Helene here @ABumRap from Canada.
i haven’t checked into here for a while but I was searching for your link to pass to a patient and saw you’d lost Louise’s old info.....I have a copy so here it is (see below)
Hugs to all
Helene...stage 1 SCC in 2010 and now 9yrs NED following surgery (no stoma! & NIGRO chemo-rad protocol.
EXCELLENT resource from the uk based Macmillan Nurses Anal Cancer support group....the Bumlanders:
The following represents an amalgam of the experiences of many, many of us before, during and after diagnosis and treatment. We hope you will find it helpful, and address the questions and concerns you are bound to have. If it doesn't then please post your question and someone will endeavour to assist as, in some shape or form, we have all been through this and come out the other side. Equally if you have some advice that is not covered, then please add it (especially if you are a male AC sufferer, as we don't have as many posts and yet this condition affects us in equal numbers).
What they don’t tell you and what you can do about it
This is intended to give an indication of some of the side effects and some feelings you might experience if you’re being tested for anal cancer, or if you have been diagnosed with it and are facing the gold-standard treatment of five and a half weeks of chemoradiotherapy. The chemo is given in weeks one and five, and the radiotherapy in short daily sessions Monday to Friday for the whole five and a half weeks. Please don’t be scared. Not everyone has all or any of these side effects or, if they do, they do not last as long for everyone. But we hope to address fears about whether your experiences are out of the ordinary, as it can be difficult to take in everything that you are told, and the medical profession do not necessarily tell you what can happen. Most importantly we want to share with you some tried and tested solutions to help alleviate some potential symptoms.
Anxiety, fear, anger, frustration - in fact a full range of emotional reactions - are entirely predictable whilst you wait to know what they have found, and what they are going to do about it. The following tests can also have some physical side effects:
•Rectal exams - you do have to get used to people putting a finger, and sometimes a small camera, up your bottom. It never ceases to be embarrassing, and it can be painful at the time, depending on your particular symptoms.
•Endoscopies (from the top down) and colonoscopies (from the bottom up) - these are, again, embarrassing but ask for sedation as it makes the process much easier, and you may find it blurs your memory so you’ll hardly remember it after the event. Your stomach may feel slightly sensitive for a day or two.
•Biopsies taken under general anaesthetic - hospitals rarely prepare you for the side effects. You can be constipated for several days afterwards and, when you do finally go, it can be extremely painful. Do not take over-the-counter laxatives as these just make the muscles work harder. You need something to soften the stools - e.g. Movicol. Try to avoid Co-codamol for the pain as it makes you constipated - instead try Paracetamol, plus a steroidal/anaesthetising ointment such as Uniroid to put up your bottom a few minutes before you have to go to the loo.
•Pathology and histology tests on biopsy samples - these are innately stressful because you have to wait for the results, and some health authorities only meet weekly to discuss particular cancers, so you won’t hear the outcome until a certain day of the week. Often not knowing and speculating is worse than the news itself. Always ask when and how you should expect to hear, and chase them up if the date passes so that you know if the timeline has changed.
•CT and MRI scans - unless lying very still is painful for you, you shouldn’t feel any discomfort during or after scans.
Chemotherapy - depending on your health authority you may receive this via a cannula in your hand, which needs to be monitored so you will be admitted to hospital, invariably for weeks 1 and 5 of your treatment. Others are able to stay at home with the chemo given in tablet form, or with a pump attached to a PICC line which goes in at the inner elbow. Some health authorities put you on a course of antibiotics to reduce the chances of getting an infection whilst your immune system is low. They will invariably want you to have a blood test before each of the two weeks of chemo to make sure you are healthy enough to undergo it, especially as your white cell count may be lower by the time of the 2nd phase.
Immediate effects of chemotherapy:
•Many anticipate nausea and sickness, but the meds are good these days so few seem to suffer for long. There are also a number of different types of anti-nausea drugs, so tell the hospital if the initial one doesn’t work.
•Food can taste odd and metallic and you may find your taste for certain foods changes. You need to keep drinking lots of fluid so you don't get dehydrated (as that can also make you feel nauseous), and keep eating little and often as you need fuel. Ginger contains a chemical that combats nausea so some find nibbling on ginger nut biscuits helps, plus non-alcoholic ginger beer, lemon and ginger tea or grated ginger in hot water. Aim for high lean protein but avoid too much fibre at this stage as you may get diarrhoea from the chemo. Check with your oncologist before taking any supplements as some vitamins are antioxidants, and therefore contraindicated with chemo, and there is a theory that turmeric might interfere with chemo.
•You may have neck, chest and arm pain and feel very weak, as if someone is sitting on your chest.
Radiotherapy - this will be given to you as an outpatient (unless you are in hospital anyway for chemo), so you will need to go to the hospital every Monday to Friday. The sessions themselves don’t last long but, depending on your journey time, they can prove pretty tiring. Some people are required to drink lots of water before each session so as to protect the bladder, but this depends on the precise location of the tumour. The length and precise target area of your radiotherapy blasts may change over the weeks, as the radiotherapists may wish to concentrate on a particular area in the latter stages. You may not be able to drive yourself throughout, for instance if you are on pain relief patches (which contain an opiate), or towards the end of the treatment if sitting has become painful.
Immediate effects of radiotherapy -
•Feelings of loss of dignity and control - primarily from undergoing numerous examinations of a highly personal nature, and lying on a daily basis in the radiotherapy room either face down with your bottom in the air, or on your back with your private parts in the air (your position depends on the location of your tumour). Some struggle at placing their lives in the hands of healthcare professionals, and losing control of their daily activities. If you are affected this way, remember that you are the patient. The hospital staff may recommend particular examinations or processes, but they only have authority to perform them if you say so. Ask what they propose to do at each stage, so that you can decide whether to accept or reject. For example, many health authorities assume that you do not want to receive copies of letters sent to your GP about you, so you need to tell them if you feel otherwise.
•Overwhelming fatigue - your body is being radiated daily so, as fast as it tries to heal itself, it receives another session. A vast amount of your energy is being devoted to healing and that doesn’t leave a lot left for anything else. The daily journeys to hospital can also seem to take over your whole day. Expect to rest a lot.
•Very sore burnt skin wherever you’ve been radiated - the pain invariably increases after treatment has finished as the radiotherapy continues to work for up to 14 days following the last session, and stays in your system for 9 months. Ask for stronger painkillers if necessary - you could be given a bottle of liquid morphine, and if you need something more powerful to deal with constant pain they can prescribe slow release morphine tablets as well. The ‘pain peak' tends to be between days 4 and 10 following the end of treatment. It can also sometimes come back a few months later. Despite the severity of the pain this is part of the healing process and so, once it reaches a certain stage, it can then heal quickly with new skin forming and any bleeding and weeping blisters lessening. Meantime keep to loose-fitting cotton or cotton jersey clothing with no elastic or seams anywhere near the inflamed skin. If it is really bad, do not be tempted to soak broken skin in a bath but try putting cotton cloths soaked in tepid water over the burns, forget underwear and lie on your back with your legs open to aerate the area, or on your side with a pillow between your knees. Burn creams such as Flamazine, or aloe vera, can help. It is best not to put the widely recommended E45 cream on any areas where the skin has broken down or blisters have burnt as this will form a barrier and therefore slow down the healing process. Continue to moisturise skin after it has healed to prevent your new, very tight skin from getting irritated.
•Back bottom problems -
- diarrhoea and mucus, and considerable pain when pooing. Some find a portable bidet filled with warm water and placed on the loo helps, or a plastic washing up bowl on the floor if your balance isn't so good. It eases the pain to poo under water, you won’t need to use loo paper, and you can tip the contents down the loo
- constipation, which can be even more painful than the other problem. If you are taking morphine for pain relief, this slows everything down so you are likely to become constipated. Some find that taking one or two sachets a day of a laxative like Movicol will keep everything moving satisfactorily
- try using a squirty water bottle to wash yourself, or Epaderm or E45 shower cream
- a hairdryer on a cool setting is good for drying yourself as even the softest of towels can be too harsh.
•Front bottom problems - considerable sharp pain when peeing i.e. cystitis-like symptoms. Try peeing in warm water or while you shower. A more user-friendly option is to keep a squirty 500ml water bottle by your loo and to take one everywhere with you. Fill it with tepid (not freezing cold !!) water and, immediately before you start weeing, squirt water onto your front bottom. It dilutes the wee before it hits your sore skin and so counteracts the burning sensation. Some also find that drinking cranberry juice helps reduce the acidity of your wee (as with cystitis). Do get the hospital to check you haven’t developed a urinary tract infection.
•Ladies’ middle bottom or minnie-moo problems (gentlemen, look away now please) -
- the menopause will arrive if you haven’t already been through it, so hot flushes day and night, and therefore poor sleep patterns
- very sore, red, inflamed and swollen lady bits - try oat baths (a cup of oatmeal in the foot of cut-off tights hung under the tap as you fill the bath, squeeze it out into the water and then soak in it). You need to keep the labia skin well hydrated and moist - if it's not too sore to touch, try Flamazine or Cream 7, or coconut oil which is anti bacterial
- shrinkage of the entrance, width and length of your lady bits, for which they will give you a dilator with different size adjustments to help stretch the area once your treatment has finished. Take it slowly and do not expect things to improve quickly - it won’t be comfortable, certainly not enjoyable, but stop and try another day if it is painful. Some try instead with a small vibrator or start off with just a finger, or forget the whole idea.
•For the gentlemen (ladies - give them some privacy please) - very sore manly parts. Try oat baths (a cup of oatmeal in the foot of cut-off tights hung under the tap as you fill the bath, squeeze it out into the water and then soak in it). You need to keep everything well hydrated and moist - try Flamazine or Cream 7.
Longer term side effects of chemoradiotherapy
You may feel emotionally fragile, tearful, depressed, apathetic, angry, and even have feelings of an anti-climax - especially as you can feel you are on your own and not having a daily session with supportive radiographers etc. You may also find yourself grieving for the loss of a certain lifestyle as a result of the treatment, and worried about your chances of resuming a normal, or any, sex life. Bear in mid that your body has been burnt by radiation, poisoned by the chemo drugs, and, depending on your circumstances, you have possibly received more strong opiate painkillers than ever before. So some of the following may hit you at any time, from soon after your treatment ends, to months or even a couple of years later, and they can come and go with considerable intervals of time in between:
•Mental state - You may feel less resilient, with less stamina, and it is common to blame any feelings of poor health on the treatment, or a fear that the C has returned.
•Persistent bowel problems - These can change from one extreme to the other and so you may need to juggle between drugs for diarrhoea and a laxative. Many recommend a healthy diet to stabilize your tum, so not too much processed food, fat, sugar or take-aways, and some also become less tolerant of gluten and dairy. You may experience (again):
- diarrhoea - made worse by too much fruit, veg and other fibre, often worst in the mornings. Codeine phosphate or Loperamide can help, and keeping to bland food
- constipation - if pooing is painful anyway the added complication of pressure will make it feel worse. It can be relieved by eating more fruit and veg and drinking lots of water, and taking a sachet or two a day of a laxative such as Movicol
- sore or itchy bottom due to diarrhoea, or caused by a bowel movement following a bout of constipation - try an anti inflammatory like Ibuprofen, plus a steroidal ointment such as Uniroid for about five days
- abdominal pains, wind, a constantly aching bum and / or a feeling that you need to go to the loo but nothing happens
- incontinence, leakage or a feeling of not being fully in control.
Remember that your sphincter muscles have been radiated and are still re-building themselves, so they may not be as strong as before, or working as they should. Incontinence pads can make you feel a little safer as getting out and about is important for your recovery, but only when you feel like it.
•Bladder problems - A burning sensation when peeing i.e. cystitis-like symptoms. Some need a catheter for a while as it obviates the need to use your urethra to wee.
•Sensitive skin - Wherever you have had radiotherapy, especially where the skin is thinner anyway around your anus and perineum, will continue to be fragile. Your skin may break and bleed easily, especially if irritated by mucus from diarrhoea. Some find they bruise and bleed more easily generally. Keep slathering on aqueous cream, E45 or Vaseline.
•Joint pain - Some develop stiffness in the pelvis, hips and/or knees, and get swollen or ‘wonky’ legs. This is one that may continue to get worse for some time after treatment, despite attempts to alleviate it with exercise and pain relief. It may not even appear until some time after treatment ends, as the effects work their way through your muscles and bones. It may indicate a reduction in bone density due to the radiation, especially in women, so look out for signs of osteoporosis and ideally ask your GP to refer you for a bone density scan. If your density has been reduced you can help restore it with vitamin D and calcium supplements, and by resistance exercises e.g. - see www.youtube.com/watch. Gentle swimming can also help ease the stiffness, and the fact of doing some exercise may give you some energy.
•Forgetfulness or feeling generally ‘out-of-it’ - This can be a reaction to the drugs, whether the chemo or the painkillers you have had. It should wear off eventually.
•Post-treatment appointment anxiety - Almost everyone suffers high anxiety and is tempted to cancel an appointment sometimes in case the C has come back. The best medicine is to get on the Anal Cancer Group discussion forum and tell us, because you will get masses of support. We have either all been there, or are going through the same experience as you right now.
It's Ellen here from the Community team. I'm just writing to see if there's any other posts besides this one that you'd like to be 'pinned' to the top of your discussions page?
Are there any threads that you signpost to a lot, or think are particularly useful?
Let me know and if there's anything else you'd like to pin to the top of the page, we can do so.
Macmillan Community Team
Yes I can think of a couple.
Can the 'McMillan Guide to Anal Cancer’ booklet PDF be pinned?
there’s also a document about the PLATO trial but I need to find it first.
Thanks for this. I'm afraid we can only pin discussion threads for now, but that doesn't mean we can't get creative! If you'd like to, you can start a new discussion with the relevant links/information and then I can pin that to the top. Would that work?
Macmillan Community Team
Hello, I’m hopefully going to be starting treatment very soon but reading this sounds really scary. Right now I don’t feel like I’ll be strong enough mentally and physically to get through this. Are these normal feelings.
Hi there Marie (Mom of five),
Please don’t worry the feelings that you’re having are completely natural, those of us that didn’t feel this way before starting this treatment are few & far between. I remember the feelings of dread when my oncologist mentioned the chemoradiotherapy I was terrified!! I felt exactly as you describe, I didn’t think I was strong enough. You’ll not necessarily suffer all of the side effects mentioned, I didn’t, also they’re cumulative so they don’t all appear at once & you learn to deal with each one as it arises. You’ll be advised by your radiology team & oncologist regarding creams & medication to use throughout treatment. Please don’t be afraid to ask any questions you have we’re an open, supportive bunch & you’ll find lots of help & advice here whenever you need it.
You wouldn’t have thought I was brave if you’d seen me just before I begun my treatment, I was a jibbering wreck. I wish I’d known then what I know now! I’m 2 years post treatment now NED & so thankful that I was offered this chance. I’m living my life pretty much as I was before any of this happened & so grateful for every day. You’ll find the strength to get through this, you’re stronger than you think.
Hi Marie, like Sarah, I had my treatment 2 years ago from now. I was terrified! I hadn’t found this site by then, & had no idea what was ahead of me. I had to live away from home as well, as the hospital was too far away for me to travel.
As Sarah says, not everyone has identical reactions to the treatment, in fact I was pretty good for most of mine. I started feeling worse at about 4 weeks. It isn’t fun, but we all find the strength. You will have a lot of support from the wonderful staff at the hospital. You will get through it, which is a far better option than not having the treatment! I wrote a silly blog called blogfromuranus.com. It’s a bit difficult to negotiate around the dates, but it will tell you about my treatment trip & what happens. It does contain some strong language, as they say on TV!
It all feels like a distant dream now, although I still have to dash to the toilet sometimes! I have lived a very full life & it hasn’t stopped me from doing anything. Good Luck!