Hello Everyone,
I hope everyone is well and enjoying a decent start to 2023.
I've been silently looking at this forum for sometime as I have some concerns of my own. However, after a frustrating few months I just wanted to vent and see if anyone if experiencing the same issues.
I started off with a lump in my mouth 5 years ago, was referred to hospital, within 2 minutes made to feel ashamed and like I had wasted valuable time and told it was probably a blocked salivary gland.
I didn't think anything of it and probably buried it as I felt quite embarrassed about the whole experience.
The lump has remained and grown over the years. It's in a difficult blind spot on the inner lower gums but not quite the floor of the mouth, I can get my tongue under it. I also noticed I had enlarged lymph nodes in either side of my neck, the largest being a lateral lump running down the right side next to my neck muscle.
My dentist who was concerned about the lumps being in conjunction with each other, urgently referred me. Again, a terrible experience and the doctor actually said to me "there are no lumps", my jaw almost hit the floor. There I was extremely concerned and the doctor was trying to say there were no lumps, like I would go through all that imagining I had lumps. He realised the concern and urgently referred me for an ultrasound, which was then subsequently downgraded to routine by the radiologist. I wasn't informed of this, so after an anxious 2 week wait it took a number of calls for me to find this out which was really frustrating.
My mother being concerned kindly offered to pay for a private ultrasound. This did indeed show a prominent lymph node measuring 38mm x 7mm. This showed no sinister features which was a relief, but given I have no obvious reason for an englarged lymph node (no infections) then this was still concerning as there is no rationale for it. Full blood count tests were recommended.
I've chased and chased the GP surgery for an appointment to air my concerns, I shouldn't of had it until the 25th of this month but luckily an early access appointment was given to me the weekend just gone after I had asked if I could fill any cancellations they may receive.
Again, an awful experience. A doctor who was running a good hour late was doing all he could to get me out, again saying he couldn't feel the lumps. I then had the ultrasound report in my back pocket, which then suddenly peaked his interest.
I said about my concerns, I appreciate Lymphoma doesn't run in families but my grandmother had a Blood Cancer (not sure which type). I said the only thing that would alleviate my concerns is a biopsy. He said that the NHS is just simply too overwhelmed and that unless 3 or 4 "red flags" are ticked then a referral won't be provided and that he could show me a letter from the NHS saying this if I wanted to see it. It sounds as though you have to be really struggling or experiencing aggressive cancers if you are to be referred at all.
I completely understand the NHS is under such a huge amount of pressure, and that my swollen lymph node has a higher statistical probability of being absolutely nothing. However, on the off chance of it actually being related to a lymphoma of some type, where does early capture come in to things? From what I've seen lymphoma affects just about anyone at any time in their lives.
I'm booked for bloods next week now, however having read a fair bit, it's likely that the bloods may not be able to detect lymphoma?
Is anyone else facing these concerns and difficulty at the moment? It's so frustrating when you're concerned and no-one seems to be listening to you or even seem to care. I have been experiencing a higher level of fatigue, pressure in my abdomen (particularly noticeable when sat down and drawing in a deep breath), hot flushes day and night and probably a whole host of other potentially unrelated aspects.
Sorry for the rant, I just don't know where to go. If bloods don't show anything I'll have the long wait of 6-8 months for my routine ultrasound referral, which can then at the very least be compared to my private one.
Thanks for reading 
Thank you Thehighlander ,
Helpful as always
I'll raise the guidelines with them and see how that goes. I'm sure I'll get hit with the state of the NHS as why they wouldn't consider a referral.
I think my start in head and neck was due to the lump in my mouth in association with swollen lymph nodes. Now the private ultrasound has shown it's a swollen lymph node and it is persistent, I wonder if the better place to start would be hematology. We'll see what they say, I'll update on Wednesday.
Thanks again for your support and help all
Discuss this with your GP highlighting the private ultrasound and see where it goes.
Even if you get to see a Hematologist they most likely will send you to Head and Neck as they are the people who would do the neck Lymph Node biopsies as well as getting scans done before they would actually do anything 
..... I read what I put again. The Hematology Department would be the ones to arrange scans - my text implies that Head and Neck would do this.
Yes, at times it is a run about....... Haematology can do a Bone Marrow Biopsy in house but not a Lymph Node Biopsy 
Hi Lolie,
Thank you for your input.
All my ultrasound showed was an enlarged lymph node with "nothing sinister". I presume this is how lymphoma may present as it is not a solid cancer which would show some rather distinctive features on an ultrasound.
Yes, there's no aggressive nature to it, just a consistent lump. Pinning down it's exact duration is difficult, but one could presume it hasn't been like that my whole life and has been slow growing.
I try to conduct a daily check on the nodes, but nothing to firm, just a quick feel to see if there's any noticeable change I'm not sure how sensitive nodes are to the touch though.
This all sounds like things are moving in a positive direction and good that you feel heard.
You are under a lot of stress and I think I have said before stress brings symptoms that can be miss interpreted.
The X-ray results will be sent to your GP after a radiologist has done the report….. this will be a a good week or so wait unless something concerning is noticed and it would be escalated.
Bloods are a mystery at times. Some of my levels sit at the lower range of acceptable but it’s just how my body now functions.
No idea about the pain but let’s look for aswers for that.
Take each day as it comes but do keep an ongoing diary of how you are and any symptoms.
Keep in keeping on 
Sounds encouraging and you may ‘just’ have reactive raised nodes that tend to stay raised.
Lots of nasty bugs doing the round at the moment, some don’t show as a raised temperature but as the immune system fights these in the back ground there may be some unexplained ‘things’ happen……. I have had a few over this winter.
Continue to monitor, keep some type of record (date, info what your have been doing) as this can help you reflect on any trends.
Park this and get on with life
