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 
Hello Everyone,
It's been a while!
So after a couple more GP appointments we're back to square one. The GP sought the advice of hematologists at our hospital. After a month or so they've fed-back that they would recommend a referral to ENT.
I have been informed that the request has now gone off to ENT, attaching my private Ultrasound and the recommendation from hematology.
Now we wait for the request to be triaged and see where we go from there.
Anyway, I'm feeling okay, all the lumps and bumps are still there but after all this time I've ultimately convinced myself that I'm just being daft and that any other symptoms are totally random and unrelated. It would however be nice to have all due diligence done and all hoops jumped through to provide an explanation to the lumps.
Anyway, I thought I'd update incase there's anyone else out there embarking on or going through the same journey to get to answers for the unexplained. My journey started back in November 2022 at the dentist, leading to an urgent ENT appointment, and now I'm coming back around full circle back to ENT (at some point) all these months later.
All the best
For some it can be a slow frustrating journey to get a clear diagnosis but let’s look for ENT to go for a core biopsy to get a good sample and find the truth for you.
Hi Mike,
It certainly seems that way, I just hope sharing and documenting my journey will aid others who may be struggling with the same, either now, or in the future.
After the past few months I'm just rolling with it now and back to being my easy going self. Let's see what happens, and if any appointments are booked in, I'll take your advice and look for that core biopsy for answers.
Hope you're doing well Mike
I am doing great, yes we do sometimes have to roll with the time it takes the NHS to join up the dots….. but let’s look for clarity for you soon.
