POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: caliboy on December 03, 2009, 02:10:33 pm
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hello all. my name is christopher, i am marking twenty years this month that i know i am hiv poz - although i have been poz for at least 25 years (perhaps 27) we really don't know now do we? anyway, i was just given my first anal swab test last month (i know, i know) and it came back showing high-grade squamous cells. i go for a follow-up swab late in january. first of all, i am uncertain just what the test result means - and, yes, i am now researching the topic daily - a bit obsessively i admit - but i was wondering if there are any other lts members who have been through this and if you might be able to offer some counsel & advice.
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I have not been through this but hope you find some help here.
Question for you: Please tell us what city you are located in and we can get some info to you to send to you OR post for followup care.
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thanks for the reply bear 60. i live in santa monica, ca. best, christopher
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Yeah, I've had it. I can't recall off hand if it was specifically labeled "high grade" or what, but I assume at least one time was as I had to go back and have it zapped with a laser up my ass.
Basically what it means is that it's an area right in the first part of your anus that has a group of irregular pre-cancerous cells. Don't let the "cancer" word freak you out like it did me. Anyway, they either decide to monitor it regularly (like every 6 months) or something more invasive like what I just described. You should be referred to a colorectal surgeon, and hopefully your HIV specialist knows someone already that sees patients with HIV.
If you have to do the laser thingie and you're working still I'd recommend at least doing it on a Friday so you have the weekend to recover. By "recover" I mean that there will be some residual bleeding issues. Mine wasn't too bad, but I've read some that were worse. I slept on towels so I didn't mess up my sheets, and used feminine napkins in my underwear for the weekend. The first bowel movement or two isn't particularly pleasant, but they'll also give you some hydorcodone or something similar.
This is the type of thing everyone should be screened for (but I've found most are not) -- definitely a LTS should be screened.
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Thanks for the reply MP, and YES, the *c* word has me mightily scared. The problem is that I go the the V.A. in West Los Angeles for my healthcare - I do not have *regular* insurance - and the V.A. does not really have the resources for this sort of care. Nor do they seem too willing to wrap their heads around it.(The back-door is always a taboo area and a subject best kept in the closet - especially at the V.A.) I have already asked about using lasers for a pre-cancerous sort of condition and they have said they do not do that. So that seems to mean they will allow a relatively minor condition escalate to a more serious one and then treat that more serious condition and that does not seem to be the right approach to me!
A couple of questions for you MP. Was your screening done with a full, visual examination or just using a swab? At what point did you have a *full* examination? Since your treatment, are you still being assessed every six months? Using a swab or a full examination? I know I am asking a lot of questions (sorry about that) but I am really freaking out here.
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A couple of questions for you MP. Was your screening done with a full, visual examination or just using a swab? At what point did you have a *full* examination? Since your treatment, are you still being assessed every six months? Using a swab or a full examination? I know I am asking a lot of questions (sorry about that) but I am really freaking out here.
10 years after my '93 HIV diagnosis (probably 15 years after infection) my HIV doc took a swab/anal PAP smear in his office. The results came back that an "irregular cell structure" was present, hardly surprising considering I had dealt with recurring anal warts five years earlier. He then referred me for further care/monitoring to the colorectal surgeon, I was very fortunate that he was also gay and had written a book about anal sex, and was very much on the vanguard of all this at the time. Also he had a lot of HIV+ patients (I was living in NYC at the time).
So once referred to the specialist they did a full examination where they sent a small video camera up my back door and filmed it all. At the time they just then wanted to monitor that area and I went back every six months, and then a year and a half later he decided to zap it wit a laser. I then moved and went a couple years before hooking up with a new specialist, but he seemed to think things were OK. I've not been back but I need to go at some point.
Can't help you with V.A. stuff, but it seems quite odd that they'd take an anal PAP smear and then not be able to refer you elsewhere. What does the doctor say that took the smear?
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One of our forum members gave me this information for you....
If insured you could go to UCLA Care clinic on Pico. The wait time is approximately 6 months to see Dr. Voskanian. If gay, you could go to the LAGLC and see Dr. Bolan.
You should be seen by your PCP with any new pain, bleeding or bump that lasts for longer than 2 weeks.
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thanks again bear 60. i will try to get an appt. with doctor bolan on monday - i just want to find a dr. who has lots of experience with this sort of problem. thanks again - so much! best, christopher
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This article was written a number of years ago, but I still find it to be the most complete, thorough, and relatively understandable treatment of anal dysplasia:
http://www.sfaf.org/treatment/beta/b46/b46anal.html (http://www.sfaf.org/treatment/beta/b46/b46anal.html)
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Thanks for the article edfu.
FYI - I just had my second anal swab test (one week ago actually) and I got the latest results today. This time instead of high grade squamous cells - they now say I have low grade squamous cells. This second test seems to confirm that I have squamous cells but as far as the grading is concerned, I am given to understand that it is a very subjective reading by a technician - so I remain uncertain as to what I actually have or the severity of it.
I WAS able to get into the Gay and Lesbian Center (not an easy thing to do as a matter of fact!) and I have an appointment for a colposcopy for the 19TH OF MAY!! - FOUR MONTHS AWAY. And that was the soonest they could see me - they are that backed up! Bright side: At least I have an appointment now to be seen by a doctor - as the Westside V.A. is unable to do the procedure at all at this point - they hope to be able to do it sometime this year - but even that seems to be uncertain.
I feel as if I am fighting a system that has the means to treat this condition in its early stages but is more than willing to put it on the back burner until it becomes a more serious condition. Why? WHY?
Keep the faith my brothers and sisters. XOXOXO
GET AN ANAL SWAB!
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A colonoscopy is good for prostate cancer screening, but you need to have (also) an anoscopy done if you want to have anal dysplasia looked at. Only a visual look with anoscopy will allow for proper diagnosis of what the PAP smear has told you.
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Hi Miss P. THANKS FOR YOUR REPLY!
It is a colposcopy that are going to do - not a colonoscopy (I had one of those done last year. All was well.) The colposcopy involves an MRI of the anus and then sampling any tissue that is abnormal and sending it in for biopsy.
I am certain it is the procedure you had for your pre-cancerous lesions. Right?
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Oh, I thought you'd just spelled it wrong. Unless you have a vagina that we aren't aware of I'm not sure how your doctor plans to do a colposcopy.
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The L.A. Gay and Lesbian Center calls the prodecure a colposcopy - or colp for short - it always colp - so perhaps you should take it up with them. ;D
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The L.A. Gay and Lesbian Center calls the prodecure a colposcopy - or colp for short - it always colp - so perhaps you should take it up with them. ;D
Here, read this -- it's specifically a "high-resolution anoscopy" that you should get done, and this is a VA link about it:
http://www.hiv.va.gov/vahiv?page=cf05-cr-palefsky
I'll go with what the Veterans Administration says, since that's where you go -- and it's what the two doctors I've had call it (appropriately) and they specialize in this with HIV patients. Colposcopy is technically incorrect as far as I can tell, and if I'm wrong someone needs to go change the wikipedia entry as well.
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those photos have scared me all over again. yikes. i hate this, i hate this. i really do not want to make this a part of my life!
that study was done at the v.a. in san francisco - not los angeles - and that seems to be the problem. they don't do the high-resolution anoscopy here in l.a. - they don't even have the equipment - that's why i am trying to get the procedure done at the gay and lesbian center. it is all a nightmare.
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Sweetheart, calm down. As long as it's just laser surgery that they end up doing on you like they did me it's really not that big of an ordeal. Try and relax.
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Sorry you are going through this, but stress can make it worse.I am a female who had dysplasia and had to have a lot of test and eventually laser surgery, which wasn't too bad, but scary because they did it to my vagina. I could not understand how i a woman who had a total hysterectomy could have cancerous cells??? I did find out you can get cancer of the vigina, which shocked the hell outta me 1 Well so far so good, I go for my 2ncd pap smear in March. I am glad the healing went well. I have not had and anal pap, that I know of, so I guess I should ask???? I have had anal sex in the past, and besides internal hemmoroids no problems. i also have had a colonoscopy and a colposcopy.
Best wishes to you and try not to stress out. ;)
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Thanks Netta. Your words mean a lot to me. I am sorry you are going through your ordeal - it cannot be an easy thing to face.
These cells are a constant worry and I know I need to get that worry under control. I know this - but doing it is something else entirely.
I have upped my workout regimen - more time on the elliptical machine has always meant less stress for me - but now I have internalized the stress so much that I only sleep about four hours a night.
It is something I will work on. It will be what it will be.
Take care Netta and keep the faith!
XO Christopher
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I had my first procedure - infared cauterization - of 3 high-grade HPV lesions in June 2010. In September, I was supposed to have been re-checked but I was bleeding a little - from hemorrhoids - so we waited until 2 days before Christmas for me to have a folow-up checkup. The lesions are back completely - which is the most common occurrence - nearly everyone experiences this - and now the Dr. has prescribed ALDARA to be applied topically (internally) three days a week for 12 weeks. I knew nothing about Aldara prior to the prescription and now I have scared myself to death reading the testimonials of others who have tried Aldara. I really don't know what to do...
This trial helped a little - but I am still reticent, oh yes, I am reticent.
http://archderm.ama-assn.org/cgi/content/full/142/11/1438
Any thoughts?
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and now the Dr. has prescribed ALDARA to be applied topically (internally) three days a week for 12 weeks.
http://archderm.ama-assn.org/cgi/content/full/142/11/1438
Any thoughts?
Hi,
I was using Aldara cream, probably 5 years or so ago. But I was told at that time, it was to be used only externally. I was getting some good results, but I still had to go get them surgically removed. I never had any negative reaction to the Aldara cream either at the site of application, or around it. It was easy to use and apply. Unfortunately, It was also very expensive, but I also had insurance at the time. I was also applying it 3 times a week.
So,You would be using the Aldara for 12 weeks, for a total of 36 applications The study did 3 applications a week for 16 weeks. How often will you be going for follow up checks with the doctor, during this 3 times a week, internal application?
"Conclusions Imiquimod appears to be a safe and effective treatment option for AIN in HIV-positive MSM. Clinical response is accompanied by a significant decrease in high-risk HPV DNA load. These results should encourage controlled randomized studies of imiquimod treatment of AIN."
By the way, My tcells back then, were probably in the 200 area, and undetectable.
Ray
EDITED TO ADD:
How should I apply Aldara?
Use Aldara exactly as prescribed by your doctor. Do not use in larger or smaller amounts or for longer than recommended. Follow the directions on your prescription label.
Using too much of this medicine, or using it for too long can increase your risk of severe skin reactions.
Before applying Aldara, wash your hands and wash the skin area to be treated. Allow the skin to dry for at least 10 minutes before applying the medicine. Always wash your hands after applying the medicine also. Do not use this medicine on areas of broken, wounded, or burned skin. Wait until these conditions have healed before using Aldara.
Aldara is normally used 2 to 5 times per week for up to 16 weeks. How you use this medication will depend on the condition you are treating. Follow your doctor's instructions.
Actinic keratosis:
Usually applied 2 times per week (such as Monday and Thursday, or Tuesday and Friday) for a full 16 weeks. Apply the cream from one Aldara packet to the treatment area, and rub in the cream until it disappears. A single treatment area should be no larger than a 2-inch square. Use the medicine before going to bed and leave it on for 8 hours. In the morning, wash off the medicine with water and a mild soap.
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I was also wondering if there were more current studies going on. This study looks as though it's from 2006.
Ray
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I cannot find anything more recent and I spent all day yesterday looking. And I would call the author of the study but he appears to be in Germany.
I want to know if there are other doctors out there who are recommending Aldara internally although it is not supposed to be used that way.
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This is a report this year on the use of Aldara for pre-cancerous anal lesions:
http://www.aidsmap.com/Imiquimod-a-good-treatment-for-pre-cancerous-anal-lesions-in-men-with-HIV/page/1507497/
I find it difficult to believe that only one patient discontinued study because of adverse side effects. As you've noted, the reports on adverse side effects for Aldara use elsewhere on the body are quite negative.
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Well, I took the Aldara - without many problems at all - AFTER ALL THAT WORRY - it's the fear that'll get ya' - every single time.
Last month, I had the three (still) high-grade lesions removed (again) and I imagine (from the statistics anyway) that I will have to do it again (perhaps up to three more times.)
The problem (for me, at any rate) is the recovery from the procedure - it's painful and bloody and it takes me 10 days to get anywhere near back to normal and more than two weeks to recover - although I continue to bleed for weeks afterward.
STILL, YOU NEED TO BE CHECKED FOR ANAL DYSPLASIA - ALL OF YOU - ESPECIALLY THOSE WHO ARE HIV POZ AND HAVE BEEN EXPOSED TO HPV.
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I totally understand what you're dealing with. I had these same lesions removed last month and was so not ready for the recovery. My doctor says that I'll probably need to have them checked yearly and continue to have them removed. I wasn't even able to leave the house for 2 weeks and even after that, I regularly had little "accidents".
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Sorry to hear that you are going through this as well. It's not good - but I suppose it is necessary to seek help - well, I know it is necessary to be treated - but it is a hard thing to face...
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I used to see Dr Bolan at CPMC in San Francisco before he moved to So CA.
Definitely a great doctor and always on the cutting edge. Hope you get in to see him soon. hugs, Steve
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oh my gosh, I've never read about so many assholes, kidding fellows! I thank you all for shareing. It's time for me to Pukker up, as it were. Seeing as so many of you have gone before me, I feel a little calmer about the process. Thanks Guys.
Bertram.
Keeper of the Gnomne