact it was my endo who ordered the blood tests when I asked her if mercury fillings could have had anything to do with my thyrooid going wrong. She put bad mouth together with autoimmune and did the tests which got me referred to a rheumatologist.

I think the SjS had been there for a lot longer than the thyroid problem though although both had been there way before dx of either.

Autoimmune diseases seem to come in 'packs'. (Not always!)

Take care - Scottie 

[jjj3]

Linda & Scottie -

Thanks for the info.  I'll ask about autoimmune thyroid antibodies in my blood, but not sure if they would show up since I'm on synthroid (??).  When I was diagnosed as hypothyroid, it was because my TSH was high.  Does that mean my thyroid problem is autoimmune?  I'll talk to the rheumatologist about this in a month.  It's so nice to have all of you here to answer questions since a month is a long time to wait when your frantic and in tears all the time.  I know I'll get to a place where I can be reasonable again, I'm just not there yet.  Part of my problem is that I'm in terrible pain from the biopsy, in addition to all the mouth pain, burning and raw tongue I had for three years.  (The good news is that at this rate, my skinny jeans might fit in a couple more weeks  )

Linda, thanks for the info on the biopsy, ducts, etc.  I don't fully understand it.  The ENT (whom is the top ENT in the area, and I believe him to be an excellent and well respected doctor) took two chunks out of the inside of my lower lip.  He said that there will be many minor salivary glands in each piece he removed.  I'm pretty sure he said more than 50 lymphocytes were found in each duct, but perhaps he meant in each gland or each 4mm2 specimen.  I'll definitely clarify this when I see him next week.  Nonetheless, the fact that he does so many of these and it was higher than he's seen in a "very long time" has me incredibly worried that I will either be someone that has a fast progression of the disease or lymphoma.  Any thoughts?

Now, for a really important question.  If I start on plaquenil, can I really not ever have another glass of red wine?  Also, does it really slow down the progression and lessen the chance of lymphoma?

Again, a HUGE thank you to all of you.  I hope that once I calm down (I promise, I will), I can be as helpful to someone else as you are to me.

Cathy

[eyeamdry]

Hi Cathy-
You've got some really good answers here.  I'm glad you found this website.  It's a wealth of information. 

One thing I'd like to bring to the front burner, though, is the lump under your arm.  If i was you, after "watching" this lump for several years, I'd tell the docs you want a biopsy.  I tell you this because I, too, had a lump "they" were watching for several years.  It was on the side or my breast.  It didn't show up on ultrasound etc.  After my physical last year, I told my doc I wanted the lump OUT.  Well, they did a regular mammogram, then an ultrasound and told me I'd have to see a surgeon.  I'd already had a surgeon lined up.  This lump was cancer, and it really ticks me off to think we "were watching it." for so long.

I'd not be bothered by the lip biopsy, or whether you have primary or secondary Sjogrens rather than this lump under your arm.  It's been there for "several" years.  Get it out.  Not trying to scare you, but worrying about lymphoma while you have a lump already in place is not a good idea.  Good luck.  You should probably go to a breast clinic or a women's center for this checking on the lump.  Your rheumy and other docs won't be as aggressive.  Lucy

P.S. My Sjogrens is Primary.........at least so far.

[jjj3]

Lucy,

You're right.  I really should do that.  I should add that in addition to the ultrasound and mammogram (both normal), I also saw an oncologist for his opinion, a surgeon, and a top surgical oncologist who specializes in breast cancer.  Only the first oncologist (his specialty is not breast cancer) said we should watch it, but only as a precaution.  The surgical oncologist said it's absolutely fine, she's confident.   (Can you tell I'm trying to convince myself it's OK?).  With that said, I realize that you are right and I should have it taken out as that is the only way to be 100% sure.  On the other hand, would the additional info I've put in here change your mind?

Thanks,
Cathy

[eyeamdry]

With that said, I realize that you are right and I should have it taken out as that is the only way to be 100% sure.  On the other hand, would the additional info I've put in here change your mind?

Hi Cathy, no what you've said would not make a difference to me.  While i was busy trying to get my Sjogrens diagnosed and wondered why I was feeling like the wrath of God, this lump was in the side of my breast and I literally paid no attention to it.  It WAS cancer.  If I, or anyone I know ever has a lump, I suggest they have a biopsy at once.  My lump was not hard like most cancers, and it was not attached to the chest wall like most. 

I was diagnosed with Sjogrens in September 2006, began to feel better with Sjogrens medications and then had a biopsy in March 2007 which turned out to be cancer.  I AM NOT TRYING TO SCARE YOU.  A biopsy is no big deal, or surgical removal is even better since you've had the lump for some time.  My daughter just began having mammograms and with my having b. cancer, she is a little scared.  Well, it so happens she had a lump under her arm for the first mammogram.  I made sure she followed up carefully with her doctor, but her lump went away after a month or two. 

Sjogrens will likely not kill any of us.  Breast cancer will and can, if ignored.  It was just a year ago, the day after Memorial Day that I started my 33 rounds of radiation.  I'm not saying any more about this, because I know I sound rather bossy.  In all you wrote, though, you're not paying attention to the most important thing.  Hugs..........Lucy

[irish]

Cathy, Like Lucy said, get that lump biopsied. It has been there 3 years and it is driving you nutz. Probably benign but get rid of it!!!

Also, if you worry about the Lymphoma all the time you may die of a stroke or heart attack from the stress. I think that having Sjogrens has made me more realistic about my goals in life. There are so many things that are important and worrying is not on the list. Googling can drive a person crazy. Much of the stuff that is on the internet is not backed up by science. Lots of junk out there to worry us if we let it. When I see things on the internet I always figure that much of it isn't true and needs to be qualified. I am a RN as are several others and I can tell you that the internet does not make it easy to live with a disease. There is a lot of good info out there but a person has to learn how to sort through the "crap" pardon me!!!!

You do have a bigger chance of getting hit by a truck crossing the street than you do with the lymphoma. The important thing to learn is what to watch for and when to report things to a doctor. That is all we can do. If we sit and wait for the other shoe to drop we will miss out on life.

I can understand your great fear of leaving your children alone---such a terrible loss you had to go through. Do try and relax though and know that the fatality rate with Sjogrens is really very, very, very low. I don't like having Sjogrens, but when I think of many of the other diseases out there I will keep what I have been given. Irish

[jjj3]

Lucy and Irish,

You are both right.  I will make an appt. with the oncologist so we can get it removed. 

Lucy,  you don't sound bossy at all.  You are just someone trying to be helpful so that others can benefit from your experience.  After I had a mole removed that was melanoma, you should have heard me go on about sun safety to all of my friends.  It was all I could do not to say something to complete strangers when I saw heavy tanning or sunburns.  I had to actually stop myself on several occasions!  So no, you are not bossy.  You (all of you in this thread) are simply being caring people, and I appreciate that.

Thanks everyone!

Cathy