Newly Diagnosed

Hello

My symptoms were also a fistula and spasms in the anal area. Gastro in November missed Fistula and just saw 2 hemoroids. Ob/gyn almost refused to look there and ended up saying I also just had 2 hemroids early January. She reffered me to family dr. I called the family dr office and asked for a specialist for this area. They mentioned a colorectal surgeon. I called the Cleveland Clinic and asked for the first appointment mid January. Colorecal surgeon  saw fistulà right away and felt anal mass right away. Colonoscopy Jan 27. Biopsy results feb 3 confirmed anal cancer. I started treatments February 27 and finished April 3rd. The 2 weeks after treatment were nasty but I am doing great now and almost back to normal. I still can't eat many veggies or fruits or it goes right through me. I am taking baby steps with that part as I ended dehydrated a couple times as I had 4 weeks of diarrhea.I am stage 1. Good luck with the treatment and your staging.

Dominique

Wow so sorry you both had fistulas! And how scary Dominique - you sure had to be persistent to get the correct diagnosis! I was diagnosed after rectal bleeding led to colonoscopy and doctor doing scope found it right away. I assumed bleeding was from hemorrhoids too. We sure can ignore a lot about our bodies- my tumor was fairly large, I was taking pain meds (ibuprofen and Tylenol ) because of the pain, and still managed to ignore/deny it until the blood filled the stool. 

ginatom said:

Fistula

Thanks for the welcome Martha and Molly,

Yes, I'll know more after the PET, and I'll also have an MRI, and THEN the visit with the rad onc.  Wish it could proceed a little faster at this point, but that's life, eh?  My first symptom (well, except for the bleeding which I blamed on a hemorrhoid - a bit of denial there) was an obvious fistula!  Suddenly in mid February I could feel gas passing through a hole and then being expelled, completely uncontrollably (!) out my vagina.  So that's what really got my attention.  When I read the list of possible causes, I didn't have any of them - except I couldn't guarantee I didn't have cancer.  So I knew then that it was likely this.  I'm going to go and look for fistula discussions now, but wondered if anybody here started out this way.  OR if radiation has caused one.  What a ridiculous thing!  Who could dream this stuff up?  

Ginatom I started out similar to how you did.  I have just been diagnosed with anal cancer resulting from a "suspicious" fistula.  I am so frightened & kinda freaking out.  I'm trying to hide it & stay "strong" for my family but it's hard.  I was in the middle of a bm a few months ago & sneezed...it forced the poop out & Ive had pain since.  I too thought it was maybe a tear or a hemorrhoid.  After a couple months of no relief or sign of healing I decided to visit my gyn.  She did an exam & said she thought it could be a hemorrhoid but suggested I have my 1st colonoscopy since I am 58.  I did & that's when the fistula was discovered.  A biopsy was taken & I was referred to a colorectal surgeon that made the diagnosis & I have an appt with the oncologist at the cancer center on may 2 to receive the staging results and my treatment plan.  I truly hope that we can all help each other here because none of us ever expects things like this in our lives.  I refuse to give up...I am not ready to leave this world quite yet, there are still some things I wish to do!  Thank you all for listening and good luck to you & everyone here.  I'm sure there will be some special friendships made here!

welcome Dennie, sorry you have reason to be here but glad you found us. Recent posts about skin care included a thread about strata xrt. Lots of people use aquaphore. Miaderm is another one. Also people talk about aloe and silvadene cream. Anything you use has to be washed completely off before radiation though. When I get bad at the end I used domeboro soaks. Your radiation doctor will probably meet with you every week during radiation so there's lots of opportunity to get advice then too.  You can always put key words in and search more on problems as they come up.

Good luck with your treatment. Everyone here has done it and you can too. I know you're feeling overwhelmed now, take time now before treatment starts to spend time with your family. I had time to Christmas shop and stick up on things like paper products so I didn't have to shop for stuff when I didn't feel good. (BTW you may become a toilet paper connisseur during this- my personal fave is Charmin ultra strong!) Keep us posted on how you are doing.

I was diagnosed with stage 4 cancer in 2011.  The cancer had spread to my lympth nodes and liver.  I never told anyone (except my husband) that it was anal cancer.  Everyone asked-and I said colon-rectal cancer.  I understand being scared.  I kept in my mind, treatment was short term pain, for a long term gain!  During treatment, my mother died, my husband committed suicide and my daughter was sent to prison for drugs.   I want you to know that I am doing great!  I am more active now than I have ever been.  I have adopted my granddaughters, manage a 70 acre tree farm by myself and volunteer alot.  I thank God everyday for his blessings.  Although treatment can be rough, anal cancer is very curable!  Stay positive and pray! 

I am sorry to hear so many people recently diagnosed with this "rare" cancer. Oddly enough, before I was diagnosed, the only other employee of the very small office I work in had been treated 10 years earlier (and she is still going strong, just now retiring at age 79). She is an old-school, proper, devout Catholic, married well over 50 years, etc. That made it easier for me to say which cancer it was - once it was determined to be anal & not rectal cancer. I am too old to worry that much about what people who do not know better may think of me for having anal cancer, and figured it could make it easier for the next person to admit it.

The single most important thing that helped me with that painful matter of elimination when radiation burns set in was something someone had mentioned on these boards - what the nurses called "peri-bottles" when I realized I had left them at home when hospitalized for the 2nd round of chemo and asked if they could find me some. They did. Still cannot believe they are not considered essential for people receiving our teatment. I used them to squirt water on my crispy lady bits during and after urinating and to squirt mild soapy water, then rinse water, on my behind after those frequent bowel movements before ever-so-gently blotting.

Good luck everyone-

Dennie said:

Hello everyone!  I am new here and feel a little better that i am not alone while reading the posts here.  I was wondering if someone could give me some ideas on creams or salves to use during radiation & chemo treatments for anal cancer on the skin in that area. Thanks in advance & wishing everyone the best!

In the beginning, I used Aquaphor, given to me by my radiation oncologist.  As burns intensified, he gave me a script for Silver Sulfadiazine.  Many people have used other things and I'm sure you'll get lots of suggestions.  Just make sure that whatever you use is completely cleaned off of your skin prior to each treatment, as some things can actually make the burns worse if left on the skin during radiation.

horsepad said:

I was diagnosed with stage 4

I was diagnosed with stage 4 cancer in 2011.  The cancer had spread to my lympth nodes and liver.  I never told anyone (except my husband) that it was anal cancer.  Everyone asked-and I said colon-rectal cancer.  I understand being scared.  I kept in my mind, treatment was short term pain, for a long term gain!  During treatment, my mother died, my husband committed suicide and my daughter was sent to prison for drugs.   I want you to know that I am doing great!  I am more active now than I have ever been.  I have adopted my granddaughters, manage a 70 acre tree farm by myself and volunteer alot.  I thank God everyday for his blessings.  Although treatment can be rough, anal cancer is very curable!  Stay positive and pray! 

WOW horsepad, you have been through it and out the other end.  What a story!!!  Thanks so much for sharing how good you feel now.  I'm thinking "screenplay"!!!

Dennie said:

Ginatom I started out similar

Ginatom I started out similar to how you did.  I have just been diagnosed with anal cancer resulting from a "suspicious" fistula.  I am so frightened & kinda freaking out.  I'm trying to hide it & stay "strong" for my family but it's hard.  I was in the middle of a bm a few months ago & sneezed...it forced the poop out & Ive had pain since.  I too thought it was maybe a tear or a hemorrhoid.  After a couple months of no relief or sign of healing I decided to visit my gyn.  She did an exam & said she thought it could be a hemorrhoid but suggested I have my 1st colonoscopy since I am 58.  I did & that's when the fistula was discovered.  A biopsy was taken & I was referred to a colorectal surgeon that made the diagnosis & I have an appt with the oncologist at the cancer center on may 2 to receive the staging results and my treatment plan.  I truly hope that we can all help each other here because none of us ever expects things like this in our lives.  I refuse to give up...I am not ready to leave this world quite yet, there are still some things I wish to do!  Thank you all for listening and good luck to you & everyone here.  I'm sure there will be some special friendships made here!

 

Hi Dennie,

Isn't that fistula just the weirdest thing???  And it really takes someone who knows what they are looking for to find it - and THEY find it instantly!  I was freaked, too.  But now I realize that without THAT set of symptoms I would NEVER have looked into that area even though I was having some bleeding which I thought was hemorrhoids.  I guess in a way it has made me aware sooner! 

So you are being staged today - please write back and share your results and know that we are all hoping for the best for you.  I only just had a PET yesterday to make sure it (or my previous breast CA) hasn't spread, and MRI on May 5 to locate and size the sucker.  So I am right behind you.

I'm going to post this separately, but I have heard of a program at UCLA where they might be willing to do seeds for this if the tumor is just right (which I don't know yet).  I'm going to look into it.  Seems wildly easier than the daily rads as it is a one, or two, or three time thing...in the hospital.  Just a thought - might be a wild goose chase, but I'm chasing it!

Be good to yourself in the meantime!

Jeana

ginatom said:

Thanks for THAT Salsify

I will look into these peri-bottles.  It's hard to imagine getting into the right position to use them, but obviously people are using them.  

I, too, said "colon cancer" to the first few people I told, but I did some de-sensitizing on the word ANAL and ANUS and after a couple of weeks started being able to say it out loud.  I feel like it's helpful to desensitize these words.  Then again, I didn't have to go to an office every day and talk to people who I wasn't really friends with - I think I'd just stick to colon if I did.  The only problem with that is that right away everybody knows someone who had colon cancer and did such and such, and they tell us all the details to be helpful, and it's irrelevant as it's a totally different disease.  So now I say I have "anal cancer caused by the HPV virus, which I didn't even know I had".  Somehow that makes it easier and maybe even more helpful.

No contortions needed! just aim and squirt! ;-)