Should I Be Concerned Even With Normal PET?
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33 posts since
7 Oct 2018
Hi All,
23 y.o. Male. About 10 months ago, I went to a hematologist due to having swollen, hard, painless, but movable neck nodes for a year. Sent me for ultrasound which showed the nodes, likely benign up to 1.2cm. However, sed rate came back extremely high, as did CRP, LDH, and liver enzymes.
To play it safe, he sent me for a PET/CT which did show nodes in posterior cervical and submental regions, but nothing concerning in the report.
For the past 5 or so months, I’ve been having normal temperature in the morning, but then my temperature goes up to 99.8-100.0F early to late evening. Also, I’ve been having this awful hot to touch burning in the back of my neck.
should I be concerned that this is lymphoma even after having a normal work up and PET/CT? Could this just be anxiety? Or can this temperature fluctuation be completely normal?
thanks.
2506 posts since
19 Jun 2013
Hello Mattman1
I can see from this and your previous posts that you’ve been struggling for sometime with concerns around your health.
Unfortunatley no one here can give you the answers that you’re looking for and we’d recommend that you speak to your GP about your on going concerns and anxieties around your health.
You might also find it helpful to have a look at this NHS website for advice and information about managing anxiety.
I do hope that things improve for you soon.
Best wishes,
Jenn
Cancer Chat moderator
33 posts since
7 Oct 2018
Thank you. I actually just got back from my GP. He felt the nodes and was somewhat concerned only because of my complaints of low grade fever and sweating. He would like me to go for a consultation with hematology first possible biopsy.
i guess I was just wondering if I had a normal pet scan 5 months ago, would it be possible for it to miss lymphoma?
81 posts since
17 Mar 2020
Hi hope all ok did you see haematologist?
33 posts since
7 Oct 2018
Hi,
I ended up seeing ENT who sent me for neck CT with contrast. He told me today that the CT showed likely benign nodes in my neck up to 1.2cm. Not sure if I should be pushing for biopsy or just let it be.
81 posts since
17 Mar 2020
Hi sounds like reactive nodes? if they were concerned they would send you for a biopsy. Probably best to contact gp with regards to ENT results see what gp thinks. He might just leave it at that all being good with ct scans.. I ended up going private to see haematologist hes sure ive not got lymphoma as my groin nodes have shrunk from 2cm.. And neck disappeared and biopsy reactive.. Because of chest pain on and off hes referred me nhs chest xray but unlikely to be anything.. Also had itching
33 posts since
7 Oct 2018
That’s good to hear yours turned up negative.
the ENT who sent me is also a head and neck surgeon and he thinks biopsy will do more potential damage than good considering I had a negative PET 7 months ago and my nodes are still roughly the same size from my ultrasound 7 months ago. He says if suspicious, they would have grown a lot more. He spoke with my GP who agrees
hopefully I figure out what’s causing the elevated esr and crp though. I’ve been sweaty and itchy for a few weeks now, with low grade 100 temperatures every night, but I’m wondering if it’s all just stress.
81 posts since
17 Mar 2020
Itching has stopped now. I had pain in stomach for 2 weeks and slight sickness dizzy when driving i told him this bloods ok. Thats what hametoligist told me the nodes would have grown and because im well something sinster would of happened by now and like you its been months 10 months. Its reassuring that your pet and ct scan has been clear. I never had scans just biopsy the results same as you reactive. It is a worry i know. Just leaving it at that try and get on with things. Waiting on chest xray but hametoligist dosent think its anything and he says to draw a line at that. Take care
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