In case it's of any help to those newly diagnosed, here's my personal experience - though everyone's is different, and hopefully without my little blip through my ignorance/subsequent neglect in hospital the first week!
November 2009
I was referred by my GP on a Thursday in May 2007, and saw the Consultant Colorectal Surgeon the following Tuesday. I was convinced it was IBS or a bad case of piles, I had no idea it was cancer. As I lay on the couch, she examined me and announced ‘there is definitely a sizeable tumour’. I went into meltdown, all I could think of was that I needed to live for my daughter, then only 12 – I knew nothing about cancer, to me it meant death. I had a biopsy the following week and was telephoned by the colorectal nurse specialist to advise me that it was squamous cell anal carcinoma. I was home alone, and as a single mum spent the next two months very isolated. I waited from mid-May to 23rd July 2007 to start my treatment, when I had to get myself to Mount Vernon (an hours drive each way) for my 5 days stay, and subsequently every day for 28 days of radiotherapy.
Remember I'm not medical, just a patient sharing the little I know about squamous cell anal cancer and the chemo-radiotherapy treatment. The thing you will get fed up with hearing is that everyone reacts differently, both to the tumour and to the treatment. The best thing you can do is write everything down in a note book and take it with you when you see the consultant. I also had a nurse I could phone whenever I had a worry (a research nurse as I was on a clinical trial- ACT II) over the 6 weeks of the treatment. However, after that there was only the GP for support between monthly clinics with the Consultant. I was referred twice by nursing staff to Macmillan for support, as my support network was limited (during the treatment and for some time after my family found it hard to support me and my daughter) and I was having difficulties, but was turned down as my ‘prognosis was too good’ and they only treated palliative/terminal cases in my area. The one good thing that did happen was, after phoning a local breast cancer support group helpline, they have supported me ever since – and I am now helping them evolve to full inclusion for all women with any cancer.
You will be given a ‘stage’ of T1 to T4, and an M no for spread, and an N number for any lymph nodes affected, following the results of your MRI. T1 is less then 2 cm, T2 is less then 5 cm, T3 is 5cm+ , any lymph node or other spread will give higher than T3, with N# and M# to show the spread.
For me, the tumour (T3, 5cm+ no spread) caused a blockage, restricting the canal and therefore all its muscles, fibres and blood supply. I had very painful, nervy sensations and very swollen piles inside and outside. My consultant advised against local anaesthetic creams as he preferred to leave the site well alone, especially with radiotherapy. I did not need surgery, or a stoma, either before or after the treatment. I survived on Movicol to make it easier to ‘go’ before treatment, but I had to always be near a loo and continual feelings of needing to go meant the only relief was to lie down.
Usual chemo is a combination of Mitomycin and 5FU. I was given Cisplatin in stead of Mitomycin, together with 5FU. This is a combination used in the States and being trialled here - the Clinical Trial I was on is ACT II. I had four hours of Cisplatin and 4 x 24 hour bags of 5FU. This was given in hospital intravenously, continuously for nearly 5 days. Cisplatin does make you sicky, but they give you anti sickness tablets. I had an adverse reaction to the anti sickness, Metaclopramide, which made my first week very difficult and I was left very weak. My hair only thinned with the chemo and the sickness wore off after a week or so.
On the day it starts, if it's like mine, you will be connected to the chemo as soon as they have blood test results and usually 'protocol' (you will hear that too quite a bit, it's jargon for doing things by the book) means radiotherapy won't start until later in the day, once the chemo starts
If you stay in hospital, the main point is - with the number of staff available they are stretched, it is up to you to voice your needs to get help, I learnt this the hard way - my second stay in hospital was much better than the first. The first I was in a side room, largely ignored which was not good - it will be better in the main ward where the nurses can see you if you have to stay in. Some people are given a pump/bum bag for their chemo at home, attending daily during the weekdays for radiotherapy and monitoring.
Radiotherapy begins on day one of your chemo, and continues for 28 days for 5 1/2 weeks. When you are having the treatment you need to have cleaned the area with plain water at least an hour beforehand. Any creams or residues of soap can cause burning. After each radiation, apply large amounts of aqueous cream (or the cream the radiologist gives you) to the whole area. When, after about two weeks, the skin began to become sore I switched to Emulsifying Ointment (available in tub from Boots) which is very pure, thicker than aqueous and does not sting - you can wash with it under the bath water. Side effects of radio - gradual redness of area, loss of pubic hair, eventual lifting of upper layers of skin, possible blister/ulcers, peeling leaving raw and sore areas: coat these with emulsifying ointment in the bath and pat dry very gently. The skin will continue to peel until about two weeks after treatment, keep up the moisturising with the emulsifier, or aqueous where skin has healed. Some people are offered a silver based cream. I would avoid steroids if at all possible as the skin grows back very thin.
You may be able to drive for the first three to four weeks, but should arrange for help in driving if at all possible for when the fatigue sets in, and very sore too. You will want to go ‘carefree’ under a long skirt (or boxer shorts for the boys, and a cricket box) I should think!. The first week of radiotherapy is likely to be the most dramatic - I found. By the 4th day I had diarrhoea, mixed with blood clots - I was told this was very likely the actual tumour breaking down. Hoorah for that - but quite alarming and I began to feel quite weak - at the same time as the effects of the chemo put me off eating too. Radiotherapy makes you very tired - after each dose I managed a drink and a slice of toast (lived on toast and cornflakes, and Ensure build-up drinks from the GP throughout) then a few hours sleep every day, as an outpatient too. You might want to stock up on Tesco Freestyle pads or similar incontinence pads, which protected me in the car, or out shoppin,g from 'accidents' - also sitting on a towel was reassuring and softer. Once the tumour begins to shrink, it will feel sore inside but although not pleasant when going to the loo (sometimes described as going with glass shards), it will be easier. When it begins to burn when you wee, keep a jar of vaseline next to the loo and smear it on thickly all round before going - it really does help. Also helps at night when things get a bit hot. You can also ask the hospital for some gel pads that you put in the fridge, marvellous for night time or during naps in bed.
Chemo after a few days makes you tired, and feel sick - it puts you off your food. I drank plenty of water, but still was dehydrated at the end of the week and hurt myself when I blacked out - if you feel weak and faint, ask them to check if you need saline for dehydration. The GP is the one for the rest of your needs as you will find the hospital treats you for chemo and radio, but it's very much up to you to find help for the side-effects and general well being. My GP gave me a prescription for paracetamol, ibuprofen, and Ensure build ups. Later, post-treatment depression set in – when all hospital visits become much less and family and friends think you should be okay – and she prescribed anti-depressants. I didn’t want them but they have helped over this first 18 months.
I went back to work last June, 9 months after finish of treatment, 6 months after 'no evidence' - firstly for 18 hours a week. I slept a lot in the afternoons at first! This June, 2009, I increased to 30 hours a week, got promotion, and haven't looked back. I manage any side effects, recognising when I need to be sure to be near a loo, and limiting my diet to fairly bland food. I don't eat much in public due to potential urgent need and/or gas(!) but have found that pelvic exercise, since treatment ended, and Pilates has helped enormously.
Next check up in January - I'm now on 6 monthly clinics after two years.
Always keeping positive, keeping any anxieties down that surface when some of the symptoms get worse (rich food, red wine, don't help!).
Looking forward to chatting with some of the 'new' people on here
- very unusual to find so many in the Anal Cancer forum.
I made sure my daughter, now 15, has had the HPV Cervical Cancer inoculation - apparently Anal Cancer is linked to HPV as well as
cervical.
