Questions about Lymphoma

I have read in several places that people with Sjogren's Syndrome have a much higher chance of getting Non-Hodgins Lymphoma. I've seen varying odds, with some sources saying between 5-10 percent, and others slightly higher or lower. My rheumatologist said there is 2 to 3 times higher probability. So although there are different odds given, everyone does seem to agree that we have a higher risk overall. I have two questions...realistically, what do you think are the chances? Is this something I should be concerned about? Also, are there any early tests that can be done to check for lymphoma?

This is kind of scaring me because cancer already runs very strongly in my family. My grandma on my mom's side died of it, before I was born. (I think my grandmother on my dad's side might have died from cancer too). My mom had breast cancer, but fortunately it was caught very early, at Stage 1, and she is fine now. But my cousin died recently from an extremely aggressive Stage 4 brain cancer...it was only about 8 months from the first symptoms until she passed away.

Just because something might have a "low" statistical chance, that doesn't necessarily make me feel better. I already don't fit the statistics at all. According to the statistics, I shouldn't have even gotten Sjogren's Syndrome. I'm a young male. So I really need to kind of hear from people on a more personal level...does anyone here know of someone who has Sjogren's and then got lymphoma? Or did you end up getting it? Also, how dangerous or treatable is Lymphoma? I've heard different things about that too...some say the kind that people with Sjogren's usually get tends to progress very slowly and can be treated, others say it's more aggressive. I don't know what to think.

If anyone can tell me on a more personal, anecdotal level about this, that would be a huge help. I'm trying not to panic, but it feels like this might be a real concern I should have. Statistics don't mean much. Especially since, like I said, I already don't fit the statistics and the usual "demographic" for Sjogren's Syndrome.

Hi there Gatewaycityca, I can understand your concerns about lymphoma but it is easy to let your worries get out of proportion when, suddenly, you have something in your health profile which increases the risk of another condition. Especially when that risk condition is a cancer.

I don't know about lymphoma and Sjogren's specifically but I do know that any autoimmune condition is believed to raise your risk factor and that the biologic I inject into myself every month for my psoriatic arthritis is also believed to carry with it an increased risk of lymphoma. When I needed to weigh this up for myself and understand about lymphoma my doc pointed me towards the Lymphoma Association as somewhere I could trust the information provided. I know this is a UK site BUT I'm still giving you the link because I know the core information is accurate and I don't know a corresponding US site. One thing I think is really important is to deal in facts not hearsay, especially alot of the online hearsay. I hope you find this site helpful and reassuring, I did do a quick search with Sjogrens and it has brought up several references which you can check out.

And it's easy to say but less easy to do, please try not to panic because it doesn't change anything. All any of us can do is be informed and aware.

This is what my PCP and Rhuematologist both quoted to me as the "odds".

Here is an article that states the same things they tell me:

Complications of Sjögren's syndrome

Sjögren's syndrome isn't usually life-threatening, but it is linked to more serious problems.

Non-Hodgkin lymphoma

It's estimated that people with Sjögren's syndrome are 44 times more likely to develop non-Hodgkin lymphoma than people without the condition.

Non-Hodgkin lymphoma is a cancer of the lymphatic system. The lymphatic system is a series of vessels and glands (lymph nodes) that are spread throughout your body, much like your blood vessels.

While this increased risk may sound alarming, the chance of a person with Sjögren’s syndrome developing non-Hodgkin lymphoma is still small, as it only affects around 5% of people with the syndrome.

However, if you have Sjögren’s syndrome, you should be aware of the main early symptom of non-Hodgkin lymphoma, which is a painless swelling in a lymph node (gland) usually in the neck, armpit or groin. Report any swollen lymph nodes to your GP.

http://www.nhs.uk/Conditions/Sjogrens-syndrome/Pages/Complications.aspx

Gateway, I'm going to tell you what my rheumy told me about it....it may help. He had a patient who came to him because she has SS and had persistent swelling of the lymph node under her arm. Her primary blew it off a few times as "one of those things" and "no big deal". She knew herself well enough to know it didn't feel normal. She continued pressing doctors until she came to see him. They got it checked and it was lymphoma. Since it was caught early, she was treated and continues to do fine (its been several years now that she is cancer free). He says even though the odds are small, A) we should be be aware of our bodies and what is normal for us and B) never stop pushing if you know something isn't right. He says the docs didn't save her life, she did. The kind of lymphoma we can get can definitely be treated but it helps immensely to catch it early. Please try not to spend your days worrying about things that may never come. Just pay attention if something does happen that you know isn't normal for you.

5-10 % is not that great odds. That is at most 10 people in 100 so your chance of being in the 90% is so much greater Try not to dwell on that small percentage. If you are seeing a doc he will keep you in check.

The cancers you mentioned in your family have nothing to do with Non-Hodgkins Lymphoma. My husband had it and it really is not like other cancer. I have had Cancer twice. Once in my 40's and then in 2015. Newly diagnosed with Sjogrens and also diabetes. I am 72 years old but I try to make the most of every day and refuse to dwell on the illnesses. Don't let that define who you are. Find something you can enjoy and give you some peace.

Try not to dwell on what you might get and try to live life a little. Get your mind off the statistics. Maybe talk to a counselor if you feel you have anxiety.

My rheumatologist has me get a chest X-ray once a year to screen for lymphoma. I now do it along with my yearly Mamogram.