Got diagnosed with anal cancer caused by HPV

Chris Ptown

I had a wart that had fissured removed two weeks ago and my doctor said it was cancer. He thinks some cancer might be in the anal canal. He said its treatable with chemo and radiation. I have an appt on Tuesday with the radiation doctor, a catscan and an oncologist. I am 48 yrs old and very scared. Can anyone tell me if they have had this and ...i dont even know what I am asking. I clearly am not strong and for a guy am acting like a baby. Just really scared.

z

Chris
Hello and welcome, sorry you had to find us. You are not a baby, and have every right to be scared. I also had hpv in the 2-3 cm anal tumor. I had the standard chemo/radiation treatment that has a 80% cure rate. Notice I said cure. The 1st thing the general surgeon told me was this is a curable cancer. I was staged T2NOMO and completed treatment on 6-30-09 and I am doing great, as a matter a fact I just had a follow up dre (digital rectal exam) with the professor at the teaching hospital, and he said I was stone cold normal and there is no scar tissue. You will be fine and I know its all overwhelming, we have all felt that. Please ask anything you want, and remember to breath. Keep us posted. Lori

Chris Ptown

z said:

Chris
Hello and welcome, sorry you had to find us. You are not a baby, and have every right to be scared. I also had hpv in the 2-3 cm anal tumor. I had the standard chemo/radiation treatment that has a 80% cure rate. Notice I said cure. The 1st thing the general surgeon told me was this is a curable cancer. I was staged T2NOMO and completed treatment on 6-30-09 and I am doing great, as a matter a fact I just had a follow up dre (digital rectal exam) with the professor at the teaching hospital, and he said I was stone cold normal and there is no scar tissue. You will be fine and I know its all overwhelming, we have all felt that. Please ask anything you want, and remember to breath. Keep us posted. Lori

thank you
Lori thank you so much. My sister is coming on Tuesday to take me to my appts and i am grateful for that. I am so glad you are OK and thank you again for making me feel better today. I have been having such a hard time sleeping and the three words that keep going through my head are cancer, radiation and chemo. Your message is definitely comforting to me, thank you!!!

z

Chris Ptown said:

thank you
Lori thank you so much. My sister is coming on Tuesday to take me to my appts and i am grateful for that. I am so glad you are OK and thank you again for making me feel better today. I have been having such a hard time sleeping and the three words that keep going through my head are cancer, radiation and chemo. Your message is definitely comforting to me, thank you!!!

Chris
I am so glad you'll have your sister, it really helps to have someone there with you at the appointments to listen to the dr also, as I know initially its overwhelming and hard to hear everything thats said. Once you get started you will see that you can do this and the treatment only last a little over a month. We are fortunate that it is such a short treatment time, but aggressive enough to cure us. Keep us posted and I'm sure more survivors will be chiming in to welcome you and answer any questions you have. Lori

Chris Ptown

z said:

Chris
I am so glad you'll have your sister, it really helps to have someone there with you at the appointments to listen to the dr also, as I know initially its overwhelming and hard to hear everything thats said. Once you get started you will see that you can do this and the treatment only last a little over a month. We are fortunate that it is such a short treatment time, but aggressive enough to cure us. Keep us posted and I'm sure more survivors will be chiming in to welcome you and answer any questions you have. Lori

Lori thank you again!
You have no idea how good it feels to read your comments, thank you so much. I uploaded a picture of me and my Boston Terrier but it doesnt seem to be in the same area like yours is..how do i put the picture with my name so people can see who i am when i post like yours does? Thanks.

z

Chris Ptown said:

Lori thank you again!
You have no idea how good it feels to read your comments, thank you so much. I uploaded a picture of me and my Boston Terrier but it doesnt seem to be in the same area like yours is..how do i put the picture with my name so people can see who i am when i post like yours does? Thanks.

Picture
Chris, If you go to your profile and hit edit, it will have picture, click on that, and then I think you browse to find your picture and then download it. I hope that works. I want to see you and your pet. I love dogs, I now have cats, all my dogs have passed from old age. My cats sleep about 18 hours a day and I'm gone a lot, so that works out well. The dog in my picture is a friend of mines. He looks like hes smiling and it makes me laugh. I hope that you can get your picture in there. Lori

mxperry220

Do Not Fear The Unknown
Your reaction is normal. I too am a male who was diagnosed with anal cancer in November 2008. I found all the testing leading up to the treatments was the most stressful for me. I did not sleep much during the testing peiod which lasted about one week. Once the tratments stareted I slept much better due to the diminished stress of the unknown. I received the standard radiation and chemo treatments for anal cancer. I had 30 rounds of radiation treatments and 2 weeks of chemo. The chemo used was mytomycin and 5FU. The 5FU was a pump pack inserted to a port implanted in my chest for ease of administering both chemos. The pump pack was worn 24/7 for 4 days. The mytomycin was administered via the port in the chemo center. Even though the port is a surgical procedure it was no big deal. My chemo doctor told me if I had to have cancer this is one of the "best" to have because it responds well to the treatments and they have more success curing this type cancer versus other type of cancers. If I remember correctly the port was taken out 8 weeks after my final treatments.

I drank Ensure during treatments to make certain I had all the vitamins I needed. My radiation burns were minimal. I ate toast and ice cream during treatments. My diet was rather bland due to diaherrea issues. I did not have any blisters like the doctors described. The doctors said I had extra healthy skin. Hopefully this will be you case.
Mine was more like a sunburn without blisters. This was not only on my buttocks but also in the groin area. I used Aquaphor ointment to apply to the radiation burns. I tried several other ointments but this seemed the best for me. Also I tried several pain meds but found Advil worked the best for me.


After treatments I bought thin sanitary pads and put in my underwear because of seepage. This lasted for about 6 weeks. Diaherrea was an issue for several weeks during/after treatments. I took Immodium which helped me. Sam's sells the gereric which is much cheaper than Immodium brand. I wore briefs rather than boxers during this period bacause the sanitary pad stayed in place better with briefs.

I have more bowel movements post treatment. My normal BMs prior to treatment was 2 daily. I now have 3-4 BMs daily. I take 3 immodiums daily. The doctors said this was O.K. and would not cause any problems. I started eating Activia daily within the last week and this had helped.

After treatments you will probably be seeing your chemo/radiologist every 90 days for the first 1 1/2-2 years. I am almost 3 years post diagnosis and see my doctors every six months.

I found talking with the patients in the oncology area was a big help for me mentally. I realized many of them were much worse than me. Hope some of this helps and puts your mind a little more at ease. Remember to keep a positive mindset during this time.

Chris Ptown

mxperry220 said:

Do Not Fear The Unknown
Your reaction is normal. I too am a male who was diagnosed with anal cancer in November 2008. I found all the testing leading up to the treatments was the most stressful for me. I did not sleep much during the testing peiod which lasted about one week. Once the tratments stareted I slept much better due to the diminished stress of the unknown. I received the standard radiation and chemo treatments for anal cancer. I had 30 rounds of radiation treatments and 2 weeks of chemo. The chemo used was mytomycin and 5FU. The 5FU was a pump pack inserted to a port implanted in my chest for ease of administering both chemos. The pump pack was worn 24/7 for 4 days. The mytomycin was administered via the port in the chemo center. Even though the port is a surgical procedure it was no big deal. My chemo doctor told me if I had to have cancer this is one of the "best" to have because it responds well to the treatments and they have more success curing this type cancer versus other type of cancers. If I remember correctly the port was taken out 8 weeks after my final treatments.

I drank Ensure during treatments to make certain I had all the vitamins I needed. My radiation burns were minimal. I ate toast and ice cream during treatments. My diet was rather bland due to diaherrea issues. I did not have any blisters like the doctors described. The doctors said I had extra healthy skin. Hopefully this will be you case.
Mine was more like a sunburn without blisters. This was not only on my buttocks but also in the groin area. I used Aquaphor ointment to apply to the radiation burns. I tried several other ointments but this seemed the best for me. Also I tried several pain meds but found Advil worked the best for me.


After treatments I bought thin sanitary pads and put in my underwear because of seepage. This lasted for about 6 weeks. Diaherrea was an issue for several weeks during/after treatments. I took Immodium which helped me. Sam's sells the gereric which is much cheaper than Immodium brand. I wore briefs rather than boxers during this period bacause the sanitary pad stayed in place better with briefs.

I have more bowel movements post treatment. My normal BMs prior to treatment was 2 daily. I now have 3-4 BMs daily. I take 3 immodiums daily. The doctors said this was O.K. and would not cause any problems. I started eating Activia daily within the last week and this had helped.

After treatments you will probably be seeing your chemo/radiologist every 90 days for the first 1 1/2-2 years. I am almost 3 years post diagnosis and see my doctors every six months.

I found talking with the patients in the oncology area was a big help for me mentally. I realized many of them were much worse than me. Hope some of this helps and puts your mind a little more at ease. Remember to keep a positive mindset during this time.

thank you mxperry220
thank you so much for sharing your experience with me... i am trying to be positive and just keep getting upset..i wish Tuesday would get here soon... thank you so much i am glad i signed on to this site today...wonderful people helping out strangers... pretty great

Ann_i_

Chris Ptown said:

thank you mxperry220
thank you so much for sharing your experience with me... i am trying to be positive and just keep getting upset..i wish Tuesday would get here soon... thank you so much i am glad i signed on to this site today...wonderful people helping out strangers... pretty great

Hi
mxperry220 seems to have great advice!! (Being female myself, I found most of what he said to be my experience as well.)

I wish I had known about the cream early on in my radiation treatments, instead of only after they saw the skin reaction and asked me how the skin was feeling.(I just figured it was normal and dealt with it the best I could.) The cream is a godsend, ask for it early and use it as directed. Not before treatments but after. I would go back to the dressing room after treatment and apply it immediately.)

I can't really think of what to add to mxperry's advice (aside from the above.)

But I'd like to add my philosophy for life. And it got me through this and continues to see me through this.

I worry over what I can change and how to change it. What I already know I can't change, I honestly 'do my best' not to worry over. (That doesn't mean I don't worry, I just try really hard to remember that I will change what I can, and I will do my best to deal with what I can't change.)

Can I change test results that haven't happened yet? No (Will worrying about said test results change said test results? No) What I waited for was the diagnosis that would get me on the path to recovery and that would end my pain. (I needed a goal, once I had the goal, I aimed for it and I'm still going down the goal path to get to my end goal.)

I'm a worriwart by nature. This has been hard for me to grasp and apply in my life. But I keep trying to make it my mantra. Change what I can, and do my best to set, meet, and exceeds goals of what I can't change. (I also have a negative outlook and always look to the worst case scenario that could happen, oddly, this has helped me, because most of what's happened to me, well, it could have been worse from my perspective, so I can deal with what I've got.)


On a side note: Someone here mentioned 'breathe'

My daughter came home from school one day with this written on her wrist. I asked her why? (She's 15 and a sophomore in high school.) She said a friend caught her while stressed out and told her to breathe, then wrote it on her wrist to remind her throughout the day.

Later, another friend saw it, grabbed her hand, flipped it over and said, "Why?"

My daughter: "It's good advice."
Her friend: "No, it isn't!"
My daughter: "No, then YOU stop!"

Chris Ptown

Ann_i_ said:

Hi
mxperry220 seems to have great advice!! (Being female myself, I found most of what he said to be my experience as well.)

I wish I had known about the cream early on in my radiation treatments, instead of only after they saw the skin reaction and asked me how the skin was feeling.(I just figured it was normal and dealt with it the best I could.) The cream is a godsend, ask for it early and use it as directed. Not before treatments but after. I would go back to the dressing room after treatment and apply it immediately.)

I can't really think of what to add to mxperry's advice (aside from the above.)

But I'd like to add my philosophy for life. And it got me through this and continues to see me through this.

I worry over what I can change and how to change it. What I already know I can't change, I honestly 'do my best' not to worry over. (That doesn't mean I don't worry, I just try really hard to remember that I will change what I can, and I will do my best to deal with what I can't change.)

Can I change test results that haven't happened yet? No (Will worrying about said test results change said test results? No) What I waited for was the diagnosis that would get me on the path to recovery and that would end my pain. (I needed a goal, once I had the goal, I aimed for it and I'm still going down the goal path to get to my end goal.)

I'm a worriwart by nature. This has been hard for me to grasp and apply in my life. But I keep trying to make it my mantra. Change what I can, and do my best to set, meet, and exceeds goals of what I can't change. (I also have a negative outlook and always look to the worst case scenario that could happen, oddly, this has helped me, because most of what's happened to me, well, it could have been worse from my perspective, so I can deal with what I've got.)


On a side note: Someone here mentioned 'breathe'

My daughter came home from school one day with this written on her wrist. I asked her why? (She's 15 and a sophomore in high school.) She said a friend caught her while stressed out and told her to breathe, then wrote it on her wrist to remind her throughout the day.

Later, another friend saw it, grabbed her hand, flipped it over and said, "Why?"

My daughter: "It's good advice."
Her friend: "No, it isn't!"
My daughter: "No, then YOU stop!"

Ann i thank you!
thank you so very much...i am a worrier too and so stressed right now...i just want tuesday to come so they can tell me about the catscan and how much cancer there is and what has to be done etc...thank you for helping me by writing on here..it means a lot

mxperry220

Chris Ptown said:

Ann i thank you!
thank you so very much...i am a worrier too and so stressed right now...i just want tuesday to come so they can tell me about the catscan and how much cancer there is and what has to be done etc...thank you for helping me by writing on here..it means a lot

No cream when you have radiation
Make certain to have no ointment on you where they radiate. The doctors cautioned me on that. It is fine to apply the ointment after radiation but not before. I did not question why but think it might cause the radiation to burn your skin tissue easier if the ointment is on during the radiation treatment.

mp327

Hi Chris!
I'm sorry you have had to find yourself here due to your diagnosis, but you'll get lots of support here from others who have already been where you're about to go. Like Lori said, anal cancer has a high cure rate and while the treatment is certainly no fun, it is short-term and very doable. I know you have lots of questions right now and very few answers, so I would suggest that you visit the website for the National Comprehensive Cancer Network (NCCN.org) and register. Then you'll be able to view the latest guidelines for treatment of this cancer. If you can print out a couple copies that would be great, as you may want to refer to them often. Also, take a copy to your doctor so that you and he/she both understand what the treatment protocol is. Also, the HPV and Anal Cancer Foundation has a great website with lots of good info.

As you get more information regarding your upcoming treatment, start date, etc., please let us know. We will be here with you every step of the way to support you, answer questions, and listen. You are not alone in this! I understand the scared part and that's normal. Try to stay positive and everything will be okay!

mxperry220

Chris Ptown said:

thank you mxperry220
thank you so much for sharing your experience with me... i am trying to be positive and just keep getting upset..i wish Tuesday would get here soon... thank you so much i am glad i signed on to this site today...wonderful people helping out strangers... pretty great

Another Bit of Advice
Chris,
I found a lot of emotional relief by lookig at my daily radiation as a job rather than a treatment. Even though I am retired (61 years old-"old man"---HAHAHA) I looked at this as my job each day during treatment. For me this was a little comfort rather than dreading my daily treatment.

BTW prognosis so far so good. The doctors have found no signs of cancer so far. I am scheduled for a colonoscopy in November(3 years after diagnosis). I had another coloscopy 1 year after diagnosis. I always get nervous before appointments or tests not knowing what the results may be. I think this is a norm as I have read comments from many others on this site that have this same anxiety before tests and appointments. My doctors say once I reach the three year mark post diagnosis the chance of recurrance is greatly reduced.

Also, ask your doctors what stage your cancer is. Then have them explain what that stage means. You can go to the American Cancer website and they also have this information. Stage 1 and 2 means the cancer has not spread and is localized in the area of the tumor only (not in lymph nodes or other organs).

Phoebesnow

mp327 said:

Hi Chris!
I'm sorry you have had to find yourself here due to your diagnosis, but you'll get lots of support here from others who have already been where you're about to go. Like Lori said, anal cancer has a high cure rate and while the treatment is certainly no fun, it is short-term and very doable. I know you have lots of questions right now and very few answers, so I would suggest that you visit the website for the National Comprehensive Cancer Network (NCCN.org) and register. Then you'll be able to view the latest guidelines for treatment of this cancer. If you can print out a couple copies that would be great, as you may want to refer to them often. Also, take a copy to your doctor so that you and he/she both understand what the treatment protocol is. Also, the HPV and Anal Cancer Foundation has a great website with lots of good info.

As you get more information regarding your upcoming treatment, start date, etc., please let us know. We will be here with you every step of the way to support you, answer questions, and listen. You are not alone in this! I understand the scared part and that's normal. Try to stay positive and everything will be okay!

Welcome Chris
Sorry you have to be here. Theresa Mayhew wrote a book about anal cancer that I found to be really helpful. Sounds like u have received some good advise from mx Perry. Maybe it is a little easier on men as u have thicker skin. Find out everything u can about anal cancer before Tuesday when u meet with the docs, I would also get a second opinion from an outside cancer center. Knowledge is everything now. Goog luck to you.

Carrol

shirlann54

Chris
I understand how you feel.I was scared too and i did act like a baby. I could'nt sleep.All i could think about was the word cancer.But when i started my treatments i don't feel as scared.You will start sleeping better .you will find out you are stronger then you think.I,m 57 I got done with my treatments in Jan 2011.I had the chemo and radiation .After your radiation treatments put your cream on that will makes it feel better.But dont have any on when you go in for your radiation treatments your Dr will tell you that.I got like a sun burn.I didn't get a real bad burn.I have a dog too she stayed by my side she know i was sick. When i would lay down she was as close to me has she could get.We just love her.You will get a lot of support here.We will be here for you. shirley

Chris Ptown

mp327 said:

Hi Chris!
I'm sorry you have had to find yourself here due to your diagnosis, but you'll get lots of support here from others who have already been where you're about to go. Like Lori said, anal cancer has a high cure rate and while the treatment is certainly no fun, it is short-term and very doable. I know you have lots of questions right now and very few answers, so I would suggest that you visit the website for the National Comprehensive Cancer Network (NCCN.org) and register. Then you'll be able to view the latest guidelines for treatment of this cancer. If you can print out a couple copies that would be great, as you may want to refer to them often. Also, take a copy to your doctor so that you and he/she both understand what the treatment protocol is. Also, the HPV and Anal Cancer Foundation has a great website with lots of good info.

As you get more information regarding your upcoming treatment, start date, etc., please let us know. We will be here with you every step of the way to support you, answer questions, and listen. You are not alone in this! I understand the scared part and that's normal. Try to stay positive and everything will be okay!

thank you mp327!
i cant believe how nice you and everyone else is to take the time for me...thank you so much

Chris Ptown

Phoebesnow said:

Welcome Chris
Sorry you have to be here. Theresa Mayhew wrote a book about anal cancer that I found to be really helpful. Sounds like u have received some good advise from mx Perry. Maybe it is a little easier on men as u have thicker skin. Find out everything u can about anal cancer before Tuesday when u meet with the docs, I would also get a second opinion from an outside cancer center. Knowledge is everything now. Goog luck to you.

Carrol

thank you phoebesnow
thanks very much for the information on the book

Chris Ptown

shirlann54 said:

Chris
I understand how you feel.I was scared too and i did act like a baby. I could'nt sleep.All i could think about was the word cancer.But when i started my treatments i don't feel as scared.You will start sleeping better .you will find out you are stronger then you think.I,m 57 I got done with my treatments in Jan 2011.I had the chemo and radiation .After your radiation treatments put your cream on that will makes it feel better.But dont have any on when you go in for your radiation treatments your Dr will tell you that.I got like a sun burn.I didn't get a real bad burn.I have a dog too she stayed by my side she know i was sick. When i would lay down she was as close to me has she could get.We just love her.You will get a lot of support here.We will be here for you. shirley

thank you shirlann54
i cant sleep either...my sister is coming tomorrow from Marblehead, MA and staying overnight then going with me to my appts... even after everything all you nice people have said i am still so scared...i am clearly not a strong person...thank you so much for your kind words and your wonderful support!

Angela_K

mp327 said:

Hi Chris!
I'm sorry you have had to find yourself here due to your diagnosis, but you'll get lots of support here from others who have already been where you're about to go. Like Lori said, anal cancer has a high cure rate and while the treatment is certainly no fun, it is short-term and very doable. I know you have lots of questions right now and very few answers, so I would suggest that you visit the website for the National Comprehensive Cancer Network (NCCN.org) and register. Then you'll be able to view the latest guidelines for treatment of this cancer. If you can print out a couple copies that would be great, as you may want to refer to them often. Also, take a copy to your doctor so that you and he/she both understand what the treatment protocol is. Also, the HPV and Anal Cancer Foundation has a great website with lots of good info.

As you get more information regarding your upcoming treatment, start date, etc., please let us know. We will be here with you every step of the way to support you, answer questions, and listen. You are not alone in this! I understand the scared part and that's normal. Try to stay positive and everything will be okay!

Information
Being overwhelmed and frightened is so normal. I was in shock I think for days after the initial diagnosis. I contacted a couple of trusted, level headed close friends in the medical field who researched this cancer and treatment protocol for me and fed me information at first because there was SO much our there, good info and bad info (on the internet) I didn't want to go into information overload. My brain and my spirit just couldn't handle it all at first. This helped me TREMENDOUSLY.

Chris, know that you WILL get through this. Know that you WILL be okay. Staying positive is half the battle.

We're here for you when you need us.

Many blessings, Angela

Ann_i_

Chris Ptown said:

thank you shirlann54
i cant sleep either...my sister is coming tomorrow from Marblehead, MA and staying overnight then going with me to my appts... even after everything all you nice people have said i am still so scared...i am clearly not a strong person...thank you so much for your kind words and your wonderful support!

Fear of the unknown
That's what has you in its clutches.

It's always scarey until you get the facts. Right now you aren't sure of anything, and you don't have control. (We all get scared in the face of that.)

Once you are armed with information and facts, then you will tackle what needs tackling and take each day as it comes, and when you get to the other side(finish treatments), you'll realize you did it with strength.

You'll be scared of Radiation until you have your first treatment, and see what it's like. (My favorite radiation technicians were a male and female team, they had my sense of humor and nothing was taboo. When the male radiation technician took pictures of my pelvic region once about three quarters of the way through treatments, we had an interesting short conversation:

Me: Are those for personal or professional use?
Him: These ones are for professional use.
Me: Oh, So you'll let me know when you take the ones for your personal use then?!
(The female technician couldn't help laughing: "She's got your number!")

You'll be scared of your first chemo treatment, until you go and have it. (Chemo is a bit harder, in my opinion, because it takes a lot out of you, but you CAN do this.) My chemo nurse was awesome. Friendly, helpful, talkative, got me through it.

You'll be surprised at what you can handle and face and get through. (And don't stress yourself if you find it overwhelming and emotional as you and your sister talk to the doctors on Tuesday. It's a lot to take in at once. Just think about in advance some of the questions you will have and write them down and give them to your sister. This way, if you get emotional or feel like you can't talk without feeling overwhelmed, she can take over and get your questions answered for you.)

Angela_K

Ann_i_ said:

Fear of the unknown
That's what has you in its clutches.

It's always scarey until you get the facts. Right now you aren't sure of anything, and you don't have control. (We all get scared in the face of that.)

Once you are armed with information and facts, then you will tackle what needs tackling and take each day as it comes, and when you get to the other side(finish treatments), you'll realize you did it with strength.

You'll be scared of Radiation until you have your first treatment, and see what it's like. (My favorite radiation technicians were a male and female team, they had my sense of humor and nothing was taboo. When the male radiation technician took pictures of my pelvic region once about three quarters of the way through treatments, we had an interesting short conversation:

Me: Are those for personal or professional use?
Him: These ones are for professional use.
Me: Oh, So you'll let me know when you take the ones for your personal use then?!
(The female technician couldn't help laughing: "She's got your number!")

You'll be scared of your first chemo treatment, until you go and have it. (Chemo is a bit harder, in my opinion, because it takes a lot out of you, but you CAN do this.) My chemo nurse was awesome. Friendly, helpful, talkative, got me through it.

You'll be surprised at what you can handle and face and get through. (And don't stress yourself if you find it overwhelming and emotional as you and your sister talk to the doctors on Tuesday. It's a lot to take in at once. Just think about in advance some of the questions you will have and write them down and give them to your sister. This way, if you get emotional or feel like you can't talk without feeling overwhelmed, she can take over and get your questions answered for you.)

Good point
Ann_i_ is so right. Writing down your questions, having your sister there for another set of ears, and writing down the answers and other info that you get is so helpful. At first everything is such a whirlwind of emotion and activity, it's hard to remember to breath, much less what a provider says or doesn't say.