lump in neck, doubled in size within 6 months

Hiya, I am sorry if this is the wrong place to post, I am just a bit lost at the moment of who to talk to...

I found a lump in my neck last year (left anterior triangle, also had other symptoms like severe fatigue, stiff and painful joints, nausea, etc.) - it had been there a while so I kept an eye on it, after a couple months (now November 2022) it didn't go down so I went to my GP. She sent me for a scan and blood test. They said it was a small 5mm lump, most likely reactive. So that was that, it was just left with the GP receptionist calling me saying there is nothing to worry about. 

Come February 2023, it still was there and you could see that it was noticeable in my neck so I made another appointment with the GP, she referred me to an ENT under 2 week pathway, went to see him and he was very dismissive, said he couldn't feel anything, that I was just anxious and because I work in palliative care that I was jumping to conclusions. 

I left it a few more months trying to forget about it but the lump had still not gone down, it is now August 2023 and the lump felt bigger, the left side of my neck felt more swollen and hard, I can feel smaller more pea sized lymph nodes popping up and my general well being is just not good. My neck feels achy and like I can't swallow properly without it getting stuck sometimes. So I ended up going back to the GP, she sent me for another ultrasound on my neck and the results had come back that the lump had grown from 5mm to 11 x 4.2mm, another lymph node had popped up beside it. (I had asked the doctor who did the ultrasound to scan the sides of my neck as well due to the other lumps but he ignored my concerns). I had a follow up call with the doctor in 4 weeks but she called me within 1 week (which was very kind, she said she had a spare few minutes and didn't want to leave me waiting) to let me know that she had referred me to a haematologist as she didn't like that the lump is growing and wants to eliminate anything sinister. 

I have to wait till December for a phone consultation to speak to them, I am concerned if I leave it any longer, my neck and the lump are just going to get bigger. Is this a normal wait time to see a haematologist for suspected cancer? My bloods seem to be in normal range, does that mean there is nothing wrong? I have so many questions and waiting another 4 months is making me anxious, I suppose it is good that they don't think it is urgent.. I understand the NHS are under so much pressure at the moment, I work in palliative care and can relate to the strain of having no staff, etc. I am trying not to worry, keep myself busy, but it just keeps creeping up on me and stressing me out. 

Has anyone been through similar or could you tell me how long your diagnosis took? 

Thank you for reading, I appreciate it. 

  • Hello willow1993, 

    You did the right thing to go and see your GP when you first noticed the lump wasn't going down. Poor you though it's been a long process and I hope you get some answers soon. It's good that you have been referred to a specialist so they can look into it more closely and you can be assessed by an expert. It's a long time to have to wait until December for a phone consultation so it sounds like they are not treating this as an urgent referral. If this makes you anxious though, it might be worth bringing it up with your GP and asking them to confirm that they are not concerned and not giving you an urgent referral and that you should not be worried about the long wait to be seen. You could also seek a second opinion and you can find out more about this on this page. You're doing the right thing in trying to keep busy but it's such a long wait that it's normal that you are very stressed and anxious about it. There are helpful tips on this page to help you cope while waiting for important news. 

    We've had so many members of our community before who have dealt with similar issues before with neck lumps - I spotted for example this recent thread by   who is also worried about a neck lump, not necessarily the same as yours but you will understand each other and what you are going through at the moment during this long wait for answers. I hope that you will hear from other members who've been in a similar position and that they will pop by and share their story with you. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Thank you for your reply. I have now been referred urgently to the Haematology/Oncology Lymphoma Clinic for suspected Lymphoma.

    Do they have to pretty sure that it is going to be Lymphoma so be sent to a Lymphoma Clinic? I know this is probably a silly question, I guess I am just trying to ease my anxiety about next week and what will happen. I received a letter last week saying that I needed urgent bloods and it was going to be a face to face appointment. I am feeling stressed about it but also relieved that they are taking it seriously. If anyone could offer some advice on what to expect with your first appointment that would be really great. 

    Thank you. 

  • Hi Willow, 

    Unfortunately we can't answer this question, but we do have a very informative team of cancer nurses you can discuss this with on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m and they will do all they can to ease your nerves and give you the answers you're seeking whilst you wait.

    We're thinking of you Willow and wishing you all the best with your appointment.

    Kind regards,

    Steph, Cancer Chat Moderator