Lymphoma?

[Ljay]

I've just seen Rheumy yesterday and it's the first time he's ever mentioned in 5yrs that I'm at increased risk of lymphoma. I'm useless when they just randomly say something and I'm like yeah ok. I didn't even ask why he thought this or what it was. He just said if I started getting night sweats and losing lots of weight I should get in contact. Has anyone else been told this.

[Paul_Howard Partner LUPUS UK]

Hi Ljay ,

Here is what The Lupus Encyclopedia by Donald E Thomas Jr, says about lupus and lymphoma;

"Lymphoma is a group of cancers affecting cells of the immune system called lymphocytes. People who have systemic autoimmune diseases as a group, including SLE, have an increased risk of developing lymphoma, especially non-Hodgkin's lymphoma (NHL for short). The risk of NHL is highest for people who have primary Sjogren's syndrome who have about a forty-four times increased risk of developing NHL compared to the general population. People who have severe rheumatoid arthritis (RA) have about a twenty-five times increased change of developing it. This risk appears to be substantially less in people who have SLE. However, people with SLE are still three times more likely to develop lymphoma than the general population. This increased risk for lymphoma is probably due to the B-cells of the immune system being overactive in SLE.

"Lymphoma is a rare cancer overall, and even though it may appear more often in people who have SLE, it is still a rare cancer in them as well. However, it is important to understand what the symptoms are so that you know what to look out for. Lymphoma usually causes enlargement of the lymph glands. Therefore, it is not uncommon for a person who has lymphoma to have lymph gland swelling in areas that have a lot of lymph nodes - such as the arm pits, anywhere in the neck, just above the elbow on the inside of the arm (epitrochlear lymph nodes), and in the groin. Other symptoms include weight loss, fever and night sweats."

[Ljay in reply to Paul_Howard]

Thanks Paul.

[Lilrosie1 in reply to Paul_Howard]

Is there more I can read about this

[Paul_Howard Partner LUPUS UK in reply to Lilrosie1]

Hi Lilrosie1 ,

There is some more information about the links between lupus and certain cancers in the book, 'The Lupus Encyclopedia'. There is also some information at hopkinslupus.org/lupus-info...

[Wendy39]

Bless you, I'm sorry no one has ever discussed this with you before. I think the appointments with the doctors are so short and you only just cover "essentials" that other important issues often get left. When I was diagnosed I bought a lot of books from Lupus UK and read as much as possible. There are increased risks due to the lupus and then there's the meds. I started an immune suppressant last July and am on the max dosage. MMF. 3g a day. They Dermy printed off some info for me to take home and consider before I started one of the two drugs offered. I read the info he provided and googled and read. He never discussed the side effects, with me directly. Again I think this is time constraints. But it shouldn't be this way. Best wishes. Wendy

[Ljay in reply to Wendy39]

Thank. It's helped me understand. I just was like a rabbit in the headlights

[soootired]

I'm the same. After I leave I kick myself because only then do I remember something they said and I don't understand or wish I'd clarified etc.

Some on here record their appointments to listen to later, or take someone with them. But again, no good if you still don't understand!

I've started taking my husband with me who is shameless if he doesn't understand something and asks them to repeat it, then he repeats it back saying, so you what you are saying is ("blah blah") ? Which puts them on the spot a bit because he makes them spell things out. Also taking notes is good because it shows you are listening and paying attention and will have a precise copy of the conversation just in case the letter varies at all - which it sometimes does, they say one thing to us but don't mention it in the letter.