That's a very kind offer Rose and I'm sure other members with this diagnosis will be very grateful to know you're here to help in whatever way you can :)

Wishing you all the best with the rest of your chemo Rose.

Kind regards, 

Steph, Cancer Chat Moderator

Hi rose, 

sorry to hear you've been diagnosed. 
I seen on another post you'd mentioned having groin swelling - what was this like?

Ive got lumpy swelling on each side of groin, feels like a big lump covered by lots of small nodes.  I also have hard nodes behind ears and my whole legs ache. 
 

all bloods clear and referred to haematologist and I'm pretty much convinced that I have Lymphoma and that it must be aggressive due to the multiple swelling sites. Really really struggling. 
 

what were your steps to diagnosis? 
 

thabks 

Hey there

Sorry you've had to go through all this and you're suffering, I feel for you.

My groin swelling was like, along my knickers line - on my thigh and pelvis bone. I had been suffering really agonising pelvic and low back pain for 3 months before the swelling became evident to me. It felt like when you get a swollen knee or something, kind of puffy, but also with ridges and mini lumps along it too. It's very difficult to explain, but it sounds kinda like what you described. There's loads of reasons why it could have swollen up but for sure you are doing the right thing by getting it checked out.

I know you think it could be aggressive due to he multiple sites, but considering that the lymphatic system is all over the body it's really easy for lymphoma to be a high stage and yet not necessarily 'aggressive'.  Stage 3 means it's above and below the diaphragm yet has pretty much the same remission rates as stage 2 and so on. 

My diagnosis took ages unfortunately, but that's unusual so I've been told. It's because they didn't do a llymph biopsy until later on- they did a bone marrow one first.

In approximate order, my investigations were -

Ultrasounds

MRI

CT scan

Pet scan

Bone marrow biopsy

Lymph node biopsy.

I'm told usually they do a lymph node biopsy sooner in most cases.

You should get lots more information from your specialist when you meet them, are you in a two week wait referral?

Thinking of you

Rose

Thank you so much for replying. 
 

Yes on a 2 week referral, it's been a week already since I visited the doctor and not had anything through yet so patiently waiting. Should hopefully get chest X-ray results tomorrow. 
I have felt some tiredness for some time but put that down to a busy life and having endometriosis. 
 

I am truly terrified as have 2 kids too. 
 

did you have groin swelling at both sides? Mine is in both sides and I can feel the chain of nodes half way down the thigh on each leg. Also very painful, was yours sore? 
 

I know it doesn't mean I'll have the same but it's so hard when no info and google basically says your dying ! 
 

thanks 

I know how hard it is - the waiting just gives every opportunity for you to look things up online and get into a hysteria about it before the facts are known.

I would look to chase the two week wait if you don't hear in a couple of days. I know every area is different and some take longer than others, but you should hopefully hear really soon.

My swelling was all on my right, as was my back pain. They thought it was a ruptured ovarian cyst at first and only when it got worse did they look into it more. It was so painful I'd be in agony every night, could never sleep properly and cried all the time about it. Honestly I couldn't believe how soon the pain eased off once I started chemo therapy actually - must have only been a couple of doses in and I wasnt getting the pain  crazily enough.

Hope you hear about your consultation soon so you can put your mind at rest and have a date to look to.

I'd make a note of any questions you have when they come up between now and then as it's hard to remember these things when you're there in the moment.

For your first consultation it will probably be a lot of scheduling in scans and bloods, so expect to be both over and under whelmed about it - atleast that's how I felt about it. You work yourself to such a state but the reality is you might not know what's up for a month or so, and that can be frustrating - let's hope not though!! I really hope it goes all well and quickly for you.

Lymphoma is mostly a slow grower, so even if d you end up having it and your diagnosis takes time please be be reassured that it won't be impacting your prognosis. My docs think I could have had lymphoma as much as 18 months before I got diagnosed. 

Thinking of you

Rose 

Glad to hear your treatment is going well! I've also had my halfway scan and everything seems to be headed in the right direction. Hope you're keeping as well as can be, I've just had chemo number 4 and the best word I can use to describe myself is cabbaged! 

Oh congrats on the positive news - I really found its helped spur me on through the side effects of treatment. Are you also on ABVD and dropping the bleomycin? Or are you on something else.

Im sitting here looking like a raspberry tonight - I get so flushed the first few days of chemo you could fry an egg on my cheeks!

So glad it's going well.

All the best 

Rose

Hiya,

I was just wondering something if thats ok? 

So i had symptoms at the start of the year like exhaustion, night sweats, rashes, itching and got referred to haem in june but was clear then but then there was nothing to biopse.....have you heard of it being possible to be missed first go round? 

I now have an odd lump under my armpit and im being seen on the 10th. Just worrying that it was missed first time as they only did bloods and a ct scan and ive heard lymphoma can be missed on these too. I also have the feeling that im being strangled and my neck looks puffy to me and to others. 

Sorry just getting worried, i hope you are managing ok xx

Hi looking for advise 

I’m a 16 year old female and I noticed about 4/5weeks age my right side of my jaw (lymph node had swelled and reccently my left lymph gland on my jaw has swelled to and is getting bigger. 

(Probably none related) but I’ve been experiencing a lot of nose bleeds, itchy skin for no reason and last night I woke up really really cold even tho the house was 19°c and then I was at dinner tonight and I had to go Upstairs and change into a short sleeved top as I was sweating.

I don’t know what to tell my parents as they’ll probably laugh in my face like the first time I told them about lumps on my jaw 

 any advise is appreciated 

Thanks x

Hi [@Sammyg2010]‍ 

So sorry you've been dealing with this for a while.

Its really good to hear that you were referred to heamatology last time and have another referral to them this time around. So many times I hear of doctor's not referring their patients because it can be so easily overlooked.

I would be reassured by the CT result that there was nothing going on last time. CT will show clearly if the lymphatic system and nodes are unusual or abnormal, it's how my lymphoma was picked up - that plus a few other things - so I would take comfort that it wasn't missed last time.

Having said that, with your symptoms history and the now present lump it's good that you've been referred again just to get checked. 

I don't think you would have had lymphoma when you were given the all clear, however there is always the chance I suppose that something was lurking perhaps. I don't actually know how long lymphoma takes to manifest and affect lymph nodes but I would have thought if it was there it would have been picked up on your original round of testing. Unfortunately the only way to diagnose lymphoma is by biopsy, even if scans give a good indication. And unfortunately bloods often show up clear even in lymphoma cases. But given your scan was cleared by specialists I highly doubt anything was missed.

If you are still getting symptoms I would urge you to keep a symptom diary, and write down all questions you have for your appointment so you don't forget as it's it's so easy to get caught up in the moment and forget to ask.

Also please take some reassurance that lymphoma is very slow growing a lot of the time and even in higher stages has a very positive reaction to treatment. I myself am stage 3 and most of the way through treatment and they anticipate I will be in remission by the end, and they say I could have had lymphoma for up to two years before my diagnosis!

Sending you wishes for your appointment on the 10th.

Let me know if there's anything else I can help with.

All the best

Rose