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Newly Diagnosed

dkrvermont
Posts: 1
Joined: Apr 2017

Hi Everyone,

I am sad (and glad) to be posting here.   I received a positive test result from a biopsy 2 weeks ago and was told by the doctor that it was early stage.   The visable tumor is only a few mm in size but I think it may be further along because of the pain, pressure and burning I feel in the biopsy site, around my anus but also my lower back and groin area which could indicate cancer in the nodes, etc.  I think I'm walking a little crooked as well.  Maybe it's just nerves but its hard not to think the worst and frankly I'm terrified of what's in store for me.  

I have a CT Scan schedule for Tues 4/18 and my first oncology/radiation appointment on 4/24 so it's a waiting game now.  The information I've read here has been very informative and helpful though its scary to hear all of the issues people have.  

I'll keep posting progress here but wanted to introduce myself and say thank you to everyone who posts and shares.   I am a healthy, active 47 yo, with wonderful life, insurance, work benefits and support system but cancer was not something I expected at this point in my life.

One question I have now:   What did you tell people at work?  I live in a small town and have a public job at a school.  As a gay man, i know people will make assumptions about me and my lifestyle.   Can I say its a different kind of cancer or just tell people not to ask?  Any suggestions would be appreciated.  

The battle begins,

David 

jcorum
Posts: 51
Joined: Jul 2012

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.

eihtak
Posts: 1255
Joined: Oct 2011

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

eihtak
Posts: 1255
Joined: Oct 2011

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

 

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

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

Mollymaude
Posts: 298
Joined: Nov 2016

Welcome to the site, sorry you have to be here. I agree with what others have said. I don't tell very many people I had anal cancer. I also say "colon" or "colorectal" cancer. Being female a lot of people assume I had breast cancer, so when I say it was colon sometimes they get a horrified look and don't ask more anyway, imagine if I said "anal"! You are right you probably have more stigma to deal with as a gay man. You should never feel obligated to give more information than you feel comfortable giving. It will get easier as you get used to your diagnosis to decide how much you want to tell people. 

I'm hoping your scans are all good as the tumor is so small. My tumor was the size of a chicken egg and still had not spread. 

Mollymaude
Posts: 298
Joined: Nov 2016

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.

mxperry220
Posts: 475
Joined: Mar 2011

I am a male and always say I had anal cancer.  I am retired so I am not 100% certain what I might have told coworkers.  I hope I would have told them the truth.  I am 8 plus years post treatment.  The way I look at it is it is what it is.  Everyone is different but this cancer is no different than other cancers except for the location. Hopefully people will educate themselves on this terrible cancer as they have with other cancers.  Anal cancer is not necessarily the result of having anal sex.  Most anal cancer are the result of having the HPV virus of which 80 plus percent of the population have this virus.  If the immunity system is compromised then the HPV virus can result with anal cancer as well as cervical cancer.  If your cowqorkers know you are gay they have already formed an opinion about you.  Those that are anti-gay do not matter what they think anyway regarding anal cancer.  They have already formed their prejudice opinions of gays.

Mike

jcorum
Posts: 51
Joined: Jul 2012

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 "slutty 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. :-(

Phoebesnow
Posts: 563
Joined: Apr 2011

First, I find it strange that people would ask...if you are not volunteering The location.  initially I would say, well...no one seems to get it in their big toe (humor)...still not Volunteering the info. Then if they persisted,  I would make the decision between anal and colon, anal for the ones that I thought would recoil in horror and colon Sometimes.  It's a process...I didn't actually tell anyone unless...I had to...that's me.

Kimak
Posts: 3
Joined: Apr 2017

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.

Dominiq
Posts: 10
Joined: Mar 2017

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

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

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

Kimak
Posts: 3
Joined: Apr 2017

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

Mollymaude
Posts: 298
Joined: Nov 2016

Welcome, and glad you found us. I don't have any other advice for you other than what Martha has written. You will come to see she knows her stuff and always gives excellent suggestions.I have also read about Dr Eng and agree that if you can't go see her have your doctor do a phone consult with her. I don't blame you for freaking out. It is a very scary time. I remember my kids were the first thing I thought of too, and my main motivation in the fight. You will find a lot of support here so please let us know how you are doing. My thoughts and prayers are with you. 

PS: Please make sure your daughters get the gardisil vaccine, the 9 valent one that covers for 9 types of HPV.

Kimak
Posts: 3
Joined: Apr 2017

thank you for responding!  I will be sure my girls are vaccinated!  Really appreciate the support!

jcorum
Posts: 51
Joined: Jul 2012

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!!

 

Tushygirl
Posts: 23
Joined: Mar 2017

i agree with you about attitude.  Since they established a set time for radiation, everyone within that hour got to know each other.  I noticed those with the Cancer Isn't Going To Beat Me attitude had less side effects and was willing to do what ever while the I Have Cancer And That isn't Fair people didn't do as well even with the lower stages.  

Remember humor is your best friend.  One of rad buddies who had breast cancer with lymph nodes, use to laugh and say any time she start feeling sorry for herself, she would think about my treatment.  i would answer that I was jealous of her breast cancer.  Then we would laugh and laugh and hug.  You will be surprised at how easy the poop jokes become.

This is a great place to hang out even if you don't post.  It is like a warm cuddly blanket of people who understand and wishing only good thing for you.

ginatom
Posts: 41
Joined: Apr 2017

Hi everybody,

Thanks for being here!  I'm pretty newly diagnosed and haven't been staged yet.  Still have a PET scan and an MRI to get.  I had breast cancer in 1995 with just a lumpectomy and was good til 16 years later I found another lump.  Then I had a lumpectomy and radiation in 2011.  So I'm not a stranger to radiation, but I've never had chemo and am pretty unnerved by it.  And radiation to the anus seems a lot harder than breast.  Nevertheless, I'm a happy and grateful person, don't blame anybody, and just looking to make my best decisions.  I'm 68 years old, had a lot of fun in the 70's, had cervical warts in 1970 or so, so I guess I've had the HPV all this time, though I never knew it.  I was a chiropractor for 30 years, so I'm surprised I missed the signs, but . . . I did.  Oh WELL!

My husband has prostate cancer, which has just recently spread to surrounding tissues.  No actual metastasis yet, but it seems like it's ready to move.  We take turns, so this week is his week.  We're heading to L.A. for a doc down there.  I haven't settled on mine yet as the med onc I met is kinda young.  I think I'd like someone with more experience.  He was human, though, and that seems like half the battle.  

So, anyway, I'm just introducing myself and wishing you all well!  I guess I'll be on here for awhile.  And some of you oldies, you remind me that I haven't checked in to the breast cancer boards in a long time.  I should do that.  I've had a 21 year, pretty uneventful, run with breast cancer!!!  So I have some stuff to share over there.

Thanks, Jeana

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

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

ginatom
Posts: 41
Joined: Apr 2017

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?  Surprised

Dennie
Posts: 2
Joined: Apr 2017

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!

 

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

Welcome to this site, althought I've sorry you have a reason to be here.  I'm glad you have been correctly diagnosed now and will be beginning treatment soon.  This treatment is very effective, so you have good reason to feel hopeful.  I am over 8 1/2 years out of treatment and am doing well.  The support here is great, so let us be your shoulders to lean on when you need advice from those who have been there, done that.  I know this is a scary time, but you will get through this.  Let us know how we can help you do that.  I wish you all the very best.

Martha

ginatom
Posts: 41
Joined: Apr 2017

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

Mollymaude
Posts: 298
Joined: Nov 2016

Hi Jeana, welcome to the site. It sounds like you have a good handle on this cancer stuff, you aren't panicing and you'll just take it as it comes. Probably why you've done so well with the breast cancer. Yes the treatment is rough, no one is going to say differently here. But if we can do it so can you. Don't be afraid to ask for help with anything, it's never "too much information" here. When it rains it pours, so good luck to your husband with his prostate cancer. Please let us know how staging goes and how you are doing. 

Dominiq
Posts: 10
Joined: Mar 2017

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

jcorum
Posts: 51
Joined: Jul 2012

The treatment is pretty harsh. Radiation to your nether regions is absolutely horrible!!! But before you start treatment, get back on here for advice about salves to use between radiation treatments, marys magic mouthwash for mouthsores, dialators so your vajajay doesnt shrivel closed. but when i looked at the discussion board for our friends that are going /have been thru head & neck cancer due to HPV, i feel incredibly blessed.Those people have the worst possible treatment ever. everyone on here is supportive & will give you advice on how to go thru this as easily as you can.

Mollymaude
Posts: 298
Joined: Nov 2016

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
Posts: 41
Joined: Apr 2017

Dominiq - it was similar for me.  I'm a chiropractor, so I self-diagnosed the fistula right away, but a GYN had missed it, my GP did a pelvic and couldn't find it, then they ordered an internal ultrasound, a barium enema and an abdomenal CT - all of which were negative!  I knew I was right, but geez!  So I finally got into a specialist and she found it in about five seconds AND felt the roughness that told her there was tumor.  So - very similar to your experience.  I can't believe you are finished with treatment already!  I can't start for another two weeks at least.  I feel pretty resigned to it, and am dreading it, but the help of all of you is giving me hope that I can do it, too.  Jcorum - thanks for the perspective and the advice.  I'm making a list of things I find on here for when the time comes.

Dennie
Posts: 2
Joined: Apr 2017

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!

mxperry220
Posts: 475
Joined: Mar 2011

I used Aquaphor.  You can get it over counter at any drug store, Target, major grocery store pharmacy.

Mike

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

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.

ginatom
Posts: 41
Joined: Apr 2017

Hi everyone!  I'm probably starting treatment in a couple of weeks.  Can someone say real clearly how you cleaned off the Aquafor and other things every day before treatment?  Obviously you can't be scrubbing.  Do you use something special to remove it?  With special wipes?

Also did anyone get one of these little bidet attachments that "wipes" you with just water?  Was that helpful or awful or something in between?  I see many advertised if I google portable bidet, and they're not THAT expensive.  And does it NOT cause problems with fecal material going forward into the vagina?  I can't quite imagine it all!  

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

It is a problem trying to get the salves/creams off completely before getting radiation treatment.  I didn't use a peri-bottle as has been suggested, but I would definitely get one of those.  I didn't know about such a thing, so I dipped toilet tissue into a bucket of water to make it less abrasive for wiping.  It helped some, but I still was pretty miserable.

Tushygirl
Posts: 23
Joined: Mar 2017

I used a bidet attachment.  It was great at first but then because I did not have an electric one, the water was too cold and caused more pain.  What I really did find helpful was a shower wand attachment that I could regulate how strong a stream it was.  It needed to be a weak stream of Luke warm water.  It was the only way I could keep clean.

unscented wipes are also a necessity.  so far I have gone through over 600 of them and I amstill using though I am slowly transitioning to toilet paper on my 3 week of healing.

Wisteria83's picture
Wisteria83
Posts: 129
Joined: Feb 2017

I went on Amazon and found pure cotton polishing cloths.  They came in a 6 pack of two ply 11"x17" and are like a super soft tee shirt fabric. The cost was around $8.50 and well worth it, IMO.   I sat in the tub and G E N T L Y wiped with warm water.  Some of the little folds required a wet Q-tip. One small area at a time, then I patted dry with a fresh one and used a blow dryer on cool setting to dry completely before dressing.  I had instructions to remove the salve 4 hours before treatments, but since my treatments were at 10 am, I didn't do it at 6 am.  It was more like 7:30-8:00.  

If you decide to get these, when you wash them, don't be tempted to use fabric softner even though you might think it will make them softer.  The softner makes them less absorbent for some reason, and as long as you put them through the dryer and don't hang them to dry, they will be plenty soft enough without an additive.

 

 

Mollymaude
Posts: 298
Joined: Nov 2016

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.

Wisteria83's picture
Wisteria83
Posts: 129
Joined: Feb 2017

Yes!  The Charmin!  And baby wipes with aloe.  I have a septic tank so can't even use the kind that it's ok to flush, but I just emptied my trash daily and it wasn't a problem.  Chux for the bed were also a must to avoid needing to change sheets so frequently.

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horsepad
Posts: 131
Joined: Apr 2012

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! 

ginatom
Posts: 41
Joined: Apr 2017

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"!!!

Salsify's picture
Salsify
Posts: 30
Joined: Nov 2015

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-

 

ginatom
Posts: 41
Joined: Apr 2017

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.

Salsify's picture
Salsify
Posts: 30
Joined: Nov 2015

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

ginatom
Posts: 41
Joined: Apr 2017

Thanks everybody. Guess I'll be getting a peri-bottle! 

tanda
Posts: 113
Joined: Jan 2015

I also sat is a sitz bath several times a day and, during the last week or two and a few weeks after, I lay in the bathtub and was soothed by the warm water.

I began with Aquaphor and as the pain increased, the nurses gave me Aquaphor mixed with lidocaine and Domboro soaks

Wisteria83's picture
Wisteria83
Posts: 129
Joined: Feb 2017

I asked about the Domeboro soaks and the dr. said he didn't want me to use it because it was an astringent, which meant it would dry the skin.  The ONLY thing he wanted me to use is Aquafor.  I WISH someone offered it to me with lidocaine in it!  I would have been bathing in it!

ginatom
Posts: 41
Joined: Apr 2017

Got my PET Scan results and there's no evidence of metastases from either the old breast cancer or the new anal cancer.  So that's GOOOOOD!  Nice to have THAT happy moment!

Wisteria83's picture
Wisteria83
Posts: 129
Joined: Feb 2017

What fabulous news!  I'm SO happy for you!  

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

What wonderful news!  I am SO happy for you!  Time to celebrate!

Tabbysmom12
Posts: 8
Joined: May 2017

What is everyone doing to keep the stains off your clothes or underwater. I use pads when I need to go out but that doesn't cover the area higher up on the crease of your legs. I am trying just gauze pads right now but they don't stay in place. 

Wisteria83's picture
Wisteria83
Posts: 129
Joined: Feb 2017

I had hoped to just be able to wear boxers and skirts, but because I need to wear a pad due to leakage and incontinence, I've found it necessary to wear underwear too.  Pads and boxers just don't work together.  I did manage to find underpants that have no elastic at the leg which hold the pad but still fit loosely where my thighs meet my groin so there is no chafing there. They are similar to boy shorts that are popular now, but looser.  The burns there and the aggravated, itchy hair follicles there would have made the elastic unbearable.  Buy some loose, cheap underwear that you don't care if you never see again.  Save the quality stuff for when you are healed!  (On a side note, the itchy hair follicles can be helped somewhat by Hydrocortisone 10, but my dr. said not to put it on the burns)

Since my spirit and my wardobe are still stuck in the '70's, I have an abundance of gauze Indian skirts, which I have found to be the most comfortable clothing to wear, especially now.  Better than sweats or leggings.  

I actually just Googled, "How to remove Aquafor stains from clothing." and I was surprised at how many other people asked the same exact question.  The majority of answers said to use Dawn Dishwashing Liquid.  Some suggested Mix it with Baking Soda, or Peroxide.  Some people swore by OxyClean Max Force Spray, while still others said to use a pre-wash spray like Shout.  EVERYONE said, if you already put the clothes through the dryer, forget about getting the stains out...they are there for the duration.

Sorry I can't be more helpful.

~Wis

 

 

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