Deciding treatment

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Comments

  • Majulie
    Majulie Member Posts: 8
    #22
    IMRT
    I was diagnosed on 6/12/09, with stage III, node II and I had tomotherapy, which I think is the same as IMRT. The precision allows them to avoid areas that don't need to be hit, like your bladder. Each day before treatment, they did a CT scan and then were able to each day, adjust the beam so to avoid areas they didn't want hit. It is a very complex set up process, and I was told over 40 hours were spent designing the treatment on the computer. They can also hit areas with varying levels of the radiation, so in my case, the side my tumor was on got more as well as the lymph nodes that were involved. I went to a large city with a university hospital for a 2nd opinion, and felt confident that there is really one way to treat anal cancer, radiation along with chemo (5 FU and mitomycin). Where as with breast cancer, there can be several good options and you have to decide which one is best for you. I know it is scary, because it's so rare and most doctors don't have experience with anal. My doctor was the same and had only treated one other person with anal cancer. I would highly suggest that you get at least one or two other opinions. I know it seems like a daunting task, but I think in the end, you will feel more comfortable with whatever decision you made.
  • recnac_grl
    recnac_grl Member Posts: 38
    #23
    nellie67 said:

    Thanks for all the info
    Thanks to all of you for the information, its given me some hope. I live in Springfield, MO its not a big city. The doctor I am seeing is from Cox Hospital, the Hulston Cancer Center.
    He seemed bright and was informed about the IMRT, he gave me an Oncology Journal with an article all about the research and use of that method of radiation. I am leary only because I am not sure how many times he has done this procedure for anal cancer. I asked him if he were me what he would do and he replied he would go with the IMRT. One thing I was wondering if the IMRT didnt work can they go back and do the traditional pelvic radiation or will I have to have a colostomy. All of this is so scarey and daunting, I kinda feel like its all a bad dream. What kind of questions should I ask him other than his experience level, is there a protocol for anal cancer? Thanks for info on MD Anderson Cancer Center, I had googled earlier best hospitals for cancer treatment and it was top of the list.
    nell

    Springfield, MO-nellie67
    Hello nellie
    I just read you are in Springfield, MO. I am there as well. I was wondering if you would tell me what your doctors name was who identified you had anal cancer. I don't know if you have read any of my posts, but i am trying to follow up with someone after having been diagnosed over two years ago with anal HSIL as I am concerned at this point. My original surgeon's office wont take me without cash up front and besides that, I am wanting a second opinion surgeon. Do you know of someone who I might see? Thank you in advance for any help you can assist me with. I wish you the best with your treatment and God bless you. Dottie
  • nellie67
    nellie67 Member Posts: 28 Member
    #24
    Majulie said:

    IMRT
    I was diagnosed on 6/12/09, with stage III, node II and I had tomotherapy, which I think is the same as IMRT. The precision allows them to avoid areas that don't need to be hit, like your bladder. Each day before treatment, they did a CT scan and then were able to each day, adjust the beam so to avoid areas they didn't want hit. It is a very complex set up process, and I was told over 40 hours were spent designing the treatment on the computer. They can also hit areas with varying levels of the radiation, so in my case, the side my tumor was on got more as well as the lymph nodes that were involved. I went to a large city with a university hospital for a 2nd opinion, and felt confident that there is really one way to treat anal cancer, radiation along with chemo (5 FU and mitomycin). Where as with breast cancer, there can be several good options and you have to decide which one is best for you. I know it is scary, because it's so rare and most doctors don't have experience with anal. My doctor was the same and had only treated one other person with anal cancer. I would highly suggest that you get at least one or two other opinions. I know it seems like a daunting task, but I think in the end, you will feel more comfortable with whatever decision you made.

    I am in Houston
    I decided to go to Houston, MD Anderson. Thanks to everyone for your input, after talking with the doctors here I feel pretty confident that I can beat this. They have been using the IMRT method for 5+ years and naturally see alot more of it here than back home. Thankgoodness MD Anderson takes my insurance and it wasnt too far from home, however Ive been here for bout 2 weeks and Im very home sick...=( I start my treatment the 17th this coming tuesday. Im anxious to start, I want my life back and I want to feel good again. I'll keep updates of my progress, thanks for your time.
    Best Wishes and Prayers,
    nell
  • lizdeli
    lizdeli Member Posts: 569 Member
    #25
    nellie67 said:

    I am in Houston
    I decided to go to Houston, MD Anderson. Thanks to everyone for your input, after talking with the doctors here I feel pretty confident that I can beat this. They have been using the IMRT method for 5+ years and naturally see alot more of it here than back home. Thankgoodness MD Anderson takes my insurance and it wasnt too far from home, however Ive been here for bout 2 weeks and Im very home sick...=( I start my treatment the 17th this coming tuesday. Im anxious to start, I want my life back and I want to feel good again. I'll keep updates of my progress, thanks for your time.
    Best Wishes and Prayers,
    nell

    You are in good hands
    Nell
    I am happy to hear that you opted for MDA. You will be in good hands. I just got home from there yesterday, I was back for my almost one year check up. All clear. Who are your doctors? Assuming Dr. Eng is your oncologist? MDA is hectic, but they have experience with this type of cancer. If your radiation technican is Dawn, you will love her. She is so sweet and patient. I went by to see her the other day as well. There are certain things MDA does differently during radiation. They will most likely use a dilator which is not the most comfortable thing and for sure one of the most embarrassing....but it will prevent problems post treatment. PM me if you have any questions and I will send you my phone number if you need to talk.

    Wishing you well.
    Liz
  • mp327
    mp327 Member Posts: 4,440 Member
    #26
    nellie67 said:

    I am in Houston
    I decided to go to Houston, MD Anderson. Thanks to everyone for your input, after talking with the doctors here I feel pretty confident that I can beat this. They have been using the IMRT method for 5+ years and naturally see alot more of it here than back home. Thankgoodness MD Anderson takes my insurance and it wasnt too far from home, however Ive been here for bout 2 weeks and Im very home sick...=( I start my treatment the 17th this coming tuesday. Im anxious to start, I want my life back and I want to feel good again. I'll keep updates of my progress, thanks for your time.
    Best Wishes and Prayers,
    nell

    Hi Nell!
    This is good--I'm sure you will get the very best treatment there! I wish you the very best. Please keep us posted.
  • nellie67
    nellie67 Member Posts: 28 Member
    #27
    lizdeli said:

    You are in good hands
    Nell
    I am happy to hear that you opted for MDA. You will be in good hands. I just got home from there yesterday, I was back for my almost one year check up. All clear. Who are your doctors? Assuming Dr. Eng is your oncologist? MDA is hectic, but they have experience with this type of cancer. If your radiation technican is Dawn, you will love her. She is so sweet and patient. I went by to see her the other day as well. There are certain things MDA does differently during radiation. They will most likely use a dilator which is not the most comfortable thing and for sure one of the most embarrassing....but it will prevent problems post treatment. PM me if you have any questions and I will send you my phone number if you need to talk.

    Wishing you well.
    Liz

    Lizdeli
    Liz
    I have Dr. Das and Dr. Eng, they both were really impressive and like you said I feel that I am in good hands. Yesterday I had the simulation done and they had my dilator ready to go, I was embarrassed but I got over it quick. You know you kinda reach that point were you dont really care anymore about who sees what, and the ladies were great very kind and careful. I was totally taken back by the size of this place, MD Anderson is huge and all the medical buildings in that area. Im staying close by in an apartment with my dad, we have been utilizing the shuttle system our apt offers but I think when my radiation starts Im gonna drive, Ive kinda got my direction for this area. Can I ask you what kind of chemotherapy did Dr Eng use for you? She is going to use the cisplatin for me with the 5fu, I had read that alot of ppl had gotten the mitomycin. Thanks for your response.
    Take care
    nell
  • lizdeli
    lizdeli Member Posts: 569 Member
    #28
    mp327 said:

    Hi Nell!
    This is good--I'm sure you will get the very best treatment there! I wish you the very best. Please keep us posted.

    Chemo
    Hi Nell,
    Wish I could have checked the forum the other day because we might have been able to meet in person at MDA!

    I had Cisplatin vs. Mito. i also questioned why. I was told that it was less toxic than the mito. I didn't have a bad reaction to chemo except for some mild nausea. You've got to stay hydrated though, it's critical. Whatever liquid you can tolerate, hopefully water, drink ALOT!!

    When you start to drive to MDA there is free valet parking at the radiation building. Just drive up and they will take the car for you. The radiation team is very nice. I had Dr. Crane, but met with Dr. Das once when Dr. Crane was out. Dr. Das is quiet, but he has an incredible reputation (good one). Dr. Eng is good, straight shooter. On the days you see her, probably Tues or Thurs, be prepared. It's always a long wait. Bring something to read. There are recliner chairs in the waiting area. Ask for a blanket and take a nap! The buildings get cold so I recommend taking a sweater inside with you even though it's a 100 degrees outside. They also have a library on the first floor. The whole place is overwhelming but you'll find your way around. One thing for sure - when you go for your Cisplatin treatment try to get it done at the Mays Clinic versus the Main buiding. Less crowded. Just ask the person making the appt. You'll like it better at the other building.


    Let me know if you have questions. I'll help in any way I can.

    Liz
  • recnac_grl
    recnac_grl Member Posts: 38
    #29
    nellie67 said:

    I am in Houston
    I decided to go to Houston, MD Anderson. Thanks to everyone for your input, after talking with the doctors here I feel pretty confident that I can beat this. They have been using the IMRT method for 5+ years and naturally see alot more of it here than back home. Thankgoodness MD Anderson takes my insurance and it wasnt too far from home, however Ive been here for bout 2 weeks and Im very home sick...=( I start my treatment the 17th this coming tuesday. Im anxious to start, I want my life back and I want to feel good again. I'll keep updates of my progress, thanks for your time.
    Best Wishes and Prayers,
    nell

    Warm Wishes
    Hope you are doing well and will be back home soon. Take care and prayers are with you.
    Warmly,
    Dottie
  • pjjenkins
    pjjenkins Member Posts: 173
    #30
    nellie67 said:

    I am in Houston
    I decided to go to Houston, MD Anderson. Thanks to everyone for your input, after talking with the doctors here I feel pretty confident that I can beat this. They have been using the IMRT method for 5+ years and naturally see alot more of it here than back home. Thankgoodness MD Anderson takes my insurance and it wasnt too far from home, however Ive been here for bout 2 weeks and Im very home sick...=( I start my treatment the 17th this coming tuesday. Im anxious to start, I want my life back and I want to feel good again. I'll keep updates of my progress, thanks for your time.
    Best Wishes and Prayers,
    nell

    Best wishes as
    you embark on treatment.... God bless!
    PJ
  • Fastinshiks
    Fastinshiks Member Posts: 1
    #31
    nellie67 said:

    Thanks for all the info
    Thanks to all of you for the information, its given me some hope. I live in Springfield, MO its not a big city. The doctor I am seeing is from Cox Hospital, the Hulston Cancer Center.
    He seemed bright and was informed about the IMRT, he gave me an Oncology Journal with an article all about the research and use of that method of radiation. I am leary only because I am not sure how many times he has done this procedure for anal cancer. I asked him if he were me what he would do and he replied he would go with the IMRT. One thing I was wondering if the IMRT didnt work can they go back and do the traditional pelvic radiation or will I have to have a colostomy. All of this is so scarey and daunting, I kinda feel like its all a bad dream. What kind of questions should I ask him other than his experience level, is there a protocol for anal cancer? Thanks for info on MD Anderson Cancer Center, I had googled earlier best hospitals for cancer treatment and it was top of the list.
    nell

    Information!

    This is gratitude to me to pay the thanks for giving the information as cited above so this thing is better to take more knoweldge and all the possible benefits by this detail.

    pt best practices

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #32
    Fastinshiks said:

    Information!

    This is gratitude to me to pay the thanks for giving the information as cited above so this thing is better to take more knoweldge and all the possible benefits by this detail.

    pt best practices

    Info

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