Standard treatment for anal cancer stages I-III usually involves a combined use of chemotherapy and radiation. Chemotherapy alone is the standard treatment for stage IV anal cancer, although radiation is sometimes used as well. Radiation for recurrent anal cancer may focus on areas where the cancer has progressed.
We will discuss the short-term side effects and long-term side effects, and at the end of the page we provide suggestions for how to build your care team and who should be included. The care team after treatment is important for managing side effects after anal cancer treatment. While there is no standard follow-up care team, we find that pelvic floor therapists, sex therapists and dietitians all play a role in improving thrivers’ lives after radiation. Please note that the short-term side effects listed on this page may apply to all radiation to varying degrees.
Your radiation oncologist will create a tailored plan for you, taking into account the positioning and size of the cancer, in addition to your general health history. This plan may be adjusted throughout treatment to achieve the best results and take into account any side effects you may be experiencing.
The area receiving the radiation is called the radiotherapy field. Your treatment team will aim to limit radiation only to the affected cancer cells, although healthy cells may be exposed to the same amount of radiation. The effects of radiation vary from person to person and it is difficult to predict the extent of the side effects you will experience. Side effects are also cumulative, and often get worse as treatment progresses. They can persist and even worsen for weeks after treatment has ended. Being aware of these possibilities is key to managing these effects and ensuring that your life after cancer is as healthy and happy as possible.
We have found this information is not available all in one place and so have brought it all together here for our thriver community. We have combined best practices, common experiences and advice after speaking to anal cancer thrivers, oncologists and cancer institutions across the United States, as well as holding education forums, in the hope of providing comprehensive and useful resources for present and future thrivers and caretakers. This page is still very much a work in progress as we strive to spread the word about the importance of providing thrivers the best and most compassionate care possible. We thank you for your input and welcome any questions or additions and changes that you can suggest. Please Contact Us if you feel something is missing or out of date, or if you are confused about anything on these pages.
Please note that this page should not be used as a substitute for medical advice or information. Be sure to talk to your care team about what you are experiencing as they can make suggestions for management and adjustments to your treatment program.
SHORT-TERM SIDE EFFECTS
The short-term side effects listed here tend to improve after radiation treatment stops. Please see the section below this one for long-term side effects.
Radiation treatment can cause sore, reddish skin at the treatment area, much like sunburn. Darkening of the skin, peeling, dryness and flaking are also common reactions. The severity of this reaction is very individual and difficult to predict.
This reaction also comes on slowly – you won’t experience skin changes right away and the effects will be cumulative. Be aware that the ‘exit site’ of the radiation beam, i.e. the opposite side of your body from the treatment site, may become sore as well.
There are steps that can be taken to help soothe this side effect. Your team is best suited to give you advice on managing and preventing these skin reactions, and will let you know what types of creams or other topical treatments are acceptable to use during therapy. Let your radiation team know about the soreness you are experiencing. If it becomes too severe, they may decide to take a break from radiation for a few days to allow you to recover.
Memorial Sloan Kettering has some useful tips and tricks for managing the skin side effects of radiation for all cancers, including specific recommendations here.
Given that the area affected by radiation includes the anus, you may experience difficulty and pain when passing stool. Your team may prescribe you painkillers to help manage these issues. Wearing loose clothing/underwear (boxers, even for women!) and using a soft cushion to sit on while you heal may also reduce the effects of treatment on this area.
Women may also experience vaginal irritation and discharge. Lubricating creams, moisturisers, and ointments can help ameliorate these effects. Make sure you speak to your nurse about these side effects so that he or she can help get you relief faster.
TIREDNESS AND FATIGUE
Radiation treatment may make you feel tired and weak. This is an effect of your body repairing the damage done to healthy cells. It is likely to creep up on you during the course of treatment, so even if you don’t feel tired at the beginning of your course, you might by the end. This fatigue can persist for up to a few months after you have finished treatment.
Try and rest when you need to, but also strive to fit in light exercise into your day as well. Research has shown that regularly scheduling physical activity, including even short walks, can help manage symptoms of fatigue.
Feeling sick is another side effect of radiation. Your treatment team may be able to prescribe medication to combat this, so be sure to speak with them about it. Nausea may impact your appetite, but it is imperative that you continue to drink enough fluids throughout your treatment. Your doctor may recommend high calorie meal replacement drinks to help ensure you are getting enough calories even if you feel you are unable to eat. These are easy to acquire without needing a prescription.
A certified oncology dietitian can also help with special dietary needs and restrictions that arise as a result of cancer and treatment side effects. Some cancer centres employ certified oncology dietitians, who typically see people only during treatment and may have the acronym ‘CSO’ after their name. You can also ask your doctor or insurance provider for a referral. If referred to an outside dietitian, ask if they are aware of the specific needs of people undergoing cancer treatment.
Finally, please see this helpful resource, which was presented by a dietitian at a recent panel discussion facilitated by the Foundation at the International Anal Neoplasia Society with advice for nutrition during and after treatment.
DIARRHoEA AND BOWEL FUNCTION
Frequent bowel movements and even diarrhoea are quite common after radiotherapy for anal cancer. Radiotherapy causes the anus and rectum to become irritated and inflamed, resulting in less effective ‘holding’ of the stool. You may also experience bowel incontinence. This is often frustrating to experience in combination with sensitive skin around the anus, which makes bowel movements painful. Your treatment team may be able to prescribe painkillers as well as medication to reduce anal and rectal irritation. This usually calms down 2-3 weeks after treatment.
If diarrhoea occurs, your treatment team can prescribe medication to help manage it. It is extremely important to stay very hydrated. Diet also has an impact on bowel movements. A low fibre diet may also help lower the frequency of diarrhoea episodes. See our suggestions for diet in the Bowel Function Section in Long-Term Side Effects, below.
Given its location, radiotherapy for anal cancer can affect the bladder as well. Your bladder may become irritated, making it feel as though you have an infection. This can lead to the sensation that you have to pass urine even if your bladder is empty. You may also feel pain when passing urine.
Drinking plenty of water will help alleviate symptoms, and cranberry juice has been known to help as well. Be sure to tell your doctor if the sensation persists after treatment has stopped, in case you actually do have an infection.
After I was finished I found the real recovery was just beginning. The effects of the radiation included stricture of the vaginal canal, unrelenting fatigue that lasted for over two years, and a medical community that was lacking in support and follow up of these issues.
I found a new gynecologist who specialized in oncological gynecology and through his PA who is female, found someone who understood my issues and was well versed in helping me. She did my first pelvic exam and instructed me on how to make intercourse less painful. This turned out to be not that difficult, and with her help and my own persistence, I soon returned to almost as good as new.
Many thrivers experience vaginal and anal stenosis (narrowing and/or loss of flexibility of the vaginal and anal passages) after treatment, but for some these changes begin during treatment. Please refer to the sections on anal and vaginal stenosis management below in our Long-Term Side Effects Section. Your physician may be able to prescribe you vaginal dilators during treatment if you find you are experiencing symptoms of stenosis. Your doctor may already integrate vaginal dilators into your radiation treatment program. In many cases, when vaginal dilators are prescribed or recommended, it is through a discussion with a member of the oncology nursing staff. Dilators may also be recommended once treatment has ended. See Long-Term Side Effects for more information.
YOUR SEX LIFE
If your doctor clears you for sexual activity during treatment (and you want to have it!), please be aware of the importance of not becoming pregnant, or getting someone else pregnant, while undergoing radiation therapy. If these issues are of concern to you, please refer to our section on Fertility below for information on preserving female and male fertility and why pregnancy must be avoided during treatment.
LONG-TERM SIDE EFFECTS
Long-term side effects can begin anywhere from a few months to a few years after treatment is complete. As with all other aspects of anal cancer treatment, these effects are very individual and it is impossible to predict who will and will not experience them.
Long-term side effects tend to be more severe with longer and stronger courses of radiation treatment. Your treatment team will work with you to try and minimise all side effects. Be sure to discuss your experiences with them so that they can adjust treatment as needed.
Damaged tissue can cause scar tissue to form in the anus in men and women, and in the vagina in women. This can cause problems with functioning in these areas, especially when using the toilet or engaging in sexual activities. Vaginal moisturisers (which are different than lubricants) can help combat dryness and tightness in the vaginal area. These specially formulated preparations are typically applied at night and help improve conditions in vaginal skin by reducing itching, dryness and irritation. Lubrication aids are recommended when engaging in sexual activity.
PELVIC FLOOR DYSFUNCTION
In women, the pelvic floor consists of the muscles and connective tissues that support the bladder, vagina, uterus and rectum. In men, it is the supportive structures of the bladder, rectum and other pelvic organs. The nerves that carry signals from the brain to these organs are in both men and women.
Radiation therapies can cause damage or weakening of this region in both men and women. Major side effects of radiation therapy to the pelvic region include:
- Urinary dysfunction, including lack of bladder control that causes leakage.
- Bowel dysfunction, causing stool leakage and incontinence.
- Pelvic organ prolapse, a condition in women in which the vaginal walls protrude out of the vaginal opening.
- Vaginal stenosis.
- Anal stenosis.
- Erectile dysfunction.
We explain these issues and their management in greater detail below.
Managing pelvic floor dysfunction can take several forms:
- Physical therapy can help you learn to relax your muscles and coordinate your movement in the pelvic floor area. See our three-part series on the benefits and function of physical therapy here.
- Behavioural changes may help. This could mean avoiding pushing or straining when using the toilet. Learning how to relax the pelvic floor muscles is advised, and yoga and warm baths can also assist in relaxing this area.
- Low dose muscle relaxants may be prescribed by your doctor, so please speak to your medical team to see if this is a viable option for you.
Anal stenosis is the narrowing of the anal canal as a result of fibrosis and blood supply restriction to the tissues of the anal canal after radiation. Anal stenosis can result in constipation, painful bowel movements, rectal bleeding and narrow stools that break apart and are difficult to pass. Use of stool softeners and/or fibre supplements may help make bowel movements easier.
Your doctor may refer you to a physical therapist who can work with you to slowly open the canal over time, including with the use of a dilator. This regimen may start with practitioner-assisted dilation followed by regular dilation by the patient. Daily dilation is possible, either digital (using the fingers) or mechanical (using a small dilator), in cases of mild or moderate stenosis. Speak with your care team about what may be best for you.
Physical therapy can also help maintain the openness of the anal canal. Physical therapists can help you with manual therapy, and possibly start you on a tailored dilator program.
Moderate to severe anal stenosis may require additional interventions. Please discuss your options with your care team if anal stenosis is affecting you.
Vaginal stenosis is a narrowing and shortening of the vagina, caused by buildup of scar tissue, drying and thinning of vaginal tissue and a loss of vaginal lubrication. Vaginal stenosis is a common side effect for women who are being treated with chemoradiation. Contact often becomes painful, including during manual sexual stimulation and vaginal intercourse.
Vaginal stenosis can be managed through routine use of a dilator to stretch out the walls of the vagina. Vaginal moisturisers, listed in the Scar Tissue Section, above, can also be used to increase vaginal hydration.
Clinicians who recommend dilators generally advise a series of dilators that start small and increase in size to begin expanding the scar tissue. After a period of time, and consistent use of the dilators, vaginal manual stimulation and intercourse may become possible. Once you’re ready, clinicians recommend slowly initiating any penetrative intimate contact. People who are experiencing these side effects often explore other forms of sexual intimacy as well. Lubrication aides may be used to reduce friction during sexual activity. Vaginal moisturisers will help combat dryness over time. Speak with your doctor or nurse oncology team for recommendations.
As with anal stenosis, physical therapy is often helpful if you are experiencing vaginal stenosis. A practitioner may be able to help alleviate discomfort not only through manual therapy, but also by helping to get you on a personalised dilator program. Both physical and psychological improvements have been noted though the use of physical therapy for pelvic floor, vaginal and sexual issues related to radiation therapy for cancer treatment. Please speak with your care team for references and other advice about physical therapists.
Dr. Palandrani also presented at our educational forum, Living and Thriving After Treatment for Anal Cancer. You can view the full video here. Dr. Palandrani’s presentation begins at 35:39.
Radiation in the pelvic area can cause erectile dysfunction in males, although no one is completely clear on why this occurs. It is possible that it is due to nerve damage, changes to blood flow or decreased testosterone. What is known, however, is that greater doses of radiation received, and over larger areas, are correlated with a greater likelihood of experiencing sexual side effects.
Men who smoke, have a history of heart disease, diabetes or high blood pressure may also be at greater risk of experiencing erectile dysfunction as a result of radiation therapy. Experiencing these conditions may have caused some damage to the body, which is then exacerbated by the radiation.
Men also may experience some pain during ejaculation after undergoing radiation therapy, but this usually decreases and disappears as time goes on.
Macmillan Cancer Support has a resource section that discusses treatments to help you manage erectile dysfunction in greater depth. You may also wish to speak with your physical therapist to explore the full range of options for erectile dysfunction treatment.
Radiation can affect fertility in both men and women, particularly given the site of the radiation administered for anal cancer.
In men, radiation at high doses can kill sperm-producing stem cells and affect sperm production. Radiation can also affect the sperm itself so it is advisable that men speak with their doctor before starting a pregnancy (or if they are at risk of starting one) during treatment.
In women, ovaries can become damaged during radiation therapy. The amount of radiation absorbed by the ovaries will determine fertility after treatment. High doses can destroy up to all of a woman’s eggs, resulting in total infertility or early menopause. One option to help preserve fertility is called ‘ovarian transposition’, which involves moving the ovaries out of the field of radiation. If, when the appropriate time comes, it is not possible to become pregnant naturally with the ovaries in this new spot, you may need to have them moved again, or look into in vitro fertilisation (IVF). The decision to undertake this procedure depends on a variety of factors, inclusive of the age, pregnancy desires, medical condition and prognosis. A woman’s medical team should inform her about the risks and benefits, as well as the feasibility of such a procedure.
If the uterus is affected by radiation, scarring may limit blood flow and flexibility. This can cause a pregnancy to be at a higher risk of miscarriage, low-birth weight and premature delivery. As radiation can harm a growing fetus, it is critical to avoid becoming pregnant until treatment is complete. The American Cancer Society has listed a number of options that may be available to preserve your fertility. Please be sure to speak with your doctor about ways to manage pregnancy and fertility, if these are issues that affect you.
I was committed to beating cancer and not allowing it to define me at a time in my life when I should be raising my beautiful daughter and enjoying my life to the fullest. For me, that included a surgery that moved my ovaries to under my rib cage so that they would be out of the radiation field. This relocation gave me a 60% chance of not going through menopause due to the radiation. My doctors pointed out that ovary transposition is typically done in cervical and ovarian cancer patients who are under 40. My team also said that since anal cancer typically strikes women who are post-menopausal, this surgery was rare for my cancer.
While many bowel issues related to radiation therapy tend to resolve on the completion of treatment, some effects can persist long term, and may not even appear until weeks to months after therapy has stopped. Please speak with your doctors for advice and suggestions on how to manage any bowel issues you may be experiencing.
Radiation can cause what is known as radiation enteritis, or damage to the small intestine. Only 5-15% of people treated with abdominal radiation (or radiation in the general abdominal area) will develop chronic enteritis. However, radiation effects can persist in a greater number of people for months to years after the completion of therapy before subsiding. Symptoms of enteritis include nausea, vomiting, watery diarrhoea, and abdominal cramping. Longer-term symptoms include bloody diarrhea, a persistent feeling of needing to pass stool, weight loss and abdominal pain.
In addition to enteritis, radiation may also cause damage to the rectum and anus resulting in something called proctitis, which often causes rectal pain, bleeding, incontinence and discharge.
There is not a lot of information available about how many anal cancer thrivers develop radiation enteritis, although from our experience talking to thrivers, caretakers, and medical providers, a high proportion of thrivers who undergo radiation therapy will develop at least some of the symptoms mentioned above.
Your doctor may be able to prescribe medications to help manage many of the symptoms of enteritis, such as anti-diarrhoeal and pain medicines. In addition, dietary changes may help alleviate some of the symptoms.
In general, the recommended diet is bland and low-fibre. One specific diet recommended is the BRAT (Bananas, Rice, Applesauce, Toast) diet. Ask your doctor about the specifics, and if this diet is right for you. Your doctor may be able to refer you to a dietitian specialising in gastrointestinal issues to look into options with you further.
Recommendations from the National Cancer Institute include the following:
- A lactose-restricted diet. Damage to the intestines can result in the loss of essential enzymes needed to digest milk and dairy products that are not lactose-free.
- Adjust your fibre consumption. A lower fibre diet may help reduce symptoms during this time.
- Avoid caffeine.
- Avoid fatty, rich foods.
- Avoid fresh and dried fruits and vegetables.
- Avoid whole-grain breads and cereals.
- Avoid strong spices and herbs.
- Avoid prune juice.
See more helpful dietary tips from the National Cancer Institute here.
Additionally, see this helpful resource for advice on nutrition and eating during and after treatment, which was presented at the International Anal Neoplasia Society scientific conference by a dietitian at a recent panel discussion facilitated by the Foundation.
Other management solutions for gastrointestinal complaints resulting from radiation therapy may include the use of probiotics, oral steroids and bowel rest:
- Probiotics are supplements that contain beneficial microorganisms that can help modify gut microflora to improve conditions such as diarrhoea induced by radiation and its effects.
- Steroids can be used as anti-inflammatory agents, helping to reduce pain and discomfort.
- Bowel rest basically means resetting your diet temporarily: you will start with a few days of clear liquids and gradually add back soft foods. A more normal diet is resumed over a period of a few weeks.
It may be helpful to keep a food journal, inclusive of how food has been prepared and your reaction to it, in order to determine what you can and cannot tolerate.
Finally, some thrivers find that utilising adult nappies or pads can help manage some of the symptoms of radiation proctitis, such as bowel incontinence or rectal bleeding.
There are emerging studies that a procedure called hyperbaric oxygen therapy (HBOT) can be helpful in soothing soft tissue injury (inclusive of stenosis) caused by radiation, specifically proctitis. This procedure involves breathing pure oxygen while sitting inside a sealed, pressurised chamber. Essentially, the purpose of the therapy is to increase oxygen flow to areas which may be deprived for various reasons. While in the chamber you are expected to breathe normally. Sessions can last from thirty minutes to two hours and you may experience ear popping or other mild discomfort. Speak to your care team about this procedure and if it can be helpful for your skin.
Typically with higher doses of radiation, the effects are greater. Some clinicians recommend temporary or permanent ostomies to prevent infection and provide pain relief.
If infection is a concern, an ostomy may be required during radiation to temporarily divert waste from parts of the pelvic region injured by radiation and to help avoid the pain of going to the bathroom during treatment. In women, fistulas (abnormal openings) can develop between the vaginal wall and the surrounding organs as a result of radiation. Men can also get fistulas after radiation treatment. A temporary ostomy will divert the fecal stream away from the damaged area and help prevent and manage side effects associated with injury or fistula.
Ostomies are not common for anal cancer thrivers, but do occur. The United Ostomy Association of America has compiled resources on ostomy management here. You may also want to visit our page on Living with the Side Effects of Surgery which contains more information on ostomies, their side effects and management.
EFFECTS ON THE BONES
Radiation often weakens the bones of the affected area, namely the pelvis and hips. This can increase the risk of fractures, particularly in older women and women who had symptoms of osteoporosis prior to treatment.
Management of bone weakening and associated complications includes maintenance of a healthy weight, as well as any type of weight-bearing physical activity (walking, dancing, climbing stairs etc.). Speak with your doctor to help create an appropriate exercise plan based on your needs, abilities and fitness level. This type of activity places stress on bones. It may seem counter-intuitive to perform these exercises as an antidote to thinning bones, but the stress can trigger the body to make more bone cells, encouraging growth. A physical therapist may be a good resource for helping you build a safe and effective program to counteract a decline in bone density, and to help you avoid placing excessive stress on vulnerable areas.
Calcium and vitamin D supplements can also be used. It is important to consult with your physician team before beginning any supplement or exercise regimen.
Lymphedema, or swelling, may appear in the legs if radiation is given to the lymph nodes in the groin. This swelling is caused by a buildup of lymph fluid in the tissues that are right under the skin. Lymphedema caused by radiation can appear months to years after treatment is over, and can range from mild to severe and uncomfortable. This type of build-up can prevent cells from receiving proper nutrition, affect wound healing, and can lead to infections.
Call your nurse or doctor if you start to notice any of the following signs of lymphedema:
- Parts of your body such as the legs or genitals feeling full/heavy.
- Your skin feels tight or hard or looks red.
- New aching, tingling or discomfort in the area of radiation that wasn’t there before.
- Less movement or flexibility in joints near the radiation area.
- Tightness of clothes or accessories in one particular area, such as in one leg, even though you have not gained weight.
Swelling, soreness, tightness or redness could be a sign of an infection or blood clot and will require treatment right away. Be sure to call your doctor if you have a temperature of 100.5°F or more, or if you have a new pain in the area with an unknown cause.
Getting regular checkups, reporting changes, maintaining a healthy weight and getting enough exercise, with the guidance of a medical professional, are all recommended for people at risk of lymphedema. Compression garments can help prevent or reduce swelling and should also be used with the guidance of a medical professional.
Physical therapy can help here, too. Therapists can help determine the combination of manual and compression therapy, including lymphatic drainage, which works for you. These techniques can promote fluid clearance and allow for more free and comfortable movement. There are physical therapists who specialise in alleviating lymphedema. Speak with your care team for more information. For a link to a pelvic floor therapist, please see our Medical Resources page.
Finally, the American Cancer Society also has a useful document on understanding and managing lymphedema here.
TIREDNESS AND FATIGUE
Tiredness and fatigue can persist for many months after you have concluded radiation therapy. It is important for you to keep your doctors informed of how you are feeling so that they can monitor your body to make sure your tiredness is not being caused by other, more severe, problems. Keeping your doctors updated can also help them determine the best treatments for your fatigue. A diary or journal keeping track of how you feel at certain times, and detailing what you were doing around the time the fatigue starts may help determine which activities to avoid or limit.
Some suggested questions for your doctor are:
- What is causing this fatigue?
- Is there anything that can help me control my fatigue?
- Can I exercise? What is a recommended amount?
- Is there anything that I should NOT be doing?
- Is there anything I can eat to give me more energy?
- Is my tiredness normal?
- How long will my fatigue last?
- Where can I get some help and support?
Cancer Research UK has a great list of tips and tricks for managing fatigue related to cancer as an effect of radiation therapy, and fatigue caused by other cancer-related reasons as well.
By the end of the six weeks of radiation I could count radiation burns, radiation-induced stiffness, vaginal stenosis, fatigue, and a kind of radiation cystitis that most patients describe as ‘peeing razor blades’. Some of these effects slowly disappeared but others such as fatigue and pelvic stiffness remain. Four months later, I am still sleeping nine hours a night – to ease the fatigue — and doing stretching exercises to help with the stiffness.
BUILDING YOUR CARE TEAM
In addition to your medical team, who will take care of your diagnosis, medications and treatments, we have found that thrivers benefit from seeking out a range of other specialists to help them through their cancer and recovery. Your medical care team may not know or share all of these suggestions with you, and you may not actually need all of these services. Unfortunately, there is no standard protocol for creating a care team after anal cancer treatment.
However, through our conversations with thrivers and medical providers at different institutions, we have found that the specialists below can help improve an anal cancer thriver’s quality of life after treatment. It is best to find people within these specialties who have additional certification in oncology or have worked with cancer patients before. Some cancer centres employ these professionals on site. Discuss the best options for you with your medical team. If you find you are having an issue with a certain aspect of your recovery, you may find some of these specialists to be useful.
Dietitians can help you design an eating plan that you can tolerate during and after treatment, and that still provides you the best nutrition during this time. Some cancer centers employ certified oncology dietitians who may have the acronym ‘CSO’ after their name. You can also ask your doctor or insurance provider for a referral.
Intimacy may become more difficult, or take a different form during and after treatment for anal cancer. A sex therapist who specialises in working with cancer patients will help you rediscover sex after a cancer diagnosis.
You can find out more about the type of work these specialists do and the side effects they help to mitigate through our educational forums, which are available here:
Dr. Jeanne Carter, Head of Female Sexual Medicine and Women’s Health programs: Long-Term Side-Effects After Treatment for Anal Cancer
Dr. Allison Palandrani, Branch Director, Pelvic Health and Rehabilitation Center: Physical Therapy After Treatment for Anal Cancer (a three-part series)