mets to lymph node

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annstran
annstran Member Posts: 4
in Anal Cancer #1

I was diagnosed with anal cancer in early 2013. I had the standard Nigro protocol which was interrupted for two weeks when I was hospitalized with an ileus – ouch – but I eventually finished the treatment, put it all behind me (har har) and went on with my life. I was sadly suprised last month when a PETscan and needle biopsy revealed a tumor on a lymph node close to my bladder. My beloved surgical oncologist is very glad that the cancer has not metastasized to either liver or lung; he reminds me that it took 3.5 years for the cancer to move 8 inches, and says that we will treat it and watch it. (I think this is akin to telling elderly gentlemen with prostate cancer that something else will kill them before the cancer, as I am 80). My question concerns the treatment options: surgery or radiation? The surgery would be tricky and debilitating, but it would be more conclusive, as we could actually see what more might be in there. Radiation has its problems as we all know: another ileus????  Arghhhhhhh... But in this case I would have only five treatments. I am going to The Brigham this week for a second opinion.  I would be very grateful to hear from any of you who might have had a similar recurrence and to learn what route you chose. Thank you! Annstran

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  • mp327
    mp327 Member Posts: 4,440 Member
    #2
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    Annstran

    I have not experienced this, so I'm probably not much help.  I'm sorry your cancer has returned.  However, it sounds like your prognosis is quite good.  I'm wondering if they could even do more radiation on you since you've already had the radiation for anal cancer.  I guess it depends on how much you got.  It's a tough call.  I hope getting a second opinion will make your decision easier.  I think that's a very wise thing to do.  I wish you all the very best.  Please keep us posted as to what you will do and we will support you!

    Martha

  • annstran
    annstran Member Posts: 4
    #3
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    mp327 said:

    Annstran

    I have not experienced this, so I'm probably not much help.  I'm sorry your cancer has returned.  However, it sounds like your prognosis is quite good.  I'm wondering if they could even do more radiation on you since you've already had the radiation for anal cancer.  I guess it depends on how much you got.  It's a tough call.  I hope getting a second opinion will make your decision easier.  I think that's a very wise thing to do.  I wish you all the very best.  Please keep us posted as to what you will do and we will support you!

    Martha

    Thank you, Martha. What a

    Thank you, Martha. What a steadfast friend you are to all of us out here! My MD did consult with my radiation oncologist to see if I could have more zaps. Luckily, the new tumor is above the original radiation area, so I'm good to go if that is what is recommended. Apparently the main side effect will be diarrhea. Really??? I think I will buy stock in whoever makes Immodium and Depends. Smile I'll keep you posted. Ann

  • tanda
    tanda Member Posts: 174 Member
    #4
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    Annstrom

    I am so sorry to hear you news.

    If radiation might be an option, I would encourage you to seek a consultation with Mass General Radiation Oncology.  Mass General is currently doing a pilot study using their PENCIL BEAM SCANNING PROTON MACHINE to treat anal cancer.

    Pencil beam scanning is often used to target tumours in difficult and/or vulnerable areas.  The theory is that the pencil beam is very accurate and may cause less tissue damage to surrounding areas.  There is no long term comparative data as yet, but  results have been encouraging  It is very expensive, but so far Medicare is covering proton radiation.  I understand that the pencil beam has been used in areas near previous radiation.

    My a.c was treated with pencil beam radiation at the U of Pennsylvania.  I had most of the same side effects as everyone else, but my hope was that there would be less long term damage.  I finished tratment in Aprill 2015 and am doing very well.

    Please stay in touch and let us know how you are doing.  It sounds as if you have a wonderful treatment team and it shouldn't be hard to get in touch with Mass General, if it appears that radiation might be an option..

    Tanda

  • tanda
    tanda Member Posts: 174 Member
    #5
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    Annstrom

    I am so sorry to hear you news.

    If radiation might be an option, I would encourage you to seek a consultation with Mass General Radiation Oncology.  Mass General is currently doing a pilot study using their PENCIL BEAM SCANNING PROTON MACHINE to treat anal cancer.

    Pencil beam scanning is often used to target tumours in difficult and/or vulnerable areas.  The theory is that the pencil beam is very accurate and may cause less tissue damage to surrounding areas.  There is no long term comparative data as yet, but  results have been encouraging  It is very expensive, but so far Medicare is covering proton radiation.  I understand that the pencil beam has been used in areas near previous radiation.

    My a.c was treated with pencil beam radiation at the U of Pennsylvania.  I had most of the same side effects as everyone else, but my hope was that there would be less long term damage.  I finished tratment in Aprill 2015 and am doing very well.

    Please stay in touch and let us know how you are doing.  It sounds as if you have a wonderful treatment team and it shouldn't be hard to get in touch with Mass General, if it appears that radiation might be an option..

    Tanda

  • annstran
    annstran Member Posts: 4
    #6
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    tanda said:

    Annstrom

    I am so sorry to hear you news.

    If radiation might be an option, I would encourage you to seek a consultation with Mass General Radiation Oncology.  Mass General is currently doing a pilot study using their PENCIL BEAM SCANNING PROTON MACHINE to treat anal cancer.

    Pencil beam scanning is often used to target tumours in difficult and/or vulnerable areas.  The theory is that the pencil beam is very accurate and may cause less tissue damage to surrounding areas.  There is no long term comparative data as yet, but  results have been encouraging  It is very expensive, but so far Medicare is covering proton radiation.  I understand that the pencil beam has been used in areas near previous radiation.

    My a.c was treated with pencil beam radiation at the U of Pennsylvania.  I had most of the same side effects as everyone else, but my hope was that there would be less long term damage.  I finished tratment in Aprill 2015 and am doing very well.

    Please stay in touch and let us know how you are doing.  It sounds as if you have a wonderful treatment team and it shouldn't be hard to get in touch with Mass General, if it appears that radiation might be an option..

    Tanda

    Thank you, Tanda, for that

    Thank you, Tanda, for that excellent advice. I would welcome as tiny a new beam as possible in my radiation-and-adhesion-damaged jungle of intestines. Since I am traveling to Boston on Wednesday to consult at the Brigham, I will see if I can make an appointment at Mass General as well. I have a friend there who specializes in breast cancer, so she should be able to steer me to the right resource. Stay tuned.  Ann

  • mp327
    mp327 Member Posts: 4,440 Member
    edited July 2016 #7
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    annstran said:

    Thank you, Martha. What a

    Thank you, Martha. What a steadfast friend you are to all of us out here! My MD did consult with my radiation oncologist to see if I could have more zaps. Luckily, the new tumor is above the original radiation area, so I'm good to go if that is what is recommended. Apparently the main side effect will be diarrhea. Really??? I think I will buy stock in whoever makes Immodium and Depends. Smile I'll keep you posted. Ann

    Ann

    Thank you for your kind words.  I'm glad you checked with your rad onc about receiving more radiation and that that would be an option for you.  While it certainly wouldn't be any fun, it would probably make for an easier recovery than surgery.  I do hope this all gets sorted out soon so you can go after this.  Thanks for keeping us posted.  I send you prayers and good thoughts!

    Martha

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