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 FarmerBoy and welcome to this corner of the community.
Unfortunately your story is not that unusual and more so as the NHS continues to navigate out from covid and deal with the pressures it is now under.
I was diagnosed way back in 1999 with my rare type of NHL. Apart from a small rash on my back I had nothing else wrong with me........ between by great GP trying everything he had available then passing me on to my Dermatologist after 9 months i was eventually diagnosed with a rare Skin NHL.
But even although my Consultant was 99% sure as to what I had it took a further year, 6 biopsies and a few CT scans to get the proof.
GPs and eventually Hematologists have set elements in the process of Tests, diagnosis and staging for Lymphoma.
You need to get past the GP and get that referral to Hematology..... but as you see this is not easy.
If your blood results are anything like mine and actually most other Lymphoma patients nothing will show up pointing to Lymphoma but there could be markers that will make your GP look further.
No answers from me apart from try a new GP Surgery....... but if this is not an option you should be keeping a good accurate health diary (dates, symptoms, times, triggers etc) and persisting with getting your pointy elbows in to the system to get answers.
Thank you Mike.
You deserve a Macmillan award for your years of contribution, support and knowledge sharing. I can see that you have been supporting others for many many years and that is really admirable.
I just feel as though I'm going to continue hitting hurdle after hurdle and then meet another brick wall.
I've not thought about trying another GP Surgery, I'm not sure how this would work. I also don't hold out much hope as my early access appointment was held at another surgery.
It just feels as though you have to be falling apart before anything is taken seriously. I'd love to have enough money to have a private CT Scan, but unfortunately this isn't an option.
With an ultrasound showing an enlarged lymph node that hasn't gone away and persists in the absence of any form of infection, I'm astounded that this can't be considered as cause for concern.
I'm sure my enlarged node is considered small all things considered, I just can't believe I'm not being taken seriously. I'm not one to flinch at any onset of minor symptoms, I'm very conscious of going to the GP only when it's necessary and I'm really concerned. I don't even need a full hand to count how many times I've been before.
It's just upsetting really. I do feel for everyone in the NHS, I don't ask for help often but I'm feeling really let down, I hate to think what others have had to go through to get to a diagnosis.
Thanks again
You just have to continue to push through.
A few months after my last treatment in Oct 2015 a lump appeared on my neck, the size of a kidney bean and at first alarm bells were ringing but as I was still having regular appointments it was checked out and found not to be an issue……. It’s still there keeping me honest.
As for the CTs, I had one every year and they never showed anything wrong with regards to Lymphoma over the first 14 years…… although one in 2012 showed I had asbestosis.
This is not simple but a fresh pair of eyes seeing you may help. I am sure you can call up any local GP surgeries and see if they are taking in new patients.
I am doing great - you can see my full story (if you dare) by hitting the link at the bottom of my posts…… I help out on the Community as it’s important to use my lived experience to make other folks journeys just that touch better.
Hi Jean!
No worries, I think it notifies you anyway if there's a new comment
Crikey, I'm glad that you persisted in the way you did. The way I'm feeling now, I would be livid with them all if I did eventually find out I had lymphoma, so I can only imagine how you feel towards those that tried to palm you off.
It's really strange, I'm sure they do see a lot of hypochondriacs in their day-to-day but everyone should be taken as a clean slate and not compared.
I'm hearing more and more horror stories about the NHS, and they're beginning to filter into mainstream news now too, so I do really feel for them. But if I put myself in the shoes of a GP, I would be trying to do the best for my patients regardless of any environmental factors. Maybe I'm too much of a push over, but hey, there's nothing wrong in caring.
Thank you for your kind words, I hope that you feel much better soon and that your mental state finds a place of calm. Take everything day by day and if that's to hard take it minute by minute...Little wins!
