Back to the drawing board

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Lisa2012
Lisa2012 Member Posts: 142
in Colorectal Cancer #1

Today my TEM procedure ended without the removal of my tumor.  The surgeon said that she could not remove it safely...without leaving too large of a void and the best way to remove it would be a more standard colon resection surgery.  So she thinks that the recommended plan will be radiation, typical for rectal cancer, then surgery.  So as a stage IV colon cancer patient, now I guess I can add rectal cancer to my list of issues.   I have never had radiation...I will search for posts.

Feeling kinda sad tonight about this turn of events, but thankful for so many others blessings in my life.  Including friends, family, doctors.   My son graduates from college on Sunday!  Life is good even when it gets you down.

lisa

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  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #2
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    Oh damn, Lisa...

    I'm so sorry to read this.  I have always found the hardest moments in this journey to be the ones where you get your mind set for one thing, and then find out that it isn't workable.  It's very hard to get knocked back on your heels like that.

    I hope that the new plan, while more ardurous, will prove very effective and get things back on track for you.

    And on a happier note, big congrats on your son! What did he major in?

    PS feel free to tell to shut the f up (or words to that effect) when I complain.  I'm embarrassed to be on here talking about my piddly joint pains.

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #3
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    The wind beneath your wings

    I am so sorry, Lisa. It is good to sit back and feel that disappointment, hurt, frustration, sadness, fear that this kind of news brings. 

    Take your moments to absorb the emotions and roll with them. You know you'll pop right back up and into the battle just as soon as you feel you've mourned the loss of this particular road. 

    Radiation wasn't a good ride for me, but I have read many posts where others have not had so many problems. I personally feel that knowing what might happen is better than you going in with your eyes closed. I'll answer any questions you ask of me, but I won't list them until asked. I know some people wish not to know the worst. 

    Either way, you have to do it, and you will do it and we'll be with you every step of the way. 

    Enjoy Sunday and your Son's graduation. I admire all who take the opportunity to further their education. 

    Big cyber hugs, Lisa image.

     

  • Lisa2012
    Lisa2012 Member Posts: 142
    #4
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    annalexandria said:

    Oh damn, Lisa...

    I'm so sorry to read this.  I have always found the hardest moments in this journey to be the ones where you get your mind set for one thing, and then find out that it isn't workable.  It's very hard to get knocked back on your heels like that.

    I hope that the new plan, while more ardurous, will prove very effective and get things back on track for you.

    And on a happier note, big congrats on your son! What did he major in?

    PS feel free to tell to shut the f up (or words to that effect) when I complain.  I'm embarrassed to be on here talking about my piddly joint pains.

     

    Thanks

    I am working on a plan today, it just takes coordination.   Thanks for understanding .... That is why I love this place.  You are free to complain here, joint pain is no fun, so complain away!  I would never tell you to be quiet.

    My son studied music education and would like to be a high school band teacher...I am excited about his graduation as it is a time for family to get together, and I relish those moments.

  • Lisa2012
    Lisa2012 Member Posts: 142
    #5
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    Trubrit said:

    The wind beneath your wings

    I am so sorry, Lisa. It is good to sit back and feel that disappointment, hurt, frustration, sadness, fear that this kind of news brings. 

    Take your moments to absorb the emotions and roll with them. You know you'll pop right back up and into the battle just as soon as you feel you've mourned the loss of this particular road. 

    Radiation wasn't a good ride for me, but I have read many posts where others have not had so many problems. I personally feel that knowing what might happen is better than you going in with your eyes closed. I'll answer any questions you ask of me, but I won't list them until asked. I know some people wish not to know the worst. 

    Either way, you have to do it, and you will do it and we'll be with you every step of the way. 

    Enjoy Sunday and your Son's graduation. I admire all who take the opportunity to further their education. 

    Big cyber hugs, Lisa image.

     

    Thanks

    I know that you are removing from surgery too, so I appreciate you taking time to respond.  I started to write you a PM about your radiation experience, but I stopped to gather my questions.   I really have no information right now, so I will bother you later, you can count on that.

    hope you are feeling well and on your way to better days

    Lisa

  • carrieh
    carrieh Member Posts: 146 Member
    #6
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    Lisa2012 said:

    Thanks

    I know that you are removing from surgery too, so I appreciate you taking time to respond.  I started to write you a PM about your radiation experience, but I stopped to gather my questions.   I really have no information right now, so I will bother you later, you can count on that.

    hope you are feeling well and on your way to better days

    Lisa

    Lisa

    I'm sorry this is happening to you. For most people radiation seems to turn out okay. For me, not so much..but I don't want to scare you...because you need to do what you have to for your health. It doesn't hurt, it's quick everyday, and the techs are pretty good about keeping your backside covered. I used to joke with the girls who did mine that they saw my bootie more than my boyfriend. I cried when they put the tattoos on; it made it so real.

    You will probably feel really fatigued after a few weeks of it, but it does end. Read about every side effect that could happen; that might make you cry too..but it's better to be aware. There's a movie about colorectal cancer called a little bit of heaven that's sad and sweet, the main character says, "I never thought my butt would try to kill me." Do you mind if I ask you, do you have any belly fat? With radiation, the more fat the better..it diffuses the radiation a bit and helps to keep it from damaging other healthy tissues. Anyway, keep us updated. You should read a book called, There's no place like hope. It's the most inspirational book about cancer that I've ever read. You can do this!! Your strong and beautiful; cancers got nothing on you! I've never hurt another living thing in all my life, but right now I want to literally KICK THE **** out of your cancer!

    Squishy Hugs

    Carrie

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #7
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    Lisa2012 said:

    Thanks

    I am working on a plan today, it just takes coordination.   Thanks for understanding .... That is why I love this place.  You are free to complain here, joint pain is no fun, so complain away!  I would never tell you to be quiet.

    My son studied music education and would like to be a high school band teacher...I am excited about his graduation as it is a time for family to get together, and I relish those moments.

    Music education, very cool!

    I hope you have a wonderful time at the graduation.  Those special little moments (or big, in this case) with my family helped keep me going.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #8
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    carrieh said:

    Lisa

    I'm sorry this is happening to you. For most people radiation seems to turn out okay. For me, not so much..but I don't want to scare you...because you need to do what you have to for your health. It doesn't hurt, it's quick everyday, and the techs are pretty good about keeping your backside covered. I used to joke with the girls who did mine that they saw my bootie more than my boyfriend. I cried when they put the tattoos on; it made it so real.

    You will probably feel really fatigued after a few weeks of it, but it does end. Read about every side effect that could happen; that might make you cry too..but it's better to be aware. There's a movie about colorectal cancer called a little bit of heaven that's sad and sweet, the main character says, "I never thought my butt would try to kill me." Do you mind if I ask you, do you have any belly fat? With radiation, the more fat the better..it diffuses the radiation a bit and helps to keep it from damaging other healthy tissues. Anyway, keep us updated. You should read a book called, There's no place like hope. It's the most inspirational book about cancer that I've ever read. You can do this!! Your strong and beautiful; cancers got nothing on you! I've never hurt another living thing in all my life, but right now I want to literally KICK THE **** out of your cancer!

    Squishy Hugs

    Carrie

     

    God bless my Gustave Dore belly

    Do you mind if I ask you, do you have any belly fat? With radiation, the more fat the better..it diffuses the radiation a bit and helps to keep it from damaging other healthy tissues.

    That is interesting information about belly fat. 

    I am now glad that I have the Gustave Dore belly and not the Twiggy look.

  • Lisa2012
    Lisa2012 Member Posts: 142
    #9
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    carrieh said:

    Lisa

    I'm sorry this is happening to you. For most people radiation seems to turn out okay. For me, not so much..but I don't want to scare you...because you need to do what you have to for your health. It doesn't hurt, it's quick everyday, and the techs are pretty good about keeping your backside covered. I used to joke with the girls who did mine that they saw my bootie more than my boyfriend. I cried when they put the tattoos on; it made it so real.

    You will probably feel really fatigued after a few weeks of it, but it does end. Read about every side effect that could happen; that might make you cry too..but it's better to be aware. There's a movie about colorectal cancer called a little bit of heaven that's sad and sweet, the main character says, "I never thought my butt would try to kill me." Do you mind if I ask you, do you have any belly fat? With radiation, the more fat the better..it diffuses the radiation a bit and helps to keep it from damaging other healthy tissues. Anyway, keep us updated. You should read a book called, There's no place like hope. It's the most inspirational book about cancer that I've ever read. You can do this!! Your strong and beautiful; cancers got nothing on you! I've never hurt another living thing in all my life, but right now I want to literally KICK THE **** out of your cancer!

    Squishy Hugs

    Carrie

     

    Thanks

    Carrie, I appreciate the recommendations, I will look up the book and the movie.

    interesting observation about the belly fat thing.   I'd say I'm more on the slight side, hopefully not a big deal.

    thanks for the hug!

    lisa

  • carrieh
    carrieh Member Posts: 146 Member
    #10
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    Trubrit said:

    God bless my Gustave Dore belly

    Do you mind if I ask you, do you have any belly fat? With radiation, the more fat the better..it diffuses the radiation a bit and helps to keep it from damaging other healthy tissues.

    That is interesting information about belly fat. 

    I am now glad that I have the Gustave Dore belly and not the Twiggy look.

    Yeah, I am super tiny..always

    Yeah, I am super tiny..always have been even though I pig outLaughing but radiation obliterated my small intestine (which was fine, no cancer)...radiation enteritis...they thought I was going to die and put me on hospice, told me I had three days to live. Surgery didn't work the first time because my intestines were like ash, jut falling apart in the surgeons hands. after being sent home, I didn't die..went back to hospital..crazy sick though...said ok..since im not dead can we try again? Second surgery worked but I lost a lot of small intestine and almost all of my colon. I didn't know that they have more problems with this happening to really thin people until after it happened to me. Thanks for the info now doctors...as you tell me I'm not going to make it. Pretty darn scary. I don't think it's a super common occurence at all...don't know the stats. All I know is that belly fat helps protect you. Hey, here's a good reason to eat some fattening foodSealed

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #11
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    Dear Lisa,

    I was 48 when diagnosed with rectal cancer and went through radiation first. For me almost no side effects. I used Bio oil several times a day and that's it. As I understand it it is harder on women because of the anatomical differences.

    I suggest you go to the Anal cancer group where almost everybody is female and they all had radiation. They are extremely nice.

    Im really rooting for you that everything turns out good.

    Laz

  • Lisa2012
    Lisa2012 Member Posts: 142
    #12
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    lp1964 said:

    Dear Lisa,

    I was 48 when diagnosed with rectal cancer and went through radiation first. For me almost no side effects. I used Bio oil several times a day and that's it. As I understand it it is harder on women because of the anatomical differences.

    I suggest you go to the Anal cancer group where almost everybody is female and they all had radiation. They are extremely nice.

    Im really rooting for you that everything turns out good.

    Laz

    Bio oil?

    I have my appointment in the morning.   I am a bit nervous.  What exactly is bio oil?

    thanks for the advice Laz.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #13
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    Lisa2012 said:

    Bio oil?

    I have my appointment in the morning.   I am a bit nervous.  What exactly is bio oil?

    thanks for the advice Laz.

    I use Bio Oil

    It smells wonderful, and works like a dream. Its a little expensivie but last a long time. 

    On the bottle its says it can be used for Scars, Stretch Marks, Uneven skin tone, aging skin and dehydrated  skin.  I use it on my many scars, and use it almost every day. 

     

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #14
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    Lisa2012 said:

    Bio oil?

    I have my appointment in the morning.   I am a bit nervous.  What exactly is bio oil?

    thanks for the advice Laz.

    Bio-oil...

    Is at target or at Costco. It's an oil with vitamin A and E For skin moisterizing and regeneration. This is critical because radiation burns the skin and demages the glands in the skin that's supposed to moisterize it naturally. Start a few days before the treatment so it becomes a routine. I was lucky with my radiation: almost no side effects and it killed all the tumor which was the size of a walnut. This way the surgery was more safe and effective.

    Again, talk to the ladies at the Anal cancer group. They have a lot of good insights.

    Laz

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    #15
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    Hi Lisa

    Very sad to have an occurence like this in your resume.  I have a problem with negativity in the care team at the moment.  Not as a search for sympathy, my last surgery was a bust as well and the recurrence is vengeful.  

    I personally believe thath an upbeat attitude and open mind are my  best tools.  Knowledge about treatments and disease process are part of my repertiore that is not always appreciated.  At times the term doctor is appended to my name rather cynically.  I think it was Tru Brit that mentioned a comment in her records with positive affirmation of her acquired knowledge of the disease.  

    This is the best place I have found to get routinely dependable information and support.  However, it may be a good idea to take Laz's suggestion and visit the Anal Cancer section; they are mostly female, which I am not, and truly helpful IMHO.  

    ((HUGS))

    Art

  • Lisa2012
    Lisa2012 Member Posts: 142
    #16
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    lp1964 said:

    Bio-oil...

    Is at target or at Costco. It's an oil with vitamin A and E For skin moisterizing and regeneration. This is critical because radiation burns the skin and demages the glands in the skin that's supposed to moisterize it naturally. Start a few days before the treatment so it becomes a routine. I was lucky with my radiation: almost no side effects and it killed all the tumor which was the size of a walnut. This way the surgery was more safe and effective.

    Again, talk to the ladies at the Anal cancer group. They have a lot of good insights.

    Laz

    So I went to visit the other board

    A nice woman from the Anal cancer board told me to make sure to remove all lotion or oil before radiation otherwise it makes things worse?    She also told me that there is a difference between rectal and anal cancer which I really didn't know.   So much to learn,   Thanks for the support.

    lisa

  • Lisa2012
    Lisa2012 Member Posts: 142
    #17
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    fatbob2010 said:

    Hi Lisa

    Very sad to have an occurence like this in your resume.  I have a problem with negativity in the care team at the moment.  Not as a search for sympathy, my last surgery was a bust as well and the recurrence is vengeful.  

    I personally believe thath an upbeat attitude and open mind are my  best tools.  Knowledge about treatments and disease process are part of my repertiore that is not always appreciated.  At times the term doctor is appended to my name rather cynically.  I think it was Tru Brit that mentioned a comment in her records with positive affirmation of her acquired knowledge of the disease.  

    This is the best place I have found to get routinely dependable information and support.  However, it may be a good idea to take Laz's suggestion and visit the Anal Cancer section; they are mostly female, which I am not, and truly helpful IMHO.  

    ((HUGS))

    Art

    Thanks

    Art,

    luckily I believe that my doctors are supportive.  They call me at off hours and I have all of their personal cell numbers.  I wish I was more educated but I have found that spending too much time focusing on cancer isn't beneficial to me.   Don't get me wrong, I do my research and I learn what I can, but I have not made cancer my life, I have simply incorporated the treatment of it into my busy schedule and I try my best not to let it stop me from doing anything.

    This week, this news just let me down.  I was so excited about the next few months and now I am not.   It stinks!

    thanks for your time, comments, support.

    lisa

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #18
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    lp1964 said:

    Bio-oil...

    Is at target or at Costco. It's an oil with vitamin A and E For skin moisterizing and regeneration. This is critical because radiation burns the skin and demages the glands in the skin that's supposed to moisterize it naturally. Start a few days before the treatment so it becomes a routine. I was lucky with my radiation: almost no side effects and it killed all the tumor which was the size of a walnut. This way the surgery was more safe and effective.

    Again, talk to the ladies at the Anal cancer group. They have a lot of good insights.

    Laz

    Mustn't

    You mustn't use anything on the day of radiation though. 

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #19
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    Lisa2012 said:

    Thanks

    Art,

    luckily I believe that my doctors are supportive.  They call me at off hours and I have all of their personal cell numbers.  I wish I was more educated but I have found that spending too much time focusing on cancer isn't beneficial to me.   Don't get me wrong, I do my research and I learn what I can, but I have not made cancer my life, I have simply incorporated the treatment of it into my busy schedule and I try my best not to let it stop me from doing anything.

    This week, this news just let me down.  I was so excited about the next few months and now I am not.   It stinks!

    thanks for your time, comments, support.

    lisa

    Dear Lisa,

    You have just received bad news and you are in the stage of anticipation of not knowing what exactly is gonna happen. Once you know and start treatment you are gonna feel much better. You are a tough women, been through a lot and you will get through this as well. We are all rooting for you and support you.

    Yes: most anal cancer are from the outside skin and squamous carcinomas. Their treatment most of the time is "only" radiation and chemo. 

    All the best,

    Laszlo

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #20
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    Lisa2012 said:

    Thanks

    Art,

    luckily I believe that my doctors are supportive.  They call me at off hours and I have all of their personal cell numbers.  I wish I was more educated but I have found that spending too much time focusing on cancer isn't beneficial to me.   Don't get me wrong, I do my research and I learn what I can, but I have not made cancer my life, I have simply incorporated the treatment of it into my busy schedule and I try my best not to let it stop me from doing anything.

    This week, this news just let me down.  I was so excited about the next few months and now I am not.   It stinks!

    thanks for your time, comments, support.

    lisa

    Dealing with recurrence

    really and truly sucks.  I found out, after 6 months of FOLFOX, that it hadn't worked and that I was facing significant spread.  I can still remember so clearly sitting in the hospital room prior to yet another emergency surgery, with the surgeon talking to me about the reality of the situation I was in...ugh.  Calling my husband and giving him that particular update was brutal.

    We're here for you, Lisa.  Sending you strength and love to get through this and out the other side.

  • carrieh
    carrieh Member Posts: 146 Member
    #21
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    annalexandria said:

    Dealing with recurrence

    really and truly sucks.  I found out, after 6 months of FOLFOX, that it hadn't worked and that I was facing significant spread.  I can still remember so clearly sitting in the hospital room prior to yet another emergency surgery, with the surgeon talking to me about the reality of the situation I was in...ugh.  Calling my husband and giving him that particular update was brutal.

    We're here for you, Lisa.  Sending you strength and love to get through this and out the other side.

    That's great that you aren't

    That's great that you aren't letting it overload you with fear or control your life. You seem like a really happy sweet person. The more of that you have, the easier it is to take the bad stuff and shake it off. Hope today finds you well

    Carrie

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