Anal Cancer - no one to talk to - does anyone survive this disease and come out with reasonable norm

anothersunrise
anothersunrise Member Posts: 8
edited March 2014 in Colorectal Cancer #1
I am a 43 year old female. I watched the Farrah Fawcett documentary regarding her experience with anal cancer and had never heard of it prior to that. I was shocked when only 3 weeks later I was diagnosed with the same thing - especially because I am the picture of health, other than this disease. I was diagnosed with squamous cell carcinoma of the anus on 7/7/2009. My tumor is 5cm, so I am a stage II. According to all of the tests so far, the cancer has not spread to any surrounding tissues and the docs are all optimistic that I may not need any surgery. I am currently in the middle of radiation and chemo treatments. I have had 18 out of 30 radiation treatments and 5 out of 7 chemo treatments. At first, I was getting Oxaliplatin, Leukovorin, and 5FU. After my 3rd treatment of this cocktail, I had an anaphylactic reaction to the Oxaliplatin and was hospitalized for 4 days. The positive part of that experience was that they thought I was septic and performed a CT scan in case there was infection surrounding the tumor - thank goodness there was not - but they said that the scan showed a 40%-50% decrease in size of the tumor!!! Obviously they are no longer giving me the Oxaliplatin and I have had the last 2 treatments with only the 5FU and Leukovorin. Next week, they are going to add Cisplatin in a small dose to see how I react to that - I am very anxious about it. All of my treatments were suspended this week to provide a break from the horrific affects of the radiation treatments - I have never experienced such pain and discomfort - the genital mutilation - and feel like a prisoner in my home at times, not to mention a slave to the side effects of the treatment for this disease. I am concerned of the long term effects that radiation will have on my body. I want to hear from others who have survived.

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Oh my goodness...
    First of all, hello there! It's nice to meet you.

    Your post had a couple of things that hit home with me.

    I noticed that you mentioned they were switching you off the Oxy over to Cisplatin...has your oncologist mentioned the chemo drug CPT-11 or Camptosar as an alternative to the Oxy? The reason I'm asking is because Cisplatin is a 1st generation chemo drug, and Camptosar is a 2nd generation chemo drug. Oxaliplatin or Eloxatin is a 3rd generation chemo drug. I'm just wondering why the move to Cisplatin over Camptosar...perhaps they are concerned with your reaction to these drugs and want you to start from a base level and see how it goes.

    Next, RADIATION. This is a very ugly word to me as well. My opinion here is that the radiation oncologists or your regular oncologist give you no heads up on what to expect or what the ramifications are when you begin this protocol. It is cruel and medieval - I believe it does shrink tumors, but comes at one H*LL of a price to pay, that's for sure.

    It is very hard on the genital area for both a man and a woman. The way my oncologist put it to me was that there is only one EXIT point for a man and woman in which the radiation must travel. And unfortunately we that have done it, know which route that is based on our anatomy. It basically burns everything to the very end...radiation got me so bad that it turned things a sun burnt red and actually took the 1st layer of skin off, so that things would stick to your undergarments and would peel or stick when coming out of those.

    The sexual dysfunction is something that the docs make sure they don't tell you, or that the procedure could sterilize you, so if you want kids, plan ahead. No, they don't tell you that...they wait till you bring them symptoms but by then, you are well into your rad treatment. I can't speak for a woman, but as a man, it became difficult to even urinate correctly because all healthy tissue was burnt to a crisp. Time does help things, but its safe to say that things or you will not be the way you were before.

    And yes, treatments and surgeries can keep you house bound for long periods of time, with going to the doctor or to the grocery store your only outside activities, so I understand.
    And yes, the side effects we all have to live with and it does change our lives for awhile until we can adapt to what's considered the new normal.

    I did not have anal cancer, but rather colorectal cancer...tumor was very low in the rectum and I had to have radiation to shrink the tumor, so that a resection would even be possible. I only had a few millimeters to work with that separated me from a permanent colostomy, so that was the reason that we did it. I had 25 treatments over 5 weeks.

    My cancer spread to my liver, and now has spread to my lungs, but hoping surgery will stop it. You asked about people who had survived it and while it was not your particular cancer, colorectal is a big killer too...I'm now into my 6th year of fighting the disease and am still here...working full time and trying to hang on.

    I hope this helps some...I'm so sorry to hear about what's happening to you. Those who have done radiation know all too well what you are talking about. It seems with cancer, you have to trade this to get that to live. Sometimes it does not seem like a bargain.

    Keep your head up...other folks will be in behind me with their story. Wishing you all the best.

    -Craig
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Melanie781
    Melanie781 Member Posts: 33
    #4
    My husband has rectal/anal cancer diagnosed 12/07 (stage IIIC.) During 2008, he endured chemo/radiation, a TME with permanent colostomy, and 5 rounds of post-chemotherapy. The radiation portion was brutal, but he got through it. Don't be afraid to use pain killers during this time. Also, he got Silvidene (sp?) cream from the radialogist and that seemed to help somewhat. The radiation shrunk his 6cm tumor significantly. So, it was worth it.

    I am happy to say my husband is still here and doing well. He is still my handsome, adorable husband and I hope to have him around for a long while!

    That's fantastic that they aren't talking about removing your anus and rectum. But, even if down the road this becomes a possibility, you can live through it and survive!

    My husband attends a once-monthly group meeting at the local ACS office, which he finds very beneficial. They don't all have the same type of cancer, but the support he receives is awesome.

    Be positive; it's when you give up that you have to worry. :-)
  • ac
    ac Member Posts: 88 Member
    #5
    I like your moniker
    First of all, I'm sorry you have to deal with this.

    I was diagnosed in summer/fall 2008 for colorectal cancer. My tumor which was in the sigmoid colon was so large that it almost encircled the colon and the surgeon couldn't get the scope past it. So I was likely clinical stage T3 due to the enlarged lymph nodes observed around the region. I was officially Tx.

    Given the size and position of the tumor (which was really close to the rectum), I had to undergo 5 1/2 weeks of radiation coupled with Xeloda to prep me for surgery. The radiation was pretty effective and shrunk the tumor to a negligible size and downstaged me to T2. This allowed the surgeon to resection my colon and rectum without a (temporary or permanent) colostomy. I then followed up with another 6 cycles of chemotherapy (Xeloda 2 weeks on, 1 week off).

    It was really difficult when I was undergoing radiotherapy. Going to the bathroom always felt like I was passing razor blades and my experiences swung wildly between constipation and diarrehea. I managed to overcome this with Colace or Imodium depending on the situation and HydroCortisol suppositories for the soreness. I also blended fruits and vegetables everyday. I think that helped a lot.

    It's been half a year since my surgery and I'm now hoping that this disease doesn't come back. I still have lingering issues like chronic constipation and occasionally a feeling that I cannot completely empty my bladder which I think is due in part to the radiation. But I'm just grateful that I'm alive. Do try to stay positive and focus on all the important things in your life.

    There is as you say, always another sunrise! Good luck.
  • karguy
    karguy Member Posts: 1,020 Member
    #6
    Radiation
    I had colorectal cancer,and did both radiationand chemo at the same time.I also have a permanant colonoscopy.You were told correctly about having children,if you want some then you better make arraingments beforehand.It has been over a year since the surgery,and everything is starting to calm down.It will take time but you will survive,and it will shrink the tumor alot.It will be worth it when you get the news[think positive]that you are NED.I'll be praying for you.Remenber,never give up.I hope this helps
  • tkd3g
    tkd3g Member Posts: 767
    #7
    Geez
    Hi there,

    I just had to jump in here and post something. If I were a newbie and saw some of these posts, I'd be scared out of my mind.

    While I had some difficulties and set backs, my experience wasn't nearly as horrible as some here have had.

    Diagnosed at 42 (female, married with 3 young girls) with stage III rectal cancer. Which, if I'm not mistaken, is the same as anal CA. I was in the best shape of my life. I was about to test for my Black Belt in Tae Kwon Do, training 4-5 days a week. A month before my test, I was diagnosed. My treatment was this:

    6 weeks chemo and radiation ( the fanny pack of 5FU continuous and radiation)
    surgery - very low in the rectum, no colostomy, removed my tubes and ovaries as well.
    post op chemo ( after a short recovery period 6 weeks ) - I started on the Oxy, but I couldn't tolerate it after the 4th treatment. I chose to stop it and we went back to the old stand-by - 5FU.

    I just celebrated my 5 year "clean" anniversary. Considered cured. All yearly scopes have been clear.

    My experience with radiation - I had NO burns whatsoever. My docs gave me the creams and stuff. Never used them. So, that was a piece of cake ( unlike others here ).
    I don't know if it was the chemo or the radiation, but the worst part of those 6 weeks was the diarreha. It was, as you said, horrible. Felt like peeing and pooing out acid! But it stopped. I look at it as ridding my body of that tumor and cancer. Per my doc , I used a lot of Immodium. It was still difficult to control, but it did stop eventually. I didn't go out much during those weeks. If you have the same issues, use a lot of A & D ointment or Desitin ( zinc oxcide ) before and after you are in the bathroom. Get a soft toilet seat and something to keep yourself amused. That room became my home for a few weeks. ( I got a little hand held tetris game from toys r us. I still play it when I go sit for a while ! :-) I just reread your post and it seems as though you are almost thru with this portion of your treatment. It will get better. Watch what you eat, it will effect your system. Stay away from sugar, too much coffee, some fruits and veggies may make it worse. You have to experiment to see what your system likes and dislikes.

    The chemo ( 5FU ) gave me a metallic taste in my mouth for some time. Never got sick, never lost my hair.

    Having kids - yes, my oncologist(s), both my medical and radiation docs warned me that it could ( and most probably would ) send me into menopause. It did. I had my three wonderful kids, so that wasn't really an issue with me.

    So here I sit,5 years out, and you want to know what? I'm doing OK. It's not the same, but I am most certainly alive. I try to always stay positive and laugh every day. I still have to watch what I eat and plan my days accordingly. I carry Immodium where ever I go. I don't drink any soda or fruit juice, don't eat much chocolate or ice cream ( although I could, I just know the short term effects) And the FYI - the next best thing to a colon prep is a Starbucks Mocha Frapp !!! hehe. I still love them, though!!

    Hang in there. These are tough times, but the sun still shines and the birds still sing. You will get through this.

    You can e-mail me anytime, if you want to chat.

    Hang in there,

    Barb
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #8
    tkd3g said:

    Geez
    Hi there,

    I just had to jump in here and post something. If I were a newbie and saw some of these posts, I'd be scared out of my mind.

    While I had some difficulties and set backs, my experience wasn't nearly as horrible as some here have had.

    Diagnosed at 42 (female, married with 3 young girls) with stage III rectal cancer. Which, if I'm not mistaken, is the same as anal CA. I was in the best shape of my life. I was about to test for my Black Belt in Tae Kwon Do, training 4-5 days a week. A month before my test, I was diagnosed. My treatment was this:

    6 weeks chemo and radiation ( the fanny pack of 5FU continuous and radiation)
    surgery - very low in the rectum, no colostomy, removed my tubes and ovaries as well.
    post op chemo ( after a short recovery period 6 weeks ) - I started on the Oxy, but I couldn't tolerate it after the 4th treatment. I chose to stop it and we went back to the old stand-by - 5FU.

    I just celebrated my 5 year "clean" anniversary. Considered cured. All yearly scopes have been clear.

    My experience with radiation - I had NO burns whatsoever. My docs gave me the creams and stuff. Never used them. So, that was a piece of cake ( unlike others here ).
    I don't know if it was the chemo or the radiation, but the worst part of those 6 weeks was the diarreha. It was, as you said, horrible. Felt like peeing and pooing out acid! But it stopped. I look at it as ridding my body of that tumor and cancer. Per my doc , I used a lot of Immodium. It was still difficult to control, but it did stop eventually. I didn't go out much during those weeks. If you have the same issues, use a lot of A & D ointment or Desitin ( zinc oxcide ) before and after you are in the bathroom. Get a soft toilet seat and something to keep yourself amused. That room became my home for a few weeks. ( I got a little hand held tetris game from toys r us. I still play it when I go sit for a while ! :-) I just reread your post and it seems as though you are almost thru with this portion of your treatment. It will get better. Watch what you eat, it will effect your system. Stay away from sugar, too much coffee, some fruits and veggies may make it worse. You have to experiment to see what your system likes and dislikes.

    The chemo ( 5FU ) gave me a metallic taste in my mouth for some time. Never got sick, never lost my hair.

    Having kids - yes, my oncologist(s), both my medical and radiation docs warned me that it could ( and most probably would ) send me into menopause. It did. I had my three wonderful kids, so that wasn't really an issue with me.

    So here I sit,5 years out, and you want to know what? I'm doing OK. It's not the same, but I am most certainly alive. I try to always stay positive and laugh every day. I still have to watch what I eat and plan my days accordingly. I carry Immodium where ever I go. I don't drink any soda or fruit juice, don't eat much chocolate or ice cream ( although I could, I just know the short term effects) And the FYI - the next best thing to a colon prep is a Starbucks Mocha Frapp !!! hehe. I still love them, though!!

    Hang in there. These are tough times, but the sun still shines and the birds still sing. You will get through this.

    You can e-mail me anytime, if you want to chat.

    Hang in there,

    Barb

    I was diagnosed with rectal
    I was diagnosed with rectal Ca stage 3 in feb 09. I didn't have alot of bad side effects from the radiation. The worst one for me was fatigue. Even now, I have some issues with urinary dribbling, nothing a panty liner can't take care of. If I am doing alot of cleaning, my lower back bothers me a little-possibley from the chemo. My skin got a little irriatated for a short time, but tollerable. Wear non-restrictive clothing and that will help, use dove non-scented soap. Hope this hopes, but it may not be that bad. Hope things are ok for you.. Petrina
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    stage III rectal for me, stage III anal for my sister...
    And, over 4 years later for me, and 2 years for her...we are BOTH cancer free!!!!!

    Both of us had your type of cancer...squamous cell...but, like everything else in my life, I couldn't even get it in the right place...it was up in my first rectal fold. So, even though as it turned out I FULLY responded to the chemo (Cisplatin and 5FU) and the radiation (squamous cell is VERY radiation sensitive), since it was 'in the wrong place', I had my rectum removed, along with my sigmoid colon, and a 'new' rectum made from descending colon fashioned. And a total hysterectomy at the same time. I have not had any reoccurance and, now 4 years later (this happen gradually), I have full control of my 'bodily functions'...as long as I stay away from milk...I am lactose intollerant.

    My sister had RADICAL chemo (Oxyiliplatin and 5FU) and radiation to her entire pelvic area. She had 2 lymph nodes that were definately involved. It was quite uncomfortable for her, but her doctors gave her pain meds and anti-depressants, and she weathered the storm. She is still bothered a bit by 'urgency'...but makes it to the toilet in time.

    So, the end point is yes, it is doable. Yes, treatment takes it's toll for a year or so. But, as I explained to my sister when she shared that she was worried since Farrah's death, Farrah did not take this thing seriously enough at the beginning. She chose treatments that would preserve her 'beauty' instead of her life. This stuff is narly...you MUST hit it with the big guns, from the beginning.

    Hugs from 2 known survivors...
    Kathi
  • grandma2selena
    grandma2selena Member Posts: 199
    #10
    Anal Cancer
    I was diagnosed in November with Stage 1 anal cancer. I had Chemo and Radiation. I am now NED. Yes, I have some scarring from the radiation, and at times I have problems with my bowels, nothing that really stops me from having a full life. What I mean by problems is depending on what I eat, I get diahrea (more then likely from the secondary infection I got from the Chemo) anyway when that hits, due to some retention problems I have to be aware of where the nearest bathroom is. If not for the infection that causes the diaharea I don't think I would have any real issues at all.

    Now my Dr. gave me a 90% in my favor that my cancer will not return. Hang in there truly the fight is hard, but well worth it.

    Debbie
  • dasspears
    dasspears Member Posts: 227
    #11
    Also had anal cancer...
    It's my understanding from my onc's that rectal and colon cancer are not the same as anal cancer. Anal cancer tends to be squamous while rectal and colon tend to adenocarcinoma. Requires different treatment. I did have surgery to removed my small tumor. Then 6 weeks of radiation and 2 rounds of chemo: 5FU & cisplatin. Cisplatin works well on squamous cell cancer as does mitomycin.

    The radiation is bad - but I found that I healed rather quickly. I do have to use dilators because the radiation narrowed my vaginal tract. I'm 22 months out of treatment and the only other side effect I have is urgency to evacuate. I take Miralx and 4 fiber pills daily to ensure a soft bowel movement otherwise, I get anal fissures. Diet wise, I find that raw cabbage, large amount of lettuce and fried foods bother me. Otherwise, I eat what I like. So you can have some after effects but everyone is different.

    Caught in the early stages, anal cancer can be cured. Best of luck to you for the remainder of your treatments!!
  • lizdeli
    lizdeli Member Posts: 569 Member
    #12
    Anal Cancer - me too
    Hi, looks like we were diagnosed around the same time. I finished my treatments two weeks ago. I had 27 radiation treatments, weekly cisplatin and 6 weeks of 5 days of 5FU via pump. The radiation was horrible during the end of the treatment due to the pain from the dilator. I was taking pain pills an hour before my treatments. During the last two weeks of treatment I didn't feel so good. I had to be very close to a restroom. I was also very tired. Sometimes queasy. BUT, the good news is that I am two weeks out of treatment and feeling better. I have normal bowel movements, no more meds to control my bowels. I am eating normal again. Still have some fatigue. My external burns have healed pretty well. My tumor was 2.6 cm by 2 cm. No spread to organs, but a small spot in a rectal lymph node. I was treated at MD Anderson Cancer Center in Houston and I strongly recommend them to anyone seeking a first or second opinion. The Farrah story scared everyone, but from what I've been told, anal cancer is CURABLE and usually doesn't come back. I won't know my results until Dec when I go back for tests but my doctors are very optimistic.

    I know this is hard and there aren't many people out there with anal cancer. It is rare but I was told that if we have to have a cancer, this is a better one to have because it is so responsive to the chemo/radiation.

    Please email me if you have any questions or want to talk. ldeli@comcast.net

    I wish you well. Think positive.

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