Hello all, another anal cancer newbie here!

KatB5 3 months ago

26 replies
73 subscribers
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Hello everyone,

I was diagnosed in early September 2025 with squamous cell carcinoma of the rectum - anal cancer Stage 4 T4 N1 M1. The tumour is 7.5cm and protruding, which is quite sore sometimes. It's Stage 4 as I have one liver met and local nymph node involvement. My 'journey' has not been straightforward as I was due to start 10 sessions of radiotherapy in mid-November. This had to be cancelled as I developed a fistula (distressing symptoms!) and admitted to hospital for an emergency loop colostomy just over two weeks ago. Recovery went well, I was out of hospital after four days and 'Paloma the Stoma' has eased the pain in my right buttock and the painful poos! I'm managing well and have got used to her 'quirks'.

I'm seeing the oncologist tomorrow with a view to starting chemotherapy a week later. The idea is to start the chemo first to target the whole body, including the liver. It will be six cycles of carboplatin and paclitaxcel. I'm feeling positive, keeping active with daily walks and really ready to start treatment and begin the road to recovery.

When I was first diagnosed, I started browsing the forum and was so grateful to have found this supportive community which provided some really helpful tips and information in my early days. I didn't feel so alone. So a big thank you to you all! Given the twists and turns over the last few months, decided to join once I had a firmer idea of treatment going forwards.

I'd love to hear from any other members who have had a similar experience to me. It seems that I'm on a different treatment pathway to the standard 5.5 week chemoradiation regime. Thank you.

Kathy

Nikki65 3 months ago

Another warm welcome from me KatB5although I’m really sorry to hear of your recent diagnosis & the awful rollercoaster ride you’ve been on since!

Although none of us would have chosen to be here for obvious reasons I truly love our little community, we have an array of beautiful & generous souls here that are always willing to take time out of their day to help support others.

I see that you’ve already received some replies from other members that have been through a similar treatment regime to what you’re facing so I hope that’s been helpful for you.

You sound ready to take this on so sending lots of positive thoughts your way. Hope your appointment went well today.

Nicola

JDTb698a5 3 months ago in reply to KatB5

Good luck with the chemo, I felt far more in control once I got started on the treatment, fortunately I didn't have long to wait for my first session after seeing my Oncologist, and can't believe how fast it's going.

Julie xx

KatB5 3 months ago in reply to JoFe

Thanks JoFe, and great to hear you're doing well. It's so encouraging to hear other member's experiences.

Kathy x

KatB5 3 months ago in reply to Irene75359

Thank you Irene for the interesting insight. And I can quite understand that given your diagnosis, you wouldn't want to miss any sessions on your particular treatment plan. You've definitely got to stand up for yourself, I'm rapidly discovering.

I don't take any supplements and hadn't really thought about that aspect. Though with my upcoming blood tests next week, I have stocked up on watercress and black pudding to help boost my red blood cells. So, a full English on Sunday morning beckons!

I had my first visit from the community stoma nurse today which was really helpful and I learned a lot. Paloma now has a concave bag and 'extension ring' which should help my skin as it was getting a little red.

Kathy xx

JDTb698a5 3 months ago in reply to KatB5

Great to hear your treatment is started so soon Kathy. Sounds the same regime as me, 6 x 28 day cycles, they did my chemo first to hit the liver mets before the radiotherapy

I finished cycle 4 yesterday even though Neutrophils were a bit low.

You will find the 1st treatment if you're on Carboplatin and paclitaxel, takes longer, I hadn't been told it was 2 drugs day I & then day 8 & 15 only the Paclitaxel. Always take a good book.

Like Irene I had to miss a session due to very low Neutrophils and it panicked me, but after being given injections to boost Neutrophils it's gone to plan since.

What hospital are you under?

Will be thinking if you next week. Xx

KatB5 3 months ago in reply to JDTb698a5

Thanks JDT,

Yes, my regime sounds similar to yours due to the liver spread. Good to hear that your treatment is still on course, despite having to miss a session.

I'm under Worcestershire Royal Hospital in Worcester, only about 10 miles away fortunately so a 20 to 30 minute journey depending on traffic. I asked my colorectal consultant how many cases of anal cancer they see a year here, and it's about 50.

So, not many of us...

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