anal mapping????

oncology12345
oncology12345 Member Posts: 41
in Anal Cancer #1

My doctor has said I will need to have this done?    Has anyone here had it done?  What exactly is it and why is it necessary?  Are there any negative side effects?   I feel I've been through a lot of trauma down there already having had a squamous cell carcinoma in situ removed surgically and am unsure as to whether I'll do this or not? It's very hard to find any information on it.

Any responses / thoughts appreciated.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    ???

    I have no idea what this is.  Have you done a search on it?  I may when I get time.  Never heard of it.

  • oncology12345
    oncology12345 Member Posts: 41
    #3
    mp327 said:

    ???

    I have no idea what this is.  Have you done a search on it?  I may when I get time.  Never heard of it.

    Thanks, Ihave searched and

    Thanks, Ihave searched and found nothing either. He mentioned it would involve taking lots of biopsies, I know I should have asked more questions but I never seem to think of them at the time.

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    oncology12345 said:

    Thanks, Ihave searched and

    Thanks, Ihave searched and found nothing either. He mentioned it would involve taking lots of biopsies, I know I should have asked more questions but I never seem to think of them at the time.

    oncology12345

    If it's not on the internet, then I'm perplexed!  I'm not familiar with your history, but did you have the standard treatment of chemo/radiation?  How far out from treatment are you and are you currently having any troubling symptoms?  If you are not having any problems, then I really would question the need to do "lots" of biopsies.  Neither my colorectal doctor nor my radiation oncologist are in favor of doing any type of routine biopsies post-radiation, due to the possibility of healing issues.  They only favor them when there is a reason, i.e. the patient is having some troubling symptoms that might indicate recurrence.  The only biopsy I've had post-treatment was on 3 anal condyloma (warts) that were removed 2 years later.  I had no issues with healing, but some people are not as fortunate.  Sorry if I am asking too many questions, I'm just very curious about all of this, being unfamiliar with this procedure.  Any information you can continue to provide will be appreciated.

    Martha

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #5
    Pure guess........

    Maybe the doctor is trying to locate the areas of dysplasia? It does sound a bit Swiss-cheese-like, though. I recently had a sigmoidoscoping with biopsies at 12 o'clock (original tumor), 3 o'clock, 6 o'clock, and 9 o'oclock - the radiation oncologist was surprised by so many, but that was what the oncologist and colo-rectal planned.

    I had exquisite pain for a good 5 days afterward and still have a lot of discomfort, but it was from the fissures the C-R doc found and traumatized, I think.

  • oncology12345
    oncology12345 Member Posts: 41
    #6
    Ouch_Ouch_Ouch said:

    Pure guess........

    Maybe the doctor is trying to locate the areas of dysplasia? It does sound a bit Swiss-cheese-like, though. I recently had a sigmoidoscoping with biopsies at 12 o'clock (original tumor), 3 o'clock, 6 o'clock, and 9 o'oclock - the radiation oncologist was surprised by so many, but that was what the oncologist and colo-rectal planned.

    I had exquisite pain for a good 5 days afterward and still have a lot of discomfort, but it was from the fissures the C-R doc found and traumatized, I think.

    Thanks for the replies. I had

    Thanks for the replies. I had a perianal squamous cell carcinoma in situ removed surgically a few months ago and even though it was an awful experience I got through it and on my last visit he said I would need this 'anal mapping'.  He said it would mean 15/20 biopsies of the area and would be painful. I've not had any chemo or anything like that as my cancer was in one spot.  He said this would be to check for other areas where there might be changes in the skin that might lead to cancer. I should add I am immunosupressed due to another medical problem I have. I just thought someone here might have had it done and could shed some light on exactly what it is / any problems with it etc.   I can't seem to find any info. anywhere.

    Thanks

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #7
    oncology12345 said:

    Thanks for the replies. I had

    Thanks for the replies. I had a perianal squamous cell carcinoma in situ removed surgically a few months ago and even though it was an awful experience I got through it and on my last visit he said I would need this 'anal mapping'.  He said it would mean 15/20 biopsies of the area and would be painful. I've not had any chemo or anything like that as my cancer was in one spot.  He said this would be to check for other areas where there might be changes in the skin that might lead to cancer. I should add I am immunosupressed due to another medical problem I have. I just thought someone here might have had it done and could shed some light on exactly what it is / any problems with it etc.   I can't seem to find any info. anywhere.

    Thanks

    Off-hand.....

    So, it sounds like he is looking for areas of dysplasia (also known as anal intraepithelial neoplasia - "AIN" - with a number, I, II, or III depending on the severity). For that kind of trauma, though, I would have sedation/anesthesia. Be sure that you receive adequate pain meds afterwards. If the prescribed pain meds are inadequate, let the doc know ASAP. Pain is unneccesary, causes further metabolic stress, interfers with healing in your immunosupressed body, and dents your emotional well-being.

    All the very best to you.

  • pializ
    pializ Member Posts: 508 Member
    #8
    Ouch_Ouch_Ouch said:

    Off-hand.....

    So, it sounds like he is looking for areas of dysplasia (also known as anal intraepithelial neoplasia - "AIN" - with a number, I, II, or III depending on the severity). For that kind of trauma, though, I would have sedation/anesthesia. Be sure that you receive adequate pain meds afterwards. If the prescribed pain meds are inadequate, let the doc know ASAP. Pain is unneccesary, causes further metabolic stress, interfers with healing in your immunosupressed body, and dents your emotional well-being.

    All the very best to you.

    Hmmm

    I think I would be asking for a second opinion. Is this procedure absolutely necessary? Martha always suggests a Dr Berry who sounds like a probable best source of information.  

    Good luck

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    pializ said:

    Hmmm

    I think I would be asking for a second opinion. Is this procedure absolutely necessary? Martha always suggests a Dr Berry who sounds like a probable best source of information.  

    Good luck

    Liz

    Liz

    Yes, from the information I've gotten from others who see Dr. Berry, he is top-notch.  I am often impressed by the fact that he will do phone consults with other physicians and even speak to patients over the phone, even though he has not seen them.  I would really like to know someday what protocol the UCSF Dysplasia Clinic follows to monitor people with dysplasia.  I need to call my friend out there who has been seeing Dr. Berry for a few years now. 

    I highly recommend that anyone on this board who has been diagnosed with anal dysplasia go to these websites.

    http://www.ucsfhealth.org/clinics/dysplasia/

    http://www.ucsfhealth.org/michael.berry

    http://id.medicine.ucsf.edu/analcancerinfo/

    Martha

  • oncology12345
    oncology12345 Member Posts: 41
    #10
    mp327 said:

    Liz

    Yes, from the information I've gotten from others who see Dr. Berry, he is top-notch.  I am often impressed by the fact that he will do phone consults with other physicians and even speak to patients over the phone, even though he has not seen them.  I would really like to know someday what protocol the UCSF Dysplasia Clinic follows to monitor people with dysplasia.  I need to call my friend out there who has been seeing Dr. Berry for a few years now. 

    I highly recommend that anyone on this board who has been diagnosed with anal dysplasia go to these websites.

    http://www.ucsfhealth.org/clinics/dysplasia/

    http://www.ucsfhealth.org/michael.berry

    http://id.medicine.ucsf.edu/analcancerinfo/

    Martha

    My doctor is a colorectal

    My doctor is a colorectal surgeon, what kind of doctor deals with dysplasia in the anal area????    Years ago I had I suppose the same thing in the cervix and had a colposcopy which cleared it and have had normal smears ever since. Because of what's happened I intend checking in with a gynae and making sure all is well in that department.  But what kind of doctor would I book to check for anal dysplasia?????   My colorectal mentioned that if there is any they can remove it.  I am not keen on any more cutting down there. I am not keen on 20 random biopsies!!!!!   Any suggestions anyone??

  • eihtak
    eihtak Member Posts: 1,473 Member
    #11
    oncology12345 said:

    My doctor is a colorectal

    My doctor is a colorectal surgeon, what kind of doctor deals with dysplasia in the anal area????    Years ago I had I suppose the same thing in the cervix and had a colposcopy which cleared it and have had normal smears ever since. Because of what's happened I intend checking in with a gynae and making sure all is well in that department.  But what kind of doctor would I book to check for anal dysplasia?????   My colorectal mentioned that if there is any they can remove it.  I am not keen on any more cutting down there. I am not keen on 20 random biopsies!!!!!   Any suggestions anyone??

    oncology12345

    While this may be somewhat out dated and not apply to your case personally, I thought the doctors response may be of interest/use.

    http://www.thebody.com/Forums/AIDS/Cancer/Q14318.html

     

     

     

    image

    anal mapping
    Mar 2, 2001

    Dr, I am a 35 year old HIV+ male, diagnosed 4/90 w/1000+ CD4's at the time, currently 500-600 CD4's and a viral load below 5,000. I was treated prior to HIV infection for anal condyloma (6+ years prior) and have recently discovered they're back. The pathology report determined there was a presence of stage 1 and stage 2 AIN cells and the physician believes I should take part in a procedure called, "anal mapping". What can you tell me about this procedure? How significant is the presence of stage 2 cells, and how quickly should I respond?

    image

    image

    image

    image

    Response from Dr. Dezube

    image

    The bottom line (sorry for the pun) is that I do think you should have the AIN 1 and 2 taken care of. AIN stands for pre-anal cancer; the cancer cells have NOT yet broken through the membrane. This is good news in that the cancerous cells have not spread yet. Given your high CD4 count, the AIN cells will in time progress. If you had just AIN 1, I would recommend just having a repeat look in your anal region in another 6 months. Often AIN 1 lesions will go away by themselves. However, AIN 2 lesions tend to progress. Although different clinicians will mean different things with such terminology by anal mapping, what you should have done is an anoscopy (someone looking up your canal) to document the extent of your disease, and then surgery to remove it. Often lasers are used to burn the base of the lesions to prevent them from coming back. Aldara cream is very effective against anal warts. Sometimes if the AIN lesions are close to the opening, you can apply Aldara cream internally using a hemorrhoid medication applicator (Note that this use of Aldara cream is not improved). There is NOT a sense of urgency. I would recommend at this point anoscopy and possible surgery sometime in the next few months. GOOD LUCK.

     

    Be well.......Katheryn

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    #12
    eihtak said:

    oncology12345

    While this may be somewhat out dated and not apply to your case personally, I thought the doctors response may be of interest/use.

    http://www.thebody.com/Forums/AIDS/Cancer/Q14318.html

     

     

     

    image

    anal mapping
    Mar 2, 2001

    Dr, I am a 35 year old HIV+ male, diagnosed 4/90 w/1000+ CD4's at the time, currently 500-600 CD4's and a viral load below 5,000. I was treated prior to HIV infection for anal condyloma (6+ years prior) and have recently discovered they're back. The pathology report determined there was a presence of stage 1 and stage 2 AIN cells and the physician believes I should take part in a procedure called, "anal mapping". What can you tell me about this procedure? How significant is the presence of stage 2 cells, and how quickly should I respond?

    image

    image

    image

    image

    Response from Dr. Dezube

    image

    The bottom line (sorry for the pun) is that I do think you should have the AIN 1 and 2 taken care of. AIN stands for pre-anal cancer; the cancer cells have NOT yet broken through the membrane. This is good news in that the cancerous cells have not spread yet. Given your high CD4 count, the AIN cells will in time progress. If you had just AIN 1, I would recommend just having a repeat look in your anal region in another 6 months. Often AIN 1 lesions will go away by themselves. However, AIN 2 lesions tend to progress. Although different clinicians will mean different things with such terminology by anal mapping, what you should have done is an anoscopy (someone looking up your canal) to document the extent of your disease, and then surgery to remove it. Often lasers are used to burn the base of the lesions to prevent them from coming back. Aldara cream is very effective against anal warts. Sometimes if the AIN lesions are close to the opening, you can apply Aldara cream internally using a hemorrhoid medication applicator (Note that this use of Aldara cream is not improved). There is NOT a sense of urgency. I would recommend at this point anoscopy and possible surgery sometime in the next few months. GOOD LUCK.

     

    Be well.......Katheryn

     

    ????

    Don't know why the format on this last post is like this and don't have time to fix right now, sorry.

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    oncology12345 said:

    My doctor is a colorectal

    My doctor is a colorectal surgeon, what kind of doctor deals with dysplasia in the anal area????    Years ago I had I suppose the same thing in the cervix and had a colposcopy which cleared it and have had normal smears ever since. Because of what's happened I intend checking in with a gynae and making sure all is well in that department.  But what kind of doctor would I book to check for anal dysplasia?????   My colorectal mentioned that if there is any they can remove it.  I am not keen on any more cutting down there. I am not keen on 20 random biopsies!!!!!   Any suggestions anyone??

    Dysplasia Specialist

    I cannot answer your question about what kind of doctor would be a dysplasia specialist.  However, Dr. Berry at UCSF is an internist who specializes in dysplasia. 

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #14
    eihtak said:

    ????

    Don't know why the format on this last post is like this and don't have time to fix right now, sorry.

    Curl up in your reading chair with a good post....

    I don't want to put words into Dr Dezube's mouth, but I suspect that when he wrote: "Note that this use of Aldara cream [imiquimod cream] is not improved", he actually meant: "Note that this use of Aldara cream is not APPROVED [by the FDA at that time, anyhow]."

    Since that conversation is from so long ago, perhaps "anal mapping" is an outdated technique? From reading the UCSF site, I think that Dr Berry and his cohort, Dr Palesky, prefer to to take anal HPV PAP smears  via "high-resolution anoscopy" or HRA.

    ------------------------------------------------------------------------------

    Informational quotes from the UCSF Dysplasia Clinic site:

    1. "In a similar way screening can also be performed for anal cancer and its precursors known as anal high-grade squamous intraepithelial lesions (HSIL), which are also known as anal intraepithelial neoplasia 2 or 3 (AIN 2 or AIN 3) or moderate or severe dysplasia or sometimes, the term carcinoma in situ (CIS) is used." http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/

    2. "It has only been since the late 1980s and early 1990s that the technique known as high-resolution anoscopy (HRA) was developed to examine the anus. Physicians in England were the first to describe this technique in which a microscope is used to examine the anus after applying vinegar." The article goes on to describe the test in detail. http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/examination.html

    3. An explanation of the various cytology results that could result from anal PAP smears: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    4. "Patients with HSIL identified in biopsies should be treated if at all possible regardless of immune status [HIV +/-]. Currently we think this is the best way to prevent anal cancer. Only a small number of people with HSIL will go on to progress to invasive anal cancer, but at the present time we have no certain way of identifying who will and who will not progress." [My emphasis.] http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/results.html

    5a. After a discussion of whether or not to treat HSIL/AIN 2-3 and how there is no standard for it, they write: "In our practice we accept the limitations of current knowledge, and hypothesize that treatment of the precancerous lesions (HSIL) will result in a decreased incidence of anal cancer." http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5b. They discuss how little has been published about the treatment of the SIL/AIN/condyloma-wart conditions. They quote several small, non-randomized studies that give efficacy rates for surgical intervention on several small groups of patients. They discuss the medications imiquimod and Efudex (5-fU). http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5c. They stress that although they can treat conditions caused by HPV, they cannot treat the underlying virus itself. [Bummer!] The areas of HPV infection are limited, though. The one bright spot is that: "HPV only affects squamous epithelium, which includes the anus and perianal areas, as well as the cervix, vagina and vulva in women. or penis in men. HPV does not extend beyond the anus into the colon. The colon is a different tissue type, which is not infected by HPV. Therefore it is not necessary to have a colonoscopy in order to determine if warts are further inside the colon." http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5d. Following an HRA exam, they note that: "Once it is determined whether the patient has LGAIN (including condyloma/warts), HGAIN, or both, as well as the location and extent of the lesions, a treatment plan will be suggested which may include a single type of treatment or a combination of treatments." Although you should most definitely check with the Dysplasia Clinic MDs, these online articles strongely suggest to me that they utilize HRA over "anal mapping". Indeed, that term isn't even mentioned among the Dysplasia Clinic webpages. http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    6. A list is given of all the non-surgical treatments the Dysplasia Clinic utilizes: "Therapies for Treatment of Warts, LGAIN, HGAIN". http://id.medicine.ucsf.edu/analcancerinfo/treatment/therapies.html

    7. A list is given of all the surgical treatments the Dysplasia Clinic utilizes: "Surgical Management of LSIL, HSIL, and Anal Cancer". http://id.medicine.ucsf.edu/analcancerinfo/treatment/surgery.html

    8. Finding providers trained in HRA (I don't know how exhaustive the list is): http://id.medicine.ucsf.edu/analcancerinfo/providers.html

    NOTE:

    These are quotes extracted from the various UCSF Dysplasia Clinic articles. Much more information is found on these webpage links.

    -----------------------------------------------------------------------------------

    Illustration of anal anaotomy: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/anatomy.html

    Illustration of the various stages of SIL: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    -----------------------------------------------------------------------------------

    5-fu = 5% fluorouracil

    AIN = Anal intraepithelial neoplasia (dysplasia)

    CIN = Cervical intraepithelial neoplasia

    CIS = Carcinoma in situ

    DRE = Digital (or manual) rectal exam

    HGAIN = high-grade anal intraepithelial lesions

    HIV = Human immunodeficiency virus 

    HPV = Humanpapilloma virus

    HRA = High-tresolution anoscopy

    HSIL = Anal high-grade squamous intraepithelial lesions

    LGAIN = Anal low-grade squamous intraepithelial lesions

    LSIL = Anal low-grade squamus intraepithelial lesions

    SIL = Anal squamus intraepithelial lesions

    UCSF = University of California at San Francisco

  • mp327
    mp327 Member Posts: 4,440 Member
    #15
    Ouch_Ouch_Ouch said:

    Curl up in your reading chair with a good post....

    I don't want to put words into Dr Dezube's mouth, but I suspect that when he wrote: "Note that this use of Aldara cream [imiquimod cream] is not improved", he actually meant: "Note that this use of Aldara cream is not APPROVED [by the FDA at that time, anyhow]."

    Since that conversation is from so long ago, perhaps "anal mapping" is an outdated technique? From reading the UCSF site, I think that Dr Berry and his cohort, Dr Palesky, prefer to to take anal HPV PAP smears  via "high-resolution anoscopy" or HRA.

    ------------------------------------------------------------------------------

    Informational quotes from the UCSF Dysplasia Clinic site:

    1. "In a similar way screening can also be performed for anal cancer and its precursors known as anal high-grade squamous intraepithelial lesions (HSIL), which are also known as anal intraepithelial neoplasia 2 or 3 (AIN 2 or AIN 3) or moderate or severe dysplasia or sometimes, the term carcinoma in situ (CIS) is used." http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/

    2. "It has only been since the late 1980s and early 1990s that the technique known as high-resolution anoscopy (HRA) was developed to examine the anus. Physicians in England were the first to describe this technique in which a microscope is used to examine the anus after applying vinegar." The article goes on to describe the test in detail. http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/examination.html

    3. An explanation of the various cytology results that could result from anal PAP smears: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    4. "Patients with HSIL identified in biopsies should be treated if at all possible regardless of immune status [HIV +/-]. Currently we think this is the best way to prevent anal cancer. Only a small number of people with HSIL will go on to progress to invasive anal cancer, but at the present time we have no certain way of identifying who will and who will not progress." [My emphasis.] http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/results.html

    5a. After a discussion of whether or not to treat HSIL/AIN 2-3 and how there is no standard for it, they write: "In our practice we accept the limitations of current knowledge, and hypothesize that treatment of the precancerous lesions (HSIL) will result in a decreased incidence of anal cancer." http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5b. They discuss how little has been published about the treatment of the SIL/AIN/condyloma-wart conditions. They quote several small, non-randomized studies that give efficacy rates for surgical intervention on several small groups of patients. They discuss the medications imiquimod and Efudex (5-fU). http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5c. They stress that although they can treat conditions caused by HPV, they cannot treat the underlying virus itself. [Bummer!] The areas of HPV infection are limited, though. The one bright spot is that: "HPV only affects squamous epithelium, which includes the anus and perianal areas, as well as the cervix, vagina and vulva in women. or penis in men. HPV does not extend beyond the anus into the colon. The colon is a different tissue type, which is not infected by HPV. Therefore it is not necessary to have a colonoscopy in order to determine if warts are further inside the colon." http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5d. Following an HRA exam, they note that: "Once it is determined whether the patient has LGAIN (including condyloma/warts), HGAIN, or both, as well as the location and extent of the lesions, a treatment plan will be suggested which may include a single type of treatment or a combination of treatments." Although you should most definitely check with the Dysplasia Clinic MDs, these online articles strongely suggest to me that they utilize HRA over "anal mapping". Indeed, that term isn't even mentioned among the Dysplasia Clinic webpages. http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    6. A list is given of all the non-surgical treatments the Dysplasia Clinic utilizes: "Therapies for Treatment of Warts, LGAIN, HGAIN". http://id.medicine.ucsf.edu/analcancerinfo/treatment/therapies.html

    7. A list is given of all the surgical treatments the Dysplasia Clinic utilizes: "Surgical Management of LSIL, HSIL, and Anal Cancer". http://id.medicine.ucsf.edu/analcancerinfo/treatment/surgery.html

    8. Finding providers trained in HRA (I don't know how exhaustive the list is): http://id.medicine.ucsf.edu/analcancerinfo/providers.html

    NOTE:

    These are quotes extracted from the various UCSF Dysplasia Clinic articles. Much more information is found on these webpage links.

    -----------------------------------------------------------------------------------

    Illustration of anal anaotomy: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/anatomy.html

    Illustration of the various stages of SIL: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    -----------------------------------------------------------------------------------

    5-fu = 5% fluorouracil

    AIN = Anal intraepithelial neoplasia (dysplasia)

    CIN = Cervical intraepithelial neoplasia

    CIS = Carcinoma in situ

    DRE = Digital (or manual) rectal exam

    HGAIN = high-grade anal intraepithelial lesions

    HIV = Human immunodeficiency virus 

    HPV = Humanpapilloma virus

    HRA = High-tresolution anoscopy

    HSIL = Anal high-grade squamous intraepithelial lesions

    LGAIN = Anal low-grade squamous intraepithelial lesions

    LSIL = Anal low-grade squamus intraepithelial lesions

    SIL = Anal squamus intraepithelial lesions

    UCSF = University of California at San Francisco

    Ouch

    Thank you so much for posting all of this great information, including the addresses .  It's been awhile since I looked at UCSF Dysplasia Clinic's website thoroughly, so I definitely need to revisit it since it looks like it's been updated with more information.  You've certainly done your homework and your part to keep us all informed.  I appreciate that very much.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #16
    mp327 said:

    Ouch

    Thank you so much for posting all of this great information, including the addresses .  It's been awhile since I looked at UCSF Dysplasia Clinic's website thoroughly, so I definitely need to revisit it since it looks like it's been updated with more information.  You've certainly done your homework and your part to keep us all informed.  I appreciate that very much.

    Thank you!

    I was afraid that I was creating a long, tedious post that nobody would read .^_^.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #17
    Ouch_Ouch_Ouch said:

    Curl up in your reading chair with a good post....

    I don't want to put words into Dr Dezube's mouth, but I suspect that when he wrote: "Note that this use of Aldara cream [imiquimod cream] is not improved", he actually meant: "Note that this use of Aldara cream is not APPROVED [by the FDA at that time, anyhow]."

    Since that conversation is from so long ago, perhaps "anal mapping" is an outdated technique? From reading the UCSF site, I think that Dr Berry and his cohort, Dr Palesky, prefer to to take anal HPV PAP smears  via "high-resolution anoscopy" or HRA.

    ------------------------------------------------------------------------------

    Informational quotes from the UCSF Dysplasia Clinic site:

    1. "In a similar way screening can also be performed for anal cancer and its precursors known as anal high-grade squamous intraepithelial lesions (HSIL), which are also known as anal intraepithelial neoplasia 2 or 3 (AIN 2 or AIN 3) or moderate or severe dysplasia or sometimes, the term carcinoma in situ (CIS) is used." http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/

    2. "It has only been since the late 1980s and early 1990s that the technique known as high-resolution anoscopy (HRA) was developed to examine the anus. Physicians in England were the first to describe this technique in which a microscope is used to examine the anus after applying vinegar." The article goes on to describe the test in detail. http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/examination.html

    3. An explanation of the various cytology results that could result from anal PAP smears: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    4. "Patients with HSIL identified in biopsies should be treated if at all possible regardless of immune status [HIV +/-]. Currently we think this is the best way to prevent anal cancer. Only a small number of people with HSIL will go on to progress to invasive anal cancer, but at the present time we have no certain way of identifying who will and who will not progress." [My emphasis.] http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/results.html

    5a. After a discussion of whether or not to treat HSIL/AIN 2-3 and how there is no standard for it, they write: "In our practice we accept the limitations of current knowledge, and hypothesize that treatment of the precancerous lesions (HSIL) will result in a decreased incidence of anal cancer." http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5b. They discuss how little has been published about the treatment of the SIL/AIN/condyloma-wart conditions. They quote several small, non-randomized studies that give efficacy rates for surgical intervention on several small groups of patients. They discuss the medications imiquimod and Efudex (5-fU). http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5c. They stress that although they can treat conditions caused by HPV, they cannot treat the underlying virus itself. [Bummer!] The areas of HPV infection are limited, though. The one bright spot is that: "HPV only affects squamous epithelium, which includes the anus and perianal areas, as well as the cervix, vagina and vulva in women. or penis in men. HPV does not extend beyond the anus into the colon. The colon is a different tissue type, which is not infected by HPV. Therefore it is not necessary to have a colonoscopy in order to determine if warts are further inside the colon." http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    5d. Following an HRA exam, they note that: "Once it is determined whether the patient has LGAIN (including condyloma/warts), HGAIN, or both, as well as the location and extent of the lesions, a treatment plan will be suggested which may include a single type of treatment or a combination of treatments." Although you should most definitely check with the Dysplasia Clinic MDs, these online articles strongely suggest to me that they utilize HRA over "anal mapping". Indeed, that term isn't even mentioned among the Dysplasia Clinic webpages. http://id.medicine.ucsf.edu/analcancerinfo/treatment/

    6. A list is given of all the non-surgical treatments the Dysplasia Clinic utilizes: "Therapies for Treatment of Warts, LGAIN, HGAIN". http://id.medicine.ucsf.edu/analcancerinfo/treatment/therapies.html

    7. A list is given of all the surgical treatments the Dysplasia Clinic utilizes: "Surgical Management of LSIL, HSIL, and Anal Cancer". http://id.medicine.ucsf.edu/analcancerinfo/treatment/surgery.html

    8. Finding providers trained in HRA (I don't know how exhaustive the list is): http://id.medicine.ucsf.edu/analcancerinfo/providers.html

    NOTE:

    These are quotes extracted from the various UCSF Dysplasia Clinic articles. Much more information is found on these webpage links.

    -----------------------------------------------------------------------------------

    Illustration of anal anaotomy: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/anatomy.html

    Illustration of the various stages of SIL: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    -----------------------------------------------------------------------------------

    5-fu = 5% fluorouracil

    AIN = Anal intraepithelial neoplasia (dysplasia)

    CIN = Cervical intraepithelial neoplasia

    CIS = Carcinoma in situ

    DRE = Digital (or manual) rectal exam

    HGAIN = high-grade anal intraepithelial lesions

    HIV = Human immunodeficiency virus 

    HPV = Humanpapilloma virus

    HRA = High-tresolution anoscopy

    HSIL = Anal high-grade squamous intraepithelial lesions

    LGAIN = Anal low-grade squamous intraepithelial lesions

    LSIL = Anal low-grade squamus intraepithelial lesions

    SIL = Anal squamus intraepithelial lesions

    UCSF = University of California at San Francisco

    US Veterans Administration information

    I stumbled across a lot of VA info on human papillomavirus (HPV), dysplasia, and anal cancer. Although it's mainly presented in the light of HIV+ persons (a big risk factor for anal cancer due to the immunosupression), the information and treatment procedures outlined by the VA are consistent with the UCSF Dysplasia Clinic so far as I can tell. This is only some of it:

    http://www.hiv.va.gov/provider/manual-primary-care/anal-dysplasia.asp
    http://www.hiv.va.gov/provider/manual-primary-care/anal-dysplasia-table1.asp?backto=provider/manual-primary-care/anal-dysplasia&backtext=Back to Anal Dysplasia Chapter
    http://www.veteranshealthlibrary.org/TestsTreatments/Treatments/142,86185_VA

    SCCA = Squamous cell cancer of the anus

  • oncology12345
    oncology12345 Member Posts: 41
    #18
    mp327 said:

    Dysplasia Specialist

    I cannot answer your question about what kind of doctor would be a dysplasia specialist.  However, Dr. Berry at UCSF is an internist who specializes in dysplasia. 

    Thanks everyone for the posts

    Thanks everyone for the posts - very informative. I feel I'm becoming an expert. I can't see the logic of twenty random biopsies at all, they might only hit healthy skin and miss the dysplasia altogether. I'm thinking I'll watch and wait and see what happens. Keep an eye down there so to speak.Cry I'm not sure that this is the right thing to do but it feels better than all those biopsies. Is there anything I can do to prevent dysplasia coming back?????  Eating better etc.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #19
    oncology12345 said:

    Thanks everyone for the posts

    Thanks everyone for the posts - very informative. I feel I'm becoming an expert. I can't see the logic of twenty random biopsies at all, they might only hit healthy skin and miss the dysplasia altogether. I'm thinking I'll watch and wait and see what happens. Keep an eye down there so to speak.Cry I'm not sure that this is the right thing to do but it feels better than all those biopsies. Is there anything I can do to prevent dysplasia coming back?????  Eating better etc.

    Information is power.

    This site, "Anal Cancer Info", a collaboration between the University of California at San Francisco's Dysplasia Clinic and the American Cancer Society, is a primer on what anal cancer is, what dysplasia is, how it's diagnosed, and how it's treated:  http://id.medicine.ucsf.edu/analcancerinfo/

    Unfortunately, dysplasia doesn't reveal itself with casual visual observation. It takes a microscopic examination to evaluate the level of cellular damage present, if any. Once that's determined, the treatment plan is formed, all the way from "repeat 3-6 months in the future" to "act immediately". With the "high resolution anoscopy" procedure (HRA), dysplasia can be tracked with minimal pain.

    Spend this evening reading through the pages of that website. One thing it will point out that in the majority of cases, dysplasia is due to a Human papillomavirus (HPV) infection that doesn't go away, and for which there is no cure. One thing you can do immediately, though, is to stop smoking if that is your vice. The combustion products of the cigarette smoke inhibit the normal cellular function of "apoptosis". Apoptosis tells a cell when it's time to die and allow a fresh cell to take its place. When this safety precaution is turned off, cells don't die on schedule, but keep growing and growing, ever-increasing their numbers. Voila! Cancer. For this reason, there is an extremely strong link between anal cancer and smoking. So, if you smoke, STOP!

  • oncology12345
    oncology12345 Member Posts: 41
    #20
    Ouch_Ouch_Ouch said:

    Information is power.

    This site, "Anal Cancer Info", a collaboration between the University of California at San Francisco's Dysplasia Clinic and the American Cancer Society, is a primer on what anal cancer is, what dysplasia is, how it's diagnosed, and how it's treated:  http://id.medicine.ucsf.edu/analcancerinfo/

    Unfortunately, dysplasia doesn't reveal itself with casual visual observation. It takes a microscopic examination to evaluate the level of cellular damage present, if any. Once that's determined, the treatment plan is formed, all the way from "repeat 3-6 months in the future" to "act immediately". With the "high resolution anoscopy" procedure (HRA), dysplasia can be tracked with minimal pain.

    Spend this evening reading through the pages of that website. One thing it will point out that in the majority of cases, dysplasia is due to a Human papillomavirus (HPV) infection that doesn't go away, and for which there is no cure. One thing you can do immediately, though, is to stop smoking if that is your vice. The combustion products of the cigarette smoke inhibit the normal cellular function of "apoptosis". Apoptosis tells a cell when it's time to die and allow a fresh cell to take its place. When this safety precaution is turned off, cells don't die on schedule, but keep growing and growing, ever-increasing their numbers. Voila! Cancer. For this reason, there is an extremely strong link between anal cancer and smoking. So, if you smoke, STOP!

    Again. Thanks for all that

    Again. Thanks for all that information   My doctor still says anal mapping is the way to go - but no where even with all the great websites I've been given can I find anything about anal mapping in the perianal area!   If anyone can suggest anywhere else I'd be thankful. It's not due to be done for a while but I'd rather know something about it, that's if I go ahead and do it.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #21
    oncology12345 said:

    Again. Thanks for all that

    Again. Thanks for all that information   My doctor still says anal mapping is the way to go - but no where even with all the great websites I've been given can I find anything about anal mapping in the perianal area!   If anyone can suggest anywhere else I'd be thankful. It's not due to be done for a while but I'd rather know something about it, that's if I go ahead and do it.

    You are your best advocate.

    I checked the NCCN guideline for Anal Carcinoma. There's no mention of "anal Mapping" in the document while "high resolution anoscopy" is found on page MS-3 under the Risk Reduction section. It does mention "biopsy", too, but not a carpet-bombing session. If you want to read the document yourself (and you should for your own knowledge), go to the National Comprehensive Cancer Network website and register for free. These guidlines are followed by many medical providers all over the world. http://www.nccn.org/

    * Ask your doctor where you can find online, or in printed format, information on this technique - it should be considered part of your informed consent.

    * Ask your doctor about high-resolution anoscopy (HRA) as a much less painful alternative. From what the UCSF Dysplasia Clinic's "Anal Cancer Information" site seems to say, it should give the same information without all those holes.

    * Ask your doctor to contact the doctors at the Dysplasia Clinic on your behalf to discuss the current modes of anal cancer follow-up.

    * If your doctor will not do so, contact the clinic yourself - ask specifically about the contemplated "anal mapping".

    * Tell the doctor to read the information on the Dysplasia Clinic website and give the doctor a copy of the NCCN guideline to review.

    * At the very least, request a second opinion at a completely different practice or medical center known for cancer treatment. Anal cancer is still fairly rare, after all, and not every doctor knows what is current thinking. Your insurance will likely cover this.

    Remember that the anal area is extremely sensitive, packed with lots of nerve endings, unlike the colon. If you think you can endure this procedure and trust your doctor, then by all means proceed. Speaking for myself, I have grown extremely gun-shy of painful procedures and will strive to get the medical world to justify their necessity to me before I sign any more consents. (I can't tell you what to do, of course, but I get the willies thinking about this "anal mapping" procedure being done on me!)

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