Anal intraepithelial neoplasia, grade I out of III Low grade\there is focal positivity of squamous m

john900doe
john900doe Member Posts: 4
in Anal Cancer #1

Doctors seem to have an art of grabbing the exit door once they see you have a list of question in your hand. My doctor spent about 120 seconds with me and said there was nothing there to worry about and that we should keep and eye on it so come back in 6 months and we will see how it is doing.

He never mention whether I had cancer or not. When I looked up anal dysplasia on the American Cancer Society web it showed that the disease had only three stages I, II and III but showed a 79% 5 year survival rate for either squamous or non squamous and a slightly different rate for the other squamous type. This has had me very worried. Having HIV for > a decade and a cd4 count at 400 I became paranoid and anxiety ridden.

I thought I should obtain a second opinion and made an appointment to see a oncologist doctor at the University of Miami Sylvester Comphrehensive Cancer Center. I'd already been to UofM Cancer center a week earlier but the doctor was called into an emergency. As I wait round two a nurse or receptionist says he the cancer doctor doesn;t have time to see me and that I don't have cancer anyway. But make an appointment in a week.

This further confused me. I see the Huntsman Cancer commercial and it says cancer moves fast and therefore we must move fast.

My theory was get this treated ASAP before it has a chance to grow into a stage II or III. Am I missing something here or what am I not doing that I should be? I'm very confused. I would think this should be burnt out ASAP while it is still small or low grade rather than a wait and see scenario. Any help is appreciated.

 

D=============================================================================================================

 

Essentially during a very complete physcical as Im turning 60 the doctor discovered from a PAP SMEAR (Im male with Hx of rape in jail while being held 2 days for a minor offense after Hurricane Andrew.

From whaat I read on the American Cancer Society site I have stage I of a III stage cancer unless I have misinterputed something.

I only recieved 1 page of the biopsy report. After I returned to the colorectal surgeon which had done a sigmoidoscopy and an anoscopy I was given the following that was printed on page 2 of a 3 page report. I do not have page 1 or page 3 only 2.

DX =============================================================================================================

A. Analtissue left posterior:

Minimal Chronic inflamation in the submucossa

-No evidence of dysplasia

 

NOTE FOR PART A: Immunoperoxidase study with p16 is negative supporting the above diagnosis

 

B. Anal tissue, right posterior

Anal intraepithelial neoplasia, grade 1 out of III. Low Grade

NOTE FOR PART B: There is a focal positivity of the squamous nucosa for p16 supporting the above diagnosis

C,. Anal tissue, left anterior:

Focal kiolocytotic atypia (see note)

NOTE FOR PART C: The koilocytotic atypia has been seen in association to Human Papioma virus infection. Imunoperoxidase study with p16 are focally positive supporting the above diagnosis

D Anal tissue, right anterior:

Focal kiolocytotic atypia (see note)

NOTE FOR PART D: The koilocytotic atypia has been seen in association to [End of page 2]

 

Should I take the wait and see mode or look for another doctor? Or do I even have cancer? If there are any doctors is there anything to do to nip this in the ut before it becomes a seripus problem?

Thanks in advance.

Comments

  • dpatter03
    dpatter03 Member Posts: 23
    #2
    I am so sorry you had this

    I am so sorry you had this experience!   There are a lot of smart people on this website that can help you.  I am too new to this whole anal cancer thing...have only been dx since march 2015.

     

    How did you get to this specialist who did the testing?   Did a primary care doc refer you?  If so, maybe they can help get information and appts.

     

    Please be patient and see what others have to say.  I am sure they can help.

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #3
    Dear Friend,

    Cancer is not a joke. Keep going until you style your mind. Get answer to the following questions: do I have cancer or any other disease in the area? Do I need treatment now?

    All the best.

    Laz

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    john900doe

    Please check out this website for information about AIN.

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

     

  • john900doe
    john900doe Member Posts: 4
    #5
    dpatter03 said:

    I am so sorry you had this

    I am so sorry you had this experience!   There are a lot of smart people on this website that can help you.  I am too new to this whole anal cancer thing...have only been dx since march 2015.

     

    How did you get to this specialist who did the testing?   Did a primary care doc refer you?  If so, maybe they can help get information and appts.

     

    Please be patient and see what others have to say.  I am sure they can help.

    I try to pick anglo american named M.D.s in a 95% Latin town.

     

    I an Anglo American and have lived 60 years in or near a town called Hialeah, Florida. It is 95% Hispanic and the majority speak Spanish.  In essence they have taken over and have become very prejudicial over the last decade. (not all)

     

    Since I am a minority in this once Miami Paradise town I try to select names from the net or yellow pages with doctors names that appear Anglo American.

     

    A Dr. Pons seemed Anglo American but turned out to be Cuban but is 100% Americanized and likely born in Miami. He was nice but he's always seems to be running late and during both office visits has one hand on the entrance-exit door

     

    Their are doctors that truly want to help people without regard for money but the majority are profit driven.

     

    My PCP which happens to be my cd4 doctor gave me a paper that had about 8 doctors non surgical and colorectal surgeons listed. She said choose a colorectal surgeon but they were latin or Haitian and I simply do not understand most of them despite how nice and educated that they may be.

     

    However I'm learning you can't judge a doctor by his last name no better than judging a book by its cover.

     

    I simply need to be more assertive.

     

    My big concern about this wait and see how it looks six months later bothers me because I have a very poor immune system Most people have CD4 cells above 1,000 Mine are 400 and falling 20 points on average every couple months to my PCP doctor. I just spent nearly a month in the hospital. Much to my surprise there are no drugs path or I.V. that can be administered for antiretroviral control.

     

    I had an small bowel obstruction  (which has happened a 3rd time after having a colonoscopy and or sigmoidoscopy and drinking that awful 1 gallon jug of the laxative
    (GO-LITLY). Apparently since I take a lot of opiates my stomach or intestines lock up.

     

    Until the obstruction clears via surgery or waiting in horrific pain while they make you go cold turkey because opiates slow down the digestive system and it would take forever if I didn't detox off my opiates. It's pure hell but every day I can't take my anti-retroviral meds my CD4's fall. When initialy diagnosed I had a CD4 cell count of 16 and it took me 10 years to get my cd4's to 700 but my first small bowel obstruction caused my CD4's to drop to 100. Happily I got them back at 500 but they started falling for no reason. As I stated they are falling about 20 per two months.

     

    Your CD4 cells fight things like cancer. That's why I feel  that if in deed I have cancer or the start of cancer it would make sense to me to attack it right away before my cd4 cells fall even more. If one has no or little immune system nothing works. Antibiotics don't work if you dont have an immune system to boost them with the antibiotics.

     



     

    Thanks for you reply to my post. Sorry about getting a bit carried away in my reply. I will heed your advice

     

     

     

  • john900doe
    john900doe Member Posts: 4
    #6
    lp1964 said:

    Dear Friend,

    Cancer is not a joke. Keep going until you style your mind. Get answer to the following questions: do I have cancer or any other disease in the area? Do I need treatment now?

    All the best.

    Laz

    Thanks for the advice.

     

    II have an appointment in two weeks to see my very nice PCP female doctor. She always seems to go an extra mile with my care and understanding. She has requested reports from the doctor that did the biopsy so I assume I will learn much more when I talk with her.

     

    My paranoia (or anxiety) stems from myself having a low CD4 cell rating of 400 that keeps falling. I don't like to advertise the disease that I already had for many years now but if you don't know what CD4 cells are just google them and you will understand my concern.

     

    CD4 cells are like your bodies army that fights opportunistic diseases like cancers, even fungus, you name it. Thats why I need to know if I have cancer because the initial PAP SMEAR (Embarrassing as a male) said I had Anal Dysplasia. When you look that up on the American cancer site it shows some scary 5 year survival rates.

     


    Anal cancer is also very rare I think I read 2 out of ever 1,000 cancers are anal. #1 its obvious few doctors have dealt with only a few cases of anal cancer so there is not a wealth of experience out there.

     

    I worry more than the average person because my immune system is shot. If they don't kill this cancer (If I even have cancer) ASAP it could grow out of control very fast. As I said in an earlier post the biopsy results (which I placed on my first post) were faxed to a doctor that I choose for a second opinion and although I had an appointment to see an Oncologist at the University of Miami Sylvester Cancer Institute the doctor chose not to see me and had his secretary told me to make an appointment for some  time in the future. The secretary was a smart ****. I ask her what his impression were about the biopsy. She says to me she doesn't see the word cancer in my report.

     

    There are many different types of cancer and since this is a rare cancer how would she know. I give the health system a grade of F thus far. All I need is a yes or no even a maybe answer and what to expect in the future considering my terminal illness that I alreay had. I'm not looking for a course on cancer but I have found my travels thus far to be very frustrating.

     



     

     

     

  • john900doe
    john900doe Member Posts: 4
    #7
    mp327 said:

    john900doe

    Please check out this website for information about AIN.

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

     

    Thanks I learned more from your link than anywhere Ive been.

    You were right on with this link you kindly provided.

    Some of it was a little depressing but I can see why any doctor would not want to tackle something that can never be cured. I suppose a cure for hpv must be made before innovations will follow.

    I just took the following quote from the page that proves that this will always be an uphill battle. Thanks aggain.

    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.

  • mp327
    mp327 Member Posts: 4,440 Member
    #8
    john900doe said:

    Thanks I learned more from your link than anywhere Ive been.

    You were right on with this link you kindly provided.

    Some of it was a little depressing but I can see why any doctor would not want to tackle something that can never be cured. I suppose a cure for hpv must be made before innovations will follow.

    I just took the following quote from the page that proves that this will always be an uphill battle. Thanks aggain.

    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.

    John900doe

    You're very welcome--I'm glad you found it helpful.

  • mxperry220
    mxperry220 Member Posts: 493 Member
    #9
    Colon Rectal Surgeon

    Make an appointment with a colon rectal surgeon.  They are the experts in dealing with anal cancer.

    Mike

  • dpatter03
    dpatter03 Member Posts: 23
    #10
    Excellent link...I learned a

    Excellent link...I learned a lot.  Thanks.

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