Second cycle

Even though during the first cycle there was almost no pain with the application of 5-FU, by the fifth day I could feel some pain and itching due to a small superficial fissure at the 6 o'clock position. Since the 9 day rest period was coming up that was enough to heal it.

As I write this, I am on the second day of the rest period after the second cycle of 5-FU and I feel somewhat more pain of burning quality. The pain is a little worse with stooling, because of this it is very important to eat a lot of fiber. I am eating brown rice, salads and supplementing with Citrucel tablets. I have not noticed any bleeding yet. This time during the 5-FU application, I also felt more burning when the cream was in, and this burning lasted the whole day during the 5th day. It was mildly uncomfortable but did not prevent me from doing my normal activities.

I hope it does not get worse with each cycle. I an supposed to see my doctor after the fifth to see if there have been improvements.

First week of treatment

So, I came back from my vacation (one year older...now I am 40!), and ready to start the 5-FU treatment. I exchanged a couple of emails with the nursing staff at my doctor's office and they told me to use the cream twice a day for 8 cycles (5 days on, 9 days off). After the fourth cycle I will have to go for a recheck to see if the cream is working. If it is working, then I will finish the 8 weeks. If not, I will stop and three months later I will have a procedure called hyfrecation (where they will burn the surface that has dysplasia). I hope it does not get to that.

So I started on a Monday, that way it is easier to remember (Monday through Friday cream goes in, Sat through the following Sunday I rest). Luckily, my husband can help me out with the cream application. The index finger of each hand has to be inserted up to 1 inch inside, at the level of the first knuckle and turned around to spread the cream to each half of the internal anal canal (the space beyond the anal muscles). Trying to do this myself would have been too hard, since I am...well...generous on my back side LOL. 

We went and got a box of nitrile gloves from a pharmacy and the next morning he wore them and I put just a 1/4 inch of the cream on each of the tips of his index fingers. He introduced them in my anus and turned them. I was worried it would hurt a lot, but it actually was not bad. I just felt a very mild burning sensation for a few minutes afterward. On the fifth day, I felt some pain when he introduced his fingers, but nothing unbearable. 

One thing I did feel was, slight headache, dizziness and nausea an hour or two after the morning application on days 4 and 5. The doctor had warned me that some people reported that. 5-FU is, after all, a chemo drug, and some must get absorbed into the circulation from the anus.

I am writing this on my second day of the resting part of the cycle, and I only feel slight itching-burning in my anus. Luckily I did not get bleeding, severe pain or frequent urgency to stool as it is described in the literature. I hope this does not mean the treatment is not working though!!

Here is a very useful link: http://analcancerinfo.ucsf.edu/

Ok, well that is the report from the first weel. I will keep you posted! Stay healthy.

Yuck...HPV

Motivation

Hi!

I am an almost 40 year old gay male and I was recently diagnosed with high grade anal dysplasia. Yup...:/. For privacy reasons I will keep identifying details out of my posts, but I hope they are still helpful.

For some time I had been reading about the increase in the incidence of anal dysplasia and cancer among the male who have sex with males population (MSM), and feeling unlucky that the HPV vaccine was not available when I was younger...and now here I am...I have it. 

Anal cancer occurs in 40 out 100000 MSM, and 80 out of 100000 MSM living with HIV, 20 and 40 times higher than the general population. Dysplasia is the previous stage of cancer. Not all dysplasias end up transforming into cancer, but the risk is much higher when it exists.

I decided to start this blog because even though there is a lot of medical info online about HPV, anal dysplasia and anal warts, I could not find testimonies of real people and their experience with treatment.

How it began

For me it all started about 6 months ago when I noticed a small bump a few millimeters inside my anus. I took a pic of it...and it looked like a wart. I had seen them before...I had a couple of them years ago but closer to my buttocks and my scrotum. Those disappeared rapidly with podophyllin treatment (a medicine you apply on the skin for several weeks). The one I am talking about was on the inner lining so I could not use that medicine. I also noticed itching, irritation and a whitish coating on the anus (?). I am not sure if that was related to the wart at the time...at first I thought it could be pinworms (yeah...I know), but took the treatment and nothing happened. Finally, I thought it could be a fungal infection, and started using terbinafine cream for a couple of weeks and fortunately the itching and white coating resolved. The wart was still there and growing though.

I started looking for a doctor who could remove that wart. I live in a relatively small town, so specialists are not abundant, and it is almost impossible to know if the doctors in this area are gay friendly. Thankfully I have the luck of having very good (and expensive) health insurance coverage, so I decided to schedule an appointment at an specialized anal dysplasia clinic in the closest major city to me. I have a medical background, and that was an advantage because I knew where to go. 

I have to admit that at the time, my main reason was aesthetic. I am sexually versatile, and that thing on my bottom was making me miss on half of the fun ;). I just could not bear the thought of somebody seeing it and being disgusted by it (even though it was very tiny, not more than 2-3 mm, I still felt it and made me self conscious).

However, I also knew from my previous research about HPV that the appearance of an anal wart could signal other significant problems further up my anus and rectum, So I went to the appointment ready for a more in depth exam. My appointment had to be rescheduled once and I only could go one month later than the original date. In the meantime, the wart started shrinking and by the day of the appointment it was barely noticeable, but I still went.

The appointment and procedure

My doctor is a very nice guy (I googled him beforehand, and was pleased to see that he works with the gay community and that he is gay himself  -even though he never said so of course-...a handsome geeky bear...sorry, I digress LOL...it was a plus, definitely). He asked me questions about my medical history, sexual preferences, and the specifics of my symptoms. Then he explained how the visit would go.

I had to lay on my left side on the examination table, with my pants and undies down of course, he elevated the table and did a rectal exam first trying to feel for obvious lumps, and the texture and consistency of my prostate. He did not feel anything abnormal. After that, he performed a PAP smear. Yes, the same thing women get to screen for cervical cancer. That was slightly uncomfortable because it is done with a pointy, edgy instrument to scrape the lining of the anus to get as many epithelial cells possible. 

The next step was to insert the high resolution anoscopy speculum. It had a camera that magnified the anal mucosa, and the images were projected on a monitor that the doctor and me could see. Nothing obvious could be identified. Following, he applied vinegar (acetic acid) with a sponge to the inside of my anal canal. The reason is that vinegar makes the areas infected with HPV and that might be showing pre-cancerous changes change to a whitish color with little red dots on them. There were at least three suspicious areas that he could see. I knew what was coming next :/.

He asked me if I would agree to him taking biopsies of those areas to send to the lab for microscopic examination, or if I wanted to wait for the Pap smear results. I knew from what I had read and what he told me then that the Pap smear could yield false negative results (which meant there was a chance I could still have something that the Pap smear did not pick up). Since I don't live close to the clinic, I decided to go ahead and have the biopsies done.

He went ahead and put some lidocaine gel to prevent pain and some more vinegar to show the areas again. It is tricky because the anal mucose is folded in many ways and once you pulled out the anoscope it could be hard to find the same spots you identified (that is why the uterine cervix in women is much easier to biopsy and treat than the anus). High resolution anoscopy is a technique with high learning curve, and there are not many places where you can find MDs trained in it, so I was very lucky. Thankfully, he went in again and found the spots rapidly. 

He asked me not to look at the monitor this time. I agreed. LOL. I asked him to turn the monitor in another direction and to let me know when he was going to take the samples so I was prepared and did not jump to the roof. He said I would only feel discomfort but not pain since that area above the lower anal canal is not innervated like the skin. He was right, only one of the biopsies was minimally painful, the others felt just like pokes. He took three samples from different quadrants. And he was done.

The pathologists were going to look for anal dysplasia changes in the samples. Dysplasia means that the HPV virus has changed the cells of that area of the anal canal into a type that does not belong there. To put it simple, cells are supposed to be smooth there, but the virus mutates the cells to be rough and rugged, and this eventually can lead to the rapid and uncontrolled growth of cancer. Dysplasia can be low-grade or high-grade. Low-grade is not considered to be associated with higher risk for cancer. Only follow up is needed for it. High-grade dysplasia is associated with a higher risk of cancer and it can be stage 2 or 3, depending on the changes they observe under the microscope.

My doctor told me that even if the results were normal, I would have to come back periodically to have another exam. It is not yet established whether anoscopy is needed as a routine screening intervention in MSM, but large population studies are underway, given the increase in anal cancer cases, specially among people living with HIV. So far, I have remained HIV negative. But since it is not yet known how many of those with high-grade dysplasia end up having developing cancer, and what factors affect the progression of cancer, they are now following all cases, to gather more information. We talked a little about treatment options, but I will say more details later.

The results and...what now?

Fast forward about a week after the visit and I got a phone call from my doctor. They had found that all of the three biopsies were high-grade anal dysplasia stage 2. That meant the problem was diffuse on my anal canal. Not cancer yet, but I was at a higher risk. It was a little overwhelming, but since we had discussed the possibilities beforehand I could maintain my cool at that moment.

He offered me treatment with 5-fluorouracil (5-FU) cream. An anticancer (chemotherapy) medication that it is being used as a first step in trying to get rid of dysplasia. It is applied with a finger inside the anal canal for several weeks. The problem is that it could be painful and some people cannot tolerate it and have to stop it. On the other hand is much less expensive, has less incidence of complications and in theory you can continue with your normal life if you can tolerate it. After all those weeks I would have to undergo another anoscopy and possibly other biopsies to see if the problem had dissapeared. Even if it does, however, I would have to be checked again because dysplasia can recur.

The other two options were:  IRC (infrared coagulation), a procedure that needs a recovery period and would have needed me to be out of work for a while, and the other was to do nothing and do periodical follow ups. The problem with the last one is that high-grade dysplasia rarely dissapears, it might never become cancer...but it will hardly go away. 

So I opted for treating with the cream. I thought about waiting, but knowing there is something dangerous inside of me would not have let me have peace of mind. On the other hand I am scared about the side effects of 5-FU and how could they disturb my daily life and work. I have recently started a new job and it would be very complicated to miss days and pay because of it. But health comes first so...I have to try.

I won't be starting the treatment right away though. I have a big trip overseas coming soon and I would have been in the middle of the treatment, and that would not have been convenient or wise. So I will start it in mid June...for 10 weeks. And follow up in September.

As I said in the beginning, I could not find any testimonies of people who had used 5-FU for anal dysplasia, so I intend to share how it is on this blog in the hopes of helping those trying to decide if it is for them.

I will write again in June! In the meantime, take care! Have safe sex and get checked out.