Newly Diagnosed

I hate that you have to be on this site but glad you found it. I am 6 1/2 years post treatment & one of the lucky ones that didnt have many problems thru treatment and the only residual problem i have now is 4-6 bowel movements a day. I had HPV positive cervical dsyplasia 30 years ago. The HPV virus caused my anal cancer. My first husband was very sexually active before we married and i am pretty sure I got the virus from him. I am blaming him anyway. I told very few that it was actually anal cancer. Most people will probably tell you to be honest about it but I didnt want to be stereotyped so i told most people and continue to tell people , it was colorectal cancer. So i didnt say colon nor rectal, but didnt say anal. Even as a female, i know people that know anything about HPV would think its because i slept around. Plus i didnt want them thinking it was caused by my husband now of 18 years.

So sorry you have a reason to join our group.  I hope you'll get lots of support and helpful information here though.  Everyone does their part to help newbies, especially if we know what they need from us, so please ask.  I am an 8 1/2 year survivor and, depending on who I'm talking to, still am hesitant to tell someone what type of cancer I had--it just depends on the line of discussion.  During treatment, it was obvious that I was undergoing treatment, so it was a little hard not to hide that I had cancer--the kind, however, was not so obvious.  Now that I'm this far along post-treatment, I have no problem talking about my cancer with anyone who will listen--a teaching moment, if you will.

I hope you'll get the best possible news on your upcoming scan and that your cancer is localized to the tumor only.  Please come here when you can and update us and ask any questions you may have.  I know this is a scary time, but you WILL get through this!  I wish you all the best and am thinking good thoughts for you!

Martha

Also I forgot to say I had a lot of achiness in my pelvis before diagnosis, found myself taking a lot of ibuprofen and Tylenol. I just thought I was getting arthritis pain. So that general achiness does not mean the cancer has spread.

while those of us KNOW you can have anal cancer without having anal sex, most of the population doesnt. And much of the population looks at anal sex as taboo. I would rather have some sympathy while going thru treatment than peoples judgement. And yes, the 50 and 60 year old ladies I work with would be quick to judge. When i had cervical dysplasia 30 years ago, they didnt even know about HPV. But i am sure that was my first go round with it. I had one partner before i married my first husband, it being HIM, and he was very sexually active, so pretty doggone sure i contracted HPV from him. Even tho so much of the population has or has had HPV, its still looked at as only "**** people" get it because most people that have had it or have it dont even know because it doesnt cause them any problems. We know thats not true but i dont think most people know that.

I also went to my GP last week about a white lesion in my mouth and because of my history, he set up an appt with an oral surgeon this afternoon. I really hope its not HPV rearing its ugly head again, but once again, since i am a non smoker, non drinker, IF it ends up being throat cancer, it will be due to HPV i am sure and i will be judged once again. :-(

eihtak said:

David....

Welcome,

As we too often say, I'm sorry for your need to be here but also happy you have found us as this site has offered a wealth of help, support, tips, and advice for many. Nothing is off topic and sometimes it feels as this is the only place it is perfectly normal to have involved conversations about poop, anus's, and all things related! Hopefully as you proceed and questions arise, someone here will have experienced the same thing and be able to offer helpful advice to you as well.

I am 6 1/2 years post my initial diagnosis of Stage 3b anal cancer. I had put off (what I now recognize) as obvious symptoms for over a year because "life was happening" but in turn setting myself up to be dx at a later stage and higher risk for a recurrance down the road. I was then diagnosed with mets to my lung a couple years ago, so have suffered through treatment of various methods a couple times. Today I am mostly well and living a happy, active life! I am glad you were diagnosed early stage.

I too live in a small town (though that probably isn't relative really) but I was involved in the community and my family well known. I was at first uncomfortable saying that I had "anal cancer" and found that on the rare occasion I did I got questionable looks from others. I am a 58 yr old married mother of 5 ... and had people look up risk factors that apparently puzzled them as I did not fit the mold so to speak. I began to just say I had "lower colon cancer" as technically it not far off and seemed easier for others to hear. However, once I was more educated myself as well as more confident with this whole journey, I felt it wasn't fair to me or any other victim of anal cancer to not be honest. We ALL have an anus, and while scary or uncomfortable or maybe even inappropriate in some situations to talk about, it is only through educating others that the fear can be erased. Maybe not right away, but I'll bet in time you'll get there too.

Feel free to steal my "lower colon cancer" if you wish until you are more comfortable. Sometimes once the conversation got going, I'd say, "well actually its the very lower colon, you know, right in the anal canal"......

Again, I am so very sorry that you have this challenge to face, but please stay in touch here and we'll help you through it!

katheryn

Sorry, just thought of this too.....

I now use this as an opportunity to educate others on the importance of the HPV vaccine. It was not available when I was young and it is now, yet still many parents and young adults fail to get it. I was interviewed on a local TV station about the HPV vaccine and used the word Anal loud and clear. Sometimes people need to get a little scared as motivation to take action!

katheryn

https://www.cdc.gov/hpv/parents/whatishpv.html

I welcome you here, but am very sorry to hear of your diagnosis.  I'm sure your doctor is trying to be upfront with you about your prognosis, but I will tell you that there are stage 4 survivors.  You should not give up hope!  I don't know if this is in the realm of possibilities for you, but if so, I would promptly make an appointment with Dr. Catherine Eng at MD Anderson in Houston, Texas.  She is one of or perhaps the topnotch doctor in the United States for treatment of metastatic and recurring anal cancer.  Please look her up on the internet.  She was not my doctor, however, I have had the privilege of meeting her in person at a conference.  I can tell you that she is totally committed to helping people who have advanced stage anal cancer.  Even if you cannot secure an appointment with her, I would suggest having your doctor contact her about doing a phone consult, at the very least, after he/she has forwarded any and all of your records to her.  I realize you are in the beginning stages of diagnosis and treatment, but the sooner you get started with the appropriate treatment, the higher your chances of beating this disease.  Unfortunately, anal cancer is still considered a rare type of cancer, even though the number of cases per year is on the rise.  Many doctors are not that familiar with it, so make sure your medical oncologist and radiation oncologist have treated cases in the past.  You do not want to be their first if you can avoid it.

I'm glad you have found this site and I hope you'll get lots of good information and support here, as I have.  I understand your current anxiety and we are here to listen to your concerns and try to answer any questions you might have.  I am almost 9 years out from diagnosis and have been around here awhile.  The people here are simply amazing.  I send prayers and good wishes your way.

Martha

mp327 said:

Kimak

I welcome you here, but am very sorry to hear of your diagnosis.  I'm sure your doctor is trying to be upfront with you about your prognosis, but I will tell you that there are stage 4 survivors.  You should not give up hope!  I don't know if this is in the realm of possibilities for you, but if so, I would promptly make an appointment with Dr. Catherine Eng at MD Anderson in Houston, Texas.  She is one of or perhaps the topnotch doctor in the United States for treatment of metastatic and recurring anal cancer.  Please look her up on the internet.  She was not my doctor, however, I have had the privilege of meeting her in person at a conference.  I can tell you that she is totally committed to helping people who have advanced stage anal cancer.  Even if you cannot secure an appointment with her, I would suggest having your doctor contact her about doing a phone consult, at the very least, after he/she has forwarded any and all of your records to her.  I realize you are in the beginning stages of diagnosis and treatment, but the sooner you get started with the appropriate treatment, the higher your chances of beating this disease.  Unfortunately, anal cancer is still considered a rare type of cancer, even though the number of cases per year is on the rise.  Many doctors are not that familiar with it, so make sure your medical oncologist and radiation oncologist have treated cases in the past.  You do not want to be their first if you can avoid it.

I'm glad you have found this site and I hope you'll get lots of good information and support here, as I have.  I understand your current anxiety and we are here to listen to your concerns and try to answer any questions you might have.  I am almost 9 years out from diagnosis and have been around here awhile.  The people here are simply amazing.  I send prayers and good wishes your way.

Martha

thank you so much for your encouraging words And advice!  I will absolutely look up Dr Eng!  If I can't make it out to her I will do as you suggest and see if my doctor will consult over the phone!  I will do anything I have to to fight this!  

I am so glad I decided to post something!  I feel less alone!  Thank you

I am 6 1/2 years post treatment and healthy! There are stage 4, long term survivors! my radiation doctor told me he knows from first visit which of his patients will survive. The ones that come in without the "i WILL beat this!" have a higher success rate so get in that fighting mode!!Also, Martha has done a ton of research & she will be a wealth of information, as well as encouragement, for you. I was stage 2 so i had just the normal radiation & chemo that most of us on here had. But i agree that with stage 4, i would definitely contact one of the best in the country. I have seen Dr Eng's name mentioned often on here. Use every avenue you have!!

Kimak said:

Anal cancer-newly diagnosed

hi, I have never posted anything anywhere before.  I don't even have a Facebook page!  Lol  I was diagnosed with anal cancer last week and found out this week that it is my liver and lymph nodes.  I am starting chemo and radiation on May 1st.  My doctor did not give my five year outlook high hopes.  I am freaking out to be honest.  I am 48 years old and have two beautiful girls ages 14 and 9.  I can't imagine not being around in five years.  I know I have a fight ahead of me and I will fight.....I just really want to hear there is more hope for me, you know? I'm sorry, I'm just so scared right now....having my very own freak out and would love to hear how others cope through these moments.

Hi Kimak

I am sorry about your diagnostic. I was diagnosed with stage 1 anal cancer and finished the treatment 3 weeks ago. I am doing very well except for dizziness. Yes there were a couple weeks where I was in a lot of pain especially wuth BM issues. But like you I have children relatively young (14,12,and 8) so that kept me strong. I want you to know that I have been matched with a nice woman who had stage 3 or 4 anal cancer and it had spread  to her liver. She is doing well and she is past the 5 years mark (7 years I think). Stay strong ! 

Dominique

I welcome you here, but I'm sorry that a diagnosis of anal cancer has brought you here.  You will find lots of good information and great support here--just let us know what you need from us.  It sounds like cancer has been a part of your past as well and now your husband's present situation is very unfortunate.  I do hope you both will fight this with all you have.  After you have your scans, you will be staged and then you'll know what you're dealing with.  Treatment protocol is pretty much across the board, but I urge you to familiarize yourself with the guidelines on the website for the National Comprehensive Cancer Network at https://www.nccn.org.  It is a great source of information.

I hope you find doctors that you are comfortable with.  My medical team included a colorectal surgeon (who diagnosed me, but I had no surgery), medical oncologist and radiation oncologist.  I was blessed with very good doctors and am over 8 1/2 years out of treatment.  So far, so good!  I wish you all the very best and hope you'll keep us posted as you move forward towards treatment.

Martha