Swollen lymph nodes & other symptoms

[twoboymum1985]

Hey all, before Christmas I noticed 2 swollen lymph nodes. 1 below my ear and another between my jaw and neck. Since then I’ve had another one come up under my lower jaw. Had terrible ear ache but the dr said my ear is blocked with wax so they cannot see inside. They gave me antibiotics although I explained I haven’t been unwell. Following this my collar bone statues protruding and I would get a burning sensation from my lower head, down my neck and into my shoulder. This has been continuing and shows slight relief when I use painkillers. Then had a weird vomiting bug for 2 days. Antibiotics have finished, ear pain is still there, lymph nodes are still swollen and pain is now intermittent in my shoulder. Collar bone is no longer protruding but one of my tonsils (all on the same side) looks different. I went to urgent care who did an xray, nothing to report. Bloods were done, all normal. Visited the doctors 2 more times and been prescribed painkillers. Eventually referred urgently to head and neck on 2ww. My mind is now going a million miles per hour that something is seriously wrong. I’m a 40 year old female. Never had swollen lymph nodes before. I suppose I’m asking if someone has had anything similar and it hasn’t been sinister. I’m very nervous.

@Franticbutterfly What was your mum diagnosed with if you don’t mind me asking? I have an appt with the hospital on Monday and will ask re an ultrasound. When I had a phone call they said they’ll likely do one. Just really scared.

I'm going through the same thing right now. I noticed an enlarged lymph node just above my collarbone on the 19th of November; a blood test came back with elevated ESR 35, then a week later, 26. The US showed abnormal features. After nearly 7 weeks, I finally did a PET CT scan and biopsy last week. Now I'm waiting for the results.

I can't reassure you in the sense I had similar which was sinister, I had head and neck cancer, tumor in my tonsil which had spread to lymph nodes and began treatment last year.
I'm currently waiting to find out if the treatment did work but won't know until mid to end of February.
I was 39 at diagnosis, turned 40 during chemo and radiotherapy and I'm female, so whilst we're not the 'typical patient' aka male and 50s it sadly is possible.

What I will say, is the doctors, the NHS the whole cancer 'system' is phenomenal and whilst it has been an absolute nightmare of a year for me and the treatment is not nice IF it is head and neck cancer there is so much support that you will not be alone.
When I was at your stage I had an ultrasound scan on the lymph nodes which didn't look right on the scan so I was sent for a fine needle aspiration for them to biopsy.
Waiting is without a doubt the worst thing, because there is nothing crueler than your mind going through all the potential scenarios.
My best advice is follow the doctors advice, attend the appointments and if you have any questions I'll happily answer. Avoid Google, right now it isn't your friend

@kayakhala thanks for your reply. The wait is horrendous. Wishing you the best. I have my ent appt tomorrow. So let’s see

@ForestFlowerFairy so sorry to hear this was something sinister for you but I do hope the treatment did work as I’ve read it is gruelling. I’m feeling quite numb at the minute and think this is for the best as I’m still needing to function for my kids.

Im trying to not to google but have used mumsnet, which I suppose until we know what it is, is still not great! I have my first appt tomorrow morning at 9am so let’s see what happens.

Thank you for your reply. I’ll sure be back to update. But can I ask, what other symptoms did you have? Were they all similar to mine?

My symptoms were a little different, I had a miscarriage start of March. It wasn't my first, but I didn't 'bounce back' from it - I was constantly run down, a lump appeared in my throat, I kept getting ill, had laryngitis.
I had a first scan which was inconclusive and the radiographer wanted me back in 5-8 weeks.
My GP in their wisdom decided that wasn't needed!! I was sad, then I was anemic, then I just needed antibiotics...by the time I had laryngitis and lost my voice totally my husband had to come and speak for me!! I mentioned I'd lost some weight and suddenly she was agreeing to a follow up scan which was end of June, by the 8th July I was being told I had cancer.
None of my symptoms were particularly bad, but husband and I had agreed we wouldn't try and conceive again until I was well, it's the main reason I kept going back and pushing the GP, because I needed my husband to agree to trying again before I turned 40, the point we'd agreed we would stop trying. Honestly, I think the miscarriage and desires for another baby saved my life because I'd have dismissed everything as 'working too hard, need to rest more'

@ForestFlowerFairy I am so very sorry to hear all this. I think our body tries so hard to give us signs that it needs attention and we must try and get better at it and for some reason or another we fob things off. I know I am guilty for this. Again, I’m so sorry and I do hope Feb provides the answers you are hoping for. Please keep me updated.

I'm getting close to the end of this horrific journey, so if I can offer a little bit of hope to others I will happily do so.
Seriously any questions, feel free to ask but until then I shall keep everything crossed we are on different paths

@ForestFlowerFairy Thank you

So to update, ENT saw me this morning and said I was seen prematurely as ideally I would have had an ultrasound before. He will now see me again in 2-3 weeks as everything at this moment did not point to something sinister. He felt around, looked and also did the nasoendoscopy. I have an ultrasound booked on Wednesday.

Fantastic news, I'm pleased the ultrasound is booked so quickly - not because there's definitely something wrong but it's a great step towards ruling out anything sinister and to put your mind at ease.

That's good, ultrasound is the best next step now. I hope you get good results.
@ForestFlowerFairy I wish you get better soon 💙

So a further update. Went for an ultrasound. The doctor who performed this said he can see my lymph nodes are raised. He said they look like reactive nodes but will re scan in 2-3 weeks. I don’t know if this is standard practise. He saw that I had thyroid nodules and therefore did a fine needle aspiration which was a little uncomfortable and even still so, after a local anaesthetic. I suppose all I do now is wait. 10-14 days. Let’s see.

@ForestFlowerFairy and @kayakhala how are you both doing today?

From my experience, I did have a second ultrasound, the radiographer asked for it in 5-8 weeks but the GP dismissed and delayed this so knowing you've got one in 2-3 weeks I feel is reassuring because they are not letting anything slip or taking any risks.
This also coincides with the fine needle aspiration results so you should get a really clear picture in a relatively short time, but this time will feel like the longest period. Regardless of outcome the waiting is always the worst part - not knowing meant I couldn't plan.
Do whatever you need to do to get through the next couple of weeks and remember, just because they are taking things seriously doesn't mean the worst, it means youre in safe hands.

I'm doing well, thanks for asking. I started back at work Tuesday after 4 months off, just mornings to begin and it's so lovely being back and surrounded by my lovely colleagues

@ForestFlowerFairy So a rescan is normal? Once I left I realised I hadn’t asked him why. I think I was so a taken back from the FNA that I didn’t ask him this. I suppose in my mind, if they’re reactive, why another scan? I feel really numb and tired now tbh. Although I’m still moving along as normal, I’m not really sleeping well.

Why did your Gp not feel you needed the rescan?

So glad to hear that being back at work is lovely. Back after 4 months is incredible. Well done! And long may this continue for you.

I can only speak from my experience, but in the first scan my lymph nodes were enlarged and one looked a little different but nothing significant, but they wanted a rescan to be sure. On the rescan the one that looked a little odd had changed shape and had no fat helium which is not good.
The problem is they can enlarge for almost anything, they are the part that helps fight infection so them being enlarged could be a simple cold or as they assumed in my case, simply being run down.
I can't say why the GP was so dismissive, every time I went it was a different locum and I do believe the miscarriage was blamed for me being under the weather as opposed to anything more sinister. It was only when I mentioned weight loss that they agreed

I was scanned and found to have reactive lymph nodes and they wanted to re scan in 6 weeks.

I think this is just to double check they've gone down or haven't developed any concerning features.

@ForestFlowerFairy he mentioned my nodes were enlarged and when he heard me take an inhale because I heard him say to the nurse an aspiration was needed he told me not to worry so thinking about it, maybe he wasn’t concerned about the nodes? But who knows as following this, I zoned out! It’s so frustrating that we see different doctors continually and they all have their own take on what is going on. When I called back my doctor, for the 3rd time I refused to see the woman who prescribed me an antidepressant for the pain I’ve been feeling and finally got referred to a hub - evening appointment. This doctor was the one who initiated the referral and it’s moved pretty quickly since then. Coupled with an influx of different emotions. How long in total were you off work? How have you found treatment? You sound so lovely and upbeat, I really hope Feb brings you exactly what you want to hear.

@HattiesBag when you went back, the nodes were gone? Or still swollen?

Still there but no concerning features so they're just reactive nodes that didn't go down. This was months ago now and they're still there but no bigger.

I had a total of 4 months off work, and I'm on a phased return doing just mornings to start, we'll assess how I can week by week to either keep at this, reduce or increase pending how I feel. I work for the most amazing company so I feel really safe doing this, if it was a less great company I'd probably have more time off to be further along in the recovery than I am now.

I'm not sure talking about my experience at this point will be helpful, because it is brutal. Wait and see what you're dealing with, and if it is head and neck cancer I will happily talk you through my experiences and what helped me. As I'm typing this I'm a little worried I'm doing that thing where people don't tell you stuff and it drives you mad, but I don't want to overwhelm you or tell you things that aren't nice when there's a possibility they could simply be reactive nodes.
So, If you're like me (a planner who needs total control) a couple of things that sound sinister but bought me peace of mind whilst I was at your stage of waiting:
Check insurances, if you own your home do you have critical illness insurance?
Do you have income protection insurance?
What is your works sickness pay like?

See what financial support you have in place, just incase, so you can genuinely be proactive in understanding what you may need to do and hopefully bring some peace of mind whilst you wait the next steps

@HattiesBag that’s really reassuring! Glad they were only reactive.

@ForestFlowerFairy that’s good to hear about your work. You’re right. I like to be totally prepared so have already started to check. Realised I have all insurances except, disappointedly critical illness cover. Wouldn’t be able to get it now as investigations have started. It’s crazy to think I missed this. Let’s see what happens because what will be, will be. Just praying for us all.

When my GP referred me for a US, I couldn't wait and went for a private one that showed no fatty hilum and abnormal features. When I sent the results to my GP, she put me on the 2-week cancer thing. However, the haematologist, despite seeing the scan results, referred me again for an ultrasound, which confirmed the abnormalities and showed growth in all nodes. This triggered the PET scan and biopsy. Hopefully, things will be cleared by next week.

In your case, if the sonographer saw something abnormal, he would definitely let you know and refer you for a core biopsy. I'm sure what he saw was showing a reactive node rather than a malignant one. Try not to think about it a lot (I know it's easier said than done). Everything will be fine.

So I’ve just had a phone call from the hospital and they’ve asked me to come in for an appt next week Wednesday. I’m assuming it’s for the biopsy results? Might sound naive but is this standard procedure regardless of results?

@ForestFlowerFairy hope you don’t mind me asking you, do you know whether this is normal.

I couldn’t help but panic when I saw the hospital were calling. Feel really anxious again. I suppose I’m asking anyone whether it’s normal that they call you back in for your results?

I honestly can't say if it's normal as I don't know anyone who had clear results but was either called in for face to face or just a telephone call.
However
Do you have the NHS app?
The reason I ask is my consultant wrote to my GP telling them the results and that letter appeared on the NHS app before my meeting with the consultant, so I knew I had cancer before walking into the appointment. I think it's a horrific way to find out, but I also feel waiting is horrific and whilst it's just under a week it's still 6 long days to wait