Fear & How to Cope

Hello, you are not alone. This is the scariest and most terrible thing to happen. You are on the correct site to share and get advice! 
we have all had surgery or treatment or both so understand. 

we are here. Keep strong and fight it. The treatment is so very successful. Xxxxxx 

lorna xxxx 

Hi SusannaW,

Can I firstly welcome you to the online community although I’m so sorry you’ve had to find us. 

It certainly sounds as though you’ve been through a lot recently, that’s a big operation you’ve had only to find out you now have AC & are facing  chemoradiotherapy treatment. 

You can take a look at my story by clicking on my username & reading my profile but to cut a long story short I had a T1 squamous cell carcinoma removed via surgery March 2018 & commenced a 4.5 week course of chemoradiotherapy in May 2018 approximately 8 weeks after my surgery. Now I’m not comparing our surgeries as mine was only a small wound compared to what yours must be, mine was a local excision, but although a little bit tender my wound didn’t react to the treatment any worse than the normal skin surrounding it, I was worried that it would completely break down! The worst part for me was going to the loo, pooing was literally a real pain & I’m presuming with your extensive surgery you already have a colostomy? 

I will be honest & say the fatigue during the treatment got to me towards the end & I found myself napping a lot so just  rest when you need to. 

Most of us on here have had this treatment & if we’re honest most of us were terrified going into it but definitely in my case the reality of treatment was far less scary than the thought of it!  Once you start ticking off the days on your treatment schedule you’ll be surprised how quickly it passes, also chemoradiotherapy is very effective in the treatment of AC. You’ve come to the right place for support & advice so please if you have any questions etc., please just ask.

In addition to this Macmillan have the (Missing Forum) facility if you have questions that are of a more medical nature, it does sometimes take a day or two to get a reply though. 

We’re here when you need us.

Nicola 

Thanks for the replies Lorna & Nicola. It really is the most frightening thing to happen to you,I really did not realise just how scary it is.

Nicola thanks for explaining about your wound as that is something that really worries me the wound opening up. Yes I already have  a colostomy so at least I won’t have to poo where it is so sore. Not sure yet how it will effect the stoma if at all.

Not sure how they know where to direct the radiotherapy as there is no longer a rectum or anus there. I don’t know if anyone has had their treatment this way around as I really don’t understand how they know where to target the radiotherapy. My consultant completely missed it during the operation it was only on biopsy after they picked it up. 

Were you all consumed with fear prior to starting treatment I can’t feel positive at all and feel completely terrified. 

Hi

I am a born worrier and I managed to get through my treatment in August/September 2019 now waiting for my 3 month appointment in January. So if I can so can you.

Whatever hospital you are at the radiotherapy teams are amazing and will have measured everything to the nth millimetre at your planning meeting and will make sure everything is lined up on the day before they start the treatment.

As for the treatment you don't feel anything and the only noise is the noise the machine makes (which isn't that bad) and my hospital had the radio piped into the room so even that was pretty much background noise -  the hardest thing for me was keeping still for 5 minutes!!  Someone on the forum suggested I play A-Z where you pick a subject and then work through the alphabet thinking of words related to that subject for each letter and it worked.  

What I imagined about the treatment before it started was FAR worse than the actual treatment and I felt much better about it after the first day.  You can do this.

Deb1E x

Hi SusannaW

Thank you for coming to our forum and introducing yourself. I feel for you hun because you’ve been through so much already with your surgery, and now you’re facing further treatment. I understand how scary that is. 

As you may know, anal cancer is an uncommon, skin cancer and the protocol treatment is usually 5.5 weeks of chemo-radiation. Surgery is only usually done if the tumor is small enough to be removed prior to chemo-radiation or, as a result of the chemo-radiation not working or recurrence. The thought of having chemo and radiotherapy is daunting. However, it won’t be as bad as you imagine. The main treatment is the radiotherapy, the chemo is secondary and fairly gentle in comparison to other types of chemo. 

Your situation is slightly unusual in that you have had surgery for one condition and then been diagnosed with another. However, you can’t be the only person this has happened to and I’m going to suggest some ways of finding someone similar out there. There really is nothing like having the support from someone who really understands. Of course we can support you though the chemo-radiation, side effects etc as well.

You can read my profile, I was diagnosed with AC last March. I am now 16 months NED (cancer free) and life has pretty much returned to normal. Like Nikki, I am a community champion on this forum and do what I can to help and support others.

The good thing about the treatment is that its short and for the majority, very effective. Your staging T2 N1 means your cancer has been discovered fairly early. The T is for tumor size and location, N is for lymp node involvement. You can score anywhere between 1-4 for each. To give you a comparison my cancer was advanced T4, N3, M0 (M is for metatastic spread). AC tends to be slow growing and contained, even when there’s spread to nodes, this is not viewed as too concerning and nodes can be treated with radiotherapy also. 

The treatment is manageable and accumulative, so the effects are usually at their worse towards the end of treatment and beyond. There are several side effects you may experience but until you start you won’t know how the treatment will effect you individually. You will still be able to get on with life but will need to slow right down. For example, I was able to get myself to hospital everyday using car, train, walking, by myself for the majority of the treatment. As the treatment progressed that was literally all I did and once back home, I had to rest a lot and rely on others for help.

I appreciate your concerned about having treatment whilst still recovering from surgery. However, it usually takes 2 weeks for the hospital to set up the radiotherapy and for the first 2/3 weeks of treatment you may not notice many side effects. So there’s still time for your body to do some further healing.

In terms of trying to find someone who’s been through similar, I would advise the following:

You could join another group on here: https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer/ whilst you haven’t had rectum/bowel cancer, there may be someone in this group that has gone through a similar surgery/pathway to you.

We have our own AC surgeon on this forum who you can email directly. If you email  he will be able to answer any questions/concerns you have on the medical side of things. You mention you’re concerned where they are going to treat as your rectum etc has been removed. Sanjaya will be able to help you with this. He volunteers for this forum so it can sometimes take a day or two for him to respond.

There is an Anal Cancer charity: https://www.analcancerfoundation.org/find-support/patient-support/connect-with-a-peer/ they are based in the U.S. with a small office in London. They offer a 1:1 peer support programme. You could contact them and they might be able to connect you with someone who’s had a similar journey.

If you’re on Facebook, there is a closed, private support just for women with AC. There are hundreds of women on there mainly from the U.S. but also from the UK and other countries. This lady manages the support group and can add you to the group if you wish: https://www.facebook.com/cmakowski 

Waiting for treatment to start is awful, your mind takes you to dark places. Once you start, believe it or not you will feel better. You will be totally focused on getting through your treatment and ticking the days off. It passes by pretty quickly.

You’ve had lots of other responses, so I hope you feel assured that you have support from many people on this site.

Come on here with any questions or concerns whenever you like. There will always be someone who will respond.

Sarah X

thank you all so much for all your replies. One of the issues which is also really frightening me is the length of time they are taking to start treatment it’s been one wait after another by the time I start treatment it will be twelve weeks from diagnosis. I am really worried this is to long I've tried to get them to speed up but it does not work. Have others had to wait this long. 

Hi

I waited just over 10 weeks from diagnosis to first treatment and had the same concerns but my consultant was quite reassuring.  

Deb1E x

Hi again SusannaW,

Just to try & answer a couple of your questions, there are a few members on this forum that have had a colostomy prior to their chemoradiotherapy treatment, you can suffer bowel disturbances due to the radiotherapy, usually loose bowel movements although I swung completely the opposite way! this can be controlled by taking loperamide or something similar & I’m presuming the same will be the case with a colostomy. Hopefully someone that’s had a colostomy throughout treatment will spot this post & be able to offer a bit of reassurance. 

Regarding directing your treatment to the correct place, I had a treatment planning scan around 2 weeks before treatment began, your tumour should be evident on this scan which then goes to the physicists who in turn plan the measurements for the radiotherapy machines so that the tumour is targeted directly. I wouldn’t have thought your previous surgery would complicate this at all the radiotherapy is a pretty exact science & each radiotherapy session will be observed closely by your radiotherapy team to make sure all the measurements provided by physicists are still correct. 

I can also assure you that I was completely terrified before treatment began, most people on here have all experienced this fear, so what you’re feeling is completely natural but as Sarah has mentioned once you get started you’ll realise it isn’t as bad as you feared, it all goes pretty quickly once you’re in the routine of attending your daily appointments. I got some fantastic support on this site from those that had gone through this before me & myself & Sarah began treatment the same day & supported each other throughout, that was a massive help to me.

Also remember you been through this huge surgery, you’re beginning your recovery & you’ve been dealt another blow with this diagnosis! That’s enough to scramble anyone’s head, so don’t be hard on yourself there really is no wonder you’re feeling this way but please take comfort that there’s lots of us here to help support you through this. I’m now almost 17 months NED & living life pretty much as I was before any of this began. 

Nicola 

Hi again SusannaW following on from my message there’s also a stoma support forum you may wish to join on here: community.macmillan.org.uk/.../

My treatment started 7 weeks after diagnosis. It felt like a lifetime. Waiting times can vary between hospitals. Maybe your medical team are holding out a little longer to give you more healing time from your surgery? They will have your best interests at heart. The treatment and support I received from the NHS was amazing. 

Sx

Thanks everyone for the replies such a wonderful group of people. I was feeling really really bad today and you have helped me a lot, I don’t feel so alone. 

I notice from reading the forum I think most of you have had Capecitabine Tablets  for the chemotherapy, they are saying I will have a PICC line with an infusion of Mitomycin and 5FU in week 1 then again in week 5. Does anyone know if the tablets are better as most people have them.