So sorry to hear about what you've been going through.

Ultimately you know your body and the symptoms you've mentioned definitely point to something being out of whack, even if it isnt cancer - there are many things it could be.

I'm very surprised they didn't go through with the biopsy though, given your other symptoms.

I have Hodgkin's lymphoma and they only managed to diagnose this through a tissue biopsy - all my bloods and everything else was within the normal ranges, so I would definitely push for a biopsy if you can or at least further tests. For example, I had a PET CT prior to having my biopsy, essentially makes any potentially cancerous cells glow like mad on a scan. This would give them a good indication of if something else is going on at a cellular level but I'm surprised they decided against the biopsy. Most of my nodes were tiny so they just took a try from three different spots to make sure they got as much potentially testable material as possible.

I don't say this to worry you! Just to say, you know your body, and obviously these symptoms you're having are unpleasant and so of course the sooner you can find a cause the sooner you can get on the road to recover , whatever the outcome.

In answer to your question, I didn't actually display any of what they call B symptoms e.g. sweating, fever, itching. My investigations started as I had groin and pelvic pain which they thought was a ruptured ovarian cyst but they did an ultrasound of my entire abdomen and found lesions on the spleen and a couple of the groin nodes enlarged- not enough to feel them mind you! It seems having lymphoma without the b symptoms is quite uncommon, even the specialist the first time he saw me said it was highly unlikely I had malignancy but here we are! :D

Also out of interest did the person doing the biopsy look in different areas of the body or just the one? It's quite normal to have lymphoma as I do and still have over 90% nodes presenting as a normal size.

Sending best wishes

Feel free to message if you need a rant

Rose :)

Hi, Rose. Thank you so much for taking the time to reply. I'm sorry to hear your diagnosis, I hope you are on the road to recovery very soon.

The lady only scanned my neck. She said they all look textbook. She said if I had a biopsy and then caught an infection, she wouldn't be able to justify giving me the biopsy. It's all a bit rubbish really.

You haven't scared me - if anything, you've given me the fight to keep pushing this. You're right - I know something is off. I just wish I knew what it was. I'm waiting for a call from a doctor (hopefully tomorrow) to advise me on what will happen next.

The doctor had told me at the hospital he was sure it was just going to be glandular fever, and that even though they wanted a CT scan, the radiologists wouldn't until it was ruled out. As I went with splenic pain and elevated liver enzymes I asked why a CT scan (thinking he would say something about my spleen or liver) and he said, there's a possibility it could be lymphoma. But not to worry, I'm certain it will just be glandular fever. You can imagine when he rang me to say bloods had come back negative for glandular fever and to go in for a biopsy I was upset. Now I feel like I'm just stuck in limbo!

Thanks for listening to me rant xx

It sounds like this doctor was one the ball and I'm so glad she got things moving with the chest x-ray.

I know it still feels like limbo but hopefully she sounds like she might be a bit more proactive in her approach and it's great she's said she will call you to discuss results.

Yeah I would see if you can get the call changed to a more convenient time if you need it to - there's no point having that extra worry if you can reschedule it to a better time in the day.

You're on the path to some answers - and hey it could still be glandular fever at this stage!

Thinking of you, sending best wishes

Rose

So glandular fever has now been ruled out. So I've had previous exposure to EBV but no glandular fever in the last 2 months. She didn't volunteer much information about x-ray just that lungs and heart looked fine, and no broken bones. She wants to order and pelvic abdominal CT scan. She's speaking to radiology and then will call with more information.

I asked what she thought it would be, she just said, we will get to the bottom of it.

Hmmmm, not sure what to think still. Hopefully CT scan shouldn't take too long to come through x

Yeah I've had EBV exposure previously too, think that's really common to be honest so I wouldn't be concerned about that!

A CT is a good next step, will show up lymph nodes and other organs in a lot more detail so they hopefully will get something from that. Be warned you might be in for a wait, but hopefully they can get you a scan requested as soon as possible

If you need a rant in the meantime feel free, I know the drill and I know how frustrating it can be!

Sending best wishes though

Rose

Thanks Rose. Radiology rang this afternoon and  I've got my scan booked for in the morning. Have to say, bit uneasy about the urgency, however probably a good thing and lucky that I haven't had to wait. My GP said results can take up to a week, how long did you wait? X

That's brilliant about the speed of it - I know that sounds ridiculous and know what you mean about the urgency of it but it just means you won't be waiting and wondering to hear about an appointment. 

I think from the consultant saying I should have a CT scan to me having it and then seeing them with the results was 3 and a bit weeks.

Not sure if you have ever had a CT scan before but they are very simple and straightforward. 

They may decide to put a contrast dye into your veins via a cannula. From my experience they pop the cannula into your arm ready, and then once you're in the scanner they will pop the contrast through - they will tell you when they're doing it. It made me feel warm all over for about 20 seconds and that was it. 2 minutes later the scan was completed and I could go home!

It will usually be atleast a few days after the CT that you will get the results at the earliest, though if your gp is chasing them then it might be sooner, but don't get too panicked about this - often results just sit around waiting in a queue to be looked at and processed so if they are being chased then of course things will move a little quicker!

All the best for the scan tomorrow.

Sending best wishes

Rose

Thanks for sharing with me Rose. I had the scan this morning and literally just had the call from my doctor to say the report has come back that everything is fine. Liver is enlarged slightly but no sign of lymphoma. All she said was that I have an ovarian cyst. Can a CT report get to my GP that fast? Can they be wrong? I'm obviously relieved, it's good news. I just feel like something still is wrong. She told me it's probably just a virus and to go back and see her in a couple of weeks. I feel bad for moaning about this. And I still feel like ***. X

That's great news I'm happy for you!

Maybe make a symptom diary if you're still worried and will be seeing her in a couple of weeks?

No harm in it!

Rose

Riverdale you sound alot like me! You have had lots of tests though which is great. Im glad your ct was clear! I havent had one test yet, apart from bloods! Ive had an on and off fever for over 2 months now, I wake at night hot and sweaty with a low grade fever a few times a week. I also wake up shivering,  feeling cold and cant warm up! Then when I do sleep I shake and shiver then wake up later hot and sweating. Its so frustrating! My doctor referred me to heamatology as a red flag but they downgraded it so that I need seen in 8 weeks instead of 2. That was about 5 or 6 weeks ago so I hope I'm seen soon! 

I hope your symptoms settle down and that it is some sort of viral thing that you have. Its very frustrating not knowing whats going on isnt it :( 

Hiya smoore

Sorry to hear you're feeling rubbish, maybe you could try chasing up the appointment? It couldn't hurt to get yourself on their radar :)

Wishing you the best!

Rose

Thanks for the reply Rose. I did go to the doctor last week to tell her about these awful chills I'm getting in my sleep. Thats when she phoned the booking centre and realised I was downgraded to urgent. I got my bloods repeated and I'm hoping to get the results tomorrow. She said I should get an appt from heamatology in the next 2 weeks. I hope so! I have such bad anxiety and spend far too much time googling my symptoms which doesnt help! 

Thanks for the reply Rose. I did go to the doctor last week to tell her about these awful chills I'm getting in my sleep. Thats when she phoned the booking centre and realised I was downgraded to urgent. I got my bloods repeated and I'm hoping to get the results tomorrow. She said I should get an appt from heamatology in the next 2 weeks. I hope so! I have such bad anxiety and spend far too much time googling my symptoms which doesnt help! 

Thanks Rose, I am going to make a list of symptoms ready for when I speak to her next. I hope you are ok.

Hiya smoore. It's frustrating isn't it. Now I've had time to think I'm glad my CT was clear. I have have my lymph node in my neck. Still have my fever. It's 38 this morning. I'm now almost 4 months of swollen node in neck and 5 weeks fever. I've noticed my lymph node seems to get bigger and smaller. 2 days ago it was much bigger than what it is today. Apparently it's a normal size though. I just wish they had done the biopsy as that would give a definite diagnosis and I could just move one with my life. Do you have any swollen nodes? My CT scan didn't pick any up anywhere else - or if they did she didn't say. I hope you get your results today. 

X

Do you have any symptoms with your fevers? Like sweats or chills? Is your temp constantly up or is it sometimes normal? My temp is up and down! Mainly up at night.

Im not sure about my nodes, theres none I can feel but the doctor did say the glands in my neck are enlarged a bit. Im unsure if this is significant or not! 

I shivered all night last night again, this is driving me insane. I cant go on not being able to sleep. I rang the doctor, all my bloods were normal, which she is happy with but from everything I've read on this site it doesnt give me any comfort! Shes hoping I will be seen by heamatology by the end of September! Still so long to wait when this is going on since the start of July :(  

I'm glad your bloods have come back fine, but I completely get how frustrating it is that you're no closer to knowing what's wrong or fixing the problem.

I'm stone cold at the moment and my temperature is 38.9. It does go up and down throughout the day but it's always there. I've not recorded a normal temp in the last 5 weeks. It's ranged from 37.6 to 39.2 but it's always there. I've been sweating at night, and randomly get hot flushes throughout the day. Since my temp I've also got short of breath slightly and have since develop a pain all in my left side which radiates right round to my back and in my shoulder. I think like Rose suggested I will just keep a diary now until I next see the doctor, she wants to give it a few more weeks incase it's a virus I can't shift. I hope you start to feel better. It really does consume you knowing something is wrong but not sure what. X

Do you have kids? I think you are around the same age as me. Im 33 and have 3 boys. But you are right, this does consume you. I have chronic health anxiety for over ten years now, so this makes it so much worse! Do you google? I google far too much and need to stop. Its making me worry so much more to the point its all I think about and I find it hard to function! 

I think you said your mil has cancer, I'm really sorry and hope she is okay. I know exactly how you feel, my mum has cancer which cant be cured. So I feel like I cant burden her with my worries. Its hard with no one to talk to. Im sorry for what you are going through but also glad to have this site and to meet others who understand how tough this is. Ive only met a few people on this page that have the fevers. I cant even find much about it online! Apart from serious worrying things, I'm going to try and stay off google!! Lol 

Hi Smoore. I'm sorry to hear about your mum. It's just awful, and it seems more and more people get affected by cancer. My mil is currently receiving treatment for lung cancer, and I lost my mum 8 years ago to cancer of the throat. I try not to Google - it's just a mindfield! 

I'm 30, I have 2 girls, 3 and 1. Feel like I can't really do much at the moment, just feel so tired all the time and poorly. What ever it is, I just want to get right so I can feel well enough to carry on. Hopefully I'll have an answer soon, and hopefully you will too x

Hi Riverdale, how have you been doing? Are you still getting fevers? I have went 10 days now with no fevers or chills. Thats made me feel a bit better but now I have a tender swollen lymph node in my neck just under my jaw. I do have pain in my gums around one of my teeth just above where the swollen node is so not sure if it would be related to that or not! Hope you are doing okay and your symptoms are easing x

Hello :) just dittoing smoore's post and hoping you are feeling better now. 

Here for rants anytime from anyone :)

Rose

Hi Rose hope you are keeping well :) I also hope Riverdales symptoms have subsided! 

Last night was awful for me, after 11 nights with no fever or chills last night I had awful chills and shivered all night with my hair soaked with sweat. Getting impatient waiting to see haematology now when this has been going on since the start of July :( 

Oh how horrible :(

How long is your wait now?

Definitely make a note of the symptoms so you don't forget!

Rose

Just phoned the haematologists secretary, she said I'm down as urgent and should get a phone call any day now for an appt. I was meant to be seen in 8 weeks and the 8 weeks is up tomorrow. I'm going to be so nervous when I get one though!! :(