I'm 56 y/o & I've been HIV+ for 25 years. In the year 2008, I was diagnosed with "NIA 3, Intense Dysplasia in the anal canal". I get an anoscopy every year to follow up. The last one reports Dysplasia with signs of HPV infection.
Can I use the HPV vaccine? Can I be treated with Carbon Dioxide Laser to decrease recurrence? What are the real posibilities of getting anal cancer?
The following information was included in some of my past answers, plus an additional update on anal cancer.
In the United States, the rate for anal cancer in the general population is 1 case per 100,000 people; among HIV-negative men who have sex with men the rate increases to 35 cases per 100,000 people.
But in HIV-positive gay and bisexual men the rate is estimated to be between 75 to 115 cases per 100,000 people. It seems to affect those of us who have lived longer with HIV, have had detectable HIV viral load for a few years, have had anal warts (debatable) and/or had lower CD4 cells in our HIV infection.
I have been getting high resolution anoscopies every two years or so n the past 6 years. Cancerous cells are very difficult to see with a naked eye, so doctors spray vinegar in your rectum and shine infrared light in it (this is called high resolution anoscopy or HRA). Cancerous cells shine differently than healthy cells, so doctors are able to distinguish them in the presence of vinegar and the light. Very few doctors are trained in that procedure (UCSF trains doctors in a 2 day program). My first anoscopy showed precancerous lesions which were removed by infrared coagulation (IRC).
There are several treatments for anal dysplasia, as described in this great paper written by Dr Joel Palefsky, one of the top experts in the field:
Evaluation and Management of Anal Intraepithelial Neoplasia in HIV-Negative and HIV-Positive Men Who Have Sex with Men
In this paper, Dr Palefsky et say:
"For larger lesions, ablative therapies including IRC, CO2 laser, and electrocautery are usually warranted (note: electrocautery is a surgical technique which involves introducing high frequency current to a specific area of the body in order to remove unwanted tissue, seal off blood vessels, or to create a surgical incision.) IRC is an office-based procedure and offers an advantage over electrocautery because no smoke is created. Several retrospective studies and a phase 1 safety study indicate that IRC is well tolerated and is about 65% effective at treating an individual HGAIN lesion in HIV-positive MSM, with even better efficacy (81% for a single lesion) in HIV-negative MSM. One retrospective study conducted primarily in MSM used CO2 laser alone or in combination with surgical excision and/or imiquimod (a cream) and found that 65% of patients were completely disease free at 12 months. Because of the use of multiple treatment modalities, it is difficult to infer the independent effect of CO2 laser. No published studies have described the efficacy of electrocautery."
The American Cancer Society says that a great deal of research is now under way to learn how HPV might cause anal cancer. There is good evidence that HPV causes many anal squamous cell carcinomas. More than 100 subtypes of HPV have been found. The subtype known as HPV-16 is often found in squamous cell carcinoma and is also found in some anal warts. Another type, HPV-18, is found less often. Most anal warts are caused by HPV-6 and HPV-11. Warts containing HPV-6 or HPV-11 are much less likely to become cancerous than those containing HPV-16.
Some reports show that many HIV+ long term survivors have been exposed to many HPV genotypes, including the oncogenic (cancer producing) ones.
There are really no guidelines yet about how to diagnose and treat anal dysplasia. The University of California in San Francisco is leading the way in studying different methods of detection. They are researching three forms of tests: an anal Pap smear (where the doctor swabs an area of the anus to remove surface cells), an high resolution anoscopy (where a doctor uses a special microscope to look at the anus), and a biopsy (where the doctor scrapes away an area of the anus to remove surface cells).
Only the New York State Department of Health has guidelines that address this issue, although no long term studies have proven if the procedures recommended really prevent anal cancer. But I am happy that they have already considered what many progressive doctors are using around the United States.
Click on this link and go down to the anal dysplasia section:
State of New York guidelines
A 5 year study is currently being designed by Dr Polefsky and his team to study the long term effect of performing high resolution anoscopies (HRA) and infrared coagulation (IRC) in HIV+ men and women with dysplasia versus not performing the IRC to determine if IRC is an effective way to prevent progression to cancer. I do not think it has been funded yet, so I will update about this study in the future.
Many doctors are not waiting for that data and are referring their HIV + patients to colon-rectal surgeons every two years or so to get high resolution anoscopies. Others just use anal pap smears and rectal digital exams (with a finger) as a first step to determine if an anoscopy is justified. These simple tests can detect precancerous tissue before they may become a problem. They are removed with infrared coagulation. Biopsies are usually taken prior to the removal of the suspect tissue to determine it is low grade or high grade dysplasia.
Currently, most insurance companies and Medicare pay for HRA and IRC. But it is unfortunate that patients without insurance on ADAP programs do not have access to trained colon rectal physicians that could follow them up proactively with high resolution anoscopies.
The currently approved HPV quadrivalent (types 6, 11, 16, and 18) vaccine (Guardasil) is licensed for prevention of cervical, vulvar, and vaginal cancer and the associated precancerous lesions in females aged 9 to 26 years and for the prevention of genital warts in males and females aged 9 to 26 years. It is also approved for the prevention in anal cancer in males or females 9 to 26 years of age. So, if anyone who does not belong to that age group wants to get vaccinated, that person would pay close to $400 (total) for three required shots. But for many of us, it may not be worth it.
In conference calls that I have attended in the past, the maker of Guardasil (Merck) told us that they do not believe that their vaccine really works for most HIV positive long term survivors who have been exposed to several of the cancer producing HPV types. Unfortunately, we currently do not have easy access to blood tests that determine which HPV types we have in our blood.
The HPV tests on the market are only used to help screen for cervical cancer. There is no general test for men or women to check one's overall "HPV status," nor is there an HPV test to find HPV on the genitals or in the mouth or throat. But HPV usually goes away on its own, without causing health problems. So an HPV infection that is found today will most likely not be there a year or two from now.
There have been barriers to diagnosing anal cancer. People do not usually tell their doctors about anal issues, and many doctors do not check their patients' butts in physical exams (not even to do digital prostate exams!).
As I mentioned before, pap smears and digital anal exams are used in some clinics that have no access to HRA to attempt to detect anal dysplasia since they are easy to do. Preliminary results showed that anal Pap smears accurately detected pre-cancerous skin cells about 70% of the time. The higher the grade of disease, the more likely Pap smears could detect these skin cells. They were also more accurate when there were more pre-cancerous cells present. Anal Pap smears were also better able to find disease in HIV-positive than HIV-negative people (76% vs. 59%). In addition, anal Pap smears were more likely to find disease when CD4s were below 400, and when two or more areas were swabbed for cells (86%) as opposed to one or more (69%). So, using anal Pap smears still leaves room for errors. I personally do not trust anal pap smears since there may be false negative results.
Below is the list of providers trained in HRA from the currently offline UCSF Anal Cancer Info website. I've been asked to post this with the caveat that it is not up-do-date, but does include providers who have been trained in HRA by UCSF. They are working to get their website back up ASAP (The stae of California is beset by budget cuts and staff layoff/furloughs, so nothing is happening quickly)
HRA Providers by Location:
Richard Hillman, MD Internal Medicine University of Sydney +61-2-8382-3707
Robert Bolan, MD Family Medicine LA Gay and Lesbian Center (323) 993-7500
Alen Voskanian, MD Family Medicine UCLA (310) 584-6625
David Bitar, MD Colorectal Surgeon East Bay AIDS Center Please call EBAC at (510) 869-8400 and ask to see Dr. Bitar for HRA; or call his office at (510) 845-4638.
Joe Dahman, NP Primary Care and HIV Desert AIDS Project (760) 323-2118
John Stansell, MD Internal Medicine and Pulmonary Disease (760) 327-2277
Edward Cachay, MD Internal Medicine and Infectious Diseases UCSD (619) 543-3995
Joseph Caperna, MD Internal Medicine UCSD (619) 543-3995
Christopher Mathews, MD Internal Medicine UCSD (619) 543-3995
J. Michael Berry, MD Oncologist UCSF (415) 353-7100
Naomi Jay, NP Womenâs Health UCSF (415) 353-7100
Joel Palefsky, MD Internal Medicine and Infectious Diseases UCSF (415) 353-7100
Mary Rubin, NP Womenâs Health UCSF (415) 353-7100
David Gershan, MD Family Medicine San Mateo County Health Department
Eric Boyette, NP Infectious Diseases Grady Health System No self-referral; patient's primary must provide written referral through the Infectious Diseases Program to see Eric for HRA.
James Tom Barrett, MD Family Practice Howard Brown Health Center (773) 388-8660
Monique Tello, MD Internal Medicine and Womens Health Johns Hopkins School of Medicine Please call the Johns Hopkins Moore Clinic at (410) 955-1725 and ask to see Dr. Tello in the Anal Dysplasia Clinic for HRA.
Daniel Cohen, MD Infectious Diseases Fenway Community Health Center Please call Fenway Community Health at (617) 927-6000 and ask for the HPV Clinic; patients primary must provide referral.
Jerry Feuer, PA Primary Care Fenway Community Health Center Please call Fenway Community Health at (617) 927-6000 and ask for the HPV Clinic; patient's primary must provide referral.
Elizabeth Stier, MD Obstetrics and Gynecology Boston Medical Center (617) 414-6375
Jason Baker, MD Infectious Diseases University of Minnesota Hennepin County Medical Center (612) 873-2700
Robert Madoff, MD Colorectal Surgeon University of Minnesota (612) 625-3615
James Ogilvie, MD Colorectal Surgeon University of Minnesota (612) 625-3615
Diane Harper, MD Gynecologist and Family Medicine Dartmouth College (603) 448-5886
NEW YORK CITY
Renaldo Barrios, NP Adult Nurse Practitioner Callen-Lorde Community Health Center (212) 271-7145
Stephen Goldstone, MD Surgeon Mt. Sinai School of Medicine (212) 242-6500
Jeff Huyett, NP Primary Care Callen-Lorde Community Health Center (212) 271-7200
Gal Mayer, MD Internal Medicine Callen-Lorde Community Health Center (212) 271-7200
Theresa Schwartz, NP HIV Specialist Patients with private insurance: Rochester Colon Rectal Surgeons PC (585) 244-5670 Patients with Medicaid: Strong Memorial Hospital (585) 275-5129
Jill Tinmouth, MD Gastroenterologist Sunnybrook Health Sciences Centre Please call Marie Sano at (416) 340-4800 x 8172
Alex Ferenczy, MD Gynecological Pathologist SMBD â" Jewish General Hospital (514) 340-7521
Stephen Weis, DO Internal Medicine Tarrant County Health Department (817) 321-4850
Elizabeth Chiao, MD Infectious Diseases Baylor College of Medicine (713) 873-4115
Eric Haas, MD Colorectal Surgeon Colorectal Surgery Associates (713) 790-0600
You may want to read more about this topic here (print it out for your doctor): http://www.theaidsreader.com/display/article/1145619/1409865
You can have your primary care or colon rectal doctor contact the UCSF anal dysplasia clinic here (they do physician trainings):
Dysplasia Clinic 1600 Divisadero St., Fourth Floor San Francisco CA, 94143 Phone (415) 353-7100 Fax (415) 353-429
I live in Houston and used to travel to New York once a year for an anoscopy, but gladly there is now a physician trained in my city. If you live in a place where there is no colon rectal doctors who perform this procedure, have your doctor contact local physicians to see if any of them is interested in being trained at the University of California- San Francisco. They provide a two day training session. Their web site is http://www.ucsfhealth.org/adult/special/d/12748.html
Doctors that are trained on this issue will be better equipped to help people as they age with HIV, so it is a good thing to do right now while we wait for more data that will support future guidelines on this important cancer that is showing up as one of the highest incidence in HIV.
So, in conclusion, talk to your colon rectal doctor about the pros and cons of CO2 laser versus IRC or other methods. Show him/her Dr Polefsky report mentioned above to make sure he is familiar with it. Also, show him/her the guidelines published by the NY Health Department. And please let us know what you decide after that discussion.
I hope this helps!