Diagnosed with Squarmous Cell Carcinoma 4/5cm lump.

HI . Im so sorry to hear your on this journey. I managed on paracetamol, I'm sure once you have your pre treatment planning at the Hospital , they will guide you. Mine was found on the 3rd Match, very similar size and same cancer after a biopsy. I had a PET. MRI and CT scan pre treatment, this started  on the 19th May. I'm 8 days post treatment now. Get yourself prepared. With Wet Wipes , i use 99% water ones off Amazon, plus a Sit bath. O% scent free shower gel etc. Pads for the bed . It's a heck of a journey , but once your on it, It starts to go quickly. Wishing you lots of luck Your Specialist nurses will be a great help. Get all the creams ,Painkillers you can off them. AGP

Thank you I shall stock up.

Up until this week I was still quite active but I am starting to lose my appetite. The lack of sleep is also not helping my energy levels.

Did you also suffer with fatigue badly?

Hi, No I did really well until the end of my 4th week's radiotherapy.  I take lots of daily vitamins, so I don't know if that helped. I'm 68, but very active. I was still working part time.

Everyone is different though, if your not sleeping, and In pain , then you will feel tired.  Get plenty of protein drinks to help your energy levels, eating well with cancer is very important I've learned. If you work.look at claiming Pip. Check if there. Is a Maggies near you. They are amazing . The people on here are also very knowledgeable and helpful. 

Best wishes Anne

Hi Chiefee 

Welcome to the club no one wants to join. I finished my treatment 6th November 2024 and it worked. I only took paracetamol for pain relief and occasionally used instillagel as part of my tumour was external, the gell stings a bit initially and then makes everything go numb and starts fading after about half an hour. I can relate to the sitting in the loo for ages, I was told by one of the radiotherapy people to just sit for a couple of minutes max and if nothing came i didn't need to go and it was my body tricking me, I think he said it was due to the inflammation. Once you have a treatment plan your team will give you creams and meds if required just make sure you keep them informed of everything. My non negotiables during treatment were water wipes and men's baggy boxers. Sending hugs. Xx

I still waiting for the official treatment plan. 

My GP offers me Naproxen but then the Colorectal nurse says not to take it. Such conflicting advice.

I am still passing quite a bit of blood which worries me. I have been to the walk in a few times but never leave with anything other than, to wait for my treatment. 

I can feel myself getting worse each day. 

Hi,

Sorry to hear you are having such a tough time. 

I would be guided by the medical team at the hospital where you are being treated and consult them about any pain or discomfort you have. Many GPs do not come across anal cancel very often, which is why it can take so long to diagnose. You could also like to contact one of the Macmillan helplines, as they might signpost you as to how to proceed in dealing with this horrible period of waiting.

The only consolation I can offer you is that you should find your symptoms decrease a lot once you have just a couple of sessions of radiotherapy.

Try to keep focussed on the fact that this is a really effective cancer treatment and the medics are working on getting you better. It will all be happening, and once you are involved it will feel much more positive. Meanwhile contact the hospital and don't just suffer in silence. x

Hello

It's a really difficult time and not being able to go to the toilet is really stressful.

After I was diagnosed I found it increasingly difficult to go to the toilet, lost a lot of weight and was very stressed.

Once I met my surgeon he offered me a solution and when you meet your team they will have options for you pre treatment.

Keep posting and keep asking questions. Somebody will have shared experiences that will help you make the best choices.

Ally xx

Hi Chiefee ,

Another warm welcome to the MacMillan Online Community from me although I’m so sorry to learn of your recent diagnosis. 

As has already been said the place you’re at with your diagnosis at the minute is possibly the worst time, you’ve had some information but not a full diagnosis, staging etc., this will be decided once your scan results are in & then a treatment plan will be made by your treating team moving forward. 

If your GP is prescribing something your colorectal team don’t agree with I would be asking them to prescribe your pain relief, it’s not acceptable that you should be left in pain whilst awaiting treatment to begin! Also have you made the colorectal nurse aware of the issues you’re having with the straining? Hopefully once your treatment starts at least some of these issues you’re experiencing will be alleviated as people report that shrinkage of the tumour can happen quite quickly once you’ve had a few sessions of radiotherapy. 

There’s nothing worse than lack of sleep to drag you down, that along with the psychological stress you’re under right now with have an effect on your appetite & result in fatigue, I remember following my own diagnosis I’d wake in the middle of the night with my mind absolutely racing & would end up laying in bed watching tv for hours just falling back to sleep when it was time to get up so I completely empathise with you. 

I hope you get your PET scan appointment comes through soon & you can get your treatment underway. Remember we’re here to support you however we can. 

Nicola 

Hi Chiefee,

Im so sorry about your diagnosis, but a warm welcome to the forum.

It’s such a difficult time when you have received the diagnosis and are not yet linked in with the specialist team. As others have said, many GPs have little or no experience of anal cancer as it’s relatively rare, and as such don’t really know how to help treat the symptoms and the pain. It sounds like you are really struggling and I hope that the colorectal nurses can be of help in liaising with your gp to help you get some relief. It would definitely be worth giving them a call.

There are of course stronger painkillers available but they do have to be balanced with stool softeners. When I saw the oncologist for the first time he took one look and immediately gave me morphine and ducolax. My tumour was partially external too so I had similar issues to you. Having said that, I held off taking the morphine until the end of treatment as was so wary of taking it although in retrospect not sure that was sensible.  

I do think pain levels vary depending on the size and location of the tumour. 

I hope you get your scans and treatment plan very soon as it’s such an anxious time waiting for everything.

Just to add that I’m 7 months on and there is no evidence of cancer so the treatment is very effective.

Hoping you can access some better help quickly.

xx

Thank you for your support..

I managed a better nights sleep thanks to a hot water bottle wedged beneath my bum. Whether it was a coincidence or not I shall find out tonight when i sleep again.

I originally saw my GP on 12th May who instantly told me he suspected Anal Cancer, the consultant was very impressed as many GP's wouldnt have found the lump. Sadly the way my GP surgery works I do not always get to see the same one if it is ever face to face. Usually its just a message sent.

I had issues where my referral wasnt put through straight away. Probably explains why my surgery is in special measures. My Colonoscopy was delayed, the specialist who was reviewing the results was then on holiday. I always felt I was left on limbo and constantly calling for updates.

I almost feel like a kid waiting for Christmas day to start treatment, it cant come sooner..

Did you suffer continued rectal bleeding? I never really suffered it until I was first diagnosed. 

Its reassuring to read the treatment is effective and Im glad it has worked for you.