To be really worried? Going round in circles with NHS?

[Notsurewhattodoaboutthis1]

Hi!

just looking for a bit of advice or help because I don’t know what to do from here

I discovered a lump in march. It definitely wasn’t there before and suddenly seemed to be about 1inch or so in size. It was painless, not moving and honestly feels solid like bone. I gave it a month, went to the gp, they didn’t know what it was but referred me to ENT for the head and neck lump clinic. They said on the referral it’s on my left sternoclavicular joint/end of the collarbone

i went to the appointment, they did an x ray and said I’ll hear back with the results. I had to chase it up a bit but eventually I got through to the secretary and found out the x ray came back normal and apparently no abnormalities. I asked what the lump is but they said that wasn’t mentioned; they just said it was reported as normal. I then got a letter through the post basically saying the same thing.

it didn’t say what the lump is just that the x ray showed no abnormality. I know that’s great because it rules out anything scary, but equally i don’t know what it is, and I’ve realised recently it’s been getting bigger again. It’s hard to guess size but I’d probably guess it’s around 4.5cm now.

I don’t know if it’s normal for it to be getting bigger because I dont know what it is. I’ve called the hospital so many times but im going round in circles and can’t get any info about it. When I mentioned it to the gp they said its fine because rhe x ray is was fine

I’m just a little bit worried about the fact it’s getting bigger because I don’t know what it is, but if it was anything to worry about it would have been picked up in the xray wouldn’t it? I remember the doctor said it’s normal to get asymmetrical joints there but when I said it definitely wasn’t before he said that’s strange because asymmetry wouldn’t suddenly start without an injury, and the fact it isn’t painful rules out an injury or dislocation. It literally feels like a solid lump as if it’s bone- it doesn’t move at all when it’s pressed on.

sorry bit of a jumbled up post but just wondered if anyone had any advice or whether I’m worrying about nothing, just going round in circles and not sure if I’m being unnecessarily anxious

I’ve had a few other things recently and haven’t felt well but just not sure if that’s related or just coincidental

Could be a slow growing lipoma or sebaceous cyst. I'd go back to discuss with gp if you could. Might need ultrasound

Hmm. I know people whose arthritis manifests in part as bone spurs, but in this feet. Could that happen on clavicles?

Otherwise,, as snuggly said above

Yep, I agree with PPs, back to the GP.

Definitely back to GP and say you don't feel well and it's getting bigger. Stand your ground. Don't be fobbed off. If you think you are being dismissed say something like "I am feeling fobbed off", or "I don't think you are hearing me".

x ray mainly can only see bony changes. You probably need an MRI to check soft tissue. You can get still nasty things in the soft tissue along with many benign things. As it’s continuing to grow please return to your doctor or go to a walk in centre and request referral to rule out a soft tissue nasty.

Can you arrange to see a different doctor in your practice OP? If so, I would to get a second opinion. When you go in, tell him or her, that it's worrying you that no one has told you what it is, it appears to be growing, and you're feeling generally unwell. It may be that an Xray would'n't pick up on what it was, and you need further tests, but please don't allow yourself to be fobbed off, as when doctors close their mind to a patient's concerns that's when mistakes happen. Keep pushing until you find out what it is, and feel confident that it is nothing to worry about.

Thanks for the advice. I just feel like I’m going round in circles with it all. It’s that way part of me is reassured the x ray was normal, but at the same time, nobody can actually tell me what it is, and there’s so many horror stories about things getting missed and it’s hard not to worry. I’ll try and attach a picture of it below, it’s hard to get in the photo but I’ll circle it

googling it just brings up dislocations etc but I don’t think it’s that- it’s not painful and there’s no issue moving my arm. I did read online that asymmetry can be normal (just like the doctor said) but it’s just weird because it definitely wasn’t like this before

I don’t want to worry you but you are already worried yourself. This cannot be diagnosed by a photo on social media forums. But yes I can see it. Hopefully it’s not serious but the tests have not been done to confirm this.

For example there is the rare condition of soft tissue sarcoma.
https://www.mayoclinic.org/diseases-conditions/soft-tissue-sarcoma/symptoms-causes/syc-20377725

you need to present somewhere such as a walk in or return to the GP for a referral to dermatology or similar to rule this and other things out.
good luck!

Thanks for the info. Oh jeez, I had sort of assumed until now that it definitely couldn’t be anything bad since the x ray was fine. I’m just going round in circles with the nhs and I’m absolutely fed up with it so think I’m going to try and go down the private route

Hi just seen your thread, it makes sense to be worried but I would say can you see another GP in your practice? Just book a different one on the online form, or ask reception if anyone has a special interest in minor surgery (e.g drain the cyst) or ENT. Then see them or say you want a female doctor. Then make your case again, talk about the fact that it is new - as in before a few months you did not have asymmetry so that worries you, and it has grown. Say you want a scan to look at soft tissue and maybe a biopsy as well. It hard when your just wanting help and have to advocate so hard to get it.

If you can stretch to it or have insurance then private might be a reasonable thing. The NHS is sadly in crisis and won’t improve now we’re going into winter….