MALToma - recently diagnosed and struggling

Hi Marie1995  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have MALT Non Hodgkin’s Lymphoma (NHL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Low Grade Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well…… but be encouraged, I am now 67 and living as good a life as any other person my age can be living.

MALT NHL is generally known as Extranodal marginal zone lymphoma, but it could be Nodal marginal zone lymphoma or Splenic marginal zone lymphoma……. do any of these sound familiar?

Living with a Low-grade non-Hodgkin lymphoma is challenging in the early days but once you have a clear diagnosis and plan the noise between the ears calms down.

This is all very treatable although it may not feel like it at the moment.

Happy to chat more and answers questions as best as I can.

Hi Highlander. I can never get a straight answer from my doctor unfortunately.  Will need a second opinion with another GP i guess. I have had achy lymph nodes everywhere but no swelling except for those two under the chin. I have had this 2 months now. My blood workup showed a slight elevation after I got the double dose flu vaccine. Really slighty increase. Next blood test 3 weeks later is normal All CBC is normal. All 4 additional blood tests taken every two weeks also show normal. WBC, RBC, PLATLETS, HEMOGLOBIN, HEMOCRIT and all urinalysis also normal.  I have no fever and no night sweats. I had covid on Christmas eve that lasted 10 days ... no bad cough. Fever for two days - it was no problem. My lymph problem started middle of Nov. I had a cold and then as the cold was ending I had my double flu shot ... few days after that it started. I have exhaustion. Just don't feel my usual self that is for sure. Doctor says I have an infection but its not a bacteria infection he says. Likely a virus that will play itself out - some virsus taking longer than the norm these days. He thinks all will be restored once the virus burns itself out. HEP C - no detection. Can you please suggest other tests to rule out lymphoma or do you think my normal blood results is a good reason to think it is not lymphoma. Your opinion is much appreciated. Have you ever heard of a person having achy nodes for as long as "2 months" that was not from lymphoma? Thanks Bud. Your time is much appreciated. Hope you are doing well today. I read your your whole journey and I am sure there was more too. I just want to say you are an amazing person to have gone through all that and then take the time to help people on this platform.  They call football players heroes, hockey players, baseball players, and tennis stars heroes. They are not heroes. The heroes are people like you.  You are a heroe no doubt about it Mike! The media should let the public know who the real hereos are. Its people like you going out of your way to help others in this cancer community.  Thank you my friend! We honour you!   

Hi Marie

I had an aggressive form of NHL but I can explain to you why the preference with indolent (slow growing) lymphomas is to treat them as little as possible until absolutely necessary.

Most MALT lymphomas will never transform into an aggressive lymphoma, but if they do it's usually into the aggressive lymphoma I had - Diffuse Large B-Cell Lymphoma.  Unlike indolent lymphomas, aggressive lymphomas respond well to chemotherapy but there is a lifetime limit on how much you can receive of some of the drugs used to treat them.

Watchful waiting is common with low grade lymphomas because you don't want to limit treatment options should they transform.  

I've actually had radiotherapy for a different type of cancer and one of the things that needs to be taken into account is how it affects future treatment options.  Full dose radiation is usually only given to any area of the body once, which is likely why less intense radiation is now being considered on the initial lump.

It sounds like your doctors are on the right track and I hope you have a clear treatment plan soon.

More blood tests won't tell you anything.  Lymphoma can't be diagnosed by blood tests, only by biopsy.

Nothing you've posted suggests a biopsy is warranted but one thing which might provide more information about whether further investigation is needed is a head and neck CT/ultrasound.  Lymph nodes are not cancer detectors and swell and get sore for many boring reasons.

One thing I would caution you against, though is constantly feeling your lymph nodes.  They will respond to that by swelling and that will only increase your anxiety.

Hi Lolie ... You are for sure correct about this "One thing I would caution you against, though is constantly feeling your lymph nodes.  They will respond to that by swelling and that will only increase your anxiety." I do that all the time but will stop now. Thank you! I will see my doctor Wednesday and ask him for a head and neck CT / ultra sound. I don't feel any of my nodes except the two under my chin but I have a systemic pain. No other systems ... no fever ... but I do have exhaustion/ Do you think its a virus that just needs to work itself out or inflammed nodes? So you think it likely is not lymphoma for now?   Thank you Lolie, Best Regards,

I don't know what it is but aggressive lymphoma roars into being and quickly reaches a point where it can't be ignored.  In the unlikely event you have lymphoma, you would have more symptoms and more dramatic symptoms by now if it were an aggressive form.

There are many viruses which can cause you to be unwell for months.  It's general not worth testing for them because there is no treatment for them.  If they are causing you symptoms like pain, you should look to your doctor for ways to manage the symptoms.

Hi Chrisp234 and welcome to the Community but sorry to read about your concerns. It sounds like your GP is doing all the correct things and I totally agree with Lolie don’t touch the lumps…… you are going to inflame them and they will become sore.

Even although I am over 7 years out from my last treatment I still have a lump on my neck and if I am brave enough to fidget with it I get hit by my wife’s slipper flying through the lounge with the words “Don’t play with the lump”……. and she is spot on.

As Lolie says bloods will show nothing about Lymphoma (Over my 23+ years not one blood test has) but blood tests will check on your general health and this can trigger further investigations.

We have no idea what is going on in your body but there are some very strong bacterial and viral infections going around at the moment with the recovery going into weeks and even months and as our Lymphatic System is our bodies safety valve our Lymph-Nodes will be very reactive….. but that’s their job.

A few of my family have had these infections and it has tame a lot out of them and recovery has been slow…… remarkably I have done ok when I had them.

Your question “Have you ever heard of a person having achy nodes for as long as "2 months" that was not from lymphoma?”….. the simple answer is yes…… a few are in our family over this winter….. and I say ‘this winter’ because the winters of 20/21 and 21/22 have been very ‘healthy’ with regards to bacterial and viral infections and we all know what this was the case….. masks, good hygiene, low level of public interaction, no crowded events.

Now that the general population thinks everything is back to normal these infections and other health problems are stretching their muscles and getting back to work….. 

Work with your GP…. if any nodes grow this would by the point when your GP would refer you to Head and Neck for further investigations.

The one thing I am getting from your post is stress……. stress can be mentally but more importantly physically debilitating…. and yes this results in many symptoms including raised Lymph-Nodes….. as that is what they do.

I am no hero Chrisp234 ….. I am just a normal person that is using my lived experience to help others navigate a crap time.