HPV Cancer Resources

These are by far the most common HPV-caused cancers in men. The majority of these are oral cavity cancers, or oropharyngeal cancers. FYI the oropharynx is defined as part of the throat at the back of the mouth behind the oral cavity. It includes the back third of the tongue, the soft palate, the side and back walls of the throat, and the tonsils. Basic information about these cancers can be found on the websites of the American Cancer Society, the American Society for Clinical Oncology, and the National Cancer Institute.

The Oral Cancer Foundation, based in Newport Beach, CA is a non-profit group whose mission is to reduce the suffering and save lives of those with oral cancer through prevention, education, research, advocacy, and patient support activities. They have a patients support group and sponsor numerous events throughout the year.

The Head and Neck Cancer Alliance is based out of Charleston, SC and has a plethora of information about these cancers and their treatments. The website also features survivor stories, nutritional advice, and resources for patients as well as patients and caregivers. They maintain a patient, survivor, and caregiver Patient HelpLine if you need a professional and objective ear. Counselors and resource specialists are available to connect you to helpful resources or offer advice. The HelpLine is available in English or Spanish, Monday through Friday from 9am – 9pm Eastern. A live chat is also available. Call (866)-916-5107.

Support for People with Oral and Head and Neck Cancer (SPOHNC) is a US non-profit organization whose mission is dedicated to raising awareness and meeting the needs of oral and head and neck cancer patients through its resources and publications. SPOHNC offers over 100 chapters (support groups) throughout the US and a mentoring program of 225+ volunteers who are matched with newly diagnosed patients according to their diagnosis and treatment. Both programs are free, very successful, and beneficial to patients who are overwhelmed with a cancer diagnosis. Additionally, SPOHNC provides publications for newly diagnosed patients, two cookbooks with recipes submitted by survivors and their caregivers, and additional educational resources that can support one going through this disease. You can also hear from other head and neck cancer survivors sharing their stories of encouragement and hope and learning more about SPOHNC by going to their website at www.spohnc.org.

In the UK, Oracle Head and Neck Cancer UK has specifically focused on raising money for research on head and neck cancers. They have a number of patient stories on their website.

There’s a closed Facebook group of HPV+ Throat Cancer Survivors & Caregivers where those who have been treated offer up advice for those about to enter, or in the midst, of treatment. Lot’s of specific advice on what to eat and drink, combatting radiation side effects, and much more. It’s a great source of info from people who have actually experienced what you may be going through!

The website associated with Conquer: The Patient Voice magazine has featured stories about Head and Neck Cancer that you can access via that link. Conquer covers many types of cancer, not just head and neck cancer.

Another good resource is the Throat Cancer Foundation - It’s based in Scotland and was founded by oropharyngeal cancer survivor Jamie Rae. Read about how they successfully forced the UK government to give the HPV vaccine to boys (they were already paying for the vaccine for girls) by threatening to sue the government for sex discrimination.

Note: The criteria for defining the stages of oral cancers was changed in 2018 as part of the updating of the 8th edition of the cancer staging manual authored by the AJCC (American Joint Committee on Cancer). As a result, the staging of many of these cancer types was lowered. For example, what might have been characterized as a stage IV tumor a few years ago might now be characterized as a stage II or III tumor. You can read about this in this ASCO educational bulletin.

The Swallows is a patient and caregivers head and neck cancer support group charity started in 2010 that’s based in the UK, but with branches located in other parts of the world (notably Australia and New Zealand). They have a support line available 24/7 in the UK (+44 7504 725 059). The Charity is run by patients, caregivers, family and friends, so everyone understands the problems associated with a diagnosis of head and neck cancer.

Your Cancer Journey is a group based in Lancashire, UK. They share information about patients stories and host conferences specifically focused on head and neck cancers.

The Mouth Cancer Foundation is a charity dedicated to helping and supporting those suffering from or at risk of mouth cancer, throat cancer, and other head and neck cancers, as well as providing assistance and information on living with mouth cancer for families, friends and carers. The cancers are not limited to those caused by HPV and includes those associated with smoking and alcohol consumption. Founded in 2004 and based in Surrey, England.

The Head & Neck Cancer Society of Australia and New Zealand promotes quality care for cancer patients, organizes scientific meetings, and supports research on projects that are likely to improve the lives of patients. Also look at Head and Neck Cancer Support Aotearoa is a charitable trust established in 2020 to support New Zealand head and neck cancer patients and their whanau (extended family and others who provide emotional support) from diagnosis through to survivorship.

Beyond Five - The Face of Head and Neck Cancer is based in Australia, and their website has lots of information specifically focused on, as the name implies, head and neck cancer. Pages of info for patients are particularly strong, and there are pages for doctors and researchers as well.

In 2018, there were major changes in the American Joint Committee on Cancer Eighth Edition Cancer Staging Manual related to HPV+ head and neck cancers. You can see the new staging criteria here. I also recommend you check out if interested this Powerpoint presentation about the changes to head and neck cancer staging.

There was a review published in May, 2018 detailing New Therapies in Head and Neck Cancer, by Santuray et al Trends in Cancer, May 2018, Vol. 4, No. 5 https://doi.org/10.1016/j.trecan.2018.03.006

Made of More has a website for head and neck cancer patients and survivors with encouraging stories and resources.

Finally, for patients with head and neck cancers that have NOT responded completely to conventional treatments, a review was published in April 2019 that contains an extensive list of immunotherapy treatments focused on these cancers (63 separate treatment regimens). Some of these same therapies are also likely targeted at other tissues with HPV-caused tumors. Discuss this with your doctors if you’re possibly interested. You can find this list in Horton, J.D. et al Immune Evasion by Head and Neck Cancer: Foundations for Combination Therapy. Trends in Cancer, April 2019, Vol. 5, No. 4 https://doi.org/10.1016/j.trecan.2019.02.007. Unfortunately, this report is behind the paywall.

The American Head and Neck Society has an extensive page dedicated to survivorship issues. Here's a list of the topics you will find there for oral cancer patients:

Assessment/Management of Physical & Psychosocial Effects of Head & Neck Cancer
Body Image Concerns
Carotid Artery Stenosis
Cervical Dystonia
Cognitive Impairment in Cancer Survivorship
Depression in Patients with Head & Neck Cancer
Dysphagia, Aspiration and Stricture
Gastroesophageal Reflux Disease (GERD)
Hypothyroidism After Head & Neck Radiation
Issues with Sexuality & Intimacy After Head & Neck Surgery
Lymphedema
Neurosensory Disorders
Oral Complications & Dental Decay in Head & Neck Cancer Survivors
Osteoradionecrosis (ORN)
Radiation Fibrosis
Shoulder Dysfunction
Sleep Disturbance & Sleep Apnea
Surveillance Education
Taste – Change in Taste/Flavor & Nutrition
Tobacco Use in Cancer Survivorship
Xerostomia

Cervical cancer is by far much more common that the other two types of gynecological cancers caused by HPV. You can find info about causes and treatment of HPV-caused cervical cancer from the Fred Hutchinson Cancer Research Organization. You can also look at info from the American Cancer Society, the CDC, and the National Cancer Institute.

Information about vaginal cancer can be found on the websites of the American Cancer Society, the Cleveland Clinic, and the National Cancer Institute.

Information on vulvar cancer can be found on the websites of the American Cancer Society, the Foundation for Women’s Cancer, and the National Cancer Institute.

The National Cervical Cancer Coalition (a program of the American Sexual Health Association) is a non-profit organization based out of North Carolina and focused mostly on cervical cancer. According to their website, they “help women, family members and caregivers battle the personal issues related to cervical cancer and HPV and to advocate for cervical health in all women by promoting prevention through education about early vaccination, Pap testing and HPV testing when recommended.” They have chapters located mostly across the southern and eastern US. They are partnered with Global Initiative Against HPV and Cervical Cancer, which works throughout the developing world to reduce the disease burden from HPV and cervical cancers.

The Planned Parenthood website has info on HPV infections and the discussion is skewed towards gynecological cancers.

The American Association of Retired Persons (AARP) also has a page focused on HPV infection and prevention.

The US Department of Health and Human Services Office on Women’s Health has a page of FAQ focused on cervical cancer and HPV.

Click on this link to get the WHO fact sheet on HPV and cervical cancer.

You might be interesting in checking out Cervivor, a non-profit group that educates women about cervical cancer so they can be advocates in their communities. Contains individual stories about cervical cancer survivors.

Jo’s Cervical Cancer Trust is a UK charity with an extensive FAQ about HPV, and as the name implies, is primarily focused on cervical cancer.

Check out Team Maureen’s Massachusetts based campaign to end cervical cancer.

There’s a documentary “Someone You Love: The HPV Epidemic” about five women who’s lives were changed by a diagnosis of cervical cancer that may be of interest (I have not seen it). You can buy it, rent it, or even make arrangements to show it to a group. Follow the link for details.

Check out the resources on Maggie’s Cancer Links for info on vulvar, vaginal, and cervical cancer support and info groups.

Information on cancer of the penis (most cases of which are caused by HPV) can be found on the websites of the American Cancer Society, the National Cancer Institute, the UK’s National Health Service, and Cancer Research UK.

The HPV and Anal Cancer Foundation - This UK based organization, also known as the Anal Cancer Foundation, is a great source for basic information about the HPV virus. They provide a downloadable Anal Cancer Fact Sheet. This foundation also runs the NOMAN IS AN ISLAND program, which is a series of races that raise funds to end HPV and thereby prevent 5% of all cancers. You can also find information about anal cancer from the National Cancer Institute, the American Cancer Society, and the Mayo Clinic.

In the US, there is the Farrah Fawcett Foundation, which provides limited and indirect support for anal cancer patients. It was established in memory of the actress, who died in 2009 of anal cancer. There is also the HPV Alliance, which was launched in 2020 by anal cancer survivor Marcia Cross. It features Lilian Kreppel’s story and her fight against anal cancer.

Research and educational materials about anal cancer are being promoted by the International Anal Neoplasia Society. Their mission “is to provide a forum for individuals with a broad spectrum of background, viewpoints and geographic origin, an exchange of ideas and dissemination of knowledge regarding the pathogenesis, diagnosis, treatment and prevention of anal neoplasia.” The society is based out of Leesburg, Virginia.

This section includes information specifically focused on helping patients with HPV-caused cancers, or advocating for immunization to prevent those cancers.

HPV Immunization Education Project - a five year collaborative project between the National AHEC (Area Health Education Centers) office and the Centers for Disease Control & Prevention. The project is aimed at improving the national HPV immunization rates of 11 and 12 year old males and females through improved clinician training and understanding of the vaccine. They have posted a collection of Webinars that you can access online via this page.

The Kaiser Family Health Foundation (which is independent of Kaiser Permanente) has also produced a useful fact sheet about the HPV vaccine.

The National Foundation for Infectious Diseases has put forth a Call to Action for HPV Vaccination as a Public Health Priority.

The American Academy of Pediatrics has put together an HPV Champion Toolkit

The Centers for Disease Control and Prevention (the CDC) have developed a great resource for learning all about the virus, how it’s transmitted, and treatments. They’ve published a fact sheet for parents, which explains who should be vaccinated and when they should get the vaccine.

The American Cancer Society has lot’s of information on their website about HPV-caused cancers.

The Oral Cancer Foundation, based in Newport Beach, CA is a non-profit group whose mission is to reduce the suffering and save lives of those with oral cancer through prevention, education, research, advocacy, and patient support activities. They have a patients support group and sponsor numerous events throughout the year.

The Head and Neck Cancer Alliance is based out of Charleston, SC and has a plethora of information about these cancers and their treatments. The website also features survivor stories, nutritional advice, and resources for patients as well as patients and caregivers.

The website associated with Conquer: The Patient Voice magazine has featured stories about Head and Neck Cancer that you can access via that link. Conquer covers many types of cancer, not just head and neck cancer.

The National HPV Vaccination Roundtable - established by the American Cancer Society (ACS) and the Centers for Disease Control and Prevention (CDC) in 2014, this is a national coalition of public organizations, private organizations, voluntary organizations, and invited individuals dedicated to reducing the incidence of and mortality from HPV cancers in the U.S., through coordinated leadership and strategic planning. The goal of the HPV Roundtable is to reduce the number of HPV cancers and cervical precancerous lesions as well as non-cancer outcomes through (1) increased frequency and strength of clinician recommendations for HPV vaccine, (2) decreased missed opportunities for HPV vaccine administration, and (3) increased HPV vaccination rates at national and states levels, with a focus on girls and boys ages 11-12.

The HPV and Anal Cancer Foundation - This organization is based in both New York City as well as London. They are a great source for basic information about the HPV virus, and is not just focused on anal cancer. They have organized the NOMAN is an Island campaign, which organizes races to raise funds to defeat HPV. From their website “NOMAN aims to raise awareness about the HPV-related cancer epidemic in men and women, campaign for universal HPV vaccination, while challenging participants to extreme endurance races across the world.”

In the US, there is the Farrah Fawcett Foundation, which provides limited and indirect support for anal cancer patients. It was established in memory of the actress, who died in 2009 of anal cancer.

There is also the HPV Alliance, which was launched in 2020 by anal cancer survivor Marcia Cross. It features Lilian Kreppel’s story and her fight against anal cancer.

HPVandMe.org is a website with info about HPV and the oral cancers it causes. Its mission is to educate people and to provide support to HPV cancer patients and their caregivers. It was started by the wife of an HPV head and neck cancer survivor.

Research and educational materials about anal cancer are being promoted by the International Anal Neoplasia Society. Their mission “is to provide a forum for individuals with a broad spectrum of background, viewpoints and geographic origin, an exchange of ideas and dissemination of knowledge regarding the pathogenesis, diagnosis, treatment and prevention of anal neoplasia.” The society is based out of Leesburg, Virginia.

The Pathogen-Associated Malignancies Integrated Research Center at the Fred Hutchinson Cancer Research Center is focused on understanding how different bacteria and viruses (including HPV) cause human cancers.

The University of Washington has a dedicated HPV Research Group that has conducted a variety of studies on both HPV itself as well as HPV-associated cancers.

Information on vulvar cancer can be found on the websites of the American Cancer Society, the Foundation for Women’s Cancer, and the National Cancer Institute.

The National Cervical Cancer Coalition (a program of the American Sexual Health Association) is a non-profit organization based out of North Carolina and focused mostly on cervical cancer. According to their website, they “help women, family members and caregivers battle the personal issues related to cervical cancer and HPV and to advocate for cervical health in all women by promoting prevention through education about early vaccination, Pap testing and HPV testing when recommended.” They have chapters located mostly across the southern and eastern US. The website includes info on where women can go for free or low-cost Pap tests.They are partnered with Global Initiative Against HPV and Cervical Cancer, which works throughout the developing world to reduce the disease burden from HPV and cervical cancers.

The Planned Parenthood website has info on HPV infections and the discussion is skewed towards gynecological cancers.

The American Association of Retired Persons (AARP) also has a page focused on HPV infection and prevention.

The President’s Cancer Panel report (in 2018) HPV Vaccination for Cancer Prevention: Progress, Opportunities, and a Renewed Call to Action that has lots of information about US efforts to vaccinate both girls and boys against HPV. This report is a follow up to the 2012-2013 report Accelerating HPV Vaccine Uptake: Urgency for Action to Prevent Cancer.

The Prevent Cancer Foundation is running a Think About The Link campaign designed to educate the public about the how certain viruses are associated with cancer development. The Prevent Cancer Foundation is based out of Alexandria, VA.

HPV World is a free subscription newsletter about all things HPV; it also has a database of articles you can tap into. I do not know where in the world it’s located.

Prevent Cancer Foundation - Works to spread the word about, and support research on, preventable cancers, including those caused by HPV.

The Mouth Cancer Foundation is a charity dedicated to helping and supporting those suffering from or at risk of mouth cancer, throat cancer, and other head and neck cancers, as well as providing assistance and information on living with mouth cancer for families, friends and carers. The cancers are not limited to those caused by HPV and includes those associated with smoking and alcohol consumption. Founded in 2004 and based in Surrey, England.

Cancer Research UK provides a fact sheet on HPV-caused cancers.

Jo’s Cervical Cancer Trust is a UK charity with an extensive FAQ about HPV, and as the name implies, is primarily focused on cervical cancer.

Throat Cancer Foundation - Based in Scotland and founded by oropharyngeal cancer survivor Jamie Rae. Read about how they successfully forced the UK to give the HPV vaccine to boys by threatening to sue the government for sex discrimination.

The Oracle Head & Neck Cancer UK has specifically focused on raising money for research on head and neck cancers. They have a number of patient stories on their website.

The HPV and Anal Cancer Foundation - This UK based organization is a great source for basic information about the HPV virus. They provide a downloadable Anal Cancer Fact Sheet. This foundation also runs the NOMAN IS AN ISLAND program, which is a series of races that raise funds to end HPV and thereby prevent 5% of all cancers.

Your Cancer Journey is a group based in Lancashire, UK. They share information about patients stories and host conferences specifically focused on head and neck cancers.

Jabs for the Boys is a group (based in Warwickshire, UK) focused on getting the National Health Service to provide the HPV vaccine to boys (they currently only vaccinate girls). In 2018 their efforts were successful with a pledge from the government to start immunizing boys as well starting in the next few years. The organization is pushing to speed up that timeline. If you want to read about how they achieved this, read HOW THE CAMPAIGN FOR GENDER-NEUTRAL HPV VACCINATION WAS WON IN THE UK. International Journal of Men’s Social and Community Health. Vol. 2, No. 1 (2019) https://doi.org/10.22374/ijmsch.v2i1.18 FREE download.

The Swallows is a patient and caregivers head and neck cancer support group charity started in 2010 that’s based in the UK, but with branches located in other parts of the world (notably Australia and New Zealand). They have a support line available 24/7 in the UK (+44 7504 725 059). The Charity is run by patients, caregivers, family and friends, so everyone understands the problems associated with a diagnosis of head and neck cancer.

The HPV and Anal Cancer Foundation - This organization is based in both New York City as well as London. They are a great source for basic information about the HPV virus, and is not just focused on anal cancer. They have organized the NOMAN is an Island campaign, which organizes races to raise funds to defeat HPV. From their website “NOMAN aims to raise awareness about the HPV-related cancer epidemic in men and women, campaign for universal HPV vaccination, while challenging participants to extreme endurance races across the world.”

HPV Action - This is an organization that advocates for the HPV vaccine and led the fight in the UK to get the vaccine given to boys. It currently has 51 member organizations; click here to see the list.

The Canadian government has information on the HPV virus as well as the vaccine on the Government website. The Canadian Women’s Health Network had info as well, but it is closing down. Your next best bet is to go the the website of the society of Obstetricians and Gynaecologists of Canada. They have a page with lots of info about the virus, the vaccine, signs of infection, prevention, and treatment.

The HPV New Zealand website offers information to the public as well as health care professionals about the virus and the vaccine.

The New Zealand Ministry of Health also offers information about the virus as well as their free immunization program for those aged 9-26. So does the Immunisation Advisory Centre and the New Zealand Health Navigator website. You can also find info on the website of Seqirus, a company that sells the Gardasil 9 vaccine in NZ.

The Head & Neck Cancer Society of Australia and New Zealand promotes quality care for cancer patients, organizes scientific meetings, and supports research on projects that are likely to improve the lives of patients. Also look at Head and Neck Cancer Support Aotearoa is a charitable trust established in 2020 to support New Zealand head and neck cancer patients and their whanau (extended family and others who provide emotional support) from diagnosis through to survivorship.

Beyond Five - The Face of Head and Neck Cancer website has lots of information specifically focused on, as the name implies, head and neck cancer. Pages of info for patients are particularly strong, and there are pages for doctors and researchers as well.

In Australia, the Cancer Council maintains a website with information about the virus and their vaccination program. You can also find similar info on the Australian Government Department of Health website. As a result of their aggressive vaccination program for girls, Australia may become the first country to eradicate HPV-caused cervical cancers (according to the International Papillomavirus Society). You can read more about this in In Australia, Cervical Cancer Could Soon Be Eliminated

Ireland - Here’s information about the HPV vaccine being shared in Ireland by the Health Service Executive

Much of the resources below are English language descriptions of the spread of HPV in these countries, along with efforts to vaccinate the people there. I apologize for not having info in other languages available on this website.

Spain - Here’s a compilation of data about HPV infections in Spain, along with use of the vaccine

Germany - Here’s a compilation of data about HPV infections in Spain, along with use of the vaccine

France - Here’s a link to an article about the epidemiological and economic burden of potentially HPV-related cancers in France

The World Health Organization acts to educate people about HPV and the benefits of the vaccine. Click on this link to get the WHO fact sheet on HPV and cervical cancer.

The Global Alliance for Vaccines and Immunization (GAVI Alliance, created in 2000) strongly supports widespread implementation of vaccines to the developing world (including the HPV vaccine). It provides a number of subsidized vaccines in the poorest countries, thanks in part to tiered pricing by the manufacturers that drastically cuts the cost of each dose.

International Papillomavirus Society - The IPVS sponsors conferences and provides educational resources for the research and medical communities. Their initiative has designated March 4th as International HPV Awareness Day.

The HPV Information Centre, which was put together by the Catalan Institute of Oncology (ICO) and the International Agency for Research on Cancer (IARC), offers a number of downloadable reports and monographs, webcasts, newsletters, and much more.