Author Topic: HPV, Anal Warts, Anal Cancer (Read 18052 times)

bruceinerwin · « **on:** May 22, 2012, 05:00:55 pm »

Just had surgery Thursday May 17th 2012 and I can say it is the most horrible thing I have ever gone through. My doctor wasn't able to remove all of them during this surgery. I will need another surgery very soon. Sadly this is going to a life long battle for me. HIV and now HPV. My doctor says that if it isn't cancer this time and he highly suspects it is cancerous, that it will eventually become cancerous. He said that the rapid growth of the warts leads him to tell me that. I have only been diagnosed since March. But there was a sense of urgency to remove the warts. The pain of the surgery is almost more than I can handle. I usually have a very high tolerance for pain. On a scale of 1 to 10, it is a 10+. Bowel Movements are akin to trying to pass shards of glass. The pain is so bad that if I could throw up I would. Sorry for scaring people. I just want to let people what they are in for. I will probably have to have this surgery every year for the rest of my life. It saddens me that there is really so little information about this that is useful. It also saddens me that it is a preventable infection, but like the early days of HIV, it is so taboo, that no one talks about it. Sadly people are dying from preventable and curable cancers because HPV, Anal Warts, Cervical Warts, Genital Warts in general are a sexually transmitted infection. Maybe we should bring back an old phrase from the early days of the HIV/AIDS pandemic. SILENCE=DEATH!

bruceinerwin · « **Reply #1 on:** May 22, 2012, 05:03:20 pm »

I have also started a video blog on YouTube. Please check it out. Offer advice to others. Share your videos. Videos and comments are automatically approved. I do not censor, but I do ask that you be respectful to others.

http://www.youtube.com/user/HPVandME1971/videos

jkinatl2 · « **Reply #2 on:** May 22, 2012, 05:17:01 pm »

Are you on meds? What's your viral load?

I ask because when I had warts removed (I am familiar with the pain, and it does indeed pass - pun intended) I noticed a direct correlation with my viral load and recurrence. I have not needed additional surgeries in over ten years, but there was a five year span of time when I was under the knife/laser once a year for them.

Welcome to the forums, by the way. You will notice we talk about things like HPV and the like all the time. We are far from silent. Actually, you can't get us to shut up about it.

Matty the Damned · « **Reply #3 on:** May 22, 2012, 05:17:42 pm »

Bruce,

Welcome to the Forums.

Tell me, in this video: http://www.youtube.com/watch?v=L_4VwSRO-8E are you actually sitting on the lav while you're recording?

I hope so.

MtD

Miss Philicia · « **Reply #4 on:** May 22, 2012, 05:38:56 pm »

I had anal warts treated several times in 1998. Sure, they took a while to get rid of and eventually I had to have surgery but it was nothing as dire as what you are describing (not a glorious experience by any stretch, nor the first bowel movement, just not as over the top as what you just stated). And contrary to what your doctor seems to be saying I've not had a recurrence of them since then, or 14 years.

Anyway, welcome to the forums and sorry your experience was so difficult.

bruceinerwin · « **Reply #5 on:** May 22, 2012, 05:40:09 pm »

Quote from: jkinatl2 on May 22, 2012, 05:17:01 pm

Are you on meds? What's your viral load?

I ask because when I had warts removed (I am familiar with the pain, and it does indeed pass - pun intended) I noticed a direct correlation with my viral load and recurrence. I have not needed additional surgeries in over ten years, but there was a five year span of time when I was under the knife/laser once a year for them.

Welcome to the forums, by the way. You will notice we talk about things like HPV and the like all the time. We are far from silent. Actually, you can't get us to shut up about it.

I am on meds. I take Atripla. I have been on the meds in Atripla for about 10 years. My last CD4 was 780 and I have been undetectable since 2002. I have never missed a dose of my meds since I was diagnosed. I guess what has alarmed me the most is that after surgery, my doctor said he got as many as he could this time and that I will need more surgery to get the rest. I talked to my ID doctor and he seemed alarmed about my HPV diagnosis. For some odd reason I could not get anyone of my doctors (Primary Care, Infections Disease, Gastroenterologis, Colorectal), to tell me what sub type of HPV it is that I have. All everyone of them would say is that the warts had to be removed as soon as possible because they cause anal cancer. When I was examined by the surgeon, he told me that there were more lesions in my anal canal than he realised based on the results of my colonoscopy. He said it appeared that they had grown quite rapidly since March. He told me that I will need multiple surgeries to remove them all. But what has me disturbed is that no one will tell me if they suspect it is cancer. I will get the results of the pathology this Friday May 25th 2012. I know that the lesions had to be removed. I understand that. If they didn't suspect cancer, then why the urgency. So far none of my doctors will tell what they really think.

Now don't get me wrong. I have a team of GREAT doctors. I adore my ID and GP doctors. But sometimes I just get the feeling they are trying to spare my feelings and try not to worry me.

bruceinerwin · « **Reply #6 on:** May 22, 2012, 05:41:48 pm »

Quote from: Matty the Damned on May 22, 2012, 05:17:42 pm

Bruce,

Welcome to the Forums.

Tell me, in this video: http://www.youtube.com/watch?v=L_4VwSRO-8E are you actually sitting on the lav while you're recording?

I hope so.

MtD

Yes in one of the videos I was on the toilette. I was in between bouts of eliminating the shards of glass.

Matty the Damned · « **Reply #7 on:** May 22, 2012, 05:45:01 pm »

Quote from: bruceinerwin on May 22, 2012, 05:41:48 pm

Yes in one of the videos I was on the toilette. I was in between bouts of eliminating the shards of glass.

Excellent. ^_^

About posting a video whilst you're perched on the brasco, not the shitting glass thing.

That sucks. I'm prone to bouts of anal herpes and that always makes backing one out a grim experience. Not on the scale you've experienced of course.

It's things like these which make one appreciate the value of a good poo, I think. I always feel like I can rule the world after a well formed movement.

Best regards,

MtD

Miss Philicia · « **Reply #8 on:** May 22, 2012, 05:49:07 pm »

Are we confusing warts with dysplasia here? Not to mention an colonoscopy goes way up in your colon, it doesn't show anything of the first 2" of the anal canal where warts and dysplasia are.

bruceinerwin · « **Reply #9 on:** May 22, 2012, 05:50:14 pm »

Quote from: Miss Philicia on May 22, 2012, 05:38:56 pm

I had anal warts treated several times in 1998. Sure, they took a while to get rid of and eventually I had to have surgery but it was nothing as dire as what you are describing (not a glorious experience by any stretch, nor the first bowel movement, just not as over the top as what you just stated). And contrary to what your doctor seems to be saying I've not had a recurrence of them since then, or 14 years.

Anyway, welcome to the forums and sorry your experience was so difficult.

I just suspect something more sinister going on in my body. I am still having some bleeding since the surgery and the bowel movements are just as painful as the first one. I don't avoid having a bowel movement because I know I have to get the waste out and the stool softeners help out a lot. The reason I suspect something more sinister is going on, is because the evasiveness of my doctors to answer me when I ask them directly if they think it could be anal cancer. Not to mention their urgency to get me into surgery to remove the lesions. I was given several hints that it could be cancer and the biggest things that sticks out is that the surgeon said Anal Cancer is near 100% curable. The conversation post surgery also made me realise something more sinister is going on.

Miss Philicia · « **Reply #10 on:** May 22, 2012, 05:53:28 pm »

It sounds to me like you have high-grade anal dysplasia lesions, not anal warts (though you probably have those as well), but it's the lesions that if they have progressed so far can lead to anal cancer. And they did an anoscopy, not a colonoscopy.

At this point, if the treatment is like mine for that, they sent stuff to a lab for biopsies. Perhaps the doctor is being invasive until those results come back.

btw: I'm about to run out to the hospital for a sleep study so I won't be able to discuss this further with you until tomorrow.

bruceinerwin · « **Reply #11 on:** May 22, 2012, 05:59:36 pm »

Quote from: Miss Philicia on May 22, 2012, 05:49:07 pm

Are we confusing warts with dysplasia here? Not to mention an colonoscopy goes way up in your colon, it doesn't show anything of the first 2" of the anal canal where warts and dysplasia are.

The colonoscopy was done because my GI doctor wanted to make sure I didn't have any disease going on in my colon that would have been causing the symptoms I was having. I should note that I was fully awake and alert during the colonoscopy. I couldn't be sedated because of a past allergy to an HIV med. Not sure what that was all about, but there was a contraindication apparently. My colon is in great shape he said and there is no evidence of disease there. He found the warts as the scope was being removed and entering my anal canal. There were biopsies done and the warts were about the size of a ball point pen head. He was the first to tell me that the warts had to be removed cause they can cause anal cancer. I got my ID doctor to look at the results as well. He echoed the same diagnosis. My GP doctor looked at the results as well and said essentially the same thing. It was when my colorectal surgeon examined me, that I found out that 4 of the warts had grown into about 2 cm lesions. I think that their sense or urgency lead them to suspect that something more was going on than just run of the mill anal warts. Also none of the warts were external. They are all well within my anal canal.

northernguy · « **Reply #12 on:** May 22, 2012, 08:17:35 pm »

First, let me say I feel your pain. But there are a few things I'm wondering about?

Here there is an Anal Dysplasia Clinic as part of the HIV Centre for Excellence, which I gather is one of the few in North America. Since I've had warts I'm enrolled in an every six month monitoring program. From what I've been told it is not a given all warts progress to cancer. Smaller warts they generally do not remove but merely monitor and biopsy. If/when the warts get larger they use Infrared Coagulation to remove them. This is a kind of laser that burns off the wart and skin just below. All I usually feel is a little warmth, and (touch wood) the recovery is generally painless. I strongly suggest all who are have wart removal recommended ask if this option is available.

J.R.E. · « **Reply #13 on:** May 22, 2012, 08:37:26 pm »

Hello Bruce,

Welcome to the forums, and thanks for sharing the videos.

I had external warts removed, and besides having shingles on a few occasions, this was also one of the most painful, experiences I went through, so I understand somewhat what you're going through, even though mine were all external.

It took probably close to about a week and a half, for this mess to completely heal up. Once, the healing started, it moved along quite quickly. I think it's been almost 4 or 5 years since I had them removed, and all has been fine since. Since that time I have also had a colonoscopy, had a polyp removed, that was not a problem.

I had several clusters of the warts, around and very close to the anus. After trying prescription creams , and wart removers, surgery was the final thing that removed them.

Have you tried stool softeners, to help lesson the pain during a bowel movement. I had to use them.

Sending healing energy your way.

Ray

surf18 · « **Reply #14 on:** May 22, 2012, 08:50:49 pm »

Yea I second and third the stool softeners! My first surgery I didn't listen and use them and man o man, yep I know the pain.Wow!
The last surgery I had I used the softeners, way better.

bruceinerwin · « **Reply #15 on:** May 22, 2012, 10:44:28 pm »

Quote from: northernguy on May 22, 2012, 08:17:35 pm

First, let me say I feel your pain. But there are a few things I'm wondering about?

Here there is an Anal Dysplasia Clinic as part of the HIV Centre for Excellence, which I gather is one of the few in North America. Since I've had warts I'm enrolled in an every six month monitoring program. From what I've been told it is not a given all warts progress to cancer. Smaller warts they generally do not remove but merely monitor and biopsy. If/when the warts get larger they use Infrared Coagulation to remove them. This is a kind of laser that burns off the wart and skin just below. All I usually feel is a little warmth, and (touch wood) the recovery is generally painless. I strongly suggest all who are have wart removal recommended ask if this option is available.

I did ask if the laser was an option. My doctor said that it wasn't because my warts were well within my anal canal and not near the opening. I understand that not all anal warts turn into cancer. My doctors concern was that since the warts/lesions grew so rapidly in the 2 months since I was diagnosed lead them to a sense of urgency. My warts went from the size of the head of a ball point pen to 4 of them being about 2 cm and the others doubling size. I had about 10 all together. I just find it strange that if the warts were just run of the mill warts that there was so much urgency to get them removed. I will find out the pathology on Friday when I go for my follow up.

bruceinerwin · « **Reply #16 on:** May 22, 2012, 10:53:09 pm »

Quote from: J.R.E. on May 22, 2012, 08:37:26 pm

Hello Bruce,

Welcome to the forums, and thanks for sharing the videos.

I had external warts removed, and besides having shingles on a few occasions, this was also one of the most painful, experiences I went through, so I understand somewhat what you're going through, even though mine were all external.

It took probably close to about a week and a half, for this mess to completely heal up. Once, the healing started, it moved along quite quickly. I think it's been almost 4 or 5 years since I had them removed, and all has been fine since. Since that time I have also had a colonoscopy, had a polyp removed, that was not a problem.

I had several clusters of the warts, around and very close to the anus. After trying prescription creams , and wart removers, surgery was the final thing that removed them.

Have you tried stool softeners, to help lesson the pain during a bowel movement. I had to use them.

Sending healing energy your way.

Ray

I have been taking stool softeners and mineral oil. The doctor said this would help with making bowel movements easier. I think that since my warts were all well within my anal canal, that the discomfort of passing stool was more harsh that it should have been. 4 of the lesions were about 2 cm big. That was a rapid growth from the pen sized warts that I was diagnosed with 2 months ago.

LM · « **Reply #17 on:** May 23, 2012, 12:11:17 am »

I hear ya. I underwent laser surgery for both anal fissures and HPV in November. Worst pain of my life, easily 10 out 10. I'm with shingles right now, and it doesn't come even close to it. Also, apparently the post-surgery activated an ulcerative colitis I didn't know I have, so the pain was even worse because of that. Now, over 6 months past it, I still have pain (of course, nowhere similar to the first month) but because of the colitis, that I'm still trying to solve.

And to make things worse, HPV came back. But now doc (a different one) used acid and gave me Wartec (podophyllotoxin) to try to get them off. Or else, surgery again. I'm really scared to go through surgery again.

Has anyone tried this podophyllotoxin treatment?

mikeyb39 · « **Reply #18 on:** May 23, 2012, 12:17:04 am »

i had a few warts before i was positive removed on the outside, luckily they never returned as of yet been poz almost 2 years. That sounds painful and scary i try to get my doctor to finger me everytime i visit...

northernguy · « **Reply #19 on:** May 23, 2012, 01:56:46 am »

Quote from: bruceinerwin on May 22, 2012, 10:44:28 pm

I did ask if the laser was an option. My doctor said that it wasn't because my warts were well within my anal canal and not near the opening. I understand that not all anal warts turn into cancer. My doctors concern was that since the warts/lesions grew so rapidly in the 2 months since I was diagnosed lead them to a sense of urgency. My warts went from the size of the head of a ball point pen to 4 of them being about 2 cm and the others doubling size. I had about 10 all together. I just find it strange that if the warts were just run of the mill warts that there was so much urgency to get them removed. I will find out the pathology on Friday when I go for my follow up.

Ah my misunderstanding, if they increased in size so dramatically over 2 months I can definitely see why they'd want to remove them. I know that anything as large as 2 cm they'd want to zap at my clinic, shame laser wasn't an option for you. $:-\$

My greatest fear at these bimonthly check-ups is the sensation that I'm going to take a dump when the doc squirts the vinegar up there to make the warts stand out!

spacebarsux · « **Reply #20 on:** May 23, 2012, 02:33:06 am »

Quote from: LM on May 23, 2012, 12:11:17 am

And to make things worse, HPV came back. But now doc (a different one) used acid and gave me Wartec (podophyllotoxin) to try to get them off. Or else, surgery again. I'm really scared to go through surgery again.

Has anyone tried this podophyllotoxin treatment?

Yea, I tried podphyllin about a year ago. It burned my ass like nothing I'ved felt before. Awful. The warts went away after one or two treatment sessions though. I need to get myself checked to see if they've resurfaced.

bruceinerwin · « **Reply #21 on:** May 23, 2012, 12:39:17 pm »

I only wish my warts were external. But alas they aren't. The doctor has to spread my sphincter wide open just to reach the closest one to my anal opening. I think that I am on the final end of the bleeding. I didn't have as much blood on my Tenna Pad that I had been having. I am going to try and go with out putting a pad in my underpants today. They feel like I am walking around with a diaper stuffed in my underpants. LOL. Just think, I have the fortunate luck of going through this again in a couple of months to get the rest of the warts out. YAY!!

LM · « **Reply #22 on:** May 23, 2012, 04:14:45 pm »

Quote from: spacebarsux on May 23, 2012, 02:33:06 am

Yea, I tried podphyllin about a year ago. It burned my ass like nothing I'ved felt before. Awful. The warts went away after one or two treatment sessions though. I need to get myself checked to see if they've resurfaced.

Oh, that's good to know, thanks spacebarsux. At least they disappeared, huh? Really, I bet you surgery is way more painful. I really want to avoid that again.

bruceinerwin · « **Reply #23 on:** June 11, 2012, 12:17:38 pm »

Well just wanted to give an update. It has been a while since I got my pathology results back. The doctor said he removed 10 small tumours about the size of a pea each. He said he biopsied the surrounding tissue of each tumour. The pathology showed that only the tumours contained diseased cells. It had not spread to the surrounding tissue.

My doctor said that it was partially that I had been so assertive in getting checked out thoroughly that bought me a lot of time and that I take my HIV medicines with out fail and never miss a dose. He said that a lot of HIV medicines act as a low dose Chemotherapy and that probably helped in keeping the disease in the tumours and from spreading the surrounding tissue. I was told that had I waited just 2 months longer that the diagnosis would have been completely different. I was told that the rapid growth of the tumours showed that the disease was on the verge of spreading into the surrounding tissue. I am fortunate that my doctor was able to get all of the tumours out and I won't have to go through Radiation and Chemotherapy this time.

My doctor did enter it into my medical file as being Stage 1 High Risk Anal Cancer. I guess that means I will have to be checked on a very regular basis. I was told that I can only have surgery so many times before I will have to undergo Radiation and Chemotherapy. My doctor told me that too many surgeries in my anal canal can cause damage and cause me to loose function.

My doctor told me that the tumours will grow back and that is why I will have to be checked every 6 months or sooner if I start having symptoms again. I asked what the difference was in a condyloma and it being a tumour. He said that the condylomas when I was first diagnosed didn't have any abnormal pre-cancerous cells. By the time I had my surgery the cells had changed and become abnormal and were starting to grow at a fairly rapid pace as far as anal cancer is concerned.

But as of now, I am CANCER FREE!

buginme2 · « **Reply #24 on:** June 11, 2012, 01:02:19 pm »

Great that you are cancer free, what a relief that is!

I am being treated for high grade anal dysplasia right now. I also have to go for a high Rez Anoscopy every six months at the moment until they clear.

I really hope they don't progress, the surgery sounds unpleasant.

Question for you, have you discussed getting the HPV vaccine with your doctor? It would be off label as its not approved for people already infected with HPV. However, my doctor has stated they have seen anecdotally that it is beneficial. I received 2 of the 3 shots so far and was surprised that my insurance company actually paid for it since I had the dysplasia diagnosis. May be worth at least having that discussion.

Either way, good luck, thanks for the update....this whole ass cancer is bullshit.

bruceinerwin · « **Reply #25 on:** June 11, 2012, 09:29:57 pm »

Quote from: buginme2 on June 11, 2012, 01:02:19 pm

Great that you are cancer free, what a relief that is!

I am being treated for high grade anal dysplasia right now. I also have to go for a high Rez Anoscopy every six months at the moment until they clear.

I really hope they don't progress, the surgery sounds unpleasant.

Question for you, have you discussed getting the HPV vaccine with your doctor? It would be off label as its not approved for people already infected with HPV. However, my doctor has stated they have seen anecdotally that it is beneficial. I received 2 of the 3 shots so far and was surprised that my insurance company actually paid for it since I had the dysplasia diagnosis. May be worth at least having that discussion.

Either way, good luck, thanks for the update....this whole ass cancer is bullshit.

I did ask my doctor about the HPV vaccine. He said that since I already had HPV, that it would have a negligible effect and more than likely wouldn't work at all. He said that he didn't really agree with the findings that it would work in someone who already had HPV. Not to mention even if he agreed to give it to me. My insurance wouldn't cover it because it wasn't approved for someone already infected with HPV and having a stage 1 anal cancer diagnosis.

I just figure like HIV, I have HPV and it isn't going away so I might as well deal with it. LOL All in all the surgery process and healing wasn't bad with the exception of the bowel movements. I do still have some spotty bleeding from time to time. But it isn't bad and usually stops after a good sitz bath.

tednlou2 · « **Reply #26 on:** June 12, 2012, 12:19:45 am »

I'm so happy to hear you're cancer free. That is great news!

I just had an appointment with my colorectal doc, to look at a fissure I have. Once again, I asked about anal paps. And, once again, I was told I'm not going to find anyone here doing them. So, I asked about the high resolution anoscopy. He dismissed it, saying I don't need to worry about that. He said I have never had anal warts. He is suppose to be one of the best colorectal docs here.

I attempted to discuss everything I've read about anal cancer on the rise, especially with people who have HIV. And, I thought many of the strains that cause anal warts often aren't responsible for cancer, so not ever having anal warts shouldn't be a factor about getting screened. He just wanted to discuss a surgery for the fissure. While the fissure is occasionally a pain in the ass (pun intended), it isn't that life altering yet where I would want to be put under and have my sphincter cut. I went in, because they wanted me to come in for a follow up. But, I mainly wanted to discuss the anal dysplasia/cancer issue. It is frustrating to read we should be screened, but can't find docs to do it.

Edited for spelling

buginme2 · « **Reply #27 on:** June 12, 2012, 01:04:26 am »

The University of California San Fransico maintains a list of providers who are trained in and perform High Resolution Anoscopy's.

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

There site also has a lot of info about screening, treatment, and HPV infection.

Also, warts and anal dysplasia are not the same thing. I've never had warts before but had dysplasia.

Oceanbeach · « **Reply #28 on:** June 12, 2012, 05:32:59 pm »

Hey Bruce,

Welcome to the Forums. I had an IRC procedure in March or April at UCSF. My Oncologist is Dr. Berry, whose name is at the top of the list in the link Bugs just posted. I had an anal swab during my appointment with my Primary Provider at the UCSF Positive 360 Clinic, also in San Francisco.

UCSF has trained the finest physicians in the world for 125 years, I got the best of the best. My ID Doc recommended an anal exam, commented that I had a slight positive in the swab test, I made an appointment for an exam at the Anal Neoplasia clinic. There was no urgency and I had a 3 month wait for the appointment which in itself told me in advance, I did not have cancer. Dr. Berry has a nurse named Donna who has been with the clinic for a long time and really gets things done.

Before and after the exam, Donna emailed information from both UCSF and The Center For Disease Control which fully described every detail. Dr. Berry was training an Oncologist from India who was going to train other doctors when he returned home. I was asked if he could be present during the exam. Two doctors for the price of ONE, of course! I declined the invitation to view the exam on the monitor. Three tissue samples were taken and biopsied, there was no cancer but still the possibility in the future. An IRC procedure was recommended and I had the option to schedule an appointment or blow the whole thing off.

Nurse Donna called with a prescription of (5) 1mg. Lorazepam, a mild seditive and said to find someone to take me to the clinic and drive me home. My young life was a non stop party so I told her the 1 mg. was the equivalent to baby aspirin and I could drive on that dosage if needed. I was wrong on that count...

The day of the IRC procedure, I took the 1 Lorazepam, 1 hour before arrival at the clinic and 1 an hour later. I told a Nurse it wasn't enough and I was terrified. Dr. Berry heard my concerns and offered to be extra gentle.

I was aware of my surroundings during the procedure but felt on pain and all of a sudden, Dr. Berry said I could go now and gave me his pager number for any emergencies.

I remember seeing my friend in the waiting room but not getting to the car... All of a sudden, we were at the pharmacy in the Castro, my friend got back into the car with a package of stool softener and a big bottle of Vicodin. Still have most of the pain pills, as I didn't experience the pain most others have talked about...

It's all in preparation:
sedatives, stool softener, moist wipes, and Vicodin. During the healing process, soaking in a tub was recommended so I used Lavender Bath Crystals. It doesn't have to be side splitting pain.

Have the best day
Michael

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Author Topic: HPV, Anal Warts, Anal Cancer (Read 18052 times)