Deciding treatment

nellie67
nellie67 Member Posts: 28 Member
edited March 2014 in Anal Cancer #1
I was wondering if anyone out there had IMRT instead of the full pelvic radiation. I am
recently diagnosed and waiting for a PET scan to verify if the cancer was in my lymphnodes as one lymphnode across from were the tumor is was slightly "puffed" 7mm.
My doctor told me about IMRT and that it was not used enough nor long enough to really have much statistics on the outcomes. Ive read alot of info about it and how it is becoming more of a treatment method but that accuracy and dosage were very important. If anyone out there has had IMRT or know anything about it, please respond.
Thanks,
nell
«1

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    Nell
    Hi Nell,

    I had IMRT for anal verge cancer stage II NOMO. I completed tx on 6-30-09 and so far I show NED (no evidence of disease). I had no lymph node involvement, but was told they would zap the lymph nodes anyway to make sure that if anything was there it would be treated. The IMRT is better because it doesn't blanked the entire area, but instead focuses in on where the cancer is, therefore leaving healthy tissue alone. I hope this helps. Welcome and I'm sorry you have to be here. Lori
  • nellie67
    nellie67 Member Posts: 28 Member
    #3
    z said:

    Nell
    Hi Nell,

    I had IMRT for anal verge cancer stage II NOMO. I completed tx on 6-30-09 and so far I show NED (no evidence of disease). I had no lymph node involvement, but was told they would zap the lymph nodes anyway to make sure that if anything was there it would be treated. The IMRT is better because it doesn't blanked the entire area, but instead focuses in on where the cancer is, therefore leaving healthy tissue alone. I hope this helps. Welcome and I'm sorry you have to be here. Lori

    Lori
    Thanks for the response, do you mind if I ask where you had your treatment done. I live in a small community with limited doctors and they only see 4-5 cases of anal cancer a year. Im afraid they may lack in experience with IMRT.
  • z
    z Member Posts: 1,414 Member
    #4
    nellie67 said:

    Lori
    Thanks for the response, do you mind if I ask where you had your treatment done. I live in a small community with limited doctors and they only see 4-5 cases of anal cancer a year. Im afraid they may lack in experience with IMRT.

    Nell
    Hi Nell,

    I live near the Tampa Florida area. I had my tx done at an radiologist out patient facility, with the most update equipment. If your drs want to treat you with the IMRT, which I believe is the best use of radiation technology for directed radiation treatments, for anal cancer, I would hope that they would be well trained in this field. I would imagine they would have to be certified to use the technology. Could you look into their credentials and medical certifications? I know its scary and you want to make sure you get the best tx possible. Hopefully more anal cancer survivors that have had IMRT, which I believe the posters that I am familiar with have had IMRT, will chime in. Lori
  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    Hi Nell
    I would recommend that you insist on getting treated with IMRT and at a facility that has experience in using this type of radiation to treat anal cancer. This radiation will be more precise and cause much less damage to surrounding tissue. As someone who has been through this treatment for anal cancer, I can not stress enough the importance of preserving as much of the surrounding area as possible. I urge you to do some research on IMRT on the internet, so you can be familiar enough with it to discuss this with your doctors. If your doctors seem uninformed with this type of radiation, seek a second opinion and go elsewhere! I wish you the very best.
  • lizdeli
    lizdeli Member Posts: 569 Member
    #6
    mp327 said:

    Hi Nell
    I would recommend that you insist on getting treated with IMRT and at a facility that has experience in using this type of radiation to treat anal cancer. This radiation will be more precise and cause much less damage to surrounding tissue. As someone who has been through this treatment for anal cancer, I can not stress enough the importance of preserving as much of the surrounding area as possible. I urge you to do some research on IMRT on the internet, so you can be familiar enough with it to discuss this with your doctors. If your doctors seem uninformed with this type of radiation, seek a second opinion and go elsewhere! I wish you the very best.

    IMRT
    Hi Nell
    I agree with all the comments already made. I received IMRT, finsihed on 9/11/09. So far all is good as I inch toward my one year anniversary. Radiation can cause organ damage and IMRT helps to minimize that by targeting certain spots. I had a 2 cm tumor and two small spots in my perirectal lymph nodes. Like Lori, the doctors said they were going to zap the nodes anyway.

    I was treated at MD Anderson Medical Center in Houston, Texas. Dr. Christopher Crane is the head of Gastrointestinal Radiation there and much can be googled on the internet about IMRT and some of his research.

    As the others have said, it is important to be some placw with doctors that have experience with all of this. It is a rare cancer so not every doctor has seen it. Please ask your doctors about their experience with this type of cancer. What state and/or city are you in?

    Glad you found this forum, but of course we wish you didn't need to. You'll find a lot of support here.

    Wishing you well,
    Liz
  • lisa09
    lisa09 Member Posts: 32
    #7
    lizdeli said:

    IMRT
    Hi Nell
    I agree with all the comments already made. I received IMRT, finsihed on 9/11/09. So far all is good as I inch toward my one year anniversary. Radiation can cause organ damage and IMRT helps to minimize that by targeting certain spots. I had a 2 cm tumor and two small spots in my perirectal lymph nodes. Like Lori, the doctors said they were going to zap the nodes anyway.

    I was treated at MD Anderson Medical Center in Houston, Texas. Dr. Christopher Crane is the head of Gastrointestinal Radiation there and much can be googled on the internet about IMRT and some of his research.

    As the others have said, it is important to be some placw with doctors that have experience with all of this. It is a rare cancer so not every doctor has seen it. Please ask your doctors about their experience with this type of cancer. What state and/or city are you in?

    Glad you found this forum, but of course we wish you didn't need to. You'll find a lot of support here.

    Wishing you well,
    Liz

    IMRT
    I inquired about IMRT immediately, but was told as stage III with lymph node involvement, that I wasn't a candidate. They targeted my whole pelvis. Definitely the way to go if you can - if you can minimize the damage to other tissues/organs I would think side effects will be minimized.

    Lisa
  • nellie67
    nellie67 Member Posts: 28 Member
    #8
    lisa09 said:

    IMRT
    I inquired about IMRT immediately, but was told as stage III with lymph node involvement, that I wasn't a candidate. They targeted my whole pelvis. Definitely the way to go if you can - if you can minimize the damage to other tissues/organs I would think side effects will be minimized.

    Lisa

    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
  • z
    z Member Posts: 1,414 Member
    #9
    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

    NCCN guidelines
    Hi Nell,

    If you google NCCN guidelines, there should be very updated information there, so that you may inquire about anal carcinoma, and what the treatment protocol is. I had the standard (Nigro) treatment. Nigro is the Dr. who discovered many years ago that anal cancer didn't have to be treated with permanant colostomy. I had 96 hr 5fu chemo along with an infusion of mytomycin on the 1st chemo day. And then in the 4th week I had another 96 hr 5fu chemo. I had 30 radiation zaps along with the chemo. I had the chemo 5 days a week. And yes when I was diagnosed it did seem like a bad dream. The 1st thing my general surgeon said to me upon telling me he was 95% sure it was anal cancer, was that this is a curable cancer. I hope you find all the information that you need to make a good decision for yourself. Lori
  • pjjenkins
    pjjenkins Member Posts: 173
    #10
    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

    IMRT
    My diagnosis came 6 months after "our" new cancer center opened here in rural Maine - in a town of fewer than 20,000 people. The IMRT radiation equipment is touted as the newest and best and I worried a lot about whether to stay here or go to Boston to the larger medical centers. Like you, I did as much research as I could in the few days between that initial scramble of appointments and did very much feel rushed into some decisions. That said, I was almost in panic mode to start getting treatment as I had known for a long time - the better part of a year in my heart of hearts - that this was no ordinary hemorrhoid and I wanted it done with!

    After phone calls to the ACS people - they were great - and work on weekends! - I decided that the treatment is fairly standard though the cancer is rare and our "tumor board" had not seen it before, that staying close to home with my family and friends and church, etc. was probably the best. (And the costs of the travel were going to be very difficult for me.) I did have one very teary consultation with an oncology nurse - I am convinced they are angels.

    I have not regretted my decision. I continue NED (No Evidence of Disease) and know that if I have any recurrence, I am lined up at the Dana Farber Cancer Center in Boston. Pray to God that I will not need it. And that you will also be NED after treatment.

    We hold you and others at the start of their journeys in our hearts and minds.

    Priscilla
  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    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

    Hi Nellie--
    I'd like to comment on your question about if the IMRT doesn't work. It WILL work and will be better than any other type of radiation therapy. When people receive this treatment, most of them get their lifetime max of radiation to the area. So, unfortunately, in cases where the cancer recurs or persists, the next step is normally colostomy. This is why it's so important that you get this done at a facility that has experience in treating anal cancer. MDA would be a very good place to go.
  • dasspears
    dasspears Member Posts: 227
    #12
    I had IMRT....
    I was treated at Richardson Cancer Center, an affiliate of UTSW. They used the Lance Armstrong Shaped Laser Beam. Very successful and less invasive than full pelvic radiation. Still had burns, etc., but not to the same extend.
  • sissy310
    sissy310 Member Posts: 300
    #13
    lisa09 said:

    IMRT
    I inquired about IMRT immediately, but was told as stage III with lymph node involvement, that I wasn't a candidate. They targeted my whole pelvis. Definitely the way to go if you can - if you can minimize the damage to other tissues/organs I would think side effects will be minimized.

    Lisa

    Hi Lisa - I too was
    Hi Lisa - I too was diagnosed with Stage III with lymph node involvement...they did not really give me an indication as to whether or not I was a candidate but I am assuming I was not as they are targeting my whole pelvis as well. I meet with my radiologist tomorrow and may ask her about this just out of curiosity. Marilyne
  • sissy310
    sissy310 Member Posts: 300
    #14
    lisa09 said:

    IMRT
    I inquired about IMRT immediately, but was told as stage III with lymph node involvement, that I wasn't a candidate. They targeted my whole pelvis. Definitely the way to go if you can - if you can minimize the damage to other tissues/organs I would think side effects will be minimized.

    Lisa

    Hi Lisa - I too was
    Hi Lisa - I too was diagnosed with Stage III with lymph node involvement...they did not really give me an indication as to whether or not I was a candidate but I am assuming I was not as they are targeting my whole pelvis as well. I meet with my radiologist tomorrow and may ask her about this just out of curiosity. Marilyne
  • Unknown
    Unknown
    #15
    dasspears said:

    I had IMRT....
    I was treated at Richardson Cancer Center, an affiliate of UTSW. They used the Lance Armstrong Shaped Laser Beam. Very successful and less invasive than full pelvic radiation. Still had burns, etc., but not to the same extend.

    This comment has been removed by the Moderator
  • lizdeli
    lizdeli Member Posts: 569 Member
    #16
    unknown said:

    This comment has been removed by the Moderator

    IMRT
    I was Stage III with suspected lymph node involvement and received IMRT. I guess doctors vary on their approaches. I was told IMRT is more targeted.

    Lance Armstrong shaped beam? Never heard of that. I am curious too, what shape is it?

    Liz
  • mp327
    mp327 Member Posts: 4,440 Member
    #17
    lizdeli said:

    IMRT
    I was Stage III with suspected lymph node involvement and received IMRT. I guess doctors vary on their approaches. I was told IMRT is more targeted.

    Lance Armstrong shaped beam? Never heard of that. I am curious too, what shape is it?

    Liz

    IMRT
    I believe if you Google Lance Armstrong Shaped Beam Surgery, you'll find out that this is Novalis radiation beamed therapy, which has run ads on TV in recent months. I have not done any research on this type of therapy, so I don't know how it differs from other types, but I'm pretty sure it's not shaped like Lance!
  • sissy310
    sissy310 Member Posts: 300
    #18
    lisa09 said:

    IMRT
    I inquired about IMRT immediately, but was told as stage III with lymph node involvement, that I wasn't a candidate. They targeted my whole pelvis. Definitely the way to go if you can - if you can minimize the damage to other tissues/organs I would think side effects will be minimized.

    Lisa

    Like you, I'm not having
    Like you, I'm not having IMRT because of stage III and node involvement. I asked my radiologist about why I didn't get that and her comment was that she felt it was less damaging doing the whole pelvis all the way around. I am assuming that is what you had, the radiation was done in quadrants around your whole pelvic, backside area? I counted 8 separate areas they radiate for about 1-2 minutes each. I would think the IMRT would be better but if nodes are involved I guess that makes it harder.
  • sissy310
    sissy310 Member Posts: 300
    #19
    unknown said:

    This comment has been removed by the Moderator

    I'm looking forward to
    I'm looking forward to hearing the response to this...glad you asked.
  • dasspears
    dasspears Member Posts: 227
    #20
    unknown said:

    This comment has been removed by the Moderator

    LOL!!
    Didn't look a thing like him!!!
  • dasspears
    dasspears Member Posts: 227
    #21
    dasspears said:

    LOL!!
    Didn't look a thing like him!!!

    More info...
    Lance Armstrong, three-time consecutive winner of the Tour de France and cancer survivor, today introduced the Lance Armstrong Shaped Beam Surgery(TM) Program at Baylor/Richardson Medical Center in Texas. Baylor/Richardson is the first medical center in Texas to offer Novalis® Shaped Beam Surgery(TM), a highly precise, focused radiation therapy technology that enables physicians to treat tumors of the brain, head, neck, spine, liver, lung and prostate without harming surrounding healthy tissue.

    It's a very precise therapy that uses shaped beams to match the target area.

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