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.

I'm sorry that you are going through this. I've had 2 completely different cancers. The waiting for confirmation is the worst thing. I hope you are seen and diagnosed quickly. X

I don’t have any experience in what you’re dealing with, but I’m so so sorry you’re having to go through it

Thanks, you guys. 💖 I know there's nothing to say. I just wanted to say it anyway.

I personally would push back to speed things up. Are you under oncology? You shouldn’t be going back via the GP. This should be going via whoever handled your bowel cancer as its presumably metastasis of the original cancer, not a new head and neck cancer. When this happened to me, I rang both my surgeon and my oncologist and together they booked me straight in for a biopsy and scans.

OP I can’t read and run, but sending big hugs, why 3 weeks, can’t they move sooner?

My colorectal nurses are really not very kind. They know and they don't care. I don't know why. My GP suggested I go to A&E to see if they'll scan me faster.

Do you think I could phone the oncology department of my hospital?

Definitely go to an and e, make up symptoms of struggling to swallow or something / extreme pain. Go tonight.

I know that sounds awful but 3 weeks is totally unacceptable

edited to add they will likely keep you in and you can see oncology tomorrow

I would definitely call. The wait is shit enough, let alone 3 weeks. Aren't NICE guidelines that you have to be seen within 2 weeks in suspected cancer? And surely your oncologist - not the nurses - should be involved and expedite it seeing as it must be relates to original cancer (if it is cancer at all). So sorry you're going through this again.

Terracota, I’m so sorry you d found yourself in this situation. I can well remember how terrifying it was. I can’t offer you any advice on your cancer but there is a very long running thread on this board and the women there will be able to advise you. Just give me a few moments to find it for you.

I can only reach the oncologist through the colorectal nurses.

Oh I am so sorry, sending good vibes and positive hug. Agree with others, go straight to A+E and big up some symptoms. I know that's not the best approach, but needs must and three weeks in your situation is a criminally long time to wait especially given the negative/non supportive attitude you are experiencing.

Hopefully the outcome will be much better than anticipated, all the best.

I actually live pretty close to the hospital. From what I can see, PALS is in the carpark. I was thinking of going there and asking for help.

It might be worth contacting them and saying that you're available for cancellation appointment at short notice. I would contact your colorectal team as you must be still in the follow up/ monitoring phase after your first surgery as well

Your GP should be able to contact them.

Terracotta, I’ve brought the thread to the top of the board for you. It’s the one with 98 in the title.

don’t be put off by the fact it’s been quiet of late - you will be helped.

I’ll keep you in my thoughts and if you need a bit of diversion I’m happy to keep you company.

I did. I emailed them today. The nurse replied and said it was between me and the GP. I am still under surveillance - CT and MRI every three months. The nurse also knew my CEA results. She said it was only a little bit raised.

Thank you so much. 💖

Insist that the colorectal nurses inform your consultant asap. I'm surprised your GP referred to head and neck and not your original treating team, might also be worth seeing if the GP can chase the colorectal team/ refer you back

Ask your GP to refer you for a ultrasound neck and biopsy. It will need a consultant list for the biopsy. This will speed things up.
UNECK UNECKB is the coding.
By the time you get seen in h&n you'll have the results hopefully. Aside from that rig switchboard and ask to be out through to 'oncologist secretary' which should bypass the cancer nurse specialist and get more direct.
Hope this helps. Xx

Thanks you guys. I'll make some calls in the morning.

I'm so tired of this. I don't have anyone to advocate for me and i had to push so hard to get taken seriously the first time. I was unfortunately in Mexico at the time. 🤦‍♀️

As someone who has been on both sides of the fence I advise persistence. It's shit and it shouldn't have to be like this.
I'm so sorry that nobody seems to care any more. One of the reasons I quit.

You could try your consultant via their secretary, they might be more helpful than the nurses (sad to admit this as a nurse myself, but it's often the case).

Me too.

All us Mumsnetters are right here with you.

X

I would do this. PALS are often quite wishy washy but given your situation, what harm can it do? I'm sorry the colorectal team haven't been good with this. Maybe it will nudge them. Often it's the squeaky wheel that gets the grease and while they don't seem to be responding to that, other people might.
I have done the self advocating thing and I know it's hard. I've tried to do it for others since then as I got to be good at it. PM if you want any help with that. And like pp I'm here with you and thinking of you 💐