Anal Cancer - Should I be concerned?
Nelson, I know you are a long term survivor. What have you done to make sure you do not have anal cancer? I am so afraid of it since I read we have like 10 times the rate.
Like you, i am also very concerned about anal cancer since I have been living with HIV for over 25 years.
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.
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!).
Anal cancer is caused by the HPV virus, to which most of us have been exposed. 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.
There are really no guidelines yet about how to test or diagnose anal cancer. 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 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).
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 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. 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.
My insurance has paid for most of the procedure and the biopsies required.
Below is the list of providers changed 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) In the meantime, CATIE has a great anal dysplasia info sheet with good basic info
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
Hopefully, we will have national guidelines on this issue within the next 5 years when studies proof that early diagnosis make a difference. But may patients like me are not waiting for that to happen.
I hope this helps!