Anal cancer reoccurence

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Huskergal
Huskergal Member Posts: 7
in Anal Cancer #1

 I am looking for someone like me. I have been diagnosed with reoccurent squamous cell cancer of the anus. Three years ago  I had radiation and 5FU and mitomycin chemotherapy. Now that it has reoccurred, I have been told I need an APR with flap reconstruction due to radiation damage. I’m looking for someone out there who has gone through this surgery and can give me real info about what I’m am facing in recovery. 

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  • eihtak
    eihtak Member Posts: 1,473 Member
    #2
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    Huskergal...

    Hi,

    Don't know if you saw my response under the earlier thread: Is a colostomy the only option after recurrence?

    While my situation is a bit different it may help you find some answers.

    katheryn

  • StruTanToot
    StruTanToot Member Posts: 126 Member
    edited February 2018 #3
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    I've very concerned and scared about mine reoccuring...biopsies show precancerous. If I recall correctly, my radiation oncologist once told me that a colostomy would not be my only option.

    Check what's going on at the University of CA, San Francisco.

    Whatever happens, I know the fear and dread. You will be in my prayers. Stay strong. You will make it through. 

  • Huskergal
    Huskergal Member Posts: 7
    #4
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    eihtak said:

    Huskergal...

    Hi,

    Don't know if you saw my response under the earlier thread: Is a colostomy the only option after recurrence?

    While my situation is a bit different it may help you find some answers.

    katheryn

     Thanks for answering. I did

     Thanks for answering. I did have a chance to read your earlier thread. I’m not that afraid of the colostomy, the extensive grafting and reconstruction scares the crap out of me. I need to talk to someone who specifically has gone through that so I truly know with the recovery is like. 

  • Huskergal
    Huskergal Member Posts: 7
    #5
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    StruTanToot said:

    I've very concerned and scared about mine reoccuring...biopsies show precancerous. If I recall correctly, my radiation oncologist once told me that a colostomy would not be my only option.

    Check what's going on at the University of CA, San Francisco.

    Whatever happens, I know the fear and dread. You will be in my prayers. Stay strong. You will make it through. 

     The odds are with you, the

     The odds are with you, the great majority of these cancers do not reoccur.   Unfortunately I think I’m stuck with the surgery option since my reoccurrence will not respond to chemo therapy, immunotherapy is out and cannot have more radiation.  Good luck to you!

  • StruTanToot
    StruTanToot Member Posts: 126 Member
    #6
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    Huskergal said:

     The odds are with you, the

     The odds are with you, the great majority of these cancers do not reoccur.   Unfortunately I think I’m stuck with the surgery option since my reoccurrence will not respond to chemo therapy, immunotherapy is out and cannot have more radiation.  Good luck to you!

    I wish I knew something

    I wish I knew something better to day than, "it will be okay." I just don't understand some of these things. 

    The grace of God will carry you through. You truly are in my thoughts and prayers.

     

  • GoodDog2
    GoodDog2 Member Posts: 22 Member
    #7
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    That seems like a long time for a recurrence, I’m sorry to hear that. Did they find it on mri scan or exam? I always wonder how we would know if something isnt right because things not being quite right is the new normal.

  • Sparrow1946
    Sparrow1946 Member Posts: 17
    #8
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    I finished chemo and radiation last June. I had a biopsy in November, and I'm cancer free. Thank God. My oncologist told me I could never have anal cancer again. i have a lot of trust and respect for him.

    is it true it can't come back? My transplant rejection medicine caused the cancer. Do any of you know of a organ transplant that has cancer from rejection medication or who has had cancer from Imuran, a medication? 

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited February 2018 #9
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    Sparrow1946 said:

    I finished chemo and radiation last June. I had a biopsy in November, and I'm cancer free. Thank God. My oncologist told me I could never have anal cancer again. i have a lot of trust and respect for him.

    is it true it can't come back? My transplant rejection medicine caused the cancer. Do any of you know of a organ transplant that has cancer from rejection medication or who has had cancer from Imuran, a medication? 

    Sparrow1946

    Hi, congratulations on your good news as of November, it is surely worth celebrating! 

    I am no doctor but would assume that the idea of transplant rejection medication causing cancer is more in the way that the meds suppress a persons immune system making one much more susceptible when otherwise may have been able to overcome. If by chance your anal cancer was related to HPV (a virus that most often comes and goes throughout life never causing any issues), having a weakened immune system may have been just enough to fuel the fire.

    As far as "can cancer come back"...that is unknown, even to the most educated in that field. I don't know enough of your personal health details, but maybe your oncologist meant to say that in your case it was "unlikely". (For insurance, it is important to do what you can to keep a healthy immune system)

    I was treated for anal cancer in 2011 and at almost 4 years to the date, was diagnosed with anal cancer recurrance via mets to my lung. It has been 3 years since that, and today I am well, but staying mindful that tomorrow holds no guarantees. In the mean time, I am active, healthy, happy, and enjoying life! I wish the same for you!

    Be well....

    katheryn

     

     

     

     

  • Huskergal
    Huskergal Member Posts: 7
    #10
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    GoodDog2 said:

    That seems like a long time for a recurrence, I’m sorry to hear that. Did they find it on mri scan or exam? I always wonder how we would know if something isnt right because things not being quite right is the new normal.

     I was having some problems

     I was having some problems that mirrored my original symptoms. The reoccurrence was not picked up on the MRI, I had a colonoscopy with the biopsy at the radiation scarred areas and that’s how they found the squamous cells. 

  • Sparrow1946
    Sparrow1946 Member Posts: 17
    edited February 2018 #11
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    eihtak said:

    Sparrow1946

    Hi, congratulations on your good news as of November, it is surely worth celebrating! 

    I am no doctor but would assume that the idea of transplant rejection medication causing cancer is more in the way that the meds suppress a persons immune system making one much more susceptible when otherwise may have been able to overcome. If by chance your anal cancer was related to HPV (a virus that most often comes and goes throughout life never causing any issues), having a weakened immune system may have been just enough to fuel the fire.

    As far as "can cancer come back"...that is unknown, even to the most educated in that field. I don't know enough of your personal health details, but maybe your oncologist meant to say that in your case it was "unlikely". (For insurance, it is important to do what you can to keep a healthy immune system)

    I was treated for anal cancer in 2011 and at almost 4 years to the date, was diagnosed with anal cancer recurrance via mets to my lung. It has been 3 years since that, and today I am well, but staying mindful that tomorrow holds no guarantees. In the mean time, I am active, healthy, happy, and enjoying life! I wish the same for you!

    Be well....

    katheryn

     

     

     

     

    My nephrologist

    Told me my rejection medication had caused the anal cancer. I finally decided to not change m meds for my transplant and pray for the best. I don't want to lose my kidney and be dependent on dyalsis For the rest of my life. M 71 and I've had this kidney for 37 going on 38 years. I know I've been blessed. I'll trust that I can enjoy my golden years.

    Thank you for responding. Peace and love to you.

  • eihtak
    eihtak Member Posts: 1,473 Member
    #12
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    Sparrow1946 said:

    My nephrologist

    Told me my rejection medication had caused the anal cancer. I finally decided to not change m meds for my transplant and pray for the best. I don't want to lose my kidney and be dependent on dyalsis For the rest of my life. M 71 and I've had this kidney for 37 going on 38 years. I know I've been blessed. I'll trust that I can enjoy my golden years.

    Thank you for responding. Peace and love to you.

    Sparrow1946...

    It sounds like a good plan to me. I feel like its important to trust the advice of our medical team and if we don't to seek another opinion. Once we've made a decision though, its often best to go with it!

    You are right, that kidney you have is a blessing!

    Prayers to you for many many healthy happy golden years ahead...

    katheryn

  • Sparrow1946
    Sparrow1946 Member Posts: 17
    edited February 2018 #13
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    eihtak said:

    Sparrow1946...

    It sounds like a good plan to me. I feel like its important to trust the advice of our medical team and if we don't to seek another opinion. Once we've made a decision though, its often best to go with it!

    You are right, that kidney you have is a blessing!

    Prayers to you for many many healthy happy golden years ahead...

    katheryn

    Thank you

    For being so kind. I've felt freedom since talking with my dr and my family. No doubt chemo and radiation was hard. I think harder than dyalsis, but the time is so much shorter.

    Thank you for the blessings. God bless you in all that you do. Peace and comfort for many years of life for you.

  • jajmom
    jajmom Member Posts: 33 Member
    #14
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    Huskergal,

    I am sorry to hear of your anal cancer reccurence. It is a possibility that we all must face, but so far (9mos. out from treatment) I have not had to experience that. My friend, however, has just had similar surgery due to a very aggressive colorectal cancer. She was about 2-3 months out from chemo and radiation therapy. She is not on this board so cannot comment but I will let you know what I can tell you. The surgery was quite lengthly and involved. Although her wounds are healing well, the process has not been an easy one. It was about 3-4 weeks before she was allowed to spend any time sitting and was unable to do so even when "allowed" due to discomfort. She also needed to sleep on her sides during that time which caused hip pain. Otherwise she said she is healing very well, she is a very positive person and a great inspiration to me. I don't know to what degree you would like to be "informed", but there is a very detailed sugery on youtube depicting this procedure. It would definitely prepare you for what you will be dealing with, but it is not for anyone who would be disturbed by graphic surgery, especially if you are facing this procedure. From what I gathered, this procedure is used on patients who have recurrence and radiotherapy damage because the tissue at the resection site (anus) will not heal properly.

    I researched the procedure knowing that my oncologist told me that this is what would be necessay if my cancer did not respond to treatment or would return. I wanted to be aware of what I would be facing in the event my chemo/radiation was not successful. To be honest, it was a little difficult to watch and it is definitely not for everyone. But, I always felt the more I knew, the better prepared I was. I was taken off guard by the radio therapy side-effects, short and long term. (Doctors were not very forward with information and still are quite non-commital regarding post-radiation issues.) I vowed to never approach anything regarding my health, my body, without understanding again.

    I wish you the best in your upcoming surgery. My friend's surgeon has told her that she is cancer free! Yay! She made an informed decision to have this surgery and did so after getting a second opinion from a large cancer treatment facility. This gave her the peace-of-mind she was looking for.

    Best wishes,

    Chris

  • Huskergal
    Huskergal Member Posts: 7
    #15
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     Thanks Chris! That is

     Thanks Chris! That is exactly the type that information I was looking for.  I too have learned the hard way that the more information that you can gat her, the better. Radiation was agony for me and it took many months before I had the slightest degree of control over diarrhea. Therefore I want to go into the surgery fully knowledgeable about the arrangements I will have to make for healing and recovery. I have read all I can and looked at the YouTube videos to understand why the surgery has to be so complicated.  I am from Arkansas and plan on getting the surgery done at M.D. Anderson so being able to arrange transport, after care etc.  is of critical importance to me. Any additional info that you can give me about the recovery process would be helpful. Also if your friend would be interested in talking directly with me, I would truly appreciate it. Let me know and I will forward my phone number.

     

    thanks,

    Stephanie

  • jajmom
    jajmom Member Posts: 33 Member
    edited February 2018 #16
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    Huskergal said:

     Thanks Chris! That is

     Thanks Chris! That is exactly the type that information I was looking for.  I too have learned the hard way that the more information that you can gat her, the better. Radiation was agony for me and it took many months before I had the slightest degree of control over diarrhea. Therefore I want to go into the surgery fully knowledgeable about the arrangements I will have to make for healing and recovery. I have read all I can and looked at the YouTube videos to understand why the surgery has to be so complicated.  I am from Arkansas and plan on getting the surgery done at M.D. Anderson so being able to arrange transport, after care etc.  is of critical importance to me. Any additional info that you can give me about the recovery process would be helpful. Also if your friend would be interested in talking directly with me, I would truly appreciate it. Let me know and I will forward my phone number.

     

    thanks,

    Stephanie

    Stephanie

    I do apologize, I did not see that you had wrote me back. I wanted to let you know that I will speak my friend and see if she would be willing to discuss this surgery and her recovery process. I did see her at church this past Sunday (first time back :) and and being ever so positve told everyone she was doing great! I believe however she was intendinding on standing for much of the service in the back if needed. She is still very uncomfortable when attempting to sit even though her wounds are healing nicely. She said now (5 weeks out from surgery) that she has pretty much adjusted to her new self. She sees her oncologist soon and is probably facing a very tough chemo regimen due to the nature of her cancer. She did have clean biopsies from the magins after her surgery and is hoping her onc will reconsider the chemo.

    How soon is your surgery being scheduled? I really must apologize if my delay in responding has gone past your surgery date.

    Please take care and let us know how you are doing,

    Chris

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