How should I be screened?

Belle17

I am a female in her early sixties. I had my first colonoscopy about a year ago. Only one 1 cm polyp found, in my anus near the verge. The doctor biopsied the polyp but didn’t remove it because it was located near hemriodial tissue. The biosopy showed it was a condyloma (genital wart). The doctor told me to come in ten years for another colonscopy, but to have the condyloma removed by a surgeon under general anesthesia. When the condyloma was removed and biopsed, it was found to be an in situ carcinoma (premagligent). Needless to say this was a total shock because I had never heard of any connection between HPV and anal cancer.

So now I apparently need follow-up screening, but it has really difficult to find out exactly what screening I need.

The coleorectal surgeon said I had to have a colonscopy every three years for the rest of my life. That doesn’t make much sense to me because HPV apparently only infects cells in the anus, not in the colon. In retrospect, I don’t think the surgeon was the best doctor. In my pre-operative appointment, he told me that I could wait one or two years to have the condyloma removed which could have been disastrous. He also never told me to make a post-operative appointment or that there would be any biopsy.

So I consulted the doctor who performed my colonscopy. He told me that he had just read a paper indicating that patients like me, should be screened every six months and then at increasing intervals. He told me to make an appointment for a sigmoidoscopy in six months and that I would not have to do a prep. When I made the appointment, I was told I had to do a prep even though I carefully explained why I making the appointment. This caused me to wonder if this doctor had much experience screening patients like myself. I decided to go ahead with the screening, but ask about how much experience he had screening patients like myself during the appointment.

My sigmoidoscopy exam lasted only 2 to 3 minutes. I know this because I was not sedated. The doctor said everything looked great and that I should have another screening in 1 to 2 years, but didn’t specify whether it would be a colonoscopy or a sigmoidoscopy. He then disappeared before I had a chance to ask any questions. The real kicker was that in the folder that I given to take home, there was a paper which stated that “all the risks and benefits of the procedure had been discussed with me”, “the reasons for not giving me a sedative had been discussed with me” and “my previous reactions to anathesia had been discussed with me”. Maybe all these discussions took place, but not in front of me.

At this point I realized that I had been in denial about the whole problem and I needed to find better information. I haven’t found much information on the internet about screening for someone with my situation, although I did find this forum. After reading on this forum, it’s become clear to me that the screening is a trivial inconvenience compared to the treatment for anal cancer. But I’m still confused about screening. I may be overreacting because I am anxious to avoid any recurrence and I can’t find any clear screening guidelines for patients like me. I wonder how much my surgeon and colonoscopy doctor actually know much about HPV/anal cancer screening, and whether I am just being kept in the hospital network because I have good insurance. The UCSF website on anal HPV infections showed that there are doctors in my area who specialize in this problem. It seems to me that I should have been referred to one of these doctors. It’s also unclear how much screening my insurance will pay for. If my doctors who specialize in gastrointestinal problems, seem so unknowledgeable about HPV/anal cancer screening, how easy will it be to get a straight answer from an insurance customer service representative about how often my insurance will pay for screening?

My question is for the members of this forum who have completed treatment. I realize that my situation is different from yours, but this seems to be one place I might be able to get information on how patients are actually screened for reoccurrences. What type of screening procedure do you undergo, to determine whether there are changes/new lesions in anal cells? Was my 2-3 minute sigmoidoscopy exam similar to your screening procedures?

After reading all your stories, my heart goes out to each and every one of you. I realize how easily I could have found myself in your position. I especially want to thank all the members who posted about their “special bums”. It made me realize I needn’t feel ashamed or embarrassed.

z

Belle
Hello and Welcome, First you need to find a dr with the experience with anal cancer, as it is very rare. Next I think they should do a anal pap smear and examine with dres, ano and sig scopes like you had. Others will I'm sure add in. My cancer was on the anal verge, and I had a punch biopsy to determine it was cancer. I also have to have a colonoscopy every 3 years due to having a pre cancerouse rectal polyp. I wish you well and keep us posted. Lori

mp327

Hi Belle--
It definitely sounds to me like you have been examined by doctors who do not have much experience in diagnosing and treating anal cancer. If, as you say, there are doctors listed on the UCSF website in your area who specialize in HPV, dysplasia, anal cancer, etc., then I highly recommend that you get yourself scheduled with one of them. To detect anal cancer, you should have an anoscope done (which is a short scope that requires no prep and can be done in the doctor's office). If an anal pap smear is offered to you, I would also have that done, but many docs do not do them, so don't be surprised if they tell you they don't do them. I can totally relate to the condyloma issue, as I had 3 pin-head sized ones removed in September 2010. They were removed under general anesthesia and biopsied (luckily all negative). My colorectal doctor told me that with my history of anal cancer (diagnosed in June 2008), the anal warts must be removed, and she referred to them as HPV warts. If your examination warrants a PET scan, then insist on one!

In all of my reading on anal carcinoma-in-situ, I've learned that treatment is not usually done (at least chemo/radiation). But the UCSF doctors have a dysplasia clinic that may be able to help you and I would recommend getting on their website again and reading up on this. There is a Dr. Berry there who specializes in treating dysplasia, so you can check him out on their site. That is one of the few places that offer high resolution anoscopy, which is a better test than the standard type. I know of someone who is being treated for anal dysplagia by Dr. Berry and they think he's wonderful.

Most insurance companies do not balk at paying for second opinions, so I would not let that stop me from making an appt. for one. It's my understanding that there are procedures that this dysplasia clinic offers which can prevent these lesions from turning into cancer. I would think an insurance company would much rather pay for that than full-blown cancer treatment.

Please let us know how things go for you. Remember, this is your life you're dealing with and I don't think you should continue dealing with doctors that make you unsure of their experience with this disease. Please seek out an expert for a second opinion. I wish you all the best.

Belle17

mp327 said:

Hi Belle--
It definitely sounds to me like you have been examined by doctors who do not have much experience in diagnosing and treating anal cancer. If, as you say, there are doctors listed on the UCSF website in your area who specialize in HPV, dysplasia, anal cancer, etc., then I highly recommend that you get yourself scheduled with one of them. To detect anal cancer, you should have an anoscope done (which is a short scope that requires no prep and can be done in the doctor's office). If an anal pap smear is offered to you, I would also have that done, but many docs do not do them, so don't be surprised if they tell you they don't do them. I can totally relate to the condyloma issue, as I had 3 pin-head sized ones removed in September 2010. They were removed under general anesthesia and biopsied (luckily all negative). My colorectal doctor told me that with my history of anal cancer (diagnosed in June 2008), the anal warts must be removed, and she referred to them as HPV warts. If your examination warrants a PET scan, then insist on one!

In all of my reading on anal carcinoma-in-situ, I've learned that treatment is not usually done (at least chemo/radiation). But the UCSF doctors have a dysplasia clinic that may be able to help you and I would recommend getting on their website again and reading up on this. There is a Dr. Berry there who specializes in treating dysplasia, so you can check him out on their site. That is one of the few places that offer high resolution anoscopy, which is a better test than the standard type. I know of someone who is being treated for anal dysplagia by Dr. Berry and they think he's wonderful.

Most insurance companies do not balk at paying for second opinions, so I would not let that stop me from making an appt. for one. It's my understanding that there are procedures that this dysplasia clinic offers which can prevent these lesions from turning into cancer. I would think an insurance company would much rather pay for that than full-blown cancer treatment.

Please let us know how things go for you. Remember, this is your life you're dealing with and I don't think you should continue dealing with doctors that make you unsure of their experience with this disease. Please seek out an expert for a second opinion. I wish you all the best.

Thank you
I appreciate all your responses. They confirm what I was thinking, that I needed a doctor who had experience in HPV/anal cancer.