Sorry to jump on hope your both ok,

I have a large posterior auricular node, a few raised lymph nodes in my jaw, neck collarbone right armpit and right groin.

I'm 34 I saw haematologist 3rd March, lots of blood tests ranging from the norm to specialised.Had a Ct scan neck-groin 5th March phone call yesterday, my consultant wants a telephone appointment Monday the 15th, Had an Mri head today which was supposed to take 10minutes, it took much longer their excuse was they had to do further imaging!!!!! Spoke to haematologist nurse today as you can guess getting really worried she said the bloods that are back are what she would expect I don't know whether that's good news or not..

Hi  

My bloods with stage 4 Hodgkins were always normal which is something they said is normal when they deal with otherwise young and fit people. I don't know what to take from that comment at all. 
 

I am so glad they've done testing on you that is extensive because this is something that can help you a lot quicker may it be something or nothing you know you've been checked properly. 
 

Are your nodes sore ? 

Hi AshT93,

Thanks for your reply. I don't know what to think either to be honest. Hopeful with the nurse saying I'm sure you will be fine.

The lumps don't hurt. But I can feel the ones in my neck with pressure so struggling to wear a necklace.

Going the GP shortly as I think I have a kidney infection the pain in my upper right back is horrendous.

Chloe x

I was treated with a suspected kidney infection after giving birth because I had back left pain where the kidney sits. I maybe did or didn't I have no idea with hindsight because all this was going on to. I just didn't know it at the time. 
 

If you have an infection that can cause the nodes to swell so that's probable. It's mostly likely to be nothing than something so always bare that in mind. 
 

Let me know how you get on. 

[@AshT93]‍ 

hey ash! 
 

I cannot imagine how difficult it must be for you with everything you are going through on top of being a new mum!! I have a 2 year old and I'm 25 but have been back and fourth fighting over lymph node / breast and bone pain for a year now. 
 

i was wondering if you could share with me the size of your nodes ? I noticed mine just before my sons first birthday In dec 2019. Started off with one I thought was a node apparently is a part of my hyoid wing bone. But then sound a very long one and a few next to it under my jaw (the only one that is slightly sore to touch) one further down my neck on my strap muscle which aches !! a tiny one on same side collar bone in the hollow and then one in my armpit. The sad thing is my son has one in his collarbone too and the paediatrician said to me it was a cervical one but it's definitely supraclavicular, opposite side to mine. I've just stopped breastfeeding because the pain on my left breast (same as nodes is insane - no mastitis or anything) hormone levels are super high so have ended our boobie journey but I'm still in heaps of pain - it's lumpy but both boobs are big and lumpy and no doctors worried on physical examination. One of my nodes under my jaw the painful one doesn't move at all, tbh I was worried about lymphoma but now breast or oral issues are my concern and then a spread to lymph nodes or bones. It sounds so extreme but I've been doing a years worth of research because it's been that ongoing alongside pain in my ribs and worsening pain on my shoulder all same side. I'm terrified with Covid around of having an undiagnosed condition. I was misdiagnosed in the past which cost me my hearing and almost my life (ventilated and induced coma due to undiagnosed sepsis pneumonia and acute respiratory distress). 
 

I hope you continue you find the strength  you have had in this journey. It can't be easy for you but wow, you are inspiring honestly. So so happy to read your cancer isn't around anymore and have everything crossed it stays that way!! Xxx

Hi Ash 

Thanks for your reply again I'm hopeful it's a diagnosis of Lupus SLE and that it's a relapse. The nodes were up before I realised the infection so yes could be right. I don't know why I've been put through all the tests though.

Just want to say good luck with your chemo I hope its good news that it prevents a relapse for you

Robyn how did you get on with your GP appointment?

Chloe x

Goodness me you're having a time of it. 

although I had lymphoma around my body and in my lung I only ever felt nodes in my neck. Each one they told me was 1cm or less but there was one on my collar bone at the front which was bigger but too dangerous to biopsy due to it being on the muscle and near arteries. I don't know the size of this one. One in my chest was 12cm and causing me to have a cough. I also had sore breasts, particularly the right which they told me was from giving birth. It took me months to get diagnosed due to covid and having given birth they kept saying it was inflammatory, postpartum niggles etc. I'm so glad I was persistent. 
 

I think the fact both boobs present with the same symptoms is reassuring. 
 

My nodes to the feel got larger over time, were hard and didn't cause me any pain when I pressed or pushed. I counted obsessively so I always knew when new ones appeared but I was told by ENT supraclavicular nodes should be investigated. I had mostly lumps to the left but then had three appear on the right hand side too. 
 

So sorry to hear you've never been listened to before it was too late and this saddens me. This I can imagine causes mistrust as I have the same feeling with some professionals at the moment. 
 

I must say that when I was diagnosed everyone has been brilliant and my daughter kept me smiling every single day. I have never had a bad down day, not once, I knew I was being cured and I knew it was a battle but it was one I was ready for. I was a mum and had fight like never before. 
 

You have got this either way - lymphoma can be curable and treatable and if it's not as serious you'll get answers by only pushing for them. Good luck and also let me know the outcome. My biggest teller was the CT scan. This is when i was finally heard. 

I've been hearing a lot about lupus at the moment and although it's awful it's something that can be treated and less sinister than where you've maybe let your mind wander to.

Let's all try not to worry until you have something to worry about. It's wasted energy in a situation you can't change. Also if you're body isn't well your mind is the biggest assets - keep it strong. 
 

Keep us updated. 

Your so lovely replying to everyone

Yeah most my nodes are on the right, they are growing slowly the one behind my right ear has been around since 2016. Which was checked at the time as around 5 nodes all 3mm or less. Ended up have ANA antibody test which was positive for lupus then but I fell pregnant in May 2016 and felt fantastic through my pregnancy all my symptoms went away. So they said positive but Asymptomatic so discharged. I have felt unwell since my last bells palsy on the right side again December 2020. Night sweats hot flushes throughout the day but no weight loss!! To me I only had the 5 behind the ear, but when GP checked me mid February she felt the rest and said likely to be inflammatory response come back in 2 weeks which I did then she felt more than last time and thats the reason why I was referred on 2ww. The haematologist last Wednesday said she is looking for cancer!!! I just don't understand my whole process of referral and why she is looking for cancer if it could be lupus, very grateful for the quick tests and the outcome will be Monday 15th just automatically thinking the worst but feel silly for posting in here and it not be anything. Just very upsetting that I've had unnecessary stress. Sorry for the vent can't talk to my family as my hubby is off with depression

Stay strong ladies I hope you all get the answers you need 

Chloe x