Living with anal cancer can be a challenging experience. You or a loved one may have recently experienced an anal cancer diagnosis and probably have more information than you thought possible about something you'd never heard about before. It's ok if you're experiencing mixed emotions about things you've read or heard about your diagnosis. We're here to help no matter what! We have developed guides and information to help you through each stage of the process of living with anal cancer, from initial diagnosis through to managing the side effects of treatment
Having had personal experience with loved ones' anal cancer diagnoses, we know how scary and confusing it can be. Please Contact Us for assistance if you cannot find the answers to your questions, or if there is anything you would like to discuss in greater detail.
We hope this section of the website is useful for those who are newly diagnosed or facing an anal cancer diagnosis. It may also be helpful to 'thrivers' (our word for survivors) who are further into their anal cancer journey and want to understand more about their treatment, its side effects, and tips on how to manage them.
We know from personal experience that facing an anal cancer diagnosis can be a confusing and scary time. Get detailed tips and step-by-step information to help you manage this process.
FACING AN ANAL CANCER DIAGNOSIS
Every person experiences anal cancer differently. Our community is diverse, as are their experiences. Within this page we address some of the most frequent concerns that we hear from thrivers.
QUESTIONS TO ASK YOUR DOCTOR
If you have concerns that you experiencing anal cancer symptoms then you should see a doctor as soon as possible. We've compiled lists of suggested questions to help direct your conversation with a clinician. Depending on your health status and the nature of the appointment, some questions may be more applicable than others.
SIDE EFFECTS OF TREATMENT
The treatment for anal cancer can lead to side effects which may feel difficult to manage. We list some tips and techniques that may be helpful in alleviating some of these effects
Please note that if you are newly diagnosed, you may not be ready for all of the information contained here, especially if this is the first time you are hearing of them. If you do not think you are are fully prepared, or if you do not know, please have a friend or family member look through the information first. They can then help give you the most relevant information for your situation, or at least let you know which sections you should look at now and which you can save for later.
CHEMOTHERAPY SIDE EFFECTS
We discuss chemotherapy treatment for anal cancer in order to help you prepare for treatment, and to understand the potential effects of treatment on your body.
RADIATION SIDE EFFECTS
This section discusses radiation treatment for anal cancer in order to help you prepare for and after treatment, including follow-up care and specialists to include in your pre and post-treatment care team.
SURGERY SIDE EFFECTS
This page discusses what to expect during surgery for anal cancer, including colostomy surgeries, and the side effects that you may experience following treatment.
Each of our chemotherapy, radiation, and surgery pages contains information on long term side effects that you might experience after treatment, how to mitigate them, and how to build the care team that can help with your post-treatment journey.
Also, check out the anal cancer patient guidelines we created in collaboration with the National Comprehensive Cancer Network (NCCN). The guide covers anal cancer diagnosis and treatment, expected side effects, follow-up protocols, and survivorship.
These are the patient version of the professional treatment guidelines (you need to create an account to access, but it is free), which we recommend sharing with your medical team to ensure they are following the recommended treatment plans. The patient guide allows anal cancer thrivers and caregivers to have the same information as their doctor, and have the tools to make informed decisions about their care in collaboration with their medical teams.
Dietary changes and issues play a huge part in many people’s anal cancer journey. It’s important to maintain a healthy diet before and throughout treatment to provide your body the best chances at recovery, but many side effects make wanting to eat nutritiously—or at all—difficult. Certified oncology dietitians are trained professionals who may be able to help you determine an eating plan for every stage of your journey.
There is evidence the smoking may decrease the body’s immune response, and therefore the ability to fight HPV infection and therefore HPV-associated malignancies such as anal cancer. Learn more about reducing smoking and other ways to help prevent anal cancer.
Exercise may help with a myriad of anal cancer treatment side effects. From fatigue, to bone issues, to lymphedema, creating an appropriate exercise plan in coordination with your medical team can help prevent more serious side effects and lessen the impacts of treatment on your body.
Treatment for anal cancer unfortunately often comes with side effects—both physical and emotional—that can impact your sex life. There are fortunately several mitigation strategies and tools that you can use and experts that we suggest you consult that can help alleviate these effects and help you have as satisfying a sex life as possible.
VIRTUAL ANAL CANCER PATIENT CONFERENCE
In September 2021 the Anal Cancer Foundation convened the first virtual anal cancer patient conference. Experts spoke about anal cancer causes, treatments, emerging therapies, and how to mitigate the various side effects of chemoradiation. Anal Cancer Thriver and Activist Marcia Cross and Cervivor's Tamika Felder shared their own stories, guiding the audience in how to use their personal experiences to advance the fight against anal cancer.
The conference presentations are available on ACF's YouTube. Please view and share widely!
PATIENT P2P PROGRAM
We provide a free Peer-to-Peer support program that has helped anal cancer thrivers and their caregivers find compassionate support and companionship. This and similar programs may be helpful even if you are not ready to share your diagnosis with other friends and loved ones. You do not have to face your anal cancer diagnosis alone!
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.