hi,
hope you can help. After being unwell for a few years i was being tested for various things. Duering this testing, i had an mri scan on my small bowel, which should enlarged lymph nodes in my abdomen and groin, i was then referred to a hematologist who referred me on for a CT scan. The hematologist felt my neck, underarm and could feel them there also. I asked him what could be the alternative, something NOT lymphoma..he responded with ‘the number one this we are looking at is lymphoma’. I went for a CT scan 3 days later, and I rang the hematologist to see if results were in. A nurse specialist called me back and advised that enlarged lymph nodes were found in my neck, under one arm, between my lungs, in my spleen, and in my lower abdomen also. And that i will be referred for an excisional biopsy shortly. I advised how i just wanted an alternative something i can maybe cling on to, and she said that ‘at this point nichola, unfortunately we are looking at lymphoma, the biopsy is more to grade it.’. I just don’t understand how they can be so confident it is lymphoma based on bloods, MRI SCAN & CT SCAN. Anyways, I had an excisional biopsy on my groin on wednesday and now awaiting results. I just want to know... it isn’t 100% until biopsy is it? Or do hematology consultants know just from blood and the scans? Thanks.
Hi Nichola and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you are being investigated for possible Lymphoma.
Haematologists are very experienced and if they are actually saying it is one of the 80 types of Lymphoma I would lean towards this being the case - but we are not medical experts and can only go with our own cancer journeys.
The biopsy is the only way to 100% find the truth. But if it is confirmed the grade number will give your team a clear picture as to what treatment needs to be used but it’s not Lymphoma until it’s in black and white.
At this early stage it is VERY important NOT to see a blood cancer in the same light as any other sold tumour cancers as on the whole Lymphoma can be very successfully treated, yes it could be hard work but all do-able.
I was diagnosed with my T-Cell Lymphoma 20 years ago and I eventually got to grade 4a2 but as I said it just highlighted the treatment needed....... and I am still around today talking to you.
Clear information at this point is very important so start keeping notes so you can ask all your questions like:
What type of condition has been diagnosed? - exact name and grade etc.
What are the proposed treatments Chemo, Radiotherapy......?
What are the names of the Chemo Regime?
How many cycles of Chemo and how long will each cycle last?
Does this require inpatient time (over night)
How many sessions of Radiotherapy and how long will all the treatments take?
You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful even if all you want to do is talk with friendly person that can help in lots of ways.
We also have our ‘Ask an Expert’ section but please allow a few days to get an reply.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.
If you haven't yet completed your profile when you have a minute could you pop something about your journey so far into it. This really helps others when answering. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine profile by clicking on my username Thehighlander
Best to be prepared for the worst and if its not Lymphoma - then good.
We are here to walk this with you and answer any questions ((hugs))
Hello Veranic,
I know what you mean. When i finally got seen in hospital they thought i had clots in my lungs. But after waiting for another consultant i suddenly had Lymphoma. I didnt like how certain they were. As if they didnt give me a chance of having something else. But they were so certain. Of were the cancer was and my symptoms. Which is so strange after so many visits to the gp that didnt know what to do with me as he thought i was perfectly healthy.
Like with you they told me i would have a biopsy to confirm what they already knew. They knew exactly what form of lymphoma i had. I started chemotherapy before the sencond opinion of the biopsy results were in.
I learned that i could trust them. They are so knowledgeable. The treatment worked. Even though this is not what you expected and not what you want to be going through, you know know what is causing all your symptoms. For me it was shock but also relief as i was so poorly for so long. I wish you all the best 
