Metasticized to liver, need encouragement please

My husband, mother-in-law, and Imet with my surgeon so he cpuld take a quick look at progress and discuss prep for my Oct. 3rd surgery to remove my large rectal tumor.  He shared the results of the CT scan which revealed a small tumor on my liver and another near the perinium (sp?).  After 28 radiation treatments and Xeloda I feel so defeated.  The main tumor shrank a little, but it's aggressive.  

I still look forward to having it removed, but the surgeon now is unsure about temporary ileostomy or permanent colostomy.  He will know when he and the team operate.

I will focus on the surgery for now as that is critical to my chances of defeating this monster.  Some days it's so hard to be positive with all the unknowns we face.

 

-- Beth

Comments

  • airborne72
    airborne72 Member Posts: 303 Member
    Stay Focused

    Hang tough Beth!  This is a true test of character.  One moment at a time.

    Jim

  • BRHMichigan
    BRHMichigan Member Posts: 368

    Stay Focused

    Hang tough Beth!  This is a true test of character.  One moment at a time.

    Jim

    Thanks so much, Jim.  I

    Thanks so much, Jim.  I cannot let this break me.  

  • PamRav
    PamRav Member Posts: 348 Member
    Stay tough

    Which ever surgery you end up with, at least that tumor will be out of your body and that’s step one to a cure.   The liver mets can be treated surgically, with radiation or chemo.  Lots of options there depending on the size and location.

    Dont get discouraged, this is a long and winding path tha we are all on. Lots of twists and turns. 

    Good luck to you

    pam

  • NHMike
    NHMike Member Posts: 213 Member
    edited September 2017 #5
    Hello Beth,

    Hello Beth,

    This is a setback and it's the part that scares me so much - what happens if there's spread between diagnosis and treatment and treatment and surgery. It sounds like you're a pretty tough lady and the only option is to move forward with the surgery and then deal with the other problem afterwards. I've seen many others get through this - but you're right, not news that you wanted to hear.

    mike

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited September 2017 #6
    NHMike said:

    Hello Beth,

    Hello Beth,

    This is a setback and it's the part that scares me so much - what happens if there's spread between diagnosis and treatment and treatment and surgery. It sounds like you're a pretty tough lady and the only option is to move forward with the surgery and then deal with the other problem afterwards. I've seen many others get through this - but you're right, not news that you wanted to hear.

    mike

    Thanks, Mike.

    Thanks, Mike.

    You are so right.  I need to keep on keeping on, one hurdle at a time.  Just so discouraged that the neo radiation & chemo didn't help.  I am fairly sure my cancer is genetic, which I understand responds better to more aggressive chemo.  

    Time to take out 'the mother ship' **** tumor on Oct. 3.  Recover from that and start the 5FU.  

    Also I am very inspired by all of ypur fitness posts.  Increasing my activity is going to be vital to my healing.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    PamRav said:

    Stay tough

    Which ever surgery you end up with, at least that tumor will be out of your body and that’s step one to a cure.   The liver mets can be treated surgically, with radiation or chemo.  Lots of options there depending on the size and location.

    Dont get discouraged, this is a long and winding path tha we are all on. Lots of twists and turns. 

    Good luck to you

    pam

    Thank you, Pam.

    Thank you, Pam.

    I am focusing on my upcoming surgery.  And trying to LIVE more as opposed to laying around being depressed which is not living life to its fullest.

  • ROSPE123
    ROSPE123 Member Posts: 7
    Please don't give up

    My dad's journey just started, but one thing we've learned is that there is always HOPE. I will say a prayer for you tonight. Hang TOUGH!

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    Prayers going your way. Never

    Prayers going your way. Never give up. I was stage 11 then stage 1V and am currently ned. the doctors don't know what happened. Miracles DO happen. Keep positive.

  • NHMike
    NHMike Member Posts: 213 Member
    edited September 2017 #10

    Thanks, Mike.

    Thanks, Mike.

    You are so right.  I need to keep on keeping on, one hurdle at a time.  Just so discouraged that the neo radiation & chemo didn't help.  I am fairly sure my cancer is genetic, which I understand responds better to more aggressive chemo.  

    Time to take out 'the mother ship' **** tumor on Oct. 3.  Recover from that and start the 5FU.  

    Also I am very inspired by all of ypur fitness posts.  Increasing my activity is going to be vital to my healing.

    I think that the chemo and

    I think that the chemo and radiation did help me. I feel quite good right now and probably would be in agony or dead without the radiation and chemo. So in the worst case, it bought me time.

    Did you get the genetic testing done? It's highly likely that you got the IHC testing done (seems to be routine) to rule out Lynch. The genetic testing can tell you a few other things such as which drugs won't work in your case. I did get the results of the genetic testing (tested a really big number of genes) and there wasn't anything useful from a clinical perspective. But my data will go into their research database, perhaps to help people in the future. They found two mutations that haven't been researched before and don't know whether the help, hurt or are benign.

    I wish you well in your upcoming surgery and do pray for you of course.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Surgery

    Surgery is your best option to get this defeated.  Mine was in the rectum and they took out the whole rectum and made my descending colon into a new rectum.  I'm wondering if your doctor has addressed this issue with you.  They call it a J-pouch.  They gave me a temporary ileostomy and had it reversed 7 months later.  Wishing you well and hoping that your surgery is a complete success.

    Hugs!  Kim

  • BRHMichigan
    BRHMichigan Member Posts: 368
    NHMike said:

    I think that the chemo and

    I think that the chemo and radiation did help me. I feel quite good right now and probably would be in agony or dead without the radiation and chemo. So in the worst case, it bought me time.

    Did you get the genetic testing done? It's highly likely that you got the IHC testing done (seems to be routine) to rule out Lynch. The genetic testing can tell you a few other things such as which drugs won't work in your case. I did get the results of the genetic testing (tested a really big number of genes) and there wasn't anything useful from a clinical perspective. But my data will go into their research database, perhaps to help people in the future. They found two mutations that haven't been researched before and don't know whether the help, hurt or are benign.

    I wish you well in your upcoming surgery and do pray for you of course.

    Thank you, Mike.  I really

    Thank you, Mike.  I really should ask about genetic testing.  Am super hopeful the tumors will respond to the stronger chemo.  I always appreciate your encouragement.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    ROSPE123 said:

    Please don't give up

    My dad's journey just started, but one thing we've learned is that there is always HOPE. I will say a prayer for you tonight. Hang TOUGH!

    Such great advice.  I met

    Such great advice.  I met with my Oncologist yesterday with a written list of questions.  At the bottom I wrote HOPE and FIGHT in big letters.  I'm working on my attitude and exercise.  

    I will keep your dad in my prayers.  Sounds like he has a wonderful doc (and daughter).

  • BRHMichigan
    BRHMichigan Member Posts: 368

    Prayers going your way. Never

    Prayers going your way. Never give up. I was stage 11 then stage 1V and am currently ned. the doctors don't know what happened. Miracles DO happen. Keep positive.

    WWhat a beautiful testimony

    WWhat a beautiful testimony you have, Sandy.  I need to rest my worries at the foot of the cross and start living again.  Thank you for the encouragement.  And continued good health to you!

  • BRHMichigan
    BRHMichigan Member Posts: 368

    Surgery

    Surgery is your best option to get this defeated.  Mine was in the rectum and they took out the whole rectum and made my descending colon into a new rectum.  I'm wondering if your doctor has addressed this issue with you.  They call it a J-pouch.  They gave me a temporary ileostomy and had it reversed 7 months later.  Wishing you well and hoping that your surgery is a complete success.

    Hugs!  Kim

    Hi, Kim!

    Hi, Kim!

    Since my tumor didn't shrink much the surgeon is now preparing me for the possibility of a permanent colostomy.  He just can't be sure anymore about promising the temporary ileostomy.  So I will wake up and know my fate.  I trust him & his team and know they'll make the best decision for my future.  This used to terrify me but not so much anymore.  I want to be here for my family.

    You are a great inspiration.  I appreciate all of you sharing what you have endured.  It gives me great hope!!  

     

  • NHMike
    NHMike Member Posts: 213 Member
    edited September 2017 #16

    Hi, Kim!

    Hi, Kim!

    Since my tumor didn't shrink much the surgeon is now preparing me for the possibility of a permanent colostomy.  He just can't be sure anymore about promising the temporary ileostomy.  So I will wake up and know my fate.  I trust him & his team and know they'll make the best decision for my future.  This used to terrify me but not so much anymore.  I want to be here for my family.

    You are a great inspiration.  I appreciate all of you sharing what you have endured.  It gives me great hope!!  

     

    This is what my surgeon told

    This is what my surgeon told me from the start. She would decide when she's in there unless the MRI indicated that it would be permanent (she would have no choice).

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited September 2017 #17
    NHMike said:

    This is what my surgeon told

    This is what my surgeon told me from the start. She would decide when she's in there unless the MRI indicated that it would be permanent (she would have no choice).

    So many of us going through

    So many of us going through this together.  Mike, I went to the gym and swam today for the first time in months.  My energy and exercise are coming back.  So pleased as I think activity is important in the fight. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member

    Hi, Kim!

    Hi, Kim!

    Since my tumor didn't shrink much the surgeon is now preparing me for the possibility of a permanent colostomy.  He just can't be sure anymore about promising the temporary ileostomy.  So I will wake up and know my fate.  I trust him & his team and know they'll make the best decision for my future.  This used to terrify me but not so much anymore.  I want to be here for my family.

    You are a great inspiration.  I appreciate all of you sharing what you have endured.  It gives me great hope!!  

     

    Beth

    Thank you for the kind comments.  A permanent ostomy is nothing to be afraid of and I'm glad you are taking the attitude of wanting to be there for your family, even if it is an ostomy.  My concern to the doctor before doing the surgery was do what you have to in order to give me the best possible outcome of success.  He didn't know either what my outcome would be.  It's awesome that you trust your team - that is a huge part of your outcome.  You will be in my thoughts and prayers.  By the way, I'm from Michigan too. 

    Hugs!  Kim

  • NHMike
    NHMike Member Posts: 213 Member

    So many of us going through

    So many of us going through this together.  Mike, I went to the gym and swam today for the first time in months.  My energy and exercise are coming back.  So pleased as I think activity is important in the fight. 

    I'm glad to hear that you're

    I'm glad to hear that you're feeling better. Some of it is probably the effects of the radiation and chemo fading but it's good for the mental and physical health to get in a decent amount of activity.

  • betula
    betula Member Posts: 86
    Hi Beth

    I realize that you have already had surgery.  Praying for the best outcome!

    Betsy 

  • betula
    betula Member Posts: 86
    edited October 2017 #21
    Hang in there

    So glad you are able to be active at this time.  This can only help with recover and your spirits!

    Betsy