Hello

Welcome to the group! I just started treatment Monday the 28th, three days down, almost four!  I have a larger tumor, and a full 6 weeks of chemo/ radiation. this group has been so helpful.  I was encouraged once I found it and found that this is really the standard treatment, and pretty much everything everyone has said has aligned with what my doctors and nurses are telling me! 

Patience is important, especially with your own expectations! best wishes!

Hi Ianlee,

Sorry you have had this diagnosis. I'm glad things are moving along pretty quickly for you tho. It's very common for misdiagnosis of piles unfortunately. I was back and forth for over 2 years before finally a colonoscopy revealed the truth... I finished the standard treatment 4 weeks ago and although it was pretty tough towards the end/post treatment with the side effects, I've healed amazingly considering and am recovering well. 

This group will be invaluable to you going forward. So many people with experience and advice to share and nothing is off limits... so don't be afraid to ask if there's anything you're unsure about. Everyone has their own individual response to the treatment regards coping/timing of side effects etc, but there will always be someone who's gone through similar. 

Not sure if you've had a chance to read through some previous conversations, but it can be really helpful in preparing yourself for what's ahead. To say it's a worrying time, is an understatement! But I think you'll find things less scary as you get into the routine of it all. It all seems to fly by so quickly once you get started! 

Wishing you all the best,

Jenna xx

Hi Ian L c2e27 ,

Firstly welcome to the MacMillan Online Community although I’m so sorry to hear of your recent diagnosis. It really is a rollercoaster of a ride isn’t it? 

You've absolutely come to the right place for lots of support & hints & tips for getting through this journey from people, including myself, that have been through a diagnosis of anal cancer & subsequent treatment so we completely understand how stressful this whole thing can be. One thing I can say is once you’ve a treatment plan in place & you get over your first day of treatment you’ll begin to relax a little & your daily hospital visits will quickly become routine. 

Personally I’m a little over 7 years post treatment & getting on with life cancer free as far as I’m aware. 

Please don’t hesitate to ask any questions that you think we may be able to help with, we’re here to support you however we can. 

Nicola 

Hi Ian L c2e27 welcome to the club no one wants to join. Im coming up to 9 months post and cancer free as far as I know. Everyone here will have your back. Ask anything, nothing is out of bounds or just unload if you need to. Sending hugs.xx

Hello IanLee

These early days are awful, with all the appointments, scans and biopsies, we all remember it only too well and the mountain of feelings that go with it.  I walked around in such a state of terror I couldn't even answer the phone as I was overwhelmed with dread.  But, once you have a treatment plan in place, things will really start to look better and there is a light at the end of the tunnel.  It is tough, but doable and we are all here to tell the tale.  And the chemo/radiotherapy has an excellent track record at eradicating this particular type of cancer.

Below are the details I recently gave to another new forum member, so it very much applies to you too.

How to prepare - keep the whole pelvic area heavily moisturised before and during treatment, just don't have a heavy layer of cream on when you have a radiotherapy session, it affects the dosage. 

Lots of us used StrataX during radiotherapy, it is a very thin cream that protects the skin and is available online.  It isn't generally given to patients at hospitals, undoubtedly because of the cost.  But you might think this investment is worth it!  It didn't help me, but it helped others.

A Sitzbath - a portable plastic bidet that sits on the loo and filled with lukewarm water is invaluable for bathing the whole nether regions.  I could not have lived without this, I even used it as a loo in the latter stages, somehow going under water was much less painful and the bath is easily emptied and disinfected.

Keep in touch with your treating team at all times.  They have access to all the possible medication you may need plus lots of creams and lotions and can supply them on the day.

Keep in touch with us; we have all been in that place you are now and the forum members are a really helpful empathetic group of people.

Big hug

Irene xx

Welcome Ian L c2e27 to this wonderful forum..

Im so sorry your are going through this but you have come to the right place as we have all gone or are going through the diagnosis and treatment..

The first few weeks for me was filled with so many emotions.. relief at eventually being diagnosed as 18 months of being told it was just menapause..

Then fear.. then shame.. then anger...now acceptance..

Tips for being ready for treatment..

Sitz bath.. really is a godsend when the bowel movements get too painful..

Water wipes ..they are so kinder to your skin..

I stocked up on aveeno cream.. but hospital give u cream..

Bought bags of little chew sweets as the chemo made me go off lots of food so the little sweets helped..

Download lots of books and researched for loads of series and movies to watch..

I stuck to stodge food .. white bread.. pancakes..porridge..stayed off any green veggies..

I drank lots of barley water and cranberry and water.. I didn't get cystitis as I nearly always had a full bladder..easier to wee when it's full..and I used a shewee when the skin started to get too sore..

I know it sounds like lots to take in.. but once you start your  treatment you can cross the days off and it really does go quick..

I have my 6 month post treatment appointment on 2nd September.. and other than  a few little hiccups I'm more or less back to normal..

Remember be kind to yourself.. this journey is going to be hard.. but you will get through it

Xx

Hello IanLee,

Welcome to the forum although of course I’m sorry that you’ve had to join us. Receiving a cancer diagnosis is frightening and it can feel that your whole world has been turned on its head. It’s a lot to take in and particularly hard when you’ve had the diagnosis but don’t yet have a firm plan and start date. 

Many of us are familiar with the long journey to diagnosis as anal cancer is relatively rare. Thankfully the treatment has a really good success rate. I can see that you’ve already had lots of really good practical advice about preparing for treatment and what to expect. I finished treatment last November and there is no evidence of cancer. I do remember the weeks post diagnosis being the worst in terms of fear of the unknown and remember my head was spinning with worst case scenarios. 

This forum is a brilliant source of sound advice and support from so many wise and kind people who absolutely ‘ get it’.  Don’t hesitate to ask anything at all or just vent your feelings. 

xx

Hi everyone and thanks for replying to my message which has been so reassuring to me.

As a nurse myself and having never been a patient receiving treatment in a hospital, I now know what it's like being on the other side of the fence.

Im not so worried about treatment as such although im aware its not easy treatment im more scared it won't work.

My Dr didnt say a stage  of cancer he just said its caught early and chemo radio will be enough so I hope when I get to see oncology thry don't have a different plan.

I have a few questions:

I have a leakgr out of my bottom, not much judt enough to smudge my underwear, will this stop when I have finishes treatment. Not sure of its happened because of my biopsies or whether it's causing a slight incontinence or of its leakage from the lump?

I am a nurse and work agency so I only get paid for what I work. Chemo and radio will floor me but do you think I'll be able to work part time after three months. I have enough in savings for three months. I will be claiming stat sick also.

Did any of you claim pip whilst being off sick?

I know that ill be too exhausted to return full time but even just one shift a week when im strong enough to return would reallly help me out

Thanks everyone and I hope your day goes well xxxxx

Remember to stay positive xxxx

Hi again Ian L c2e27 , 

It sounds positive from what your Dr has said, hopefully you’ll get more information including staging etc., when you see your oncologist. I'll try & give my perspective on the questions you have.

Leakage - it’s possible that this could be due to your biopsies, it’s likely that you’ll suffer slight leakage for a short time after your treatment too, mine was generally after a bowel movement, there would only be a little as you’ve described, I  would wear a pad & carry spare pads with me for a little while after treatment then it stopped. 

Work - I went on sick leave whilst having treatment & was able to return to work on a phased return 5-6 weeks post treatment but this is a very individual thing. I was pretty wiped out on the days I worked even though most of my time at work was spent seated, the fatigue from the treatment was a prevalent side effect for me. I would just see how you go. 

PIP - I claimed PIP with the help of a benefit advisor from a cancer charity local to me, this claim ran for 2 years & was a huge relief financially. 

Hi  Ian L c2e27 

I didn’t have any leakage before treatment apart from a small amount immediately after the biopsy but I did have a lot of mucus during treatment and this could leak when taking a pee or getting rid of gas so I wore my wife’s Tena liners most of the time and made sure I sat down when taking a pee and then wiped. So I’d guess your leakage could increase once you start treatment.

Reactions to the treatment vary a lot it’s not difficult to find people on here who have really suffered with energy levels during treatment and some have recovered from this slowly, but this isn’t everyone as others including myself have worked through treatment and therefore there wasn’t a return to work period.

In my case apart from a slight dip in the first week when I was on both types of chemo and I’d started my new routine of very early morning starts to accommodate the new 3 hour round trip to get treatment I was able to do everything I’d been doing before treatment with a few minor adjustments such as taking extra recovery time when I’d been exercising and making sure I rested or took a nap when I did feel tired.

Working was only difficult because of the reduced available hours but the week after treatment had finished I was back to working longer hours without any issues.

I’m now 6 weeks post treatment and other than some urology issues everything is more or less back to normal, I’m back to doing the same volume and intensity of training as before my diet is the same and my bowels are better now than they have been for a couple of years so don’t write everything off just yet it really is an individual thing.

Hope it all works out for you.

Monty