Currently awaiting diagnosis considering Lymphoma

FormerMember over 4 years ago

2 replies
13 subscribers
1093 views

Hi All

Hope your all doing ok?

I started having neck pain in Jan which led to not being able to move my left arm fully, went to docs in March and got referred for MRI which just got done in July due to lockdown, I now have pain slightly further down my back but I can move my arm , the MRI scans show a mass at C4 and C5 and I often get pins and needles. I also get a strange smell like a burny smell which comes and goes. I’m awaiting a CT scan and prob need to get lumbar puncture and a biopsy but I just wondered if anyone else gets these symptoms with lymphoma and if so what type of lymphoma was diagnosed?

thanks so much Lou x

KTatHome over 4 years ago

Hi Lou, we have in common that I was once investigated for possible lymphoma, while I was in hospital for what the GP had referred to as a possible hernia, a team of trainee drs accompanying a consultant mentioned lymphoma. A concerned dr then asked a Macmillan nurse to come to see me as lymphoma had been mentioned in front of me. She advised me not to google as there were over 80 different types of lymphoma (I think I heard that right), and I’m glad I didn’t as I would have googled the wrong cancer. My final diagnosis was metastatic melanoma.

My symptoms were completely different to yours but the uncertainty and slowing down of time is what many people here have had to deal with. I spent my time waiting for my diagnosis trying to not think about it really any distraction, my research started when I knew what my diagnosis was. I’m sorry I can’t throw any light on a diagnosis, and my hope for you is that it is no type of cancer. I will tag another volunteer on this site though who might be able to help Thehighlander if you click on his name you will be able to read his profile and lymphoma experience.

A phone call to the Macmillan support line 0808 808 0000 may also help if no one comes along with the experience you are seeking. I hope your wait isn’t too stressful and that you find the way of copin* that is best for you.

Take care

Take care KT

Lolie over 4 years ago

Have you been referred to a haematologist at all?

I'm currently in remission from diffuse large B cell lymphoma, which is an aggressive type of non-Hodgkin lymphoma.

I'm wondering where the idea that this might be lymphoma came from. It doesn't sound like the usual diagnostic pathway for lymphoma is being followed.