Tips for treatment

Morning Sue,

Yes, sometimes it does all feel a bit messy getting started - I think AC is quite rare and sometimes I wondered if they didn't deal with it very often so although they clinically knew what they were doing, the logistics of treatment sometimes seemed a bit confused.It took about two months from diagnosis to starting treatment for me (but ages to actually get that diagnosis). I am not medically trained at all, but understand it is a slow growing tumour. 

I had the same treatment they are offering you. I had a really sore bottom and was relieved to find that after a few sessions of radiotherapy that disappeared. It is very effective but can be a bit harsh on your skin and can give some bowel issues - I had to go to the loo as soon as I woke up.

I also had a PET scan, I think that just gives a more detailed picture than CT or MRI.

The radiotherapists will probably supply you with cream to protect your skin, but I would start now with moisturising your underneath, from the tops of your legs right round to your tailbone, but don't do it on the days you are going to hospital as it can affect scans and radiotherapy equipment.

As far as equipment goes, lots of us found a sitz bath or portable bidet useful for keeping clean and soothed. I'm sure you'll get more great suggestions from others here.

Sorry, this has gone on a bit but you will get loads of advice and help here.  Welcome, and all the best. xxx

Hi JustSue

I had a lot of delays along the way and I was about 8 months from my last GP appointment and in the years from my 1^st to the start of treatment but from having my biopsy with an EUA everything progressed at a reasonable speed, it was just over 4 weeks from biopsy to 1^st appointment at the treating hospital The Christie and then just over 3 weeks to the start of chemo-radiotherapy treatment. But I have seen some people report faster times than this. The treating hospital had a few requirements before they would accept the referral, one was confirmation by biopsy, one was a recent MRI and another was a full body PET scan. The PET scan is standard procedure for a lot of treating hospitals but not for all of them. I do know they use the PET scan for several things and one of this is for the final staging and that usually comes from the treating hospital.

My treatment was the same as yours, IV chemo day 1 then chemo tablets and radiotherapy.

Like other I did feel much more in control once I had my treatment planned and especially once treatment started, but the time before that was a really stressful and uncertain time with lots of unknowns.

Hope you get your treatment plan soon and that it all goes well for you.

Sending Hugs

Monty xx

Hello JustSue 

This is an awful time for you, I really feel for you.  Everything seems to take so long in the early days, I was first seen mid-March and by the time I had all the scans, biopsies and investigations I didn't start treatment until mid-June - and my hospital was excellent, I had two procedures in one week as samples from the tumour were very hard to get.  I was so impatient and breathed a huge sigh of relief when everything swung into place.  As Monty says, some hospitals have a PET scan as standard.  I am sorry that there was confusion about which hospital should be treating you, unfortunately many hospitals don't have the cutting edge radiotherapy machines and I too had to travel for the daily treatment, although not as far as you.

Mrs Vanilla has given some good advice about preparation.  I also used incontinence sheets that stick on the normal base bed sheet; I never did need them but the chemo/radiotherapy gave me diarrhoea.  I didn't want to take anything to firm me up as at the late stages of treatment, bowel movements became painful and constipation is not your friend. 

The other point I always stress is that when you do start with your treating hospital, keep them in the picture with all your symptoms that you may develop during treatment; they have an array of pills and potions and these are normally given to you the same day.  If you have a long car journey, a soft cushion is really useful especially in the later stages of treatment.

I really hope you have your PET scan very soon and you can get started.  We are always here to help and support.

Irene xx

Hi JustSue They found my tumour on the 16th and I just got confirmation of P16 positive AC post my biopsy on Friday (they ran it urgently - you need to push for this). The PET scan gives detail of any node involvment in a way that CT scans cannot (mine was clear! for now). I have a stoma created next week (temp) as they are worried with the placement of my tumour for rectovaginal fissure. Though scary, I have to remind myself I wont need to go to the loo through my sore bottom. I then have my radiotherapy planning scan the following week and treatment should start 2-3 weeks later. It takes time to plan the radiotherapy to minimise damage to surrounding tissue. You should ask for a VMAT machine as this reduces side effects and impact as much as possible. I am also having a colcoscopy to check my cervix the same week as the planning to check that is clear as HPV cancers can spring up elsewhere etc.

Skin care and pain meds are carefully monitored. And as someone with thin skin, I am not looking forward to that but can only go forwards!!! 

So, dont worry - it is geberally seen as a slower growth cancer and if your histology and PET scan show it as moderately differentiated then taking the rime to plan the radiotherapy with care is the best thing. Willow x

Hi JustSue i went to gp feb 2024 my official diagnosis was end july 2024 and i started treatment end of september 2024. As far as im aware a PET scan is standard. My essentials that the hospital didnt provide were water wipes, mens baggy boxers and my limbo sleeve as all my chemo was via a picc and pump. Sending hugs. Xx

Thanks, I think we spoke on my first thread when I was first diagnosed. My biopsy was taken on New Year’s Eve, CT and MRI have also been done so it’s just the PET to go. I’m hoping this will be soon x

Great advice thank you. I was sent in an urgent referral on the 4th December 2025 so it’s been a few months. My tumour has grown since then, I can feel it. Thanks for your help and support x

Hi JustSue We did!! It is so, so hard when you are waiting for the plan. The PET is important as it determines nodal involvment and where they need to irradiate. That said, if they thought your AC was aggressive from histology they would bump you up the list for sure. I think you at T2N0M0 so very, very treatable, early stage which has great outcomes, especially under 45y. So, I would push for stuff as much as you can and make sure you have a connection to your consultant clinical oncologist to understand their plan and timings. It does take weeks for the radiation plans for good reasons. Keep us posted!

Willow x

Found this! Colchester has newer machines which is great mews!!!

• Colchester Hospital (East Suffolk & North Essex NHS Foundation Trust - ESNEFT):
  • Colchester Hospital uses Varian TrueBeam linear accelerators for advanced, fast radiotherapy treatments.
  • The site uses VMAT, IMRT, and Stereotactic Ablative Body Radiotherapy (SABR) techniques.
  • Investment in 2025 included a fifth, newer machine to increase efficiency.

Arh amazing. Thanks for finding this for me. I think they have their own radiotherapy car park too so you get a code and don’t have to pay or hunt around for spaces. A little win I guess x