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 
Hi Jean, let’s look for the year to be a better one than last year for you.
I do hope that you had some time with the boys over Christmas and New Year ((hugs))
Much the same up with us Jean.
We had two Christmas Days 
one was a week before Christmas when we had the 3 granddaughters up from Surrey for Christmas take 1 then a much more relaxed Christmas take 2 with out other granddaughter.
Do remember that the LA Scottish Support Groups are on every month ((hugs))
Hi FarmerBoy .... interestingly I was initially seen in the Head and Neck department as they had the equipment to check me over and this triggered my biopsy........ then I was fast tracked to my Hematologist.
I started in Dermatology way back in 1999 and was treated there as I had a skin NHL..... I was then sent to Oncology in Sep 2013 as I had an uncontrollable surface tumour growing above my right eye...... they arranged radiotherapy...... very quickly after the radiotherapy the lymph nodes in the left of my neck started to grow very quickly so I was sent to Head and Neck to check it out....... biopsy was done under general anesthetic within a few days........ and saw my Hematologist within the week..... started chemo a few days later.
The problem with many of Lymphoma symptoms, these can be caused by other health issues like infections....... and the important word in the NICE wording you have put in your post is 'consider'
I think you need to highlight the NICE guidelines to your GP and see what they say...... or more importantly do.
I have to say that I have talked with many people over the years on here and on another Lymphoma support platform and their GP most certainly followed the NICE guidelines...... but not everyone get an easy route to diagnosis.
