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Original poster

2 week urgent referral - not coping

89 replies

thisbetheverse · 02/06/2023 21:07

Hi, I’ve been told i need an urgent 2 week referral to rule out cancer but I’ve still not got my letter yet, I keep chasing the GP but it’s a week later now then when he first told me and still no letter (the 2 week doesn’t start until this is issued!).

I have a 6 month old daughter and I’m really struggling to cope, I know it’s irrational but every day I think this could be my last time with my daughter. I can barely sleep and keep bursting into tears, have a constant sick feeling. I’m so so scared.

i have a swollen neck, initial blood tests have come back clear but they want to send me to an ENT specialist.

i guess just looking for any coping strategies whilst I wait, plus any advice from anyone else who’ve had a similar experience.

i don’t want to leave my daughter without a mum, I’m so devastated that it could happen.

OP posts:
BHRK · 02/06/2023 21:13

Oh you poor thing, the waiting is awful. Try and hold on to the good thing which is that your blood tests are clear. I would try to make a GP appt and tell them the reason why is your mental health and that you’re struggling to cope. I would also consider putting a complaint in, though I think you should try and establish the reason why they still haven’t sent the letter to the hospital. Ask for an explanation in writing for the delay (and put this request in an email so it is documented!). I know it feels like forever but once you’re in the system it moves very fast. Chances are this is not cancer so try to stay positive

DustyLee123 · 02/06/2023 21:16

My 2 week appointment was by phone, followed up by an email.

Freshfoods · 02/06/2023 21:20

If it's swollen lymph nodes in your neck, they can be caused by your body fighting off an infection. Your GP is probably just wanting to rule out cancer, rather than suspecting that you have it. It would look bad for him if he didn't check this.
I agree the waiting is awful, but try to focus on getting through each day by keeping as busy as you can.

Random102 · 02/06/2023 21:20

The waiting is the hardest bit.

Ive just been through the 2WW for a breast lump. It took 5 days to get my appointment letter but I could see the appointment in my NHS app within 3 days. Have you looked on there to see if there is anything?

I had my appointment today and all was clear thankfully.

Original poster
thisbetheverse · 02/06/2023 21:24

Thank you BHRK. I really appreciate your response. I’ve been trying to hide how bad I’m feeling from DP and putting on a brave face about it all but I’m so terrified. I also keep having intense feelings of guilt like how could I bring a person into the world and potentially leave them.

I'm not getting any clear answers from the GP surgery on why it’s taken a week to do the referral (that’s if he even did it today - there’s nothing showing on my nhs app :( !) but it just sounds like he maybe forgot to process it last Friday. To tell someone they need to rule out cancer and then just forget feels so cruel, but I do appreciate doctors are stretched right now.

I don’t have a solid lump it’s more just swelling (I noticed it about 4 months ago but just thought it was post-baby fat!) but now I can’t unsee it and feel stupid for not getting it checked sooner.

i wish I could go private but it’s just not an option for us right now.

OP posts:
Original poster
thisbetheverse · 02/06/2023 21:28

That’s great news about your all clear Random102. It’s nice to hear positive stories. The waiting is so awful, I can’t even choose kitchen tiles because I think what’s the point if I’m not here. It’s so ridiculous but my mind has just gone into meltdown.

There’s nothing showing in the app yet so I will have to chase again Monday (I feel like I’m being so annoying to the poor reception team!)

OP posts:
yikesanotherbooboo · 02/06/2023 21:29

This is not the sort of thing that is better in the private sector. The time scale will be similar and tge doctors and their protocols are the same so don't feel bad about that.
Around here appointments are made by phone to save wasted time .Are you sure that your Doctor hasn't sent the referral form?
I know that the waiting is awful but your appointment is guaranteed to be soon.

Original poster
thisbetheverse · 02/06/2023 21:30

Freshfoods I didn’t know that about the lymph nodes, we have all had a cold recently but I did notice the sponginess in my neck around 4 months ago.

The dr thinks it’s likely thyroid even though it’s not the centre of my neck that’s swollen.

OP posts:
Original poster
thisbetheverse · 02/06/2023 21:33

Yikesanotherbooboo - they confirmed when I called this morning that the referral hadn’t been ‘submitted yet’ - I did say has it been forgotten but they said no but didn’t have a clear reason why it’s taken so long . They mentioned bank holiday but that’s just one day! I guess I’m unlucky that it all happened on a Friday so it was weekend + bank hol.

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Themermaidspool · 02/06/2023 21:33

Lovely with the greatest of compassion this does not sound worrying. More like a just in case to make sure.
Lymph node mets are solid hard and dont move. Deep breath. You will be seen. They will stick a camera up your nose and do an ultrasound. Everyone will be lovely i promise.

Original poster
thisbetheverse · 02/06/2023 21:34

Also that’s good to know about going private not actually being that quicker. I was considering getting some sort of loan but if that’s the case there’s no point!

OP posts:
BSky · 02/06/2023 21:36

Hi there Sorry you're going through this. The waiting is really hard. Do phone your surgery and tell them it's an urgent referral so you can be assured the referral is in progress.
This link might be helpful. I know it's worrying but approx 97% of urgent referrals are not cancer. The referral is to rule out cancer.
This link might help

www.cancerresearchuk.org/cancer-symptoms/what-is-an-urgent-referral

Take care

Original poster
thisbetheverse · 02/06/2023 21:36

Thank you themermaidspool I really hope so. I think it doesn’t help that we have a lot of cancer in the family - mum, auntie, uncle, grandad… so all those stressful experiences are front of mind right now. Thankfully we didn’t loose anyone to it though, so that is some comfort.

OP posts:
BHRK · 02/06/2023 21:39

I’d be bloody unimpressed with them not putting the referral in. I’d ask for a GP appointment to discuss the anxiety caused by the referral not being put in yet. If they refuse then I’d email the practice saying you are very concerned at the lack of explanation as to why it’s not been referred yet and could they respond in writing with the reason why?
it should have been put in within a week. I think it’s fine to ask why not. You’re not being over-dramatic.

BSky · 02/06/2023 21:39

Sorry see. You've already chased the surgery. Also that you have family experience of cancer. Hopefully you get the appointment soon.

Original poster
thisbetheverse · 02/06/2023 21:45

Thanks all. I wasn’t sure if this was the norm as I’ve never had this situation but it sounds like it should have been done at least on Tueday? So I feel less guilty for pestering them today. Hopefully I get the letter early next week, it just makes everything worse when it’s so out of your control, I can’t force him to submit the referral!

on a side note, whilst I’ve managed to hide how bad my mental health has deteriorated to DP, he did get a whiff of it last night as I made a curry with an excessive amount of turmeric in (there was a lot of coughing from him lol!) as I heard it is on the ‘cancer fighting’ foods list. (I know that’s insane but this is where my mind has gone!)

OP posts:
grass321 · 02/06/2023 21:47

I have a friend who's a private oncology consultant in this area and it can be quicker to go down the private route. I've had two cancer scares in the last year and had my consultations and tests within a week privately.

However, that's irrelevant here and it can be highly frustrating when the referral process seems to drag on and every day feels like an eternity.

I've definitely learnt the lesson of being utterly convinced I had cancer and it was either nothing or a minor medical condition I hadn't even heard of. I'm guessing at the stats but I reckon 90-95% of people tested for cancer don't have it. You see it on MN all the time too.

As hard as it is to endure, it sounds a precautionary referral and you'll be able to put it behind you. Worth keeping an eye on the process though, just in case it's slipped through the cracks.

Hollyppp · 02/06/2023 21:47

When my baby was 3 months old I started getting really bad double vision. I had a number of appointments to check for lots of quite serious conditions. When he was around 6 months they sent me for MRI and no one really said it but they were looking for a brain tumour. The 2 week wait was fucking shite. My mum kept asking if I was worried during that fortnight and I was like nahhh I’m fine I haven’t got anything til they tell me I do. Anyway the only way i
got through it was just to telling myself to chill the fuck out because if I was all clear I was wasting 2 weeks of my life not eating and sleeping. Anyway I had to be really strict to stop myself catrastrophising.
I got the all clear for brain tumour.

You can be strong enough to get through the waiting I promise, you got this

Original poster
thisbetheverse · 02/06/2023 21:56

Grass321 — Eek really. Do you know how long the process is usually through nhs vs privately? The only thing I can think is loan or overdraft extension but then I’d be adding financial worries ontop of this.

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Original poster
thisbetheverse · 02/06/2023 21:59

Oh gosh that sounds so stressful with a 3 month old Holly. Really glad it came back all clear for you and really do appreciate the positive stories.

you are so right I wish my brain could just see it as 2 weeks where I don’t know anything for sure (so actually is a positive either way).

thank you for sharing that link Bsky it’s good to read that the majority of referrals end up being non cancerous.

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zoomiesdrivememad · 02/06/2023 22:02

My daughter had a swollen neck in January and we had to wait until April to be scanned ... it was absolute agony waiting. I had to chase and chase and chase.

Like you blood tests came back clear and eventually once she was scanned ( suspected thyroid issues ) everything was ok.

We were advised that the thyroid / neck can swell during different parts of your life due to a surge in hormones so puberty, ( my daughters case ) pregnancy or menopause.

Hopefully everything will be ok.

User1328745 · 02/06/2023 22:04

I had a 2 week referral for suspected skin cancer and it was mainly by text, I got the a video appointment after 9 days, they contacted me within 3 days though to make the appointment, I am off the 2 week pathway now though as it was a BCC which is not considered so urgent so am having surgery to remove it in about 2 months. I'm sure you will get yours within the 2 weeks OP and it probably won't be as bad as you expect. If you don't hear early next week I would contact your GP.

StarDolphins · 02/06/2023 22:08

In 2019 I had similar, convinced I had bowel cancer with symptoms & family history, they sent me in urgent referral (so this confirmed it for me, they think it too). The worst was waiting & I had a toddler DD & had exactly the same thoughts as you, the thought of her going through life without a mummy consumed me for 2 weeks.

All clear. Please remember that they don’t think you have cancer, they are cautious & want to rule it out.

Original poster
thisbetheverse · 02/06/2023 22:09

Sorry to hear about your BCC diagnosis - my auntie had a spot on her nose for 2 years that turned out to be this. She had the surgery and you wouldn’t even know it happened now (as in you can’t tell at all from looking at her).

thank you for the kind words x

OP posts:
LAlady · 02/06/2023 22:10

I've had two separate two week referrals. One a few years ago I received a letter within the 2 weeks and was seen quickly.

One at the end of October last year was a telephone call with a nurse within 2 weeks. I had to wait a few weeks for the hospital test (CT-colonoscopy).