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 really sorry @TerracottaWorrier ❤️
The treatments available now are so much better, and there may be some good options, especially if you’re otherwise fit and well. There are targeted therapies as well as chemotherapy, and immunotherapy has been a game changer for some cancers, including certain types of bowel cancer. Very targeted radiotherapy can sometimes treat individual lung tumours too. Ask your dr about trials too.
I have stage 4 melanoma myself which had spread to my brain and am no evidence of disease (2 years since I was diagnosed with a brain met) which is something I never imagined I’d be able to say. I know every cancer is different, but I hope there are some really good options for you too.
If you have a Maggies centre near go and see them they will be an amazing support. I still go to the exercise classes at mine. They have been an absolute godsend for me.
I also found doing small things to help prepare me for treatment really helped me. I felt it gave me a bit of control back. I got my vitamin levels checked, vitamin D levels are important to get up before treatment. I went to yoga and gentle exercise classes at Maggies.

Oh that’s not good news, i hope they can come up with a plan of action for you. Do you have family and friends in real life supporting you. Big hugs xx

Oh Terracotta I'm so gutted for you. I've been thinking about you a lot and hoping your update would be positive.

Thanks so much everyone. 💖

I do have people. But I can't talk about it. I don't know why really.

I feel like I can't cry in front of anyone. I made my dad wait for me in the Waitrose carpark on Monday while I went into the hospital and got told the cancer had come back. Sobbed in the hospital grounds for five minutes when I came out and then walked back to my dad's car all composed.

I cry when I'm on my own but I just do not want to share how I feel with people who love me. Is this a thing?

Also I'm already so so tired. I just want to lie down. It's strange. Lying down feels so so lovely. Before I got diagnosed with colon cancer last time I felt like this but I really tried to push through it because I didn't know I was sick.

This time I don't want to push through. I want to lie down. 😅

You can cry on our virtual shoulders. Lay down and rest and allow yourself to grieve for a bit. Then kick cancer's arse.xxx

We have had this with my mum - if its any help we went in to what we called " stepping stone " mode - you just think in batches if 10 minutes and what needs to happen - cup of tea/ shower/ load washer/ fix lunch / park car whatever it is and listen to audio books while resting - kind of based on the proverb " just focus on hopping to the next stepping stone then once you land on it the next stepoing stone after that will appear

Hi again, lovely mumsnetters. I saw my oncologist today. I know I shouldn't laugh, but my metastasis is really rare, so there's no good data for prognosis. 😂 I have spent my life making unconventional choices and now I have an unconventional metastatic presentation.
I still haven't had a PET scan. The whole conversation today seemed kind of useless without that, honestly. They also haven't finished testing the biopsy for whatever it is they test it for, but she did say that tests so far show that I wouldn't be a candidate for immunotherapy.
The nurse who took my blood after my appointment told me that her aunt became vegan and her cancer went away. I did not receive this information with generosity 😇

I'm not surprised you didn't take that well from the nurse. What an idiot!

Is there a plan to get a PET scan done? Do you need any support in hassling them about this? I'm not surprised you want to lie down. I love lying down. Indulge yourself a bit, maybe 😊

We are here for you if you want to talk. Or just ramble. Would a therapist be useful?

I’m so sorry you’re going through this. Cancer is such a bitch. You’re being so incredibly brave and that’s fine but it’s fine to let that go and have a good cry with your family. It’s totally normal to feel angry. Sending you heaps of positive vibes and love

Hello TerracottaWorrier. I have read this thread and come to send you a hug. I love the sound of your unconventional life, I'm a bit like that too, I would love to hear more if you're up for a walk down memory lane xxx

That nurse should be sacked. That’s an horrifically inappropriate comment she made. I hope you gave her both barrels. Really hope you get some answers soon, and that there is something positive to be done.

Oh my word, that nurse!! We had various ridiculous herbal remedies suggested for DH’s brain cancer but none of those daft people was an actual medical professional! Sending much love x

How are you op?

oh F this S - I'm sorry to read this news.

Buy all the perfume you like! Have you been able to speak to Macmillan? I thought one could self-refer? echo the Maggie's recommendation.

I thought I'd read about a cancer-conscious massage + reflexology therapist - will try to find in case they do facials too.

Thinking of you xx