Just an update in case anyone comes across this post. I will keep updating, as I know this forum has helped me so much and its always good to hear the final outcome, either way. 

So, I called the hospital and I'm booked in for a chest x-ray in a few weeks. However, the ultrasound of my neck is going to be at least 16 weeks! So I have called a private hospital and I'm going to have my scan done there to speed things up. 

I checked my notes from the GP on my online records and the GP is concerned and put the referral through as URGENT. However, there is also a comment stating 'doesn't appear to meet the 2ww criteria.' So although this is a good sign that the GP hasn't put it through as the two week referral, during my appointment he was concerned and said he wanted it done urgently. So on the one hand I'm thinking I should just wait as the GP can't be that concerned, but on the other hand, there is no way I can wait 16 weeks with this worry. So the cost of the scan will be worth it, even if just to save me 16 weeks of worry and give me some answers. Apparently I'll get the scan results there and then. X 

Hi, I am also playing the waiting game for a swollen lymph node diagnoses. My lump is in the right side of my neck and has been present for around 6/7 moths but getting bigger.

I had a GP referral (non urgent) for an ultrasound which happened just over a week ago. The Dr took two biopsies and said that my results would be fastracked and the the hospital would be taking over my care. 

I have an appointment with the haematology consultant on the 24th and the wait is really starting to get me down. I'm trying to stay busy and distract myself but it's tricky at times.

Sending you strength and support xxx

Rose, I hope you recognise how much of a help sharing your journey has been to everyone on this thread. Even in the middle of a challenging period tou have taken the time to reassure others, I think you're remarkable. I'm so pleased the Dr's have put a robust plan in place and you have an end in sight!

I'm not sure if I've said this before, but when I was about 10 yrs old my dad was diagnosed with stage 4 non-hodgkins lymphoma. The treatment back then was very gruelling. His Dr's told him that they were 100% sure that his remission was down to his attitude. 30 years later, he is still living his best life and taking whatever is thrown at him on the chin. I'm working every day to be more like that! 

Anyway, I should probably come off this thread but I feel invested in how you and Sally are doing so I shall check in from time to time if that's OK, and will also happily take the chat to a private message if more appropriate. 
 

Much love, Danielle xxx
 

I completely echo what you have said Danzieee about Rose. You're so kind taking the time to reply to us all and offer us advice when you have such a lot going on yourself. I am very grateful to you and to everyone else for replying. I hope that your treatment goes welll.xx

My radiologist said this morning that he didn't see anything alarming so I am very relieved! 

Judgey, I really hope the time passes quickly for you and that you get some answers soon. The waiting is the worst. xx

Thank you for sharing your story, Liz and I wish you luck with your PET scan. Really hope you get good results.xx

Thanks both for your kind words of calm.

I got blood results today that were normal except elevated ESR. Has anyone else seen this in their results? I've requested the detailed results so I can see the actual values but from some reading it seems elevated ESR = an infection, immune disorder or lymphoma... So back to worrying

Hi all, sorry for the late response. You are all being incredibly strong under really difficult circumstances. Waiting is extraordinarily hard but just remember that, however you fill them, hours and minutes still pass. If you need to sit in silence, stomp around outside, eat biscuits, knit a scarf - whatever! - the same amount of time will pass between now and your results so be kind to yourselves. And, as I always tell my children, all worries seem bigger in the dark so either try and relax before bed or write your worries down and reasses them after you've rested.

You're all too kind with your compliments - we're a team and we'll get through it together.

xxx

Hi Judgey,

in case it's useful my husband is at a similar stage but slightly earlier. He got his initial appointment with the consultant quickly after an urgent GP referral, and was then referred by the consultant for "urgent" ultrasound and fine needle aspiration biopsy of the lump, which he said should be in one week or two at most. When we got the appointment it was a full month away, in mid Feb! It felt terrible to know we were going to have to wait so much longer than we should. Anyway I decided to let the consultant know so I sent him a postcard. A couple of days later we had a call asking my husband back to his clinic the next day. We went yesterday and the consultant did a biopsy then and there, without the ultrasound. The lump is quite large, and near the surface. We're expecting the result within a week.

Waiting times for scans are very long at the moment in many places apparently so you may want to ask how long you will have to wait, and whether you can have a biopsy without the scan. 

I believe my husband's blood test results were more or less normal, and he has no symptoms except the lump which appeared about three weeks ago.

Good luck.

Hi Rose,

I've been thinking of you today. 
First one is the worst, I'm told. It'll be easier from here on in. 
Hope you are feeling OK. 
 

love and light,

Danielle xx

Hi Rose, 

I hope you are getting on ok with your treatment. And you're still taking the time to reply and share your journey, which is incredible and will help people so much. I am thinking of you. It must be so difficult, but even over a forum it comes across how strong and brave you are. You've got this! 

And ladies, I hope you are all doing okay too and that you all receive good news from your appointments. It is so scary when something like this happens and it does take over your life. But I'm so glad you've all found this thread helpful and a way to support eachother through such a difficult time. 

UPDATE from me - for anyone wondering and in case anyone comes across this in the future. It's always helpful to hear the outcome. 

I've had blood tests which all came back normal and I had my ultrasound today which is also normal. The radiologist said some of the lymph nodes in my neck are still raised but nothing to be concerned about. I'm not worried about this anyway, as they've been there for so long and not really changed. 

The only frustrating thing is, that the scan didn't pick up the lumps arond my collar bone, even though we could feel them. She said they could be hiding under the bone or it could be part of the muscle that is raised. I'm not sure. I would have liked her to see them and be able to tell me they're ok, as this is what has been concerning me. I can literally feel 2/3 each side and one is a rock hard pea kind of size, the other are more oval shaped. 

But, its still a positive outcome. I've had clear test results and it's been going on for a while, so I'm hoping if it was anything serious that something would have been picked up. I would of course prefer a definite answer of what is causing this, but sometimes there just isn't one or not one that can be determined. 

I can't tell you how worried I've been at times and absolutely convinced myself I have cancer. We read symptoms online and it's so easy to self diagnose, as most common symptoms are present in every illness. So if this can help anyone in the future, please believe that even when you feel 100% certain you have a serious illness, its not always the case and it's hard to see this when you're in that mindset. Don't let it ruin your life whilst you wait for tests and results, because you really don't know. But it's always worth getting checked out. Xxx

Hi Sallx, 

Glad to hear things are looking up for you and everything is hopefully fine. It is hard not having a definitive answer though I'm sure.

I had my first hospital appt yesterday, very quick with a lovely ENT consultant. After feeling my neck and hearing about my ongoing itchy legs, and my elevated ESR in my bloods, he referred me for a chest, neck and abdomen PET-CT and an ultrasound guided core biopsy. He said I should have the tests done in the next week or so so fingers crossed I get the letters soon. He was quite frank with me though and basically said it is very very likely a lymphoma given all my symptoms and the size and number of my enlarged lymph nodes at the base of my neck, they are rock hard and there's a bunch. He said really the bigger concern is that it originated somewhere else, hence the chest and abdomen PET-CT. Fingers crossed it is local and I've caught it early, but I've had symptoms for months and only a lump on neck for a few weeks so I am a little worried.

I'm so sorry to hear this. I hope you are managing OK. Its good that they are getting things done quickly but I bet it still feels like a lifetime. There's still that small chance that it could turn out to be something less serious and I really hope that's the case for you. But I know in your situation it's best to prepare yourself as your doctor has done. 

If it does turn out to be Lymphoma, hopefully you have caught it early. I'm sure you know that a lot of lymphomas are very slow growing and you can even have some for years before you get symptoms. So even though you've had symptoms symptoms a few months, it could still have been caught very early. Again, I'm sure you know that a lot of lymphomas have a really good chance of being treated successfully and making a full recovery. I know that won't ease your worry, as you must be so scared right now. But hopefully it helps a little. Stay strong and we're here if you need to talk anytime xxx

Hi Sal, so pleased to hear your recent tests have gone well. How frustrating that the collar bone nodes couldn't be viewed, but as you say, the bigger picture is that everything is fine so that can only ever be reassuring. You're so right when you say sometimes we will never know why something has happened, so we have to accept certain things and move on. 
I do hope Rose is doing ok, I've thought about her a lot. 
Danielle x

Hi Sal, so pleased to hear your recent tests have gone well. How frustrating that the collar bone nodes couldn't be viewed, but as you say, the bigger picture is that everything is fine so that can only ever be reassuring. You're so right when you say sometimes we will never know why something has happened, so we have to accept certain things and move on. 
I do hope Rose is doing ok, I've thought about her a lot. 
Danielle x

Hi Danielle, 

Aww thank you and hope you're keeping well. Yes it's good news so I'm very pleased. It is frustrating as if she had been able to see them and say they're cysts/ or whatever they may be, then I'd be 100% satisfied. Obviously without that, there will still be that little niggle. But I just need to try and ignore that now and move on. I'm very lucky and very grateful and If it was anything serious hopefully something would have been picked up. Like we said, sometimes we will never know. 

And Rose I'm sorry to hear you're having a difficult time. I can't imagine what you're going through, but you are definitely tougher and will beat this. Take one day at a time and let your lovely family look after you. Those cuddles from your children will get you through. You really are incredible. 

Sending lots of love xxx