Hi SweetPotato.

I am not a doctor and I have no medical qualifications.

To my untrained eye, it seems me that the U/S found swollen nodes which are possibly reacting to some infection, and the doctor ordered some blood tests, including CRP (and maybe ESR?) which are routine tests for inflammation. The other tests are also pretty routine. It seems to me that the doctor is simply finding out more information, and repeating earlier blood tests to see if anything has changed. 

Should you be worried. Well, I don't think so and here's why. You've got a chronic illness which the doctor has yet to diagnose, and it's making you feel miserable.  While it remains undiagnosed, you may never find a suitable treatment. The only way out of this impasse is for the doctor to continue carrying out tests until she has enough information to figure out what's the matter with you. 

Since you're posting on a cancer forum, and you're reporting swollen lymph nodes, then I would guess you're worrying about possible lymphoma. I note that you haven't mentioned the classic lymphoma symptoms of drenching night sweats and itching. Still, this is something that you could discuss with your GP. I suspect that she may be able to set your mind at rest.

One thing you haven't mentioned is whether the doctor has eliminated Fibromyalgia as a possible cause for your symptoms. Maybe you should ask her at your next appointment. 

Thanks for replying Telemando - you are definitely right that the tests are the only way to know - I’m being impatient with the lack of information and jumping to conclusions.

I think my concern stems mainly from the speed of the follow up blood tests after the ultrasound. I’ve never known a Dr to receive let alone review scan results by 11am when the scan was at 4pm the day before. The tests are definitely routine (my esr and crp were raised in Feb, and tests in May were routine ones FBC lfts, esr etc which I was told was fine - I didn’t see numbers. Dr has asked for them again now in July including the repeat crp and additional U&Es. I read these are sometimes used as a baseline to establish how tolerant you might be to for chemo and think I started to get worried as it seemed a little more real. Probably a case of dr google and too much time to think about it as I haven’t seen the dr since the ultrasound. 

I haven’t asked about fibromyalgia as yet though my relevant symptoms would be pain and tiredness. 

I mention fibromyalgia because this time last year I was in a dreadful state. Tired, in constant pain, and mainlining on painkillers. It was even worse than the dreaded ManFlu! 

My wife accompanied me to the GP, and then broke down in tears because she thought I had cancer (again). 

This spurred the GP to do a massive series of blood tests, all of which came back normal. One of my wife's friends has fibromyalgia and I started to read up about it (I know, Dr Google!). Anyway I realised that I had a characteristic fibromyalgia symptom, which is pain in very tiny areas at particular locations on the body. You feel the pain when when you push the spot in exactly the right place.  I checked out the map of pain spots and realised I had nearly all of them. 

I reported back to the doctor and got a diagnosis of "mild" fibromyalgia (if this is mild, I really don't want the severe version).

Here is a map of the pain spot: https://www.news-medical.net/health/Fibromyalgia-Trigger-Tender-Points.aspx

You need to press each one in exactly the right place. Even being out by half a centimetre and you might feel nothing, but there should be no mistake if you get it exactly right. There will be a definite and unmistakable OUCH.  If you can find more than 8 of these on your body then you should definitely discuss fibromyalgia with your GP.

Update:

Had an appointment this morning and doctor has referred to heamatology for a biopsy via two week wait. 

Follow up blood tests were mostly normal apart from inflammatory markers but more normal than they were in February. US was inconclusive - as said lymph nodes were enlarged but could be reactive - follow up dependent on blood results. Dr said as they’d been there since Feb she’d need to refer for biopsy now (felt like a precaution but husband is freaking out).

Dr tried to make appointment then and there but system was playing up so said will do today and I’d need to go pick up letter. 

Feeling a little more nervous now - I asked doc if it would be FNA or excisional biopsy but doc was vague - how were everyone’s experiences of this process?

Hi SweetPotato.

This is just a precautionary measure.  Most of these two week referrals turn out to be nothing serious.

However, don't be surprised and DO NOT BE ALARMED if the consultant decides to put you through a battery of scans, tests, biopsies, etc. This appears to be the standard protocol: do as many tests as seem reasonable, gather all the results, come to a diagnosis - or if more information needed, go back round again and again.  

I had an ENT referral last December - I had two endoscopies, one MRI, and a biopsy under general anaesthetic - and got the all clear in February!  There are many others here with similar stories.  

The NHS used to have a poor reputation for picking up cancers late, and so doctors now appear to be encouraged to refer patients on two week pathways. My understanding is that if you match certain criteria, then you should get referred, but the criteria are deliberately set very wide to catch early cancers. However, that means that 9 out of 10 people who get put on one of these referrals turn out NOT to have cancer. The upside is that people with early cancers can have early treatment before the disease gets too bad; the downside is that far more people get put through the mill who don't have cancer.  

Hi Telemando,

Yes I agree with it being a precaution - the Dr implied that as US and bloods were inconclusive and lymph nodes though small have now been there at least 6 months that she had little choice.

I’m happier with more checking than less but I’d convinced myself I was being a hypochondriac and would be told today that there wasn’t anything to worry about. 2 week wait - which I understand is best practice - is sort of the opposite of what I was expecting and I feel a little wrongfooted - even though it’s still likely to be nothing. Plus I’d taken my husband with me today in the hope of convincing him to worry less (hah)! 

Did most people who were referred through two week wait have testing and was it all at the same time or across a few weeks? Wondering whether to flag with work that I might be in and out for appointments until they make up their minds. Is it weird that I feel relatively calm about the whole thing but am very put off telling other people because of their potential reactions? 

Hi SweetPotato.

Regarding my ENT referral, a friend of mine had something similar a year or so earlier, and she went through exactly the same protocol of tests that I did: endoscopy up the nose to look down the throat; head neck MRI; another endoscopy with biopsies. And like me, her results all came back clear.  For me, this took place over a period of four weeks from the first appointment, with Xmas/New Year intervening. 

Reading other posts about different types of referral, I get the impression that when someone is referred for just about anything, they get the same battery of tests relevant to that referral, and usually across a period of a few weeks. 

So, I think you should expect that you will get referred for more tests over the next few weeks. Don't be surprised, and above all, don't be alarmed at these referrals. It's all part of the process and because it's NHS, you won't be running up massive medical bills.

They’ve moved my appt up to tomorrow morning from middle of next week. Haven’t seen any of the letters or info etc. Just need to go get bloods taken and then turn up at the clinic. Trying very hard not to be worried. 

Hi SweetPotato.

It's very easy to read all sorts of significance into things. The most probable explanation for moving your appointment is that they had a cancellation, and you were chosen to be offered it. Why you? Quite possibly you were just chosen at random. 

Indeed does seem to have been incidental. Have had a whole raft of blood tests this morning including infection panels. Followed by consultation with a haematology SpR - he’s taken a history and felt nodes. He said they’d only be concerned with persistent nodes like mine if they were significantly larger than 1cm - my largest is 1.2cm and therefore likely to be incidental as only marginally bigger. He didn’t seem to think biopsy/FNA was necessary at this stage (and implied that is have a few week wait if I was referred and they might struggle to get anything useful out to test due to relatively small size of nodes). 

He has also requested chest X-ray and measured weight and blood pressure. I have noticed that I’ve lost around 3kg in last couple of weeks - unintentional but maybe not enough to be significant? I gained about a 7.5kg in a month between March and April (eating junk) and had continued to incrementally increase to around 10kg heavier overall around a couple weeks ago and now 3kg lighter. So though unintentional (I haven’t done anything to lose said weight) I’m inclined to dismiss as irrelevant unless it drops significantly at next visit. 

Am feeling more reassured after this morning that it is most likely nothing - thanks Telemando for your support - will update if I hear any more.