Lymphoma

[Loopyloo43]

Hi all had my scan today as I could feel a smallish lump which appeared twelve months ago and finally got the scan I have many swollen nodes in my left side and around the bottom of ribs and extremely painful to press the radiologist said it was lymphoma is this related to lupus? What causes it? And how does it get treated in terms of bringing the inflammation down??does anyone else have this issue tia x

[honeybug]

Hi Loopyloo 😊🌸🌿😊

I’m across the pond in the USA 🇺🇸.

Here we have a world renowned clinic for excellent care and diagnostics go to mayoclinic.org and you can research your lymphoma diagnosis.

Wasn’t anything explained to you about lymphoma??! There are 2 kinds. Hodgkins and non Hodgkins lymphoma.

It is a form of cancer involving your lymphocytes. They are the cells that are used for immunity.

I’m so very sorry that you were told you have this diagnosis.

Please research this on the Mayo Clinic site I mentioned.

I pray that you will recover from this dear.

Best wishes and bless you.

Healing hugs 🤗 love 💗 and kisses 😘. EvaJo 😊🌸🌿🦋🙏

[Loopyloo43 in reply to honeybug]

Hi thankyou for your reply I pondering as when the dr several months ago I asked him what all these lumps were under my skin quite swollen and easily felt only on one side by my waist but he just matter of dactyl dead swollen lymph nodes so I left it at that not knowing that thebigger one in my tummy was going to be the same even the radiologist was quite blaze about saying it was lymphoma and that it was common that was that. But I have been feeling quite ill over several months with no answers so it seems my dr isn’t concerned but maybe with the scan showing that there quite enlarged in my abdo they may refer me.i have been suffering with breathlessness extreme weakness and stress when looking after my grandchildren by being short tempered because of feeling ill so I have no clue what’s going. My lower neck on the side swell up and go down my face swells up lots of things go on and go down .

[panda2 in reply to Loopyloo43]

Dear Loopyloo43,

That sounds just awful. And so so worrying. The non urgent, non-important attitude the specialists are expressing is also concerning. Not least of all because you are in such discomfort and you've not been given enough information. You do indeed need some help sooner rather than later. I would say it's time to make some noise. i.e. go back to your GP and cry if you have to. And if that GP can't hear you and see the results and your physical challenge and despair, go to another one until you get a proper explanation and treatment plan.

Lymphoma Action community forum could have some better answers about what you are dealing with.

community.lymphoma-action.o...

Please let us know what you find out and how you are doing with all of this.

Panda x

[honeybug in reply to Loopyloo43]

Ohhhhh dear Loopy.

This is cancer. You mean to tell me that this was diagnosed months ago and no treatment was started for you??? You should see an Oncologist asap even if you must go private because this is in your lymph nodes they can easily spread throughout your body.

Just your symptoms alone tells me it may have spread to your lungs.

PLEASE ask for a referral to Oncology and take all the reports of all visits and tests and your symptoms to the referral Oncologist. If you go to the Mayo Clinic site I gave you it will explain everything. Try not to delay this referral.

My best wishes and prayers are with you.

😊🌸🌿🦋🙏🤗💗😘

[Helen8586]

Am going through same just now loopyloo I had my scan had to go get bone marrow biopsy and bone going on the 11 Oct to get results it's on my spleen and they want to make sure it not in my bones as my platelets are very very low but it treatable gl on your results

[Josieswolf]

I am so sorry you have this diagnosis. Please don’t think this is the end my friends husband had lymphoma in a very advanced state he had surgery and the usual chemo and and he is now cancer free .

If you are still only seeing your go reprt him to local health authority for his lack of concern. If you are a patient at a uk hospital they have a PALS these people take forward any concerns about the medical / nursing care or as in your case lack of care. This should get the ball rolling and hopefully get you sorted, you have definitely been let down and need help to sort this. I wish you a swift recovery. Sending lots of hugs your way good luck xx

[EOLHPC]

Am greatly feeling for you loopyloo...and am so glad you’ve got these great replies...hope you’ll keep us posted...you’ll be on my mind...wishing you every best wish 😘🍀😘🍀😘🍀

[honeybug in reply to EOLHPC]

Xxx🤗💗😘🙏

[SilentWillow]

Hi loopyloo,

I suggest you find another doc. They should have done a biopsy when you first noticed the lumps. I had this scare a few months ago but was lucky enough for it to be benign. I was just experiencing an infection that had no other symptoms.

Swollen nodes are common for us who have lupus but lymphoma is also something we’re high risk for and shouldn’t be treated lightly. I pray you find a good doc soon.

Willow

[Loopyloo43 in reply to SilentWillow]

Thanks I think from what he wrote in the scan form he thought it was a hernia so that’s prob why he put routine on the scan fortunately for me the radiologist was a locus who was taking up the slack I would have been waiting till November otherwise!?

[DJK99]

Hi Loopyloo43 - just read your post. Goodness, not great work by the Health teams eh. Please contact them tomorrow. This really does need urgent action. My ma had large B Cell Lymphoma and it took them literally months to biopsy a lump on her upper arm which changed everything in the way she was treated medically. I have no idea why it took them so long... and I nagged them to that. I think they though it was a cyst or something. Please demand an urgent (ie this week) biopsy so you know exactly what you are dealing with - and they know what to do next. There is a link to Lupus yes. I read it in the Lupus book I think. Certainly the B cell stuff. Hopefully it is nothing too serious, but Lymphoma is cancer and, whilst treatable, they must investigate asap to get the ball rolling on what treatment you need and get you better. There is a wealth of information on specialist websites such as Cancer Research UK and Macmillan in the UK but best not to scare yourself and get on to the Health teams pronto. A gentle hug to you Loopyloo x

[Chanpreet_Walia LUPUS UK]

Hi Loopyloo43,

According to The Lupus Encyclopedia, people who have systemic autoimmune diseases as a group, including SLE, have an increased chance of developing lymphoma, especially non-Hodgkin’s lymphoma. People who have SLE are three times more likely to develop lymphoma than the general population. The increased risk for lymphoma is probably due to the B-cells of the immune system being overactive in SLE.

Lymph nodes can swell in people with lupus due to inflammation, this is called ‘lymphadenopathy’. Another possible cause of lymph node swelling is through infection, if this is the case, doctors can treat this with antibiotics and steroids. If symptoms persist after treatment, a surgeon may use local anaesthesia to numb the area around the lymph node and then remove the lymph node for examination. Lymphoma usually needs treatment with chemotherapy and possibly radiation therapy.

Please keep us updated, wishing you all the best!