Newly diagnosed Anal SCC

Hi thecannon79

I’m sorry you find yourself here. However, you’ve come to the right place. Anal cancer is rare, about 1000 people in the UK are diagnosed each year, so this is the best place to get advise and support from people that really understand. There are lots of lovely people on here with a wealth of knowledge. Some like you are recently diagnosed, some are currently going through treatment, some having post-treatment check-ups and some are 5 years clear and going strong.

I’m sure the hospital has given you some information to read however, anal cancer is a type of skin cancer, nothing to do with bowel disease and is often caused by the HPV virus, the same virus that causes cervical cancer.

I was in your position about a year ago. I was diagnosed in March 2018 with stage 3b cancer at age 47. I didn’t really have any symptoms, had never heard of anal cancer and was very scared. I went through treatment and in Sept ’18 was given the all clear. I’m now 10 months post treatment and living my life just as I did pre-cancer. I can imagine you are feeling very confused and scared right now however, treatment for this type of cancer is short, manageable and very effective. You will read lots of positive stories on here. 

So you’ve had all the scans, this is standard process and will give your medical team all the information they’ll need to stage your cancer and plan for treatment. Treatment for this cancer is the same for most people - chemoradiation (a mixture of daily chemo and radiotherapy). The radiotherapy is the main treatment, the chemo is secondary. The treatment is very short, lasting only 5.5 weeks, in some cases it can be slightly shorter.

At your first oncology meeting you will be given the results of your scans and your cancer staging. They score 3 areas, the size/location of your Tumour, any spread to lymph Nodes and any spread to other organs  - Metastasis. For example, my cancer was staged T4, N3, M0 overall Stage 3b. During this meeting your oncologist will talk you through treatment, side effects and answer any questions you’ll have. I’d advise you start writing down all the questions and concerns that come into your head. The first meeting can be very daunting with information overload and it can be easy to forget things. I’m sure you’ll have someone with you, so get them to write notes for you.

After this meeting you will be given an appointment to have another CT scan, this scan is done purely for planning your radiotherapy. Its quite a complex process as they have to take all sorts of measurements to ensure your tumour is directly targeted. It usually takes about 2 weeks for this to be done. During this time you’ll receive a radiotherapy timetable detailing the times of your daily treatment. Radiotherapy is painless and quick, you’re lying on the machine for 10/15 mins or so.

I’m going to leave it there as this is probably as much as you need to know right now. I know how scary it is trying to process the diagnosis bombshell, whilst waiting for information about whats coming next. Your head will be whizzing, you’ll be very emotional. Your mind will play tricks on you taking you to dark places. You’ll swing from feeling strong and ready to take this one to feeling hopeless. All these feelings are totally normal and okay. Once you’ve had your meeting things will begin to move quickly and believe it or not, once you start treatment you will feel better, just focused on getting through it. 

This website is fantastic, come on here anytime you’re concerned, need a question answered or just want someone to talk to. You can post openly and a bit like Facebook, be-friend individuals. There are many people on here that can talk you through the various stages of the process/treatment. 

I’ll forward you more information about how Macmillan an support you along with information about an anal cancer charity who offer a peer to peer support programme.

Claire, you are not alone we are all here to support you. Challenging times are on the way but you WILL get through them, just like all us survivors. I hope you’re not in too much discomfort at the moment and good luck for Thursday, let us know how you get on.

Sarah x

Hi Sarah, thankyou so much for replying. Glad to hear you have been given the all clear.

I haven't been given any reading information, perhaps I'll get some on Thursday.  It certainly is a lot to take in at the moment so any information I get is well received.

I have my partner and brother coming with me so hopefully one of them will write things down for me lol. I'm sure I should be thinking of loads of questions to ask them but I haven't actually thought of any!!

I will certainly let you know how I get on and thanks again.

Claire X

thecannon79

We all cope differently, but when I was diagnosed I wanted to find out as much information as I could. I spent a lot of time googling which wasn’t always the best choice. 

I’ve attached two good sources for information. The first is a link to the Macmillan Anal Cancer page where you can read about this cancer, treatment, side effects etc. I was given this booklet when I was first diagnosed.

https://www.macmillan.org.uk/information-and-support/anal-cancer

There’s also ‘The HPV and Anal Cancer Foundation’ a charity based in the U.S. with an office in London. They have a great website with lots of factual information. They also run a peer support programme which I used and found really supportive. They pair you with a UK  anal cancer survivor who supports you 1:1 throughout your treatment and beyond. Here’s the link:

https://www.analcancerfoundation.org/find-support/patient-support/connect-with-a-peer/

The first oncology meeting is usually quite detailed, they will tell you everything you need to know so don’t feel you have to go armed with questions. 

Sarah x

Hi Claire, 

I’m sorry you’re having to deal with all this horrible business! 

As with you, and many others on this forum, I went into hospital totally unaware that I had cancer, I was admitted to have what the Dr’s thought was an internal ulcer repaired and came round to the news that a biopsy had been taken instead as whatever was there was beginning to invade my muscle! 7 days later I was given my diagnosis. I had no symptoms other than an external polyp that suddenly changed in appearance & I went straight to my GP, this was 2 weeks prior to my biopsy so I’m eternally grateful for having a GP that was really on the ball. 

I’ve been incredibly lucky that I was diagnosed very early stages T1N0M0, I see Sarah has already explained the staging process. My story is slightly different to most people’s because as I was diagnosed very early I was offered surgery to remove the tumour as way of a cure, in hindsight I think this relies on how deep as opposed to the circumference of the tumour as mine was 20mm in circumference but only 2mm deep. I underwent surgery last March with successful removal, my surgeon achieved a 4mm clear margin except for a small portion which only had a 1mm clearance (this being the cut off point for further treatment) therefore I was offered the chemo-radiotherapy as mop-up treatment. 

Things feel that they move at 100 mph after diagnosis don’t they? Although better this way as it stops you sitting & dwelling too much & certainly the more proactive the Drs were being the more hopeful I was at there being a positive outcome. 

Sarah & I went through treatment at the same time & supported one another throughout which was great & I totally agree with what she says about information overload. Don’t worry about not having any questions as yet, your treatment plan will be fully explained at your oncology appointment & things discussed in that meeting will probably prompt you or the people accompanying you to ask questions or as with me everything was explained so thoroughly that I couldn’t think of anything else I needed to add! 

Read the Macmillan literature that Sarah has sent the link for, you’ll probably have been told most of it by now but I was given this at diagnosis & found it very informative & keep posting on here too, we’re a bit of a rare breed but a good bunch that between us can offer you lots of support & advice.

Just to add I’m now 10 months post treatment & disease free to date. 

Good luck with your oncology appointment on Thursday & let us know how things go. 

Nicola x

Hi, Claire

Thought i’d Say hello!

I am 9 months post treatment and had my third check up yesterday and thankfully it is still all clear! 

The beginning of this journey was the scariest for me, a rollercoaster of info overload, scans etc, I just wanted to start as soon as possible, I had the most ridiculous thoughts that while I was waiting it was spreading everywhere. 

Sarah and Nicola have given you fanastic information, we really are lucky to have such wonderful people offering advice and support on this site

I still find it comforting to this day ! There is always someone who will offer support, give advice or point you in the right direction if you have concerns. This site was invaluable to me as i’m Sure it will be to you. 

Thursday is a big day, everything will be explained, I remember that day for me very clearly, my husband and I came out feeling less frightened and more positive feeling like we were in safe hands. 

Any concerns just pop on here, it will make you feel instantly better, everyone of us have been where you are. I still ask for advice now! 

Keep us posted

Very Best Wishes

Crystal

sa

good point Crystal T I too felt a lot more positive and secure once I’d had that first oncology meeting. I felt like someone had taken control of my situation and I was more than happy to be told what to do and when. The NHS is bloody amazing I cannot fault them in anyway, I was well looked after and will be forever grateful.

So glad to hear your check-up was clear, you can relax until the next time. I was going to contact you to see how you got on but you beat me to it. As you know, you and I are very similar in terms of original staging and timeframe so its re-assuring to hear each others stories.

Hello Claire, 

I’m Lorna from Scotland!!!! 

I am 8 months post treatment and clear of cancer! 

My consultant was so sure of my amazing response to treatment that I was given my reversal stoma surgery last week. 

Any questions just shout but wanted to offer positive support to you. Scariest diagnosis, aggressive treatment, you can beat this if you keep strong , get the best support you can and concentrate on you. 

This site was a godsend for me also, being able to read other journeys and say whatever you want as no one knows or judges you! 

Much love and good luck xxxxxxx 

Hi Sarah,

Thank you, I thought I was being very positive and strong but as soon as I got outside the hospital I started to cry!, Tears Of Joy! I guess i’ll be like that for a while yet. You are right our story is virtually the same pre diagnosis to staging to  burns. I feel blessed to have the support on here from all of you. You really are a special bunch. 

Take care

Crystal x x x

Thankyou all so much for replying ladies

You all seem to be coping extremely well and I'm so glad I found this page to hear your experiences.

Looking forward to Thursday in a strange way so I can find out everything.

How did you all cope during treatment? My hospital is over an hour away so guessing the travelling back & forth will be a nightmare. I'm self employed also so have the worry of no income etc however my clients have all been amazing.

Away to read the information that has been posted for me.

Claire X

Hi All, 

Just wanted to jump back on & say congratulations to Crystal on your 9 month clear check-up & also huge congratulations to Lorna on your stoma reversal, hope everything is well, that’s a massive step forward for you. 

Once again good luck for Thursday Claire.

Nicola x