Urgent referral to Head and Neck after colon cancer

[TerracottaWorrier]

I had a bowel resection back in March. I was ill for a long time before they finally agreed to do a colonoscopy and very very sick. By the time the tumor was removed, it was T4. Involvement in the lymph nodes in the bowel with one rupture.

My recurrence risk is between 35-40%, with recurrence most likely in the first two years.

About a week ago I noticed a lump on my neck just above the collar bone. I had also noticed that I was getting fatigued again in a way I hadn't been for a while.

I went to the GP on Monday and she noted that it was a swollen lymph node, pretty big. She felt around the area and said she could feel more swollen nodes.

Yesterday, my CEA results from the 7th September came back and my level is raised. It was 3.6 in July and now it 5.1, which is higher than it was before the bowel resection when it was 4.6.

I've had an urgent referral to Head and Neck, which is still three weeks away.

I can't help but think the worst. I'm so sad. I have been trying so so hard to recover everything I lost from the first cancer, in terms of fitness. I used to be so fucking fit. Bouldering, cycling, advanced yoga.

This last week, I just want to lie down all the time again.

I'm back staying at my dad's since the surgery and I keep thinking I'm going to die in the same fucking hospital I was born in.

The lymph nodes have gotten bigger since I noticed them. I can feel multiple with my fingers now.

Fuck this shit, etc.

Yes, phone your colo rectal Oncologist secretary and ask for next available appt. Better still, email secretary with the situation, they'll forward to the consultant who'll book a scan

I would go to A&E. Say that you've recently had cancer, you've noticed lumps and now you feel really unwell and fatigued. No, you shouldn't have to and no it's not the 'correct' pathway, but if you have tried correct and it's getting nowhere, do it.

This is your life. They won't suffer for making you wait but you might. I hope you're seen quickly.

I’m so sorry OP, you must be so worried.

How can it be that you are waiting three weeks, when the cancer pathway is meant to involve no more than a two week wait?

Could you send an email direct to your consultant and say you’re worried about leaving it so long and you’re concerned it’s not clinically safe to do so? Copy PALS and ring them if you don’t get a call after 24 hours.

I’d keep chasing the nurses or secretary for consultant but if no luck definitely go to a&e, I think it’s probably the quickest route.
We had to go to a&e when we got a diagnosis for my daughter following a private biopsy. We saw our GP and then got a phone call from our local hospital paediatric a&e and they advised us to head straight in, even though she wasn’t visibly ill or suffering from any obvious symptoms except for the swollen lymph node. From there they transferred us to the ward and referred us directly to a more specialist hospital.
While in the local hospital she was able to have more blood tests, ultrasounds and chest X-rays and then we had an appointment with a consultant at the specialist hospital two days later.

Sorry you’re dealing with this again, it’s shit x

Don’t “big up” or make up symptoms in A&E. You could end up having completely the wrong type of scan, and an unnecessary CT means an unnecessary dose of radiation to your thyroid. OP will most likely need an ultrasound in the first instance which isn’t normally available in A&E.

Lymph nodes in the neck can be raised for lots of reasons, this doesn’t necessarily mean recurrence and could be something completely unrelated. If they are increasing in size this rapidly then there’s more chance of it being infection/inflammation than a recurrence of the cancer.

Yes my thought was the consultant’s secretary as well. They are often really helpful. Plus PALS. So sorry. Fingers crossed for you.

Thanks so much, everyone.

I'd like very much to avoid the a&e route - I'm especially keen not to end up back on a hospital ward. I have a lot of trauma from my mexican bowel resection and just thinking about it makes me start shaking.

I'm going to phone the oncologist's secretary when she opens at 9 am. I'll follow up with an email and a message to PALS if necessary.

oh op this is so sad to hear - phone the GP and see if the appointment can be expedited it should be within 2 weeks. The GP can also do a MacMillan referral for support for you and they do an amazing job. Sending you lots of love ❤️

Everyone I ever see says they'll do a Macmillan/counselling referral but no one ever calls me.

I have the weird situation that I was in Mexico when I was diagnosed with cancer and was too unwell to do anything other than use my insurance to get surgery there. Then I needed to wait until I felt well enough to pack and fly long haul to the UK alone.

So I arrived about twelve weeks post surgery, with no tumor. Although I got put under the care of the Colorectal team, I never feel like I'm really inside the system the way I'm meant to be.

Fuck cancer!

If it was in your lymph nodes local to the tumor, did you have chemo after? I would have expected you to.

As other people have said, you need to make a nuisance of yourself. No one wins if there are delays and there is something that needs treating. They should also be taking the rise in cea seriously. It would be a point for further investigation where I am, even if still technically in normal range. Good luck and hope you get a clear result.

No, I didn't have chemotherapy.

I couldn't work because I had a bowel resection, so I lost my medical insurance.

I couldn't travel back to the UK because I'd just had a bowel resection.

I spent roughly twelve weeks feeling completely stunned, dragged my suitcases to the airport, and came back to England.

I really feel for you. It must be such a worry. How awful that those nurses aren't responding with any kind of empathy. I really hope you are tested quickly and that the results are good.

I think you need to be referred to lymphoma not head and neck.
My child is currently under the lymphoma team and it is very separate to head and neck.

It should also be on the two week pathway.
You need to fight for it sadly.

I’d absolutely reach out to your GP and ask for support with this as like you say if this had occurred in the uk you’d be “in the system” as it were but they should be able to do that. Do you have a colorectal consultant here in the uk for follow ups etc?? I’m wondering if the colorectal nurse specialists would see you on their well being and follow up clinics. I’d absolutely keep on at them but also try to get the current referral pushed along a bit. Sending a huge virtual hug 🤗

Good afternoon, lovely mumsnetters.

I phoned my consultant's secretary this morning. It was going to answerphone so I left a message.

When I hung up, I emailed the associated email address for oncology in my hospital.

In both cases I outlined my situation and asked that my oncologist be made aware so that she could decide if anything needed to be done by oncology while I waited to be seen on 12th October.

This afternoon a woman from radiology phoned. She said she'd been recieving correspondence about me all day.

She said I could be seen next Tuesday.

Thank you so much, everyone, for making me feel it was proportionate and reasonable to push. I appreciate it more than you can know. 💖

I am so pleased Terracotta. You are finally being listened to. It bloody sucks that you have to, but persisting pays off.
i will be thinking of you and sending best wishes x

Oh thank goodness something's happening now @TerracottaWorrier . Let us know how things go and do come here for support 💐

That's great to hear. I'm so glad they've fitted you in early next week. I'm rooting for you.

Fingers crossed for you

Great news. I hope the results are less worrying than you fear.

Great news. Regarding MacMillan/ support, I cannot speak highly enough about Maggie’s Centres who are a cancer charity and who supported me when I had cancer - perhaps there is one near where you live that you could call and/ or drop in? They are wonderful sanctuaries, separate from medical settings (albeit usually within hospital grounds) and offer emotional, practical and logistical support to anyone touched by cancer.

I hope everything goes ok today @TerracottaWorrier and you get some answers. Thinking of you

I hope everything goes ok @TerracottaWorrier

I truly hope today’s appointment goes well. So much of your ‘story’ mirrors my husband’s. Stay strong and know so many of us are in your corner 😘

Thanks so much for thinking of me, you guys. 💖

My appointment isn't until 4pm but I'll update when I'm home later.