T1 Anal Cancer (SCC) newly diagnosed

Hi Jay,

I'm soon about to start the same course of treatment as you. I'm seeing the oncologist on Wednesday, then positioning scans, then onto treatment. My tumour hasn't been removed and has spread slightly into surrounding pelvic muscle and lymph nodes - but I am assured that it should still be curable, so hanging onto hope!

When does your treatment start? Do they believe they have removed all of the affected tissue and the treatment is to prevent reoccurrence? Hope you're doing ok. It's a scary time facing all this.

Jenna xx

Hi Jenna 

Such a really scary time facing this, its took me a long time to reach out for support like this group and others.  I started my treatment today , which went really smoothly.  

The surgeon who removed the lump said the lump had been removed but due to complications with surgery , they couldn't be sure that they had taken a good 10% margin.  My oncology consultant said to have the treatment to give assurance that any microscopic cancer cells not detected in any scans would be killed as an extra precaution. 

Hope you are doing ok too.  

Jay xx

Glad your first day has gone well :) must feel like a relief. Will keep an eye out to see how you're getting on. Not sure if you've read through some of the other posts here as yet, but there's lots of advice on dealing with side effects etc from people who are going through or have already gone through these treatments. 

Best of luck to you going forward xx

Hi Jay1706

Welcome to the forum. I'm pleased your first day went well, one day closer to the finish. I was diagnosed last summer T2N1 and had the standard 28 days radiotherapy with intravenous chemo for 5 days at the beginning and 5 at the end which i completed 6th November 2024. Ask any questions you like nothing is out of bounds, everyone here will support you. There is a lady on here called Nikki65 who is a community champion who if memory serves me right had surgery first and then the same treatment as you and she is about 6/7 years post now, I'm sure she will respond to your post as soon as she sees it. Sending hugs. Xx

Hi Jay, 

Welcome, 

I'm in my fifth week, day 22 today!

I found the first 3 weeks ok, I was a bit nauseous, but my oncologist sorted that out with a low dose steroid and anti sickness meds, was a bit sore with sensitive urethra, but got lots of tips from radiographers and now under control. I found by early afternoon I needed a nap, and didn’t really wake up again till 6 the next morning!I was in a lot of discomfort before I started treatment, and that eased really quickly once the radiotherapy started

week 4 started getting sore,I now walk like a duck

and wear my husband’s cotton boxers, but doing ok!

keep everything moisturised and ask for creams/ gels as soon as you think you might need them

good luck

it goes really quickly once you are in the routine!

Sue

Hi Jay1706 ,

Firstly welcome to the MacMillan Online Community although I’m so sorry to hear of your recent diagnosis.

Your story is very similar to my own. I too was diagnosed with stage 1 SCC anal cancer back in February 2018 & took a very similar treatment path to your planned treatment & although my local resection surgery resulted in clear margins a tiny area of my tumour only had a 1mm clearance & that is cut off for further treatment. I was referred on to my lovely oncologist who put me forward for the PLATO clinical trial which resulted in 23 days of radiotherapy opposed to the usual 28 (Monday to Friday, weekends off all treatment) with day 1 including a short infusion of mitomycin & oral chemo (capecitabine) twice daily. This treatment was described to me as mop up treatment, belt & braces & an insurance policy for a healthy future for me. I’m now almost 7 years post treatment (June) & living my life.

The treatment can be tough, mainly due to the skin reaction from the radiotherapy, but like me you’ll be 5 days less than the standard 28 sessions which can make a big difference.

It's good to hear your first day went well, that really is the worst day out of the way, hopefully now you’ll relax into the routine of your daily appointments & you’ll be at the end before you know it. 

Just let your radiotherapy team know of any side effects you might be experiencing, they will have a multitude of lotions & potions for you to try & remember we’re here to help support you however we can.

Nicola