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Wisteria83
Wisteria83 Member Posts: 160
in Anal Cancer #1

I've been reading the report of the surgery I had on 2/2/17, and one of the items listed is as follows:

Destruction of lesion(s), anus (eg, condyloma, papilloma, molluscum contagiosum, herpetic vesicle), simple; surgical excision

When I asked the surgeon if it was HPV, she said she saw no indication of that, and after surgery it was tender and looked and felt like she use that special glue instead of sutures.  It was healing and getting less painful until this past Sunday, when I noticed that it was really tender, hurt to sit, hurt to wipe and was reddish and raised.  I don't know what to think about it now.  It's not getting any better and the only time it feels decent is when I'm sitting in the tub.

Today I see the medical oncologist for the first time and then tomorrow back to the radiology oncologist.  I'm not sure if I'll be getting PET scan and MRI results today or tomorrow.

The little "lesion" that she removed externally has been there for decades and never bothered me and it never changed.  I remember thinking that it was perhaps just an ingrown hair and didn't give it further thought until she mentioned it during my first visit pre-surgery with her.

Has anyone ever experienced this?  Why would it suddenly act up with pain and change in appearance AFTER it was excised?  I should mention I never had herpes either.

Next question:  They tested my blood for HIV when they did the other testing, and told me this was protocol because there is a correlation between HIV positive and anal cancer.  The test was negative.  I wasn't too concerned about it because I've only had a few sex partners in my lifetime but I wonder if you all had to be tested for it as well.

I've been trying very hard to hold it together.  I do ok most of the time, but I haven't been sleeping well at night at all.  I wake up constantly and my first thoughts are always about cancer and sometimes I'm dreaming of conversations that I've had with the dr.s I've seen so far.  I have a lot of anxiety which xanax helps when I feel like I'm going to lose it.  I don't feel well.  I feel weak and tired and sore, been bleeding since mid November, some days quite heavy and treatment hasn't even started yet.  It seems like no matter what I try to do to distract myself, my thoughts always go to cancer and what treatment will be like.  I'm scared.  Seriously scared.

Thank you for listening.  I feel like I might shatter into a million pieces if I let my control slip the tiniest bit.  

Comments

  • mxperry220
    mxperry220 Member Posts: 496 Member
    edited March 2017 #2
    HIV Testing

    Before my treatments the chemo doctor did test for HIV.  I was HIV negative.  The doctor said this was standard protocol for anal cancer patients.

    Mike

  • jonjon49
    jonjon49 Member Posts: 1
    #3
    testing

    Hello, live in Montréal, and we are also tested for every thing before the chimi and Radiotherapy, but as they told me it is because the treatement will change du to other illness, HIV DIABETESE, STD, ETC.. so not to worry. I'am cancer free since october and before every test,scan and follow ups I still have the nerves that act up before the give me the results ( still negatif)

    :-)

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #4
    Wisteria

    I got HIV testing too, it's just protocol, don't take it personally. About 80% of people who have EVER been sexually active have been exposed to HPV. HPV causes the majority of cervical cancer, there seems to be no stigma with that, but anal cancer in my opinion carries a bit of a stigma in the general population. When I got diagnosed I didn't share what type of GI cancer I had with very many people(still haven't). My cancer was caused by a strain of HPV, that should show up on the pathology report from your biopsy. If you have kids make sure they get the HPV vaccine, the newest one protects against nine strains instead of four. I still don't understand how come my Papp smear is negative for HPV, my anal cancer was caused by HPV, and I never had anal sex. I talked to the doctors and no one had an explaination for that other than "it happens".

    I got a skin tag removed about a year after treatment and it was pretty sore, but yours sounds like it is getting worse - it may be infected, so be sure to get it checked out. 

    And lastly, keeping it together- that's the hardest. I think once treatment starts it might actually be easier because you are at least doing something every day about the cancer and not just waiting. you can get a lot of support on this website, I wish I had found it sooner. Reach out to all your friends and family, don't be afraid to ask for help. I got on pain meds so had different friends take me to radiation since I didn't want to be driving. That was one of the most therapeutic things I did, and I fell into by accident. I felt so loved and supported by those rides by various friends and family, had so many conversations. Its normal to be thinking about the cancer all the time at this point., but it does get better.

     

     

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #5
    PS

    i see your beautiful dogs, they will be great to have with you during treatment. Like I say, no one else but a dog will lay in bed with you 24 hours a day!

  • Wisteria83
    Wisteria83 Member Posts: 160
    #6
    mxperry220 said:

    HIV Testing

    Before my treatments the chemo doctor did test for HIV.  I was HIV negative.  The doctor said this was standard protocol for anal cancer patients.

    Mike

    Thank you, Mike.

    Thank you, Mike.

  • Wisteria83
    Wisteria83 Member Posts: 160
    #7
    jonjon49 said:

    testing

    Hello, live in Montréal, and we are also tested for every thing before the chimi and Radiotherapy, but as they told me it is because the treatement will change du to other illness, HIV DIABETESE, STD, ETC.. so not to worry. I'am cancer free since october and before every test,scan and follow ups I still have the nerves that act up before the give me the results ( still negatif)

    :-)

    Thank you.  I'm sure once I'm

    Thank you.  I'm sure once I'm cancer free, the tests will still worry me too.

  • Wisteria83
    Wisteria83 Member Posts: 160
    #8
    Mollymaude said:

    PS

    i see your beautiful dogs, they will be great to have with you during treatment. Like I say, no one else but a dog will lay in bed with you 24 hours a day!

    Thank you

    My dogs are only 6 months old.  Unfortunately their quiet times are few and far between.  I haven't had the energy to devote to their training, so they don't listen too well in spite of obedience classes.  Still, their antics do help take my mind off things for a short time, and every little bit helps.  I find it very calming to lay with them when they are tired out and napping...unfortunately it only happens a couple times a day.  I take what comfort I can! Hahaha.

  • Wisteria83
    Wisteria83 Member Posts: 160
    #9
    Mollymaude said:

    Wisteria

    I got HIV testing too, it's just protocol, don't take it personally. About 80% of people who have EVER been sexually active have been exposed to HPV. HPV causes the majority of cervical cancer, there seems to be no stigma with that, but anal cancer in my opinion carries a bit of a stigma in the general population. When I got diagnosed I didn't share what type of GI cancer I had with very many people(still haven't). My cancer was caused by a strain of HPV, that should show up on the pathology report from your biopsy. If you have kids make sure they get the HPV vaccine, the newest one protects against nine strains instead of four. I still don't understand how come my Papp smear is negative for HPV, my anal cancer was caused by HPV, and I never had anal sex. I talked to the doctors and no one had an explaination for that other than "it happens".

    I got a skin tag removed about a year after treatment and it was pretty sore, but yours sounds like it is getting worse - it may be infected, so be sure to get it checked out. 

    And lastly, keeping it together- that's the hardest. I think once treatment starts it might actually be easier because you are at least doing something every day about the cancer and not just waiting. you can get a lot of support on this website, I wish I had found it sooner. Reach out to all your friends and family, don't be afraid to ask for help. I got on pain meds so had different friends take me to radiation since I didn't want to be driving. That was one of the most therapeutic things I did, and I fell into by accident. I felt so loved and supported by those rides by various friends and family, had so many conversations. Its normal to be thinking about the cancer all the time at this point., but it does get better.

     

     

    Stigma

    I know what you mean about stigma.  It's an uncomfortable subject, elimination...It's kind of funny when you think about it.  I had a conversation with my son-in-law, and wasn't sure quite what to tell him about my cancer, but finally I just blurted it out.  He just said, "Everybody has an ****."  He's absolutely right.  Saying where the cancer is shouldn't be so embarrassing.

    My dr. told me that I just had bad luck, which is similar to yours saying, "It happens."

    Oncologist took a look yesterday and said it looked like a boil or something like an ingrown hair where the lesion was excised and she advised sitz baths a few times a day.  

    Thank you for your response....I so appreciate being able to ask questions and get answers here.

  • mp327
    mp327 Member Posts: 4,440 Member
    #10
    Stigma

    Dealing with the stigma associated with this disease was one of the most difficult things for me.  Having never had anal sex, I could not understand how in the world this happened.  However, it is obvious that HPV can migrate from the vagina and cervix to the anal area, given that so many of us have gotten this disease without having had anal sex.  I have quit worrying about it and just go with the "it happens" theory.  Do not let the stigma some people insist on connecting with this disease dampen your spirits.

    Martha 

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    edited March 2017 #11
    Dogs

    i play with mine in the house with a laser.  I make them run till they are pooped!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #12
    Boil

    im still a little worried about your boil. Do you have someone who can look at it every day or so? When I had my skin tag removed I had my husband check it frequently. I even had him take a pic on his phone to show me what it looked like- it was actually validating because it did look like it hurt and I didn't feel like so much of a baby! If it gets worse it could need antibiotics or even draining. Just make sure to delete those pics off the cell phone!!!!

  • Wisteria83
    Wisteria83 Member Posts: 160
    #13
    Mollymaude said:

    Boil

    im still a little worried about your boil. Do you have someone who can look at it every day or so? When I had my skin tag removed I had my husband check it frequently. I even had him take a pic on his phone to show me what it looked like- it was actually validating because it did look like it hurt and I didn't feel like so much of a baby! If it gets worse it could need antibiotics or even draining. Just make sure to delete those pics off the cell phone!!!!

    boil

    My husband can help if needed and I could also take a pic...I'm laughing about your reminder to remove the pic from my phone...most definitely will!!

    I saw the radiologist today for a CT and he took a look also and wasn't too concerned, and it actually didn't feel as bad as it has for the past 6 days, so it's maybe on the mend!

  • Wisteria83
    Wisteria83 Member Posts: 160
    #14
    Phoebesnow said:

    Dogs

    i play with mine in the house with a laser.  I make them run till they are pooped!

    Dogs

    Yes!  That's a great idea.  I'll need to buy one of those!  Thank you!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #15
    Boil

    I'm glad it's better! Isn't it funny how quickly we lose our modesty with those exams?! 

  • pializ
    pializ Member Posts: 508 Member
    edited March 2017 #16
    Stigma, HPV etc

    I have become aware that there seems to be quite a few horse riders struck by AC. It maybe coincidence but I can understand how horse riding could be associated with inflammation in that part of the anatomy. Just wondering.....

  • Wisteria83
    Wisteria83 Member Posts: 160
    edited March 2017 #17
    Mollymaude said:

    Boil

    I'm glad it's better! Isn't it funny how quickly we lose our modesty with those exams?! 

    Modesty

    Hahaha!!!  I thought I'd lost all modesty after having 4 kids.  Nope.  This thing turns up and I'm all bashful again...now, after more people seeing my backside than I could have ever imagined, I'm losing it again...what's one more look?  

     

  • Wisteria83
    Wisteria83 Member Posts: 160
    #18
    pializ said:

    Stigma, HPV etc

    I have become aware that there seems to be quite a few horse riders struck by AC. It maybe coincidence but I can understand how horse riding could be associated with inflammation in that part of the anatomy. Just wondering.....

    Horse riding

    I'm not a horse rider.  I've wanted to, but it seems like everytime I've had the opportunity, my back acts up.  Now, I can't imagine sitting astride a horse.

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    #19
    Wisteria83 said:

    Stigma

    I know what you mean about stigma.  It's an uncomfortable subject, elimination...It's kind of funny when you think about it.  I had a conversation with my son-in-law, and wasn't sure quite what to tell him about my cancer, but finally I just blurted it out.  He just said, "Everybody has an ****."  He's absolutely right.  Saying where the cancer is shouldn't be so embarrassing.

    My dr. told me that I just had bad luck, which is similar to yours saying, "It happens."

    Oncologist took a look yesterday and said it looked like a boil or something like an ingrown hair where the lesion was excised and she advised sitz baths a few times a day.  

    Thank you for your response....I so appreciate being able to ask questions and get answers here.

    What to call it

    i thought anal cancer sounded way to masculine so I renamed mine cancer of the Tushy amoung friends and family.  Now we all can joke openly about it.

    i don't know if this will correlate with what you are experiencing but I was first diagnosed on Dec. 1.   They couldn't agree about it so I had the small growth removed.  That little, itty bitty surgery took 6 weeks to recover from.  Sitz baths provided the best relief.  I was told I actually had easy time of it.  

  • Wisteria83
    Wisteria83 Member Posts: 160
    #20
    Dustyone said:

    What to call it

    i thought anal cancer sounded way to masculine so I renamed mine cancer of the Tushy amoung friends and family.  Now we all can joke openly about it.

    i don't know if this will correlate with what you are experiencing but I was first diagnosed on Dec. 1.   They couldn't agree about it so I had the small growth removed.  That little, itty bitty surgery took 6 weeks to recover from.  Sitz baths provided the best relief.  I was told I actually had easy time of it.  

    What to call it.

    Well, sounds like a cute name for a horrible disease.  I've been trying to keep a sense of humor as well, and between my friends and family, the joke is...I never do anything predictable or easy.  I can't get a simple elbow cancer, NO.  I have to get a$$ cancer.  I always have to be different and special.  LOL!!!  If I don't joke and laugh, I think I will fall apart.  I haven't even started treatment yet, so there's plenty of time to fall apart later.  Joking about it has become a way of self preservation I think.  I'm actually terrified in my heart of hearts, but I really need to be strong for my family.  

    The "boil" seems to have mostly cleared up.  It's been a bit over a month since the surgery.  I feel best when I'm sitting in the tub.

     

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