Getting through treatment
Survivorship plan
Once you are through your treatment and are on the path to healing and recovery it is time to put a survivorship plan in place with your specialist team. The purpose of the plan is to ensure you have all the information and support you need to help you thrive post-cancer.
1. Ongoing tests
Talk to your specialists about what your follow up test and exams will look like so that you can make plans and be prepared. Guidelines suggest a physical exam and digital rectal exam 8 weeks after completing treatment. If complete remission is found this is when the cancer is no longer detectable, then a digital rectal exam every 3-6 months for 5 years, inguinal node palpation every 3-6 months for 5 years and annual imaging for 3 years.
2. Bowel health
Most people are left with some degree of changed bowel function which could range from urgency, incontinence, diarrhoea, abdominal cramps, food intolerances and bleeding. There are a variety of specialists and strategies that can help - it’s important to talk about these issues and get the appropriate support.
3. Bone health
The bones in your pelvic area may be affected by radiation treatment. It’s important that your bone health is monitored with DEXA scans and any necessary treatment is offered. Bone density is also helped by regular weight bearing exercise and a diet with sufficient calcium and protein, as well as vitamin D from the sun or a supplement.
4. Pelvic floor
Pelvic floor dysfunction may be experienced as pelvic pain, stiffness in the hips, incontinence of the bladder or bowel, and sexual dysfunction. Pelvic floor physiotherapists are experts in helping manage these issues and this should be part of your survivorship plan.
5. Sexual health
Radiation causes the vagina to be less stretchy, less able to lubricate and sometimes develop significant scarring. Vaginas need to be used to maintain their functionality for sex, so you will need to either use vaginal dilators twice a week or be having regular penetrative sex. Most people also will benefit from a vaginal moisturising cream or vaginal oestrogen cream. Caring for your vagina is important, as it significantly reduces the chance your vagina will become too narrow to have smears or to use for sex.
Men often have issues around erectile difficulties, inability to orgasm, and pain. The exact cause is unknown but may be due to scarring around the blood vessels in the pelvis. Sometimes pills such as Cialis or Viagra may help, for others more invasive options are needed. There are specialists in men's health who will be able to advise such as urologists and men’s health specialists.
Anal sex is sometimes difficult after radiation to the anus as the skin is not able to stretch easily. Once again, it could be useful to see a sex therapist who may be able to help.
6. HIV
Fortunately, the survival of people with anal cancer with HIV who are on anti-retro viral medication is comparable to people with anal cancer who do not have HIV. Typically, doctors will monitor the levels of anti-retro viral medications more closely and sometimes offer antibiotics to prevent infection.
7. Psychological health
There is no doubting the trauma of anal cancer and the psychological toll that results. Many people find they experience low mood or feelings of isolation when their treatment ends, as well as a lack of energy. It is also normal to feel anxious ahead of your follow-up scans. Talk to your loved ones about your anxieties and let them support you. Be kind to yourself and schedule some activities that bring you joy to try and distract yourself from the wait for the results. Ask when the results will be available, and how they will be delivered, so you have an understanding of the timing involved.
If you’re feeling overwhelmed, or would like strategies to cope with anxiety, you can reach out to the Cancer Society for psychological support.
Fertility after anal cancer
The treatment for anal cancer will compromise both mens’ and women’s fertility. The average age of diagnosis is 60 when fertility is not an issue for most, but younger people who may want children in the future will need to be prepared.
For women, radiation treatment has an impact on ovaries, causing a loss of eggs. This means that most women will become menopausal during treatment. The radiation may also impact the uterus, making it less able to maintain a pregnancy. Some women will choose to have a cycle of egg or embryo freezing prior to starting treatment. For some, surrogacy will be required.
For men, radiation will impact sperm production. Banking sperm prior to treatment is an option for those wishing to have children.
Keeping healthy
It’s normal to want to do everything you can to lower the risk of your cancer coming back. People diagnosed with anal cancer are more likely to also get another cancer also caused by HPV. The other cancers caused by HPV include cervical, vaginal, vulval, penile and head and neck cancers. Currently there are no guidelines for surveillance for these other cancers for people who have been treated for anal cancer. If you develop anal cancer before age 50, you have an increased risk of non-Hodgkin's lymphoma.
At present, there is no good evidence that there is anything specifically that you can do to reduce the risk for anal cancer recurrence. Nevertheless, having a healthy lifestyle will reduce your chances of getting other cancers so stopping smoking, maintaining a healthy weight, getting regular exercise, eating a diet rich in fruit and vegetables and unprocessed food, and minimising alcohol consumption is recommended.
You should also perform the recommended cancer screening, such as regular mammograms (every two years for women 45 and older), and cervical smears (every three years), bowel cancer screening and prostate screening.
What if I have been told that there is no further treatment for my anal cancer?
This is a really hard place to be in. Other services are able to offer better care for you, and you should talk to your GP about available support.