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

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 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 :( 

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!! :( 

Hi both, thanks for asking about me. I'm still feeling pretty lousy. I still have my fever, though I did have a couple of days with no fever a few days ago but now it's back. I've noticed it seems to come and go quite a lot. Still have swollen node, and I think I can feel another one next to it now.  I was puto antibiotics to see if that would clear any infection missed but it doesn't seem to have. Still having some pain in my left side close to my spleen. Doctor has arranged a whole bunch of blood tests but I believe other than LFTs they're all fine. Waiting on a few more results and if no better next week I will have a referral to the hospital for the fever, but he wouldnt tell me who I will be referred too.

Smoore - sorry you're still no closer to a diagnosis, I hope you are ok.

Rose - I hope you are doing well and that you are coping ok with your treatment 

Xx

Smoore- what a nightmare, let's hope you get that call soon as possible!

Riverdale- it's good that things are being investigated, all steps in the right direction for sure, but I'm so sorry you're feeling rubbishy. Completely understandable though. I'm intruiged who they will be referring you to at the hospital, do let us know how you're doinf. - if you want to of course! Ultimately it's none of my business! But did wonder how you were getting on.

Rose

Thanks Rose. I spoke with the GP again this morning as no change and he asked if I had been seen by a specialist. Because I haven't, he's now made 2 week referral for suspected lymphoma. So I assume that will be with a hematologist. Feeling absolutely washed out and drained of any energy the last couple of days. Just want to feel myself again. Glad for the referral. If something comes of this I will be annoyed that they didn't do the biopsy originally 4+ weeks ago.

Hope you're doing ok x

So another call from the GP. Lymphoma clinic won't see me because my scan results and blood tests aren't consistent with lymphoma. So I've been referred to medical physicians still urgent referral but could take a little longer. 

I literally have no idea if I'm coming or going. I don't even know what medical physicians means?

So fed up!

Im sorry you are still suffering with no answers! What is your main symptoms? The fever? I think its good you have had a clear CT, I think that would make it unlikely to be lymphoma. Im sure you are just so frustrated, I hope you arent waiting long to see a specialist! 

I'm sorry. I don't mean to sound selfish or ungrateful. My main symptoms are my ongoing fever I've had for over 8 weeks now, extreme fatigue, sweats, and swollen nodes in my neck. According to my CT scan they are swollen but not enlarged to CT criteria. It revealed a cyst on my ovary but I have no symptoms of this.

Can I ask how high your fever is and what is the doctor saying could be causing it? Are your night sweats drenching? You dont sound selfish at all! I understand what its like to have persistant symptoms and no answer. Your lymph node must be under a certain size and not look suspicous then. I would def try and take comfort from this but of course you also want an answer too! I was hoping to hear word this week of a hematology appt but so far nothing :(

My fever hasn't gone over 39. It is usually around 38 and it fluctuates throughout the day. In terms of sweats they are sometimes drenching. Sometimes they're not just at night either, they can happen randomly in the day. These happen most days. The doctor hasn't indicated what it could be - he told me a couple of weeks ago it would either go which would indicate a virus, or I would present with new symptoms which may indicate where to go next. When he put in for referral yesterday he just said it would be unlikely at this stage to be caused by a virus and that an urgent referral is necessary. As I've not been seen by a specialist yet, he thought a lymphoma clinic would be the most appropriate step, given the raised nodes and other symptoms, but as CT scan and bloods not consistent has now referred me to general medicine who will point me in the right direction I guess.

I'm relieved that my CT scan is clear, especially my partner is. Like you say, it's the back and forth of it all, especially when doctors keep mentioning lymphoma which is unsettling.

Originally I was told by one GP I had a swollen left tonsil but no pus on...he didn't quite know what to say when I told him I had no tonsils (tonsillectomy at 7 years old) so I don't have much reassurance in their opinion and I think that's where this frustration stems from. I'm glad I've been referred somewhere though so at least it's a step in the right direction.

I'm sorry you've not been seen yet. I completely get how annoying it is. How are you feeling in yourself? Do you still have a temperature? Keep reporting back to your GP and let them know all your symptoms. Maybe they could contact them to rush the appointment through?

Sending best wishes