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Anal Cancer

ACW189
Posts: 24
Joined: Feb 2009

Just diagnosed with T1-T2 anal cancer. No risk factors apply. Set to get 5 1/2 weeks radiation with chemo. Anyone been through this? I'm 54 years old, female.

taraHK
Posts: 1961
Joined: Aug 2003

Hi - welcome to this board -- although I am sorry you have cause to be here.

I was diagnosed with rectal cancer when I was 44 -- I also had no risk factors.

I had Stage III, so my treatment was presurgical chemoradiation followed by surgery followed by chemo. The radiation I had was also 5 1/2 weeks. That is pretty standard.

The radiation is OK. The actual 'zapping' only takes a few minutes. But of course there is getting there, waiting around, etc.! I had some fatigue. It didn't it me till I'd been on the radiation about 2 weeks, then it lasted about 2 weeks after the radiation stopped. I also had some skin 'burn' around the area they zapped. That was pretty sore. If that happens to you (I hope not!), do talk to the nurses/radiology technicians, etc. They can advise on creams and other things you can do. Oh, I also had diarrhea as a result of the radiation. I hope this isn't too much negative information! I wish you luck with the treatment. When do you start? Let us know how it goes.

Oh -- excuse me bringing up a sensitive topic. For us women, sometimes the radiation can cause some effects on the vagina -- like soreness, narrowing. May I suggest you talk with your doctor/medical team in advance about this -- there may be some things they can suggest to prevent or treat afterwards.

Best wishes,
Tara

3dogsmom
Posts: 8
Joined: Feb 2009

How are you doing now?? I saw your update from 2005 that reported lung mets. I'm hoping the home page comment that states you are currently not receiving treatment means you remain cancer free.

Hope all is well with you!

taraHK
Posts: 1961
Joined: Aug 2003

Guess I need to update my homepage! I have had a solitary lung met three times (2005, 2007, 2008). Each time I had surgery followed by chemo. But, I am cancer-free today! And doing really well. Working, exercising, playing. I am on maintenance chemo (Xeloda pills only), trying to prevent or at least delay a further recurrence. Gotta update that homepage!

Tara

3dogsmom
Posts: 8
Joined: Feb 2009

Glad to hear all is well!

LSAULS
Posts: 8
Joined: Jan 2009

I need some help from the group. I'm in day 13 of radiation. I've finished my first round of mitomycin and 5 FU. My radiation is for 30 treatements, Dx is anal canal CA stage 2

I'm REALLY sore, front and back.It's a hot burning, itching pain.

I keep reading about ointments and creams..WHAT OINTMENT AND CREAMS? I'm using aquaphor and its not helping. Also I'm not sure that uncontrolled diarrhea is not helping at this point either. I'm working full time and really need my sleep at night, but not doing well in that department either.

I start another round of chemo in 10 days and am hoping to get "this" under control before we start back on the side effects from that.

Any help to a newbie is greatly appreciated!

Linda

taraHK
Posts: 1961
Joined: Aug 2003

Linda,

So sorry you are having such discomfort. I have to admit that of all the treatments I have been thro in the last 6+ years, the radiation was probably the worst for me. (I don't want to scare off people who are just commencing -- we do all react differently, and I hope for the best for everyone). About creams/ointments -- I was told that some creams/ointments can interfere with the radiation so you have to check with the nurses/technicians first. I think I actually was given a steroid cream at one point -- just for a few days. You could ask about that?? I also sat in a lukewarm 'sitz' bath every day, with something added. I can't remember what it was -- but it stained my bottom purple!! (Just to add insult to injury -- literally!). I'm not sure if it really helped -- hard to know. The diarrhea is difficult and of course can be very painful (the image of razors leaps to mind. I cried). Can you take immodium or similar for that?? Can you take sleeping pills to help you sleep (unless that would be a bad combination with the diarrhea!). I don't know what else to say except that it does end -- it really does -- and the memories fade (altho not completely, as you can see from this message). I do wish you all the best -- try to bug those nurses/med team for suggestions -- they have a lot of experience.

Tara

LSAULS
Posts: 8
Joined: Jan 2009

Thanks for your reply. My Dr is very fussy about what his patients use, so the staff can't tell me anything they've seen others use. Dr says use the Aquaphor which I do. Your image of razors is spot on Tara :(

I am now taking lomotil 2 every 4 hours, hoping that helps. I will try the sitz baths tonite, sounds like it would help and I know I can use the Epsom salts, so will give it a shot.

I don't like sleeping pills, but, I think I'll try taking a compazine...that ought to do it. Just 1 good nights rest and I'll be fine!

thanks again

Linda

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Trust me...it will irritate the burns. My nurses had me add Mylanta or Milk of Magnesia to the sitz bath water. It was like sitting in silk, and it did help. Also, they prescribed a lidocaine cream and a hydrocortisone cream...I used them 3-4 times a day. The burns are the worst, I know. You can do this.

Vicki

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

My sis had VERY good luck with this.

I am allergic to Aloe Vera, so my alternative was (PLEASE don't laugh) sort of how babies are treated for diaper rash....cornstarch, keep the area dry, and get as much air to it (yes, I went without undies) whenever possible. I tried Silvadena, but it went internal places that REALLY burned!!!

For the runs, a good diarreal pill did the trick. Also, LOTS of banannas and cheese (not together, lol).

This, too, you will get thru, Linda...but make sure that you are a comfortable as possible...maybe Vicodin would help? It was my Godsend!

Kathi

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

hello im glad you found this site its ben a blessing to me.im 44 was diagnosedin sept 08 with rectal cancer. i went thru 5 wks of chemo pills{xeloda}and radiation sounds scary but we all do make it over that hill.after the tumor shrunk i had surgery to remove it with a temporary iliostomy bag,just had the iliostomy removal 5 days ago.we all go thru so much and believe me we are here for eachother.will be praying for youand again welcome.......johnnybegood

3dogsmom
Posts: 8
Joined: Feb 2009

I went through this 16 mos ago for Stage 3B anal ca. I had no risk factors either. I was 46 (female) and in great health. I had 35 radiation tx's with 2 rounds of chemo (5fu & mitomycin). I did not get sick with the chemo but lost 85% of my hair, so I shaved it off.

The radiation was tough. I'm very thin which played in my favor. Heavier people have more difficulty with radiation burns to the groin area due to the fatty tissue. The most difficult part was the burns to the vaginal area. This can be managed somewhat with creams and ointments, however your skin must be completely clean and void of all ointments prior to radiation. (ointments left on the skin prior to treatment can act like a tanning oil). I also developed a skin split at the base of my coccyx which ulcerated.

I dont want to scare you, but you can expect your entire vaginal area to be affected. It will feel burned inside and out (including the clitoris). I developed ulcerations in the vaginal canal that burned like liquid fire when I urinated. My radiation oncologist made me take a 1 wk break toward the end of my treatments. That break was a welcome relief. For me, the symptoms seemed to get really tough towards the end (last 2 wks). Hopefully it wont be as rough for you since you will be having less radiation treatments.

I also had to take immodium on a daily basis to combat the diarrhea.

Good luck! It will all be behind you before you know it. (No pun intended!)

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

She had nothing but rads and chemo...VERY intense....watch the burns.

My tumor was a bit higher, so part of my treatment was surgery (although it wasn't necessary, as it turns out...all cancer was gone...thanks to the chemo/rads beforehand).

Kathi

3dogsmom
Posts: 8
Joined: Feb 2009

I had surgery as well. My tumor was very small 1x1.5 cm very high in the anal canal and was flat. They just removed it when they went to do the biopsy. It was an aggressive little sucker as it already spread to my lymph nodes. That's actually how I initially discovered it. I had no symptoms, other than an enlarged node in my groin. I'm in health care and knew it wasnt normal. I had the node removed first and the biopsy was positive for "squamous cell ca of suspected gyn origin" I had a hysterectomy the year before, so they felt pretty certain it was anal. I'm so lucky I insisted on having the lymph node biopsied as my surgeon didnt think it was anything but a "reactive node" which is common.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

But my tumor was 2 inches...growing from the outside to the inside of the rectum. There was great worry that it had spread all over the abdomin. My surgeon did a resection, removed the rectum and sig colon, with a J-pouch procedure. Almost 4 years later, I would match my plumbing to anyone who has a full set...lol...

Isn't modern surgery/treatment grand? I'm alive today because of it...

Kathi

3dogsmom
Posts: 8
Joined: Feb 2009

That sounds great. One surgeon told me that if I had a recurrence, I would have to have my anus and rectum removed and receive a permanent colostomy. I didnt care for him or his demeanor so I left him and found a wonderful surgeon to replace him. I pray that will not happen!

LSAULS
Posts: 8
Joined: Jan 2009

I'm a newbie here as well, I've had 12 HHRT radiation treatements and one round of chemo. I'm lucky that my treatement is MD anderson and they have a great group that helps lead you thru the way. I'm 62, so older than you.

The treatment times go pretty fast, first the scan (3 min), then 8 min for the treatment. Other than a really sore bottom and diarrhea, I haven't had any other side effects.

Ask lots of question and I'm sure you'll also get tons of answers here also. I wish you peace on your journey.

Linda

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

I just finished radiation Jan 26 and I know just how you feel! By the 13th one I was were you are too. I couldn't eat because everything went through me and I thought I was going to pass out (actually die!) everytime I had to use the bathroom. I got the big jar of aquaphor and lathered that on. Then I started taking my pain pills (Lortab) everyday the remainder of the sessions which helped a bunch. I do not like taking those but it was better than feeling that razor blade feeling 4 times a day. Have you been given pain pills? I am still a bit sore and I still take a pain pill after a bowel movement but nothing like it was. Oh, and my dr gave my suppositories....which I know the thought of using one of those at this time is just crazy, but they actually helped.
Hang in there!! You are tougher than you think!

3dogsmom
Posts: 8
Joined: Feb 2009

Hi Linda! I'll tell you what helped me. First, the more sitz baths you take a day, the better it is for your skin. I took 4 a day and it really helped. I used 2 different presciption ointments during my treatments. The first was zinc oxide with lidocaine HCL jelly. The lidocaine is a numbing agent. I also used silvadene. That helped me the most. A topical steroid can help a little with the inflammation, but the silvadene alone worked best for the burning sensation. (I'm a PT and used to work in a burn unit and silvadene helps take the "burn" out. They use it all the time). Aquaphor was only good at the beginning, although I have to say I used it in globs to assist relieving the burn during urination. (I had 3 ulcerations in the vaginal area.

It's really important to wash off all of the ointment before your radiation so it wont act like a tanning oil. I took a bath every morning before radiation and washed with cetaphil liquid soap. It does not burn and does a good job removing all ointments in a gentle fashion. As soon as I walked out of the radiation room. I went straight to the bathroom and applied the silvadene.

For the diarrhea, I took 2 immodium twice a day. I discovered that charmin TP was the softest on the market. The last week of radiation (I had 35 tx's for stage 3b), I had to take pain pills. I have a very high tolerance for pain, but the boost tx's really got to me.

Hope this helps! Good luck and let me know how things turn out.

LSAULS
Posts: 8
Joined: Jan 2009

Thanks for all the suggestions. First, the maalox does help some. also was told to use Caldesene powder and low and behold, it really did help.

I started thinking, there must be more answers, so I'm going to experiment this weekend.

1. If the miracle mouthwash works on your mouth....might it help with the burning butt?...stay tuned :)

2. Going to mix some aloe from my garden, some benedryl cream and some emla cream...

3. Aquaphor, benedryl, cortisone cream 1 %

4. Now that I hear about the silvadene, may try mixing it as well.

DogsMom, I'm taking 8 immodium per day, now worse at night which I guess is better than during the day when I'm working, but sure not getting much sleep!

Will check back in on Monday.

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

1. If the miracle mouthwash works on your mouth....might it help with the burning butt?...stay tuned :)

What worked for me was Milk of Magnesia (or Mylanta) in the sitz baths. The radiation techs suggested it, and it truly helped. I, too, had 4 or 5 sitz baths a day...and it was instantly soothing.

Vicki

pamness
Posts: 529
Joined: Nov 2007

However, I noticed you say you can't sleep - or don't sleep well. Sleep is a big part of healing. You mentioned you don't like sleeping pills, but will take compazine. Compazine - prescribed for nausea, does work for nausea - but it has a side effect no one mentioned to me for a while - it can make you anxious and it makes it difficult to sleep.

Have you talked to your doctors about ambien, attivan, klonopin or whatever to help you sleep? Or maybe meditation or yoga?

I was diagnosed colon cancer - stage IIIA - in January 2007. Did folfox, surgery, radiation with 5FU. Am currently ned. Had a very hard time with the oxaliplatin and consumed ever nausea med ever invented - or so it seemed. I also had trouble sleeping. Was given Ambien CR - and klonopin for anxiety - worked and stopped the tinesus (sp?) I had from the frequent diahrea.

Might be worth looking into sleeping aids - pills or other things.

Pam

LSAULS
Posts: 8
Joined: Jan 2009

seeing Dr tomorrow and am going to ask him for something for sleep and something to take the edge off the pain that maybe I can take and not need to take the compazine. Thanks for the suggestion!

Linda

LSAULS
Posts: 8
Joined: Jan 2009

the mouthwash actually did work, poured some into a little dish and used cotton balls. Only didn't last long.

next (DON"T) mixed fresh aloe, benedryl and cortaid....BURNED...good for another sitz bath.

This worked also for awhile. Put Emla cream on with with a q tip then doused with caldescene, that actually worked for about an hour.

Next, tried just dabbing on Mylanta...no help.

Still no majic bullets. Can I just disconnect that part of my body for a few months?

I have not been able to sleep because of the burning and itching. Last night I decided I had to get some sleep if I was gonna work, so I took a compazine, then 1hr later 1/4 or a percocet, then 30 min after another 1/4, then 30 min later the other half. I slept for FOUR solid hours...thought I was in heaven! (normally anything stronger then Tylenol extra strenth doesn't stay in my stomach long(

Sat night I tried Restoril, but that didn't even make me sleepy) Today is number 15 of 30. I WILL make it through.

How was everyone's Valentines Day?

Linda

cathyvee's picture
cathyvee
Posts: 5
Joined: Feb 2009

I just discovered this site, but couldn't get sign-on to work without webmaster intervention. I so wanted to respond to you because I'm female, and was 56 when diagnosed. Not so long ago, I went through what you're facing.

The big thing to remember is that everyone reacts differently. I spent most of the time sleeping, my husband tells me (my chemo affected my memory, so a lot of the 5-1/2 weeks is a bit of a blur), had virtually no nausea, and developed only one minor mouth sore. I lost a lot of my hair, but could never bring myself to shave my head. For women, I think the hair loss thing is one of the more traumatic moments of having cancer. (And, as my balding husband pointed out, my hair grew back! And I didn't know that your local American Cancer Society office has wigs, hats and scarves for you, free.) I didn't have much pain at all until the 4th week. And from then on the pain got steadily worse, until it peaked about 3 weeks after the last radiation treatment, just like my Dr. said it would.

Sitz baths will help enormously. And if you're too tired or fatigued to get undressed and get in the bathtub, go pick up a Futuro Sitz Bath that sits on the toilet. Another thing that really helped me get through the day was to squirt lukewarm water directly on the burned parts WHILE urinating, and to use the water instead of toilet paper. My sister told me about this one, something she was advised to do after childbirth. You can get a plastic squeeze bottle at most drug stores -- not a spray bottle, but a squeeze bottle, like the kind you use for mustard. We also bought a new attachment for the shower, one with a hose so it could reach the floor of the shower stall and had different adjustments for water flow. It had one setting that was just a gentle gush of water and that thing was a life-saver.

After every water treatment, it's vital that you let the area dry completely. If you have a hair dryer that will blow unheated air, that will work the quickest. (Blowing hot air on the area will just make things worse.) I preferred lying on the bed spread-eagle with a sheet over me -- got in a lot of reading that way.

I don't want to scare you, but the burns probably will be pretty painful. I recall that going to the bathroom involved some crying and screaming for a few weeks. I also remember not being able to sit properly for a couple weeks -- had to sit sideways, on my upper thighs. Just remember that it's TEMPORARY. And DO talk to your doctor about vaginal burns -- my doctor didn't mention it and I actually grew shut. Fixing that was very nearly as painful as the radiation. I've never liked heavy duty pain pills so can't give you any advice in that regard.

Try to stay positive, and remember people like me -- I've been cancer free since the treatment, and didn't require any cancer surgery. It's a bit of a harsh treatment, but it really does work!

Best of luck

dasspears
Posts: 233
Joined: Feb 2009

I am one-year out of treatment and now I'm trying to deal with vaginal canal narrowing problem. I have a set of graduated dilators and estrogen cream. May I ask how long it took you to get back to some semblance of normal?

Thank you!
Debra

bobina
Posts: 1
Joined: Mar 2009

Hi, I am 50 and was diagnosed at age 49 in July 2008. I live in Indiana. All the docs told me that I needed the nigro protocol (5Fu chemo and rad) I had 2 friends who are doctors telling me that I needed to get out of town. I have never had HPV-I have IBD-colitis and psorasis-they think these were my precursors. Finally, the oncologist admitted that she did not know exactly what treatment to give me because the reports were all jacked up. She sent me to IU Med Center. There, they offer a surgery for some. It is called Transaal surgery. I was dx as T1 NX MX meaning they couldn't tell about mets or nodes. Well, of course I jumped at that...it was not pleasant but it is tolerable and easier on the body than chemo and radio. I urge you to get a second opinion at a large teaching university if possible regarding surgery vs chem radio. I had to have 2 follow ups for AIN3. There was some concern about mets in my lungs; however, everyone feels that this is a fungus found mainly in the Ohio Valley. A second opinion for your treatment is warranted. My gynie told me that this is a slow growing cancer, and depending on the grade agressive or not. Need more infor? Feel free to contact me.
Peace to you.

tiny one
Posts: 467
Joined: Jan 2009

I had chemo and radiation for stage 3 colon cancer for 5 1/2 weeks also. I regret receiving radiation. I feel I wasn't imformed enough about the sexual side effects. Be forewarned this may render you unable to have sex. The radiation to the pelvic area can shorten and narrow the vaginal area. It can also cause alot of bowel problems for a long period of time. You may go into menopause prematurely. I did and have no more periods. Make sure you understand fully before they start this. I am 50 years old.

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