Sjogrens diagnosis and NHL risk.

Unknown said:

I believe there's no routine lymphoma screening with this diagnosis.

I don't have Sjogrens but I'm in remission from NHL and there is no screening test available for lymphoma.

Are you having regular surveillance scans as a follow up to your breast cancer treatment?  If so, they might be useful for detecting asymptomatic lymphoma (my surveillance scans for lymphoma were head to pelvis - I'm not sure what areas are covered in surveillance scans following breast cancer).

Hi Lolie,

Thanks for your reply.  I'm glad you're in remission.

A yearly mammogram is the usual screening for early stage breast cancer, so no full body scans.

Morvern

I had a quick look at the research and your consultant seems to have used a standard risk algorithm, which is a good thing. 

It would certainly be reasonable to ask that they review your risk factors periodically, although keep in mind that even in people who have all 7 risk factors and 100% probability of developing lymphoma, there is still nothing which can be done prior to it developing.

Hi  and a second welcome to this corner of the community. I am Mike and I help out around out various Lymphoma groups.

I see my friend Lolie has been up early this morning ;)....... like Lolie I also don't have Sjogrens and yes there is a link between having Sjoren's and developing MALT Lymphoma (also known as extranodal marginal zone lymphoma)...... this is a slow growing type of Low-grade non-Hodgkin lymphoma so 'if' you were in the future to be be diagnosed then there are lots of treatment available for you.

There is no Lymphoma Screening program as the main Diagnosis of Lymphoma is done through biopsy and scans but these would only be done if a person was showing Common symptoms of lymphoma.

Once I was diagnosed with my rare type of Low Grade NHL (I only had a small developing rash on my back) I had yearly CT scans and these showed nothing wrong for the first 14 years and I have never had a blood test that would point to my Lymphoma, I am now over 7 years in remission but my type of NHL is incurable so it is basically sleeping....... but i am getting on with life and not letting the 'what if's' define my life.

If thing you concentratie with getting on with life and 'if' any of the common Lymphoma symptoms appear get checked out.

Thanks for your reply Lolie.  I may decide to speak to my GP about it.

Morvern

Thanks for your reply.  I'm glad you're still in remission.  I am trying to get on with life.  It's not the cancer diagnosis or risk of future cancers that stops me doing things.  I've had urology complications which have been difficult to deal with.

Morvern

 I have a Primary Immunodeficiency which also can cause lymphoma which I then managed to get. I had no regular screening for it, just biopsies and scans when something appeared.  Hopefully you will never get lymphoma but if you do the treatments are getting better and better so if your time comes there will be better drugs for you.

Thanks for your reply.  I hope treatment is working for you.

Hi there, was just scrolling thru here to see if anyone else had MALT NHL low grade as well as having Sjögren’s syndrome, which I have had for last 10 years. I was diagnosed in Feb 2023 with lymphoma of the left parotid gland and had treatment in May, eight doses of Rituximab over 8 weeks. I’m now in monitoring stage for two years, first monitoring appt last Nov I was clear and my next appt is Feb. I too was told there is a likelihood MALT was because I had SS. I’m hoping that I’m not diagnosed again and if it returns, not for a while. I know it’s treatable but it is not curable. I did have some lumps removed in Jan 2023 and that is when my surgeon was not happy with the surrounding tissue and referred me to a haematologist, who diagnosed me with MALT, very happy that it was found and treatment given.