Anyone have to stop their radiation treatments early? Have you remained cancer free?

islandgirlculebra
islandgirlculebra Member Posts: 155 Member
in Anal Cancer #1
I had Stage III Anal cancer and received the standard treatment of chemo and radiation in March and April of 2012. I unfortunately had to stop about six treatments short of the planned amount of radiation treatments due to complications. Although my PET scan came out clean in July 2012, the colo-rectal surgeon warned me that the "recommendation" for people who don't receive all the radiation treatment is to have surgery (which for me would require wearing a permanent colostomy bag) and that I have a greater chance of it coming back due to not receiving all the treatments. When I asked if he had any stats on this, he said no. So I'm just wondering if there are any out there who had this same experience and how they made out long-term as far as re-occurence. Also THANKS SO MUCH to all of you who reach out on this website - it has helped me to know that others have ongoing issues which seem to be radiation related, and has helped me greatly in the "worry" department of my brain.....

Comments

  • Jo Joy
    Jo Joy Member Posts: 40
    #2
    Number of treatments
    I trust my radiation oncologist explicitly and she has only ordered 25 treatments for me. She is young but graduated with her undergraduate and medical degree from Harvard. She then did her residency at University of California San Francisco as chief resident where she treated more than the average cases of anal cancer. She has also done research at NIH under a fellowship.I also want to add that she is one of the most caring doctor I have ever met next to my chemotherapy oncologist.

    So when she ordered 25 treatments I was confident she knew what she was doing. My staging was I to II. They aren't sure how deep it was and so staging wasn't specific. What they could see of the tumor was 1.5 cm. My chemo oncologist said that sometimes you have to take what the colorectal surgeon says with caution because they like to do surgery.

    If surgery is what is recommended I would consult with your oncologists and a different surgeon they would recommend.
  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    Stopping Radiation Early
    I'm sorry this happened to you. I will only tell you what I would do in your shoes. First of all, I would insist on getting another scan 6 months after your one in July, which would be sometime in January, to see if there is any suggestion of recurrence. You should also be seeing you colorectal doctor every 3 months (I would not be okay with every 6 months because of the shortened treatment). Make sure at each of those visits you get a digital rectal exam AND anoscope. If at any point your colorectal doctor has reason to believe your cancer is residual or has recurred, GET A SECOND OPINION from another colorectal doctor. As has already been said, some surgeons quickly suggest surgery because that's what they do. For him/her to tell you that surgery is recommended in patients who did not receive the full course of treatment sounds like jumping the gun to me. Your cancer may have been totally resolved by the treatment, which I hope is the case.
  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #4
    mp327 said:

    Stopping Radiation Early
    I'm sorry this happened to you. I will only tell you what I would do in your shoes. First of all, I would insist on getting another scan 6 months after your one in July, which would be sometime in January, to see if there is any suggestion of recurrence. You should also be seeing you colorectal doctor every 3 months (I would not be okay with every 6 months because of the shortened treatment). Make sure at each of those visits you get a digital rectal exam AND anoscope. If at any point your colorectal doctor has reason to believe your cancer is residual or has recurred, GET A SECOND OPINION from another colorectal doctor. As has already been said, some surgeons quickly suggest surgery because that's what they do. For him/her to tell you that surgery is recommended in patients who did not receive the full course of treatment sounds like jumping the gun to me. Your cancer may have been totally resolved by the treatment, which I hope is the case.

    Thank you so much. I have
    Thank you so much. I have read many posts recently since I discovered this site. I would like to tell you that you are a special person, an awesome lady, and are an inspiration to many of us, I am sure. You have a special gift for compassionately and intelligently getting information to people.....I am getting a PET Scan on January 7, and also have been seeing 3 doctors every 3 months - my Chemo Dr., a gynocologist oncologist (my cancer had invaded the vaginal wall as well as the rectum and sigmoid (sp.) colon), and the colo-rectal surgeon. At 3 months the colo-rectal surgeon did an outpatient procedure under anethesia where they look up inside me, and seemed stunned that nothing remained but scar tissue,as well as clean biopsies and a clean PET scan. (I think the Good Lord above had something to do with it). I had a rectal exam at 6 months with a speculum like they use for gynocological exams but not sure about an anoscope as I don't exactly know what that is. I have a feeling he did not use an anoscope.... It worries me that he didn't do that at 6 months to be honest with you. It seems that it depends on which Dr. I talk to on what kind of recommendation I get - the Chemo Dr. was the most positive, feeling that I was cured. One Radialogist Oncologist (Dr. Doom and Gloom I like to call him) told me I needed surgery with a permanent colostomy even before I got out of the hospital during my two-week stay there after my second chemo, which I thought was outrageous and cruel. The Colo-rectal surgeon didn't seem to want to jump to surgery, I think he was just telling me the "recommendation" given I guess to anyone who can't complete the radiation, he said we need to keep a very close eye on you.... Another Radiation Oncologist I saw three months after my treatments ended (because I refused to go back and listen to Dr. Doom and Gloom after his sadistic visit to me in the hospital) said, who is to say that 30 is the magic number of treatments, I think you will be fine. My husband and I are both hoping, since the chemo was SO HARD on me at a cellular level and put me in the hospital twice, that the treatment was equally as effective at killing all the cancer cells. So now I'm trying to "give back" since there must be a reason the Good Lord is allowing me to still be here...... ANYWAY, I'm trying to keep the nagging worry at bay that this will come back, just as everyone who has been through this goes through I am sure. Like I said, you are an AWESOME lady, and thank you so much for your response! This site is wonderful and has helped me immensely!!!!
  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #5
    Jo Joy said:

    Number of treatments
    I trust my radiation oncologist explicitly and she has only ordered 25 treatments for me. She is young but graduated with her undergraduate and medical degree from Harvard. She then did her residency at University of California San Francisco as chief resident where she treated more than the average cases of anal cancer. She has also done research at NIH under a fellowship.I also want to add that she is one of the most caring doctor I have ever met next to my chemotherapy oncologist.

    So when she ordered 25 treatments I was confident she knew what she was doing. My staging was I to II. They aren't sure how deep it was and so staging wasn't specific. What they could see of the tumor was 1.5 cm. My chemo oncologist said that sometimes you have to take what the colorectal surgeon says with caution because they like to do surgery.

    If surgery is what is recommended I would consult with your oncologists and a different surgeon they would recommend.

    Thanks so much.
    Thanks very much for your response. It makes sense to me that someone at Stage I or II would need less radiation than someone at a more advanced stage like mine. I will definitely be getting a second opinion if this cancer comes back. (And actually this colo-rectal surgeon would not be the one to do this surgery anyway - they've already told me they would send me somewhere else). It's basically a monitoring and "wait and see" game now. I am glad you like your Drs. - I too found my Chemo Oncologist and almost everyone involved in this whole process to be wonderful, especially the nurses. I wish you all the best in your treatment. It sounds like you are in very good hands.
  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    islandgirlculebra said:

    Thank you so much. I have
    Thank you so much. I have read many posts recently since I discovered this site. I would like to tell you that you are a special person, an awesome lady, and are an inspiration to many of us, I am sure. You have a special gift for compassionately and intelligently getting information to people.....I am getting a PET Scan on January 7, and also have been seeing 3 doctors every 3 months - my Chemo Dr., a gynocologist oncologist (my cancer had invaded the vaginal wall as well as the rectum and sigmoid (sp.) colon), and the colo-rectal surgeon. At 3 months the colo-rectal surgeon did an outpatient procedure under anethesia where they look up inside me, and seemed stunned that nothing remained but scar tissue,as well as clean biopsies and a clean PET scan. (I think the Good Lord above had something to do with it). I had a rectal exam at 6 months with a speculum like they use for gynocological exams but not sure about an anoscope as I don't exactly know what that is. I have a feeling he did not use an anoscope.... It worries me that he didn't do that at 6 months to be honest with you. It seems that it depends on which Dr. I talk to on what kind of recommendation I get - the Chemo Dr. was the most positive, feeling that I was cured. One Radialogist Oncologist (Dr. Doom and Gloom I like to call him) told me I needed surgery with a permanent colostomy even before I got out of the hospital during my two-week stay there after my second chemo, which I thought was outrageous and cruel. The Colo-rectal surgeon didn't seem to want to jump to surgery, I think he was just telling me the "recommendation" given I guess to anyone who can't complete the radiation, he said we need to keep a very close eye on you.... Another Radiation Oncologist I saw three months after my treatments ended (because I refused to go back and listen to Dr. Doom and Gloom after his sadistic visit to me in the hospital) said, who is to say that 30 is the magic number of treatments, I think you will be fine. My husband and I are both hoping, since the chemo was SO HARD on me at a cellular level and put me in the hospital twice, that the treatment was equally as effective at killing all the cancer cells. So now I'm trying to "give back" since there must be a reason the Good Lord is allowing me to still be here...... ANYWAY, I'm trying to keep the nagging worry at bay that this will come back, just as everyone who has been through this goes through I am sure. Like I said, you are an AWESOME lady, and thank you so much for your response! This site is wonderful and has helped me immensely!!!!

    islandgirlculebra
    You are so very kind and I appreciate your comments to me. It makes me feel good to know that I can have some positive impact on someone who is walking the same path as I have walked. I truly believe in paying it forward and it sounds like you do too, which is awesome! I hope that you will receive nothing but good news in your quest for answers and hope that surgery is not necessary. Please keep us posted. We are individuals, but we are all in this together. Take good care!

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