Just diagnosed Squamous Cell Cancer of the Anus 10/01/2022

Hi Louise,

Welcome to this site. I am so sorry that you have received this diagnosis today. I believe Squamous Cell Carcinoma is the most frequently found cancer or tumour at this site, though it is not common. 
You will find many of us here on this group have been diagnosed and treated for this sort of cancer. I myself was diagnosed last autumn and finished treatment 22/12/2021. 
This is almost the most worrying time for you, I remember being very frightened and found the support and advice on here very helpful . I hope you do too: 

Once treatment gets underway the time will fly and you will feel you are on the road to getting better. Most often for this cancer, you will not have surgery, but radiotherapy in combination with chemotherapy. 
Please feel free to post any questions you have ( and don’t be embarrassed  about being graphic ), there are so many wonderful people on here who are out the other side of treatment who will guide you through.

Good luck

Hi Louise.

I was diagnosed with this march 21. I had a mixture of radiotherapy n chemotherapy. My treatment ended june 21 n although it was tough i counted my blessings that i didnt go through as much as others, although of course its a personal journey.

You will get through this and you have much support here x

Hi louise

ive just finished treatment in November it’s a tough time  but you will get the strength and get through it 

I saw oncology this week and got told with my treatment radiotherapy and chemo my cancer has gone and feel a lot better I wish you all the luck in the world you have a good outcome 

keep strong it gets you through it 

denise

Hi Louise

I have not long been diagnosed with the  same , my tumor is very large especially on the external I thought it was a skin tag at first and stupidly never went and seen about it as felt embarrassed of where it was , but over the years it's grown and by September last year it started ro get painful so I went and was told at the first hospital appointment it was cancer which totally floored me , afyer scans etc I found out my cancer had spread ro lypmh glands in groin. I've had to get a colostomy bag which I got on the 16th Dec this is so the radiotherapy doesn't damage bowel hopefully I can get it revereded, and I start my chemoradation on 31st Jan, I have just joined this and found this very helpful and very nice and caring people on here who know what ur going through,  take care x

Hi Louise (1996), 

Squamous Cell Carcinoma is the most common of anal cancers which generally develops in the cells in the lining of the anus, there’s a couple of less common types one of which is  Adenocarcinoma which develops in the glands in the anus. 

Most of us here have been through the standard treatment for anal cancer which is chemoradiotherapy. The treatment generally consists of one short infusion of chemotherapy day 1 of radiotherapy (mitomycin) & then oral chemo (capecitabine) twice a day each day of radiotherapy. Radiotherapy sessions are short & generally each day Monday-Friday. Standard treatment is usually 28 days Monday-Friday weekends off. 

Everyone’s experience of treatment differs slightly, personally I had very few side effects from the chemotherapy, I had a skin reaction to the radiotherapy similar to sunburn, you’re given lotions & potions to help with any side effects you may have. I’m now 3 years 7 months post treatment with no evidence of disease (NED) & doing well, I’m back to doing everything I was prior to treatment. 

Please don’t be afraid to ask any questions you might have, however personal they may seem, I can guarantee we’ve all asked them before. You’ll find there are lots of us here that will help support you through this. 

Nicola 

Hello Louise, 

Welcome to this amazing group of people. I’m sorry you find yourself here but glad you have found the group. It will help you a lot! 

I was diagnosed on 8 June 2021, Stage III Squamous cell carcinoma anal cancer, T4 N2 M0 (this is the grading, you should get yours soon and that will help you understand what your journey will entail). I’m 51. Had very few symptoms really. I started treatment on 14 July and finished on 20 August. SCC is the most usual cancer in this area and, if it can be thought of as the better one, it is certainly more treatable. 

It was tough but doable and with this group to support you, to share their experience so you don’t feel alone and help you with endless tips and encouragement, you will be fine. 

We wish you all the best, ask us anything, anything at all. Nothing can shock us (you’ll see we’ve all shared things that previously we might not have dreamed of) but this treatment will save your life and this group will keep you sane.

Soon this scary part (the beginning) will be over and then you’ll look back on this and you’ll feel so much better.

We will be here to metaphorically hold your hand along the way. You can click on our names and read a little of our journey etc. Scroll through all the categories on here, it is full of fantastic information and guidance. 

Ask us anything, anything at all and if we can help we will.

best wishes

PPR x 

Hi PPR, Thank you so so much for you wonderful words, I sort of clung to this web sight,everyone is so so kind.

i have my PET scan next Wednesday, 19/01/2022 and the I’ve been told that I will get my treatment plan. 

Ive taken on board all your recommendations on how to help with the healing. Today I bought the Himalayan Bath salts

tonight going to buy the  Pamper coconut pure wipes And the sitz Bath of Amazon. 

Anthing else you could recommend would be wonderful. 

How are you doing now? 

Plots of Love Louise xxx️️️

Hi Carrie, how lovely to hear from you, it was so kind to answer me.

I’m 61 years old, have 3 amazing grown sons and 5 grandchildren all under the age of 4.

My boys are my world. 40, 34, 32 years old. I also have an amazing husband and family so I’m very blessed. 

It has come as a Hugh shock to me as I’ve kept myself healthy my whole life. 

This web sight has help me deal a little better with this whole scary situation. When I read others stories it really really helps to know your not alone fighting this battle we are all in it together. 

I have my PET net Wednesday 19/01/2022 and then have been advised that I will get my treatment plan which I have been told is chemoradiation. This is what the cancer nurse said and she told me along with m6 consultant that it hasn’t spread,which I hope is true. 

How are you doing now? 

Love louise xxxx

Hello Louise 1996

So everyone on here has tried many different things but here is my (rather long!!!) list of things I’d say made my life easier/more bearable:-

• StrataXRT Gel - I could not have lived without this gel, it’s fairly new so not all oncologists are aware of it. It stops you suffering from such deep tissue damage from the radiation without disrupting the treatment. It meant my recovery was much quicker. You start using it the first day of treatment and all the way through and into post treatment. Tiny bit how’s a long way. It’s expensive but I only really needed one 50g tube (although I bought a second and you would be so welcome to it! Happy to post it to you) bought from www.mwkhealthcare.co.uk (such a lovely company, the managing director emailed me to say good luck with treatment and to email him any questions). Can’t recommend them more highly. Alternatives the hospital gives you are usually Flamigel for during treatment and Flamizine for post treatment. Also good but I’d say StrataXRT is a newer more refined formulation with a better outcome. You can read up about it and see what will suit you. 
  
  
• Instillagel - an anaesthetic antiseptic gel that a lot of people use on here. Could not have lived without it, particularly post treatment. Your GP or oncologist can easily prescribe this although you an just buy it online. It anaesthetises anywhere you have pain and can be inserted inside anus too if required. Particularly useful when you have bowel movements during or after treatment. 
• Pain relief - paracetamol was great but later on I was prescribed oramoroph which really helped me get through. Your team will make sure you have what you need but make sure you organise it before so it’s there and ready when you need it! 
  
  
• Loperamide or alternative anti diarrhoea medication. Your treatment nurses will ensure you have these. Very useful for travel times to appointments! 
• Tena lady or alternative pants - I gave up trying to be brave - even though I only had a 20 min journey in the car to my daily radiation treatments it just seemed better safe than sorry! I learnt very quickly that there no shame in using everything even things I thought I’d never use! Sometimes it was even difficult to make it from the bed to the bathroom in time so made my life a lot easier! 
  
  
• Himalayan or Dead Sea Bath salts - in a daily bath will help heal and soothe any wounds or sore bits and even helps prevent them plus I found lying in a bath for hours on end helped me so very much. It helped me relax and the pain and soothed sore bits.

• Cooling gel pads to pop down there post radiotherapy treatment each day - I used Happynunny postpartum ice packs from Amazon. I kept them in place with some nice big pants! Ha ha but boy did they help! 
• Gel cushion - lots of people love the donut cushion but that wasn’t that comfortable for me. I found a gel cushion far more comfortable! I got several from Amazon. A blue gel cushion in a black cover. I had one in the car. One in the house and one for my bath (took the black cover off) it made sitting a lot easier esp in the bath! 

• Polymem dressings - an amazing dressing  you can put on that keeps the sensitive areas from being in contact with anything. You can use the anaesthetic Instillagel underneath it for topical pain relief too. A godsend! 
  
  
• Piriton for any itching you may experience 

• Happypo XL portable bidet bottle - could not have lived without this. It’s a squeeze bottle to douse your bits with tepid water when weeing etc. It really helps soothe. It’s a must buy! Or something similar. Some people suggest using shower but I found this super easy and portable! Nurses can also prescribe you saline syringes that do the same thing. 
  
  
• When going for radiotherapy you have to be naked from the waist down so I found it preferable to wear a dress so I could just pull it up out of the way. It is usually slightly chilly in radiation room so keep cosy up top! It sounds embarrassing but these very kind souls deal with us all the time and are very sensitive and caring. You’ll be in good hands. No embarrassment at all. 
  
  
• A non irritating fragrance free wash for your nether regions - Aveeno oatmeal wash is often recommended but you can also use a plain aqueous cream (though it is important to note you should not have any creams etc on prior to your radiotherapy session! Aveeno also do an oatmeal soothing bath treatment which is great for soothing and monitoring irritated skin. Just a sachet you can pop in the bath with the salts too. 
  
  
• Medihoney Wound gel with manual honey for post treatment healing. Lots of hospitals use this too so ask your team. Excellent natural healing but tricky to apply! I used it with the Polymem drawing to keep it from going everywhere! 
  
  
• Bed mats - just child or pet mats that you can sit on in bed and let the air get to your nether regions 
• Anti sickness medications - not everyone needs them but your team will make sure you have something on standby - you need to be able to eat something in order to take your chemo pills. I became very fond of a ginger nut biscuit with my cup of tea in the morning. Sometimes in the later stages it was all I could manage. I should have taken more anti sickness  medication because I became quite ill through malnutrition so take heed of your nurses! Also in the US they prescribe Coca Cola syrup as anti nausea. So I found very cold iced Coca Cola a godsend when I wasn’t feeling great and the sugar gave me a tiny boost sometimes enough to help me to eat more good things! 
  
  
• lastly, try to keep positive. They say it’s the single most important factor in a good outcome from this treatment. Remember it’s only a few weeks of your life. Don’t be frightened, this is a very treatable cancer.  You’ll get through it like we all did. And we are here to listen and to help where we can. 
  
  
  
• accept help from all your friends and cry or chat as much as you need to. Whatever helps you get through it 
• Netflix, prime video, box sets, I never watch television in bed but for these weeks I watched a lot even when I fell asleep watching it. It distracted me from what I was going through! 

I’ll send you a friend request so we can chat when you need to.  I feel amazing now, better than I have done in many many years!  You’ve got this Louise! This is the beginning of getting you better!!!! Good luck darling.  Xx 

Great tips Prettypinkroses and reading your experience really does bring back some memories. I will add in my hospital we didn’t have to strip off as they only lowered your clothing to expose the little dot tattoos on hips and pubic bone and covered you with a small paper sheet. Many of us here can remember how stressful it was waiting for the start of the treatment and one thing I shall remember is we are all different and don’t always experience all the side effects that can happen. I too used strataxrt which I think helped prevent skin breakdown and the nurses would comment on how my skin was holding up externally. Admittedly I was sore from the buildup after treatment finished for up to four weeks but you do it and you didn’t have to cope with the daily trips to the hospital and could just stay at home and rest. Another thing I did was buy bigger knickers and I bought some harem trousers which for me was fantastic. The best of luck for those starting out on their journey of treatment.