Anal Cancer and Pain

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Shortstraw
Shortstraw Member Posts: 3

Hi everyone.  I just found this site. I've been diagnosed with stage 3b anal cancer.  The unbearable pain is what sent me to the doctor.  Is it just me or is it the "the norm" for anal cancer?  So much pain!!!  I've started with the radiation treatments to stop the bleeding I had and tomorrow I begin both the radiation and chemo.  I've spoken with other women while waiting my turn for treatment and it seems many cancers aren't all that painful....so the women are telling me.  Anyone else experiencing so much pain from just the cancer?  I'm not even including any discomfort from treatments.

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  • Kim Gaia
    Kim Gaia Member Posts: 73
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    Hi Shortstraw. And welcome! I

    Hi Shortstraw. And welcome! I am just five weeks poxt-treatment. I experienced quite a bit of pain and physical discomfort before treatment. It was very hard for me to walk, or sit, or drive a car becaue of my discomfort. In fact I had to be driven 2-hours to treatment each week lying down on mattress in back of friend's car - that's how disabled I was pre-treatment. My life had ground to a standstill, and lying in bed was the only position not painful. I had a tumor inside that was causing partial bowel obstruction, which in turn was causing a lot of discomfrot from bloating and severe feeling of rectal pressure. I also had an external part of the tumor which was causng the misery while sitting or walking. All I can say is, the problem started disappearing for me after the 1st week of chemo-radiation because the radiation was shrinking the tumor that quickly. I am actually one of those rare patients who got better each week as treatment progressed. I was healthier, more cmofrtable, less fatigued, more animated. My pain decresed as treatment progressed because the tumor was shrinking and the radiation, for whatever reason, was not causing me pain or skin breakdown.

    Everyone is different, and everyone's response to treatment is is different. Now I just have to hope mine lasts. Still too soon to tell. I hope you do well, Shortstraw! <3

    kim

  • mp327
    mp327 Member Posts: 4,440 Member
    edited October 2018 #3
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    Shortstraw

    Welcome to this board, however, I'm sorry you have a reason to be here.  I really wasn't in a lot of pain prior to treatment, just noticed blood in my stools.  That said, my tumor was staged right on the fence between Stage 1 and 2, so it wasn't as large as yours.  I'm glad your treatment is underway and I hope that time passes quickly for you and your outcome is successful.  Take good care.

  • Shortstraw
    Shortstraw Member Posts: 3
    edited October 2018 #4
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    Kim Gaia said:

    Hi Shortstraw. And welcome! I

    Hi Shortstraw. And welcome! I am just five weeks poxt-treatment. I experienced quite a bit of pain and physical discomfort before treatment. It was very hard for me to walk, or sit, or drive a car becaue of my discomfort. In fact I had to be driven 2-hours to treatment each week lying down on mattress in back of friend's car - that's how disabled I was pre-treatment. My life had ground to a standstill, and lying in bed was the only position not painful. I had a tumor inside that was causing partial bowel obstruction, which in turn was causing a lot of discomfrot from bloating and severe feeling of rectal pressure. I also had an external part of the tumor which was causng the misery while sitting or walking. All I can say is, the problem started disappearing for me after the 1st week of chemo-radiation because the radiation was shrinking the tumor that quickly. I am actually one of those rare patients who got better each week as treatment progressed. I was healthier, more cmofrtable, less fatigued, more animated. My pain decresed as treatment progressed because the tumor was shrinking and the radiation, for whatever reason, was not causing me pain or skin breakdown.

    Everyone is different, and everyone's response to treatment is is different. Now I just have to hope mine lasts. Still too soon to tell. I hope you do well, Shortstraw! <3

    kim

    Hey Kim

    I feel the pain you had.  Really.  I do.  :) Not knowing nor coming into contact with anyone else with anal cancer, I've been concerned others would think I'm being a baby.  I'm so sorry for everyone who has/is going through this!  A pain in the **** just doesn't cover it, does it?  I'm trying to keep a sense of humor through it all.  I am so fortunate to have the wonderful and sweet hubby I have!  He has been a gem!

     

    Thank you to all that took the time to explain the pain of this cancer.  I feel a bit saner now.  ;)

  • Ohmy
    Ohmy Member Posts: 102 Member
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    I was diagnosed with Stage 3

    I was diagnosed with Stage 3 anal cancer in January 2017.  A couple of local lymph nodes were affected.  I think the amount of pain prior to treatment depends on the location and time and size of the tumor.  My tumor was 3 cm.  I remember hip pain and I had to pull myself up off the toilet.  I thought it was arthritis and I told my husband I needed a high toilet.  I was passing blood clots and mucus.  I had an anal exam every year with pap test and my doctor keep telling me it was a hemorrhoid.  Thank God I decided to have a colonoscopy.  The treatment was brutal but doable.  I learned so much from the blogs and it got me through it all.  One day I noticed I didn't have the hip pain and I could stand up without pulling myself up.  I must admit my butt gets sore.  I got a standing desk at work and that helped.  It's funny because I now tell my husband the treatment wasn't so bad and he says I don't remember how sick I was.  Maybe that's a good thing.  We all share our pain here.

  • Shortstraw
    Shortstraw Member Posts: 3
    edited October 2018 #6
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    Ohmy said:

    I was diagnosed with Stage 3

    I was diagnosed with Stage 3 anal cancer in January 2017.  A couple of local lymph nodes were affected.  I think the amount of pain prior to treatment depends on the location and time and size of the tumor.  My tumor was 3 cm.  I remember hip pain and I had to pull myself up off the toilet.  I thought it was arthritis and I told my husband I needed a high toilet.  I was passing blood clots and mucus.  I had an anal exam every year with pap test and my doctor keep telling me it was a hemorrhoid.  Thank God I decided to have a colonoscopy.  The treatment was brutal but doable.  I learned so much from the blogs and it got me through it all.  One day I noticed I didn't have the hip pain and I could stand up without pulling myself up.  I must admit my butt gets sore.  I got a standing desk at work and that helped.  It's funny because I now tell my husband the treatment wasn't so bad and he says I don't remember how sick I was.  Maybe that's a good thing.  We all share our pain here.

    Shoulda, Woulda, Coulda

    Hey ohmy.  I sometimes will ask someone, "If you could have a 'Do Over,' would you do it?  Before my cancer diagnosis I felt if I took the 'Do Over' it all might come out even worse.  Well, I am now 62 years old and I now have something I'd take the 'Do Over' in a flash!  I made excuses, too.  I've been on a heavy duty blood thinner for about 10 years.  I had a heart attack back then.  I have 4 cardio stents in the same place because the first two kept clogging up.  The last two stents were put together to make one longer and is doing the trick.  I've been in pain management for about five years for severe foot pain.  I just thought the bleeding I would have off and on was constipation from the pain meds causing the bleeding.  And then on top of that, I thought the amount of bleeding was because of the blood thinner.  Then I thought I had a heavy duty hemorrhoid.  What finally sent me to the doctor was the pain just got so bad, I couldn't take it anymore.  I think I was misdiagnosed a few years back when I was hospitalized for 6 days because of severe rectal bleeding.  It was so severe, I left PUDDLES of blood getting to the bathroom! In the hospital I was assigned a doctor that I have labeled a quack.  I didn't get the big jug of prep for the colonoscopy until 9 pm.  There was no way I was able to drink it all by midnight!  I tried.  After the procedure the next morning, the doctor said out was nonexclusive!  Many 'Do Over' would be to go to a better hospital.  I had just moved here and didn't know any better.  I now know for any major problems to NOT go to the local hospital.  And,yes.  The treatment is brutal!  But, I do feel a bit lucky for having been in pain management before this all hit.  I was able to get the proper pain meds.  I have a great pain management doctor.  He's highly recommended.  I do feel for him.  He has to be extremely careful because of how much the government keeps track of the meds he prescribes.  But, that's a good thing.  I've been able to get a fentanyl spray to help me.  I cannot use it daily.  I'm only allowed so many does in a 15 day period, but I'm not complaining!  :)  My heart goes out to everyone that's had to deal with this....or any other cancer, for that matter.

  • jesschicklinsky
    jesschicklinsky Member Posts: 2
    edited October 2018 #7
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    Pain

    Hi, sorry to hear about your diagnosis.  I too had severe pain and was told by my oncoligst that it was what they called true cancer pain and considered to be the most severe pain a person will ever endure.  to control the pain I was gradually put on very high amounts of oxycodine, oxycodone, and 800 mg fitinal lollipops.  I was told that there was no reason to be in any pain with all the medications available today.  Also,  as for becoming addicted,  once you no longer need them they will taper down the dosage every week to the lowest mg before going off completly.  you will not have the cravings to take more.  Peopple only become addicted when they take these powerfull pain meds for things other than true cancer pain. 

  • Amanda2511
    Amanda2511 Member Posts: 3
    edited October 2018 #8
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    I am 7 months out of

    I am 7 months out of treatment and severe bleeding and pain is what finally convinces me to do the colonoscopy.  There was an assumption that it was probably hemorrhoids, and I didn't want to do the prep.  The pain finally got to the point where I knew it was necessary.  I would lay on the bed trying to watch TV and my butt would throb.   I knew that wasn't normal.  It took about a month of treatment before the pain and the bleeding finally stopped altogether.  When I was getting my PIC line inserted, the nurse told me that anal cancer was one of the more painful (so she'd heard).