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

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

I was also told I could have a virus but I doubt it when my symptoms are ongoing nearly 3 months now! My temp has been more stable and is mainly normal. I keep getting chills though, I wake up in the middle of the night shivering and my hair wet with sweat. 

My doctor said shes done all she can and I should be seen by the end of September. Hematology said they are short on doctors and are running behind but that I should get a phone call any day now. 

Hopefully an urgent referral is quick enough for you! Are you googling? At the start I was googling constantly and worrying myself even further. I was also checking my temp a crazy amount of times! Im trying not to panic as much now, hope you arent worrying too much. This group is a great help! X

I was also told I could have a virus but I doubt it when my symptoms are ongoing nearly 3 months now! My temp has been more stable and is mainly normal. I keep getting chills though, I wake up in the middle of the night shivering and my hair wet with sweat. 

My doctor said shes done all she can and I should be seen by the end of September. Hematology said they are short on doctors and are running behind but that I should get a phone call any day now. 

Hopefully an urgent referral is quick enough for you! Are you googling? At the start I was googling constantly and worrying myself even further. I was also checking my temp a crazy amount of times! Im trying not to panic as much now, hope you arent worrying too much. This group is a great help! X