Just Diagnosed with Follicular non Hodgkin lymphoma

Hi again  and . The community is a safe place to share our experiences and help each other navigate this rubbish journey as best as we can. So there is never a wrong thing to say and yes we all are tying to learn in the midst of changing times.

As I am not medically trained in any way although my GP always says I know more about my condition than she will ever do, when I have any questions I send them to my amazing Heamatology Specialist Cancer Nurse and she keeps my on track as there could be changes in terms used etc so I ask her. So I put our discussion about the use of the word ‘tumour’ past her.

This was her reply.....

Hi Mike, we need to sit with a cup of coffee some time as I need to ask you some questions about the project (I am part of a Macmillan project up North)

Your question about the use of the word tumour often comes up and it’s all down to how clinical teams choose to present information.

Most NHL information booklets we give out will mostly not have the word tumour used - just the term Lymphoma but in reality a growth of cancer cells combining together (my party term) forms a tumour.

If you look at this link produced by the NHS about Non Hodgkin’s Lymphoma https://www.nhs.uk/conditions/non-hodgkin-lymphoma/ you will see the following.....

The outlook and treatment for non-Hodgkin lymphoma varies greatly, depending on the exact type, grade and extent of the lymphoma, and the person's age.

Low-grade tumours do not necessarily require immediate medical treatment, but are harder to completely cure.

High-grade lymphomas need to be treated straight away, but tend to respond much better to treatment and can often be cured.

You will see the words Tumours and Lymphomas are both used and often interchangeable and this brings the confusion.

In this link in https://www.cancerresearchuk.org/about-cancer/non-hodgkin-lymphoma/about you will see the following:

If you have lymphoma, some of your white blood cells (lymphocytes) divide abnormally.

Normal white blood cells have resting time. But if you have lymphoma some of your white blood cells don't have any resting time. This means they divide continuously, so too many are produced. And they don't naturally die off as white blood cells normally do.

These cells start to divide before they are fully mature. So they can't fight infection as normal white blood cells do.

The abnormal white blood cells start to collect in the lymph nodes, or in other places such as the bone marrow or spleen.

They can then grow into tumours and begin to cause problems in the lymphatic system, or in the organ in which they are growing. For example, if a lymphoma starts in the thyroid gland it can affect the normal production of thyroid hormones.

You for one had very visible tumours with your apple sized tumour on your head then the brick sized tumour in your neck and I am sure that you have often read through the Lymphoma Action information about your condition CTCL in this link https://lymphoma-action.org.uk/types-lymphoma-skin-lymphoma/skin-cutaneous-t-cell-lymphoma#mycosis it says.....

Mycosis fungoides rarely develops beyond the early patch and plaque stage. In a small proportion of people, raised lumps appear on the skin. These are called 'tumours'. They can ulcerate or weep and they can be painful.

As I said each clinical team will use the general all encompassing term Lymphoma others say growth, others mass but we say it as it is tumour. And 

Take care and love to Fiona.

C

Thanks for the clarification Mike 

I was a little worried that I had caused upset and anxiety which was the last thing that I would wanted to do..

Teresa x

Evening everybody - Very new to forum

After 18months of tests, CT's Pet Scans Key hole and open surgery biopies i have been diagnosed with stage two disease

MDT meetings to deciide on whether treament is more watch ot wait or radiotherapy

Has anybody got any experience on early stafe radiotherapy treatment as this is what the consultant think the decison will be

Thanks

Good Morning 

I was diagnosed with 2a FNHL and have just completed 12 sessions of Radiotherapy to the abdomen. Which area do you require treatment? 

Hi thebear

Sorry that you find yourself needing to join the community but you’ll get so much support from other members which I have found really comforting as it’s such a worrying time. I was diagnosed in March 2020. Initially I was watch & wait but unfortunately the tumour in my nasopharyngeal area caused me to go deaf in my left ear so treatment was required. I completed 12 sessions of low dose radiotherapy on my nasopharyngeal & oropharynx 4 weeks ago. I think everyone’s experience will differ, depending on which area is being targeted. What would you like to know?

Regards

Teresa

I can relate to your post! I had to chase every appointment to secure a diagnosis.  My lovely haematologist then left after 6 months and has been replaced by a man devoid of emotion and who greets every worry I have with 'I'm not clinically concerned it isn't typical of lymphoma' or regarding petechiae 'age spots'. I don't have trust in him yet but I so want to! 

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So sorry! My fat fingers hit the flagged button but I didn't mean to! hope you are keeping well atm x